Mothering by the Seat of My Pants

Ten Reasons Why I Haven't Posted Since May

2011-07-08T07:50:00.017-04:00

1. Katherine was captain for a Relay for Life team,, and the whole family was busy fundraising, planning, and participating in this great event. Her team raised over $2500.

2. Boat is back in the water--that comes with some added work, but lots of opportunities for added fun.

3. Katherine graduated from middle school. We had dresses to shop for, ceremonies to attend, parties to host. Oh, and I took the girls to see two concerts in June--sort of as a graduation present. We saw Glee on Tour and Taylor Swift!

4. School ended. I was class mom for Julia and John's classes, and was on the executive board for Julia's school PTA and our town's Special Education PTA (I have trouble saying "no" to volunteering). Anyone who has been a class mom knows that end of year brings some added work--planning class parties, coordinating teacher's gifts, etc.

Being on the PTA can also be time consuming at end of year, especially when the school budget is being cut by 2.8 million dollars. I spent a good amount of time writing to local politicians, commenting on blogs, attending long town meetings, pleading for some of the funding to be restored. Despite the PTAs best efforts, budget was still cut :(

Of course, the school year end brought all of the fun year end events like field day, year end concerts, and parties.

(John is wearing white tee shirt)

5. Having work done around the house this past spring. Had trees cut down, repair work done, now I just need to decide on a color to paint the house. Any suggestions?

6. Facebook. My Bejeweled Blitz addiction has been replaced with an obsession with Zuma Blitz.

7. The weather has been nice. Why be inside on the computer when you could be outside?

8. Been doing some celebrating. Mother's Day, Father's Day, Memorial Day, Fourth of July.

9. I sometimes feel like if I have time to blog, I also have time to clean out the closets. I am now proud to report that you can open our craft closet without the fear of being buried in an avalanche of beads, paints, wrapping paper, old art projects, yarn, polyfill, and Christmas, Valentine's Day and St. Patrick's Day decorations.

10. I haven't been particularly inspired to write anything I feel anyone would want to read (figured the photos might help keep your attention :)

On Motherhood

2011-05-09T07:25:00.003-04:00

I always knew I wanted to be a mother.

When I was little, I was the little girl who would get lost in the imaginary world of motherhood. I LOVED to play with baby dolls, and not just one or two babies, I had a bunch of little ones.

At night, I needed to make sure each of my dolls was in bed with me. I needed them close, not only because they were a source of comfort, but what if there was a fire? I needed to make sure all of my babies were within arms reach so I could bring them to safety.

I guess I have always been somewhat of a worrier. And what is that they say about old habits, they die hard.

I also knew that I wanted more than one or two children. Growing up, it was just me and my younger brother, and as much I loved my little brother, I always thought it would have been fun to have a sister or an older brother as well. I think my brother felt the same way as when he was preschooler he had an imaginary brother who lived in Florida; I think his name was Joe.

Or maybe I was just brainwashed into wanting a larger family; after all my favorite TV shows growing up included: The Brady Bunch, The Partridge Family, The Waltons, and Eight is Enough. While those families had their struggles, they always seemed so close. With an overabundance of kids, came an overabundance of activity and love.

As I grew older, my desire for a truck load of kids dwindled somewhat. 3 or 4 seemed like a much more manageable number than my original wish of six. After all, Mrs. Brady had her Alice, Mama Walton had Grandma and Grandpa to help out, Mrs. Partridge had that cool job that enabled her to work and take care of her kids, and Mr. Bradford (wasn't that the Eight is Enough dad's name?) seemed to have older kids who pretty much took care of themselves and him. It wasn't lost on me that kids meant work :)

I look back on that little girl dreaming of motherhood and think that she didn't have a clue what she was in for.

The thought of losing children never crossed her mind.

The thought of having a child who was disabled never crossed her mind.

The words prenatal testing, biological clock, abortion, and Down syndrome were not even in her vocabulary.

She didn't worry about paying for college, or sibling rivalry, or finding the time to make sure everyone's needs were met.

She didn't really consider how a husband and his needs and plans would play into the whole picture. Maybe she just figured he'd be like all of those TV dads who made it look so easy...even when it was hard.

I wonder what that little girl, the one who thought she would be done having her three or four kids by the time she was thirty would think of the 43 year old woman she has become.

The woman who has three beautiful children.

The woman who aches at times for the two babies who died inside of her.

The woman who is 43 and has a 4 year old...who has Down syndrome.

The woman who is married to a man who has held her hand and traveled this road of parenthood with her, even when this road, at times, has taken them through hell.

I wonder if she knew then what I know now, would her plans have changed? Would she have had her children earlier? Would she have wanted less children, more children, no children? Unlike the choice I made, would she have chosen to put her career ahead of being mother?

Being a mother and wife is who I am. Dare I say it defines me? I no longer work outside of the home. For the most part, my life revolves around my family, and I honestly, wouldn't want it any other way.

Motherhood

That is my trade.

It is the source of my greatest joy....yet at times, the cause of my greatest sorrows.

It challenges me...yet comforts me.

It humbles me...yet is the source of such pride.

It exhausts me...yet rejuvenates me.

It is complex...yet so simple.

Raising children. Seeing them grow, nurturing them, loving them. It requires ever tool in the book.

Patience, laughter, love, compassion, understanding, negotiation...all tricks of the trade.

Sometimes it helps to stop and remember what it was like when you were a chid, remember those innocent, little girl dreams.

Remember the ones that came true and the ones that have yet been fulfilled. Remember what it was like to be innocent of all of the bad things that can happen.

As a mother, I encourage my children to dream big dreams

All the while, helping them develop the tools they will need when life doesn't turn out exactly as they might have planned.

Motherhood has taught me that planning helps, but at the end of the day, sometimes, despite, your well laid plans, things can all fall apart.

Meltdowns are inevitable.

All you can do is take a deep breath.

Hold on to your children and remember.

It's all about the love.

Motherhood has made me a teacher and a student in the lessons of life

Oddly, the lessons I try to teach are sometimes the exact lessons that I am learning from my children.

And at the end of the day, be it an awesome, happy, incredible day or a tiring, horrible day

It is all about the love.

And thanks to my children and their father, my life as a mom is filled with an abundance of love.

Happy Belated Mother's Day

I

To Go or Not To Go--That Was the Question

2011-04-06T06:12:00.004-04:00

So I sit here at 6:12 am worried about my thirteen year old. See those kids with 46 chromosomes come with their share of worries too.

Today is the field trip she has been waiting years for. The big 8th grade field trip to Washington DC.

The trip where they are away from home for two nights, sharing a hotel room with their best friends.

Katherine has been so excited for this trip. From the day she started middle school, she has been waiting for this trip, and who could blame her? They are taking a coach bus to DC. They are spending three days touring the city and two nights in a hotel.

In the past, Katherine has not looked forward to being away from home. She is not the girl who wants to go to sleep away camp. She wasn't big on sleepovers when she was little. She likes having her people close. She likes the security of home.

On the one hand, this makes me feel good, knowing that we provide a sense of security and comfort for her. On the other hand, I want her to be independent. I want her to try new things.

Last night, she was suffering from an upset stomach, the exact cause of which has yet to be determined. Was it nerves? Was it the meat sauce I served for dinner? Or was she sick?

Given the situation, I would usually be quick to say it is nerves, but she was sick a couple of days ago. Almost fainted in the middle of her confirmation service on Sunday. After being home from school on Monday, she awoke yesterday ready to get back to her busy life. She spent the afternoon packing, choosing which outfits she was going to wear, texting her friends about the trip. She was excited.

Then she wasn't.

To quote Winnie Pooh, she had a "rumbly in her tumbly."

And she wasn't sure why. She wasn't sure if her mind was getting the best of her, thinking of all of the things that could go wrong, or if she was sick.

She started worrying. "What if I get sick". "What if I don't feel well on the bus". "What if I get home sick". "What if everything I eat makes me feel sick?" "I don't want to be that kid that throws up on the bus or spends the whole trip in bed."

There was very little positive thinking going on in that 13 year old's mind at 12:09am.

I tried to reassure her, but honestly, I wasn't sure what was going on with her either. It was possible that she could still be a little under the weather, but my feeling was she probably just ate too much and just the suggestion of stomach ache got her mind racing.

Yes, maybe she should miss the trip that she had been looking forward to for years.

But what if it was just anxiety? What if she didn't go and then ended up feeling fine later in the day?

It isn't as if DC is a quick drive from here.

This line of thinking just made her more anxious. We talked about if for a little while, but finally, I told her the best thing to do was try to sleep.

Talks resumed at 5:00am, and it was decided that her nerves were probably playing a big factor.

So off she went.

Her dad dropped her off at school before 6:00am, and he just emailed me that the buses pulled out at 6:25.

Now, I am doubting myself. Should I have assumed she might be getting sick again and just kept her home? A part of me felt like she wanted me to pull rank. She wanted me to make that unpopular decision so she didn't have to make it for herself.

As a parent, isn't it our responsibility to make the tough call?

I was so torn between wanting her to have the experience of this trip and wanting to keep her home where I knew she'd be safe.

I let her go.

Partially because I don't think she is really sick, and partially because I feared by that by keeping her home, I would be giving into her anxieties which in a way could be more harmful to her than forcing her to get on a bus with a rumbly tummy.

Fear is a healthy, natural response in certain situations, but you can't let it prevent you from doing things you really want to do.

I want her to be able to recognize her fears, but more so, I want her to be able to not give into them, especially, if they are standing in the way of her achieving something wonderful.

I know she wanted to go on this trip. I know she will have a great time once she is there.

Taking that first step is often the hardest part.

Sometimes you just need a little push.

As a parent, isn't it also our responsibility to give our kids that push?

We push them, and then close our eyes, hoping our little birds will fly...or at the very least that someone will be there to catch them, if they don't.

Happy World Down Syndrome Day

2011-03-21T09:25:00.002-04:00

Don't have a lot of time to write, but I wanted to share this information I received from the Down Syndrome Research and Treatment Foundation as time is of the essence:

Subject: The 3:1 Donation Match is Back for TODAY ONLY!

Dear Friends,

In honor of World Down Syndrome Day, we have two exciting pieces of news to share with you.

For TODAY ONLY, all of your donations to the plus15 campaign will be matched 3:1! That means that your donation of $15 becomes $60, $50 turns into $200, and $100 becomes $400! The last time we did a matching campaign we raised over $150,000 in a single day; our goal for today is to exceed that. Please join us in donating and spreading the word about this amazing opportunity to multiply your impact!

As part of our ongoing efforts to raise awareness about the need for more federal funding for Down syndrome research, we are doing a photo petition that we will send to members of Congress. Post a photo of yourself, or someone you love with Down syndrome, holding a handmade sign that says "One of Them is Me." That message is at the core of plus15's campaign (watch our video to see it in action at https://www.dsrtf.org/plus15). Then upload your photo to our plus15's facebook page or send it to plus15campaign@gmail.com. Our community has sent in some amazing photos so far, and we want you to join us!

If you want to learn more about Down Syndrome Research and Treatment Foundation’s progress and impact click here to read the latest newsletter. Thank you for all your support so far.

Happy World Down Syndrome Day,

The plus15 campaign team

Help spread the word, and Happy Down Syndrome Day.

Here's a photo of the little we are celebrating today (blowing out the candle on his birthday cupcake)

You Can Help an Orphan Today for Free!

2011-03-08T08:17:00.005-05:00

A few posts ago, I wrote about Danil and his forever family who raising money to bring him home. He is currently in an orphanage in Eastern Europe.

Well if you are on Facebook, here is an easy way that you can add $5.00 to Danil's adoption fund, and it won't cost you a dime!

Here's what you need to do:

1. Like the page http://on.fb.me/eWxXRq. This is for Kevin Kubota Photography.

2. Like the photo http://on.fb.me/ibnwTA. This is for the Laying Down Game WPPI 2011. This photo (which is hysterical) was submitted by Laurie's cousin, Megan. If she wins this game, money goes into Danil's adoption fund!

3. And while you are on FB, you can join the community, Adding to the Maddness and follow Danil's adoption process through FB.

If you click on the links above, you will hopefully be brought to the corresponding page in Facebook (it worked when I tried it.)

Here's the catch. You must do it NOW! Voting for the photos ends today, and if Megan doesn't win, Danil's adoption fund will not get the money.

Also, Laurie is raffling off an iPad 2 on Danil's adoption blog. Who wouldn't want to help an orphan and possibly win an iPad 2?! Not me!

Click HERE to enter!

Laurie is also offering bloggers a chance to win a $50 Target gift card. All you need to do is spread the word about the iPad raffle on your blog! Click HERE for details.

How cool is that? Pretty cool.

Ok, you've spent enough time here, go help bring Danil home :)

Darwin, Ds and Evolving Thoughts on Evolution

2011-03-04T10:41:00.005-05:00

So creation if is on one side of the "How did we get here" coin.

Evolution is on the other.

According do Dictionary.com, evolution, in regards to biology, is defined as:

"The change in the gene pool of a population from generation to generation by such processes as mutation, natural selection, and genetic drift."

Now how does Down syndrome fit in with the theory of evolution?

Well, I'm not 100% sure, but I've been mulling it over.

If your game, feel free to ramble this road with me as I try and put my thoughts into words. (remember I was an English/Poli Sci major, so feel free to correct my admittedly non scientific train of thought).

Down syndrome is usually caused by a mutation in either the egg or the sperm which causes an excess of the genetic material of the 21st chromosome. Mutations help a species evolve.

As far as know, most males with Down syndrome have been considered sterile so the chances of two people who have Ds having a child with Ds are pretty slim. Down syndrome is not passed down from generation to generation so no chance of evolution there.

The majority of embryos with Down syndrome are spontaneously aborted (miscarried); nonetheless, Down syndrome results in about 1 in 733 live births. That number would be higher if abortion did not factor into the picture.

Down syndrome is a relatively common condition in the human species. It belongs.

Abortion does factor in though. About 90% of embryos\fetuses with Down syndrome are aborted.

Years ago, before I was even pregnant with John, in the midst of a discussion on prenatal testing, my mother commented that she felt that some viewed/used abortion as a means of natural selection. (that's probably when the seed for this train of thought was planted.) My dad, who was also there, quickly added, down syndrome is not a reason to have an abortion :)

Now, my mom wasn't agreeing with the practice or defending it. She was just making an observation (the biology teacher in her was in full gear.)

Natural selection is key to Charles Darwin's theory of evolution, On The Origin of the Species.

According to Wikipedia, "Natural selection is the process by which traits become more or less common in a population due to consistent effects upon the survival or reproduction of their bearers. It is a key mechanism of evolution."

I disagreed with her observation.

Miscarriage is natural.

Abortion is not.

Abortion didn't seem to fit in with that definition of natural selection.

Darwin's theory of Survival of the Fittest did come to mind. The survival of one member of the species was at the mercy of another member, a member who was stronger and more powerful.

Wikipedia says, "Darwin first used Spencer's "survival of the fittest" as a synonym for natural selection in the fifth edition of On the Origin of Species, published in 1869.[2][3] Darwin meant it as a metaphor for "better adapted for immediate, local environment", not the common inference of "in the best physical shape"[4]. Hence, it is not a scientific description.[5]"

That definition seemed to make better sense to me. I do agree that individuals with Down syndrome are not better adapted for the immediate, local environment. Individuals with Down syndrome often need the support of others.

I think that, many times, the problem is more with the environment than with the individual with Down syndrome.

It is only natural for parents to want their children to be able to thrive in this world.

I am not denying that having a child who, at times, needs additional help to exist in his environment can be a bit stressful.

It's not all about concern for the child though. Parents, smart, fit, intelligent, selfish parents also worry about what effect a child with Down syndrome will have on their lives and the lives of their other children. That reaction, that gut reaction to protect yourself, is only natural.

It is what we do with that reaction that matters.

As the numbers indicate, most people who know prenatally that their child has Ds choose not to bring them into the world.

On the surface, I can see how the "survival of the fittest argument might apply". Fit parents wanting only fit children. I get it why people do it.

Personally, I don't think those who choose abortion are the most "fit" though.

I think fear, not strength, is what drives people to make what must be the gut wrenching and heart breaking decision not give their own child a chance to "survive."

I believe the truly "fit" parents are the ones that don't choose abortion.

These parents believe in their ability to adapt--a very desirable trait to have according to Darwin.

The stronger of the species are the ones who choose to let species evolve naturally.

Down syndrome is a natural and needed part of the human species.

Knowing, protecting, loving those members of our species who may not have the strongest genotype is what separates us from the animals that abandon or kill their weak.

It is the essence of what makes us human.

We have the power to change our environment to make it easier for all members of our species to thrive. (Sometimes it takes loving someone with Down syndrome to make this a priority.)

We have the power to change ourselves. (Sometimes it might take loving a child with Down syndrome to make this change happen.)

We have the power to adapt. (Sometimes our child with Down syndrome gives us no other choice.)

We have the power to further evolve. (Sometimes we may just need a catalyst to do so)

Maybe that's what Down syndrome is to the human species.

Down syndrome is our catalyst.

It forces others in the species to adapt and evolve, often at a quicker rate, while it's essence remains unchanged by evolution.

(A species probably just went extinct in the time it took for me to write, and for you to read, this post!)

Let's Start with Creation

2011-02-28T09:10:00.004-05:00

Since I have had John, I have thought a lot about Creation and Evolution. It is a topic of debate for some.

Was man created by a divine being, a higher power, God?

Or did we evolve in the natural world to be who we are today?

Now I am not writing this post to start a debate. I am writing just because having a child with Down syndrome, a child that is different than most, has made me question all that we think we know. Let's start with creation.

If you look at the Judeo-Christian story of creation. God created Adam and then Eve. He put them in the Garden of Eden, a paradise where they would have everything they needed to be happy.

There was one condition. There was tree in the middle of the Garden, and God told Adam and Eve that they must not eat from the fruit of this tree.

When I learned about the story of creation, the tree was called the Tree of Knowledge.

A serpent then came along and convinced Eve to eat from the Tree. He tempted her. Wouldn't it be wonderful to know what God knew? Wouldn't it be wonderful to have that intelligence that they were lacking? Why trust in God to make them happy when they could eat the fruit from the forbidden true, and decide from themselves.

Well Eve ate from the tree, convinced Adam to do the same, and the rest they say is history...

Paradise was gone, and the knowledge gained did not bring Adam and Eve eternal happiness. In fact, just the opposite happened. They became ashamed of their nakedness and tormented with the knowledge of what was lost.

Bet Adam and Eve felt that intelligence was a bit overrated. Maybe Adam was the first to coin that expression, "Ignorance is bliss."

We've all heard the generalization about people with Down syndrome "always being happy". Now John isn't always happy. He doesn't like it when he doesn't get his way just like anyone else; however, he doesn't seem to worry as much about things as my other kids did at the same age. Yes, he gets upset, but he is quick to recover. All it takes is something that makes him happy, and whatever bad feelings he might have had seem to be gone.

I am guessing that ability to "forgive and forget" may be in part to his intellectual disability. Now, at times this makes me sad; this realization that his intellect is limited, that he doesn't seem to have the capability to fully appreciate on what he can hold a grudge or stress over what he might be missing out on. Crazy huh? It makes me sad at times because my child is too easy going, too happy. Sounds ridiculous huh?

Maybe intellect can be as much of a curse as a blessing.

Maybe intellect is somewhat overrated by those of us who feel we possess it.

Adam and Eve craved knowledge, and look what happened to them.

I look at John and how he embraces life. I think about what makes him happy, and what makes him sad.

I then look at everyone else and how we get so tied up, at times with what others think, what others know. Our thoughts create stress. Thoughts about money. Thoughts about the future. Thoughts about work. Sometimes our intellect, our knowledge, is disabling.

It can disable our ability to appreciate all we have. It can disable our ability to just "be". It can disable our ability to just find happiness in the little things. Like having someone to come home to and hug at the end of a day.

Adam and Eve had paradise. Supposedly, they had it all.

And they lost it.

Can't help but think sometimes that if the story of creation is true (and I will leave it up to you to decide if it is) that God would want us to be more like individuals with Down syndrome.

Trusting

Loving

Quick to forgive

Finding happiness in the moment

Thankful for what they have

Well, if you made it through that rambling, stay tuned for an upcoming post about Evolution.

On Down syndrome

2011-02-18T08:52:00.006-05:00

I know that most people who come upon this blog, arrived here because of Down syndrome.

I think that is one of the reasons I stopped posting.

My feelings about Down syndrome are very complex. Contradictory almost. Light and Dark.

I am part of the Down syndrome community, not by choice. It is a whole new world, full of beauty and joy; yet, at times, full of the most raw grief.

Grief over sick children. Sick with a condition they might not have had had they not had Ds

Grief over children who died because of a condition they might not have had had they not had Ds

Grief over orphans forgotten and uncared for. Children who might have been part of loving families had they not had Ds

Grief over children who are never brought into this world because they have Ds.

Grief over children lost testing for Ds.

Grief over the prejudice that our kids often face because they have Ds

And, sometimes grief over the things my child can't do, may never be able to do.

Grief over what might have been if not for that extra chromosome.

Grief over what is not possible because of the Ds.

I am all for believing in the possible, but I'm also a realist, I know somethings will not be possible for my son because of the Ds, and it is such a source of sadness for me. I also appreciate that people don't want to hear that. I guess that is part of the reason why I stopped writing.

I could paint you a picture using just the bright, pretty colors of the rainbow, but gray is part of my palate of colors.

Thankfully, it has become a smaller part over the four incredible years that I have been John's mom.

I have my colorful, little guy to thank for that. Every time.

Every time he asks for a hug.

Every time he randomly plants a kiss.

Every time he smiles

Every time I hear his sisters tell him they love him

Every time he answers back "Wuv you"

Every time he asks for a cookie (or Fritos) for breakfast

Every time he says "Yay" when he gets something he wants

Every time he learns something new

Every time he says "Hi, mama" (which happens about 100 times a day)

Every time he asks to dance or sing

Every time he says "Oh man" when he is frustrated

Every time he asks for us to play his music in the car

Every time one of the first words out of his mouth in the morning is "Daddy" (usually after yelling "Ma" as a means of letting him out of his room)

Every time he laughs

Every time he tells us he is a "Silly Guy"

Every time I hear his sweet little voice. Even when it is saying "no" (which when he says it sounds like No Wa)

Yes, HE splashes our world with bright colors.

And the gray I spoke of?

Well, did you ever notice that what happens when you add a little gray or black to a painting?

Sometimes it can make the colors seem that much brighter, that much more clear and vivid.

That's what Ds, with all it's many colors, has done for our family.

It has brought clarity on what truly matters, even in the midst of the uncertainty it can bring.

It has added new colors to our rather predictable paint palate.

It has made the brightness that much brighter.

Then again, maybe it isn't the Ds.

Maybe it is just John, our sweet, silly, little guy.

Making Miracles

2011-02-17T12:48:00.004-05:00

While I haven't been writing on my blog, I have been checking in on my bloggy buddies. It is a good thing I did because if I hadn't, I would have missed some miracles in the making.

When I first starting blogging, one of the first blogs I started faithfully following was The Adventures of Ian and Chase. Laurie, the blog's author, and I connected because my John and her Chase both have Ds, and they are about the same age. Laurie is also very funny and her tellings of the adventures of her two boys Ian and Chase always puts a smile on my face. Laurie always keeps it real which I love and admire.

I watched as her family grew to include another little boy, Gavin. With his arrival so came the change in the name of her blog to Welcome to the Madd House. Maybe she knew then that including her children's first names in he blog title was a bad a idea because, you see, more children were going to be welcomed into the Madd House.

Like many other families who have had a child with Down syndrome, Laurie and her husband Bryan's eyes and hearts have been opened to the plight of children who were orphaned because they were born with an extra chromosome. In Eastern Europe, in particular, being an orphan with Down syndrome can be a death sentence. If these children are not adopted by the age of five, many are put into institutions where they are given the bare minimum of care.

Unlike many families (mine included), Laurie and Bryan are taking that extra step. That brave, beautiful, life affirming, step. They are bringing one of those orphans home. His name is Danil, and from his photo, it is easy to see why Laurie and Bryan were drawn to him. He is adorable, and he sounds like he will fit right in with his new brothers.

When I heard about this adoption, I thought back to an online conversation Laurie and I had years ago, about Down syndrome. How it occupied so much of our thoughts, how we worried about what the future and this world would bring to our boys. Back then, she didn't sound like a mom ready to have two children with Ds. Look how far she has come. She and her family are driven...

By the power of love?

By the power of God?

By the power of a child?

Maybe by the power of an extra chromosome.

Whatever the driving force may be, the result is miraculous, a little boy is going to have a home, a family, a future. It doesn't get any better than that!

If your heart has been opened, you can put your compassion into action. First of all you can go visit, Laurie's adoption website, aptly named, Adding to the Madd-ness. She is holding an online auction to help raise money for Danil's adoption. Take a look at great stuff she has an maybe place a bid on something. If you like, you an also make a donation to Danil's adoption fund through her website.

You can also visit Reese's Rainbow to learn more about their adoption ministry. There are photos on their website of children who are waiting to be adopted. Who knows, maybe there is a place in your life for one of these children.

Maybe you want to help raise money for their adoption fund.

Maybe you want to help spread the word about the plight of these orphans on your blog or in your community.

Maybe you just want to include these children in your prayers. (Another of my bloggy friends, Stephanie, at Our Daily Smiles
has been doing all of this!)

Maybe you will be so moved that in the eyes of one of these children, you will see the eyes of your child.

Maybe you will want to bring one of these children home.

Today's your chance to play a part in a miracle, don't pass it up.

Here's a photo of Danil--help bring him home to the Madd-House

Where to Begin?

2011-02-16T08:34:00.004-05:00

Where do you begin after not posting anything on your blog for 6 months?

I had written a post back in January giving a quick recap of what has been going on, but then I had problems uploading the photos I wanted to include, so alas the post never happened. Now it seems sort of outdated.

Maybe there is no need to catch up.

Maybe I can just start anew.

A fresh start is always good.

A new perspective.

That sometimes comes with a new year.

Or a new season.

I don't know about you, but I've had enough of this season. I am ready for Spring.

For the past few months, it seems we have been at the mercy of Mother Nature or maybe it is Old Man Winter.

Yes, we've a lot of snow in Connecticut this winter, and unlike in year's past, it never melted.

At first it was pretty. Impending storms were cause for excitement. The days off from school were welcomed.

Then the snow became a hassle. It messed up schedules, caused leaks in roofs, piled up at the side of the road, making driving a bit more treacherous. Cabin fever set in for many as it became too cold and the snow too deep for the kids to play outside.

After awhile, it made people restless. Having their lives disrupted, having to give up the control.

Life seemed to revolve around the weather. Something that can be somewhat unpredictable.

Sort of like raising a child.

You can prepare for it.

You can make predictions of how it will be.

You can hope for warm, calm, sunny days.

Sometimes you are caught by surprise though. Sometimes you might get snowed in. Scattered flurries turn into 6 inches of snow.

Sometimes the best you can do is just make accommodations. Throw on a pair of boots, grab a shovel, and dig a fresh path.

Sometimes you plow through.

Sometimes you give in and just play.

And other times, you just want to stay in bed.

Sometimes when dealing with the weather (and occasionally) kids, it helps to pause and take a moment to look beyond the inconveniences, the added stresses, the forced change in plans.

Take the time to fully appreciate the wonder.

Drink in the beauty of the ever changing landscape.

Where to Begin?

2011-02-16T08:34:00.001-05:00

How Does Your Garden Grow

2010-07-22T16:54:00.003-04:00

I love flowers. I love driving up to my house and being greeted by blooms.

Every March, as the ground begins to thaw, I look for the green stems of my daffodil bulbs, breaking through the earth, pushing themselves towards the sun, waking up after a long winter's rest. A sign of a new beginning.

I impulse buy flowers that line the entrance of the supermarket (just got patio pots for $1.50 today!), and plant them in the mulch bed in front of the house. I pull out the weeds and get rid of the dried leaves that hide under the bushes.

We lay new mulch to keep away the weeds. Our spring garden looks fresh and orderly. Filled with annuals, so I have a chance to change the color scheme each year, and perennials, so I have a guarantee that I will always have flowers.

The rituals of spring.

Spring turns into summer, and before I know it my garden is filled with weeds.

The blooms of yesterday are dried and dead on their stems.

For me, tending a garden isn't as much fun as planting one. After weeks (ok months) of neglect, there is work to be done.

Weeds need to be pulled. If they continue to grow wild, they will rob the flowers of sun, water and nourishment.

Flowers need to be dead headed so new blooms can burst.

Sometimes we need to pull out the hose and sprinkler because the ground is baking under the summer sun, plants thirsting for water.

Tending a garden can be tedious work.

You can dirty and sweaty, gardening in the hot sun.

If you put in the time and effort though, you are rewarded with beauty, the blooms of your labor.

Gardening is a lot like life. Sometimes you just need to make the time to do some weeding.

We all have weeds in our lives, things that take the nourishment and energy away from the flowers. These weeds can take many different forms. Maybe it is that extra 10 pounds that you really need to lose. Maybe it is that pile of mail that gathers on the counter that just makes you feel like your house is a mess. Maybe it is a relationship that just isn't working, and is bringing you down. Maybe it is a dead end job. Maybe it is all those things on the "to do" list that you have been putting off, yet need to be done. Weeds can be very resilient. They rarely just go away. Instead, they seem to multiply. Sometimes we are fooled because sometimes weeds can be quite pretty, but beware, don't be fooled by appearances.

Sometimes we need to deadhead the flowers too. Get rid of the old, so the new can grow.

Pull out your weeds.

Dead head your flowers.

Plant some annuals to bring a bit of excitement, and take comfort that your perennials will always be there.

Let the flowers of your life bloom, attract the butterflies, brighten your day, and fill your life with beauty.

"Give me odorous at sunrise a garden of beautiful flowers where I can walk undisturbed." ...Walt Whitman

Everyone Has A Gift

2010-07-21T14:14:00.002-04:00

I wanted to let you know about the blog, Everyone Has a Gift. This unique blog is written by Mary, a mom whose daughter just happens to have Down syndrome.

Everyone Has a Gift, however, is not specifically a blog about Down syndrome. As it's name implies, it focuses on the gifts that fill each of our lives, the gifts each person brings to this world. Something tells me, Mary's beautiful daughter Anna was her inspiration in creating her blog.

The unique thing about this blog is Mary asks people to share their stories. If you know someone whose special gift might be of interest to others, share it with Mary. She just might feature your story on her blog.

Mary also happens to be one of the chairs and founders of the New York City Romp for Research which raises money for the Down Syndrome Treatment and Research Foundation. Since it's founding in 2006, The Romp for Research has raised more than $500,00. The Down syndrome community has surely benefitted from the gifts Mary has shared through the creation and execution of this fun, fundraising event.

The date of this year's Romp for Research is October 3, 2010. If you are in the NY area, stop by!

It Must be a Kid Thing

2010-07-13T17:40:00.003-04:00

The minute John gets in the car, he asks for music. HIS music, which right now is a Signing Time CD.

If I turn down the volume to talk to the girls, he instantly asks for more music.

I had enjoyed that time when it was just the two of us in the car. Time when I didn't have to listen to what the girls wanted to listen to (aka Radio Disney). Now my music is on so rarely, I find myself forgetting to turn off the Signing Time CD when John isn't in the car.

To be fair, every once in awhile, if the music has a good beat, John will tolerate my music. He will dance in his seat and try and snap his fingers. Unfortunately for him, he hasn't mastered snapping, but being the resourceful kid he is, he puts his fingers together and then just clucks his tongue to imitate the snapping sound.

Given the choice between Oreos and animal crackers, John will choose Oreos every time.

He thinks Dr. Seuss is pretty cool, and that Raffi can sing some catchy tunes.

He knows that if mom says "no" when you ask for ice cream, ask for cake, then ice cream, then cake, then ice cream again, and then a cookie. Chances are you'll end up with some sort of sweet, especially if you ask in a full sentence and smile.

John always asks for juice before milk.

He always says no when it we tell him it is time for bed or his nap.

He appreciates that making messes are much more fun than cleaning them up.

And that baths are fun, until it is time to rinse your hair.

Ketchup seems to make the meat more tolerable to eat.

He appreciates that Carbohydrates rule.

That walking is sometimes overrated when you can have someone carry you.

The minute John gets into a shopping cart, he asks for food.

And he appreciates that chicken seem to taste best when it is in the form of a nugget, and smothered in ketchup.

That being cute sometimes gets you what you want, as well as out of trouble.

And the list goes on.....

Questions, A Festival, and Wisdom from The Stones

2010-07-12T07:53:00.013-04:00

Any kid comes with their share of worries. I worry about my girls, but I find I worry more about John. There are big worries about his health and his future, and sometimes there are little worries. Thinking about it can really make your head spin sometimes.

Maybe worry is the wrong word, maybe it is more of an annoying uncertainty over seemingly trivial things like which of the girls old toys and books I should save for John.

Will he be able to read and understand all of these books? Will he understand the rules of these board games? Will he be able to complete some of these puzzles?

I didn't have this problem when I was deciding what of Katherine's I should save for Julia. Her ability never crossed my mind. John's ability more than crosses my mind.

Well, I decided to keep everything that I liked, assuming that these books and games will get some use somewhere down the line. We just gave away the things that were too "girly".

It's the uncertainty over all of the little things that can be hard.

Will he be able to participate in family game night? Will he one day nag me to get him a toy he wants or take him to a movie he wants to see? Will he ask to go to Disney World? Will he? Will he? All those things I took for granted with my girls.

Some of these types of questions will go unanswered for awhile. Answers to others have come sooner.

Friday night we decided to go to an Italian Festival in the next town over from us. It is a yearly event, and we hadn't gone since the girls were little. There are amusement rides and games, food, and entertainment. It had all the makings of a wonderful evening.

It was a beautiful summer night. The heat wave we had earlier in the week had broken. The girls, especially Julia, were very excited about going on the rides. I was looking forward to a nice Friday night out with the family, but I will admit, there was that nagging feeling. More of those questions.

What about John? Will his experience of this festival be different because he has Down syndrome? Will it be too noisy? Too stimulating? And what about the rides? Can we let him go on a kiddie ride by himself? Will he understand he can't get up while the ride is moving? Will he even want to go on the rides? What will he eat?

I guess this Festival would help provide answers to some of those questions.

We decided to sit and eat first before hitting the rides. John was pretty happy this was an Italian festival because pizza is his favorite food, and they had a pizza stand. That was one worry out of the way.

On to the rides. The girls wanted to check out the bungee jumping first. Right next to the bungee was a kiddie firetruck ride. We decided that ride would be a good ride for John to try first.

So the girls jumped:

And John watched them laughing, saying "swing". He wanted to go on the bungee jump! "No," I told him, "You are going to go on the firetrucks."

He checked out the kids on the firetrucks, and said "I want" and then pointed to the trucks. Yeah!

The girls finished with the bungee and then we all headed over the big event of the night. John's first amusement park ride.

Do you think he liked it?

And his second (a helicopter ride, which his sisters wanted to go on with him):

He loved the rides! On the little fire trucks, which basically just went slowly around in the circle, he sat and rang the bell. Every time he passed by us he would burst out laughing. He was full of smiles. His joy was contagious; it made the festival even more, well, festive. We were feeling celebratory, and having fun.

There must have been some divine intervention going on too because we couldn't have asked for better conditions for John's first ride. We didn't have to wait on line. There was only one other little boy on the ride with him so if John did start to stand up, it wouldn't have been that big of scene to just stop the ride so we could get him off. This other little boy looked like he might have had what is known as Butterfly Syndrome. His skin was peeling all over his body and looked very fragile. I imagined his parents had their share of worries about this little boy too, but there they were. Two little boys smiling and reveling in the ride. It was some coincidence that these two just happened to end up on the ride together.

Just as we were taking John got off the firetrucks, everyone full of smiles, I became aware of what the band was playing. The female lead singer was channelling Mick Jagger:

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes well you just might find
You get what you need
Oh baby, yeah, yeah!

Truer words were never spoken (sung). Thank you Rolling Stones for the reminder.

Oh, in case you were wondering. In addition to the rides, John loved all the lights and music, and before the night was through, he too was asking for ice cream. He even had fun on the 10:13pm train ride home:

And I was worried :)

Gagel Follow Up

2010-07-09T23:52:00.003-04:00

So we are on the train tonight. The train is crowded. Since we are only going to be on for 8 minutes, we decide to stand by the doors.

"Gagel"

We look out the window--no Dunkin Donuts.

We look at the advertisements posted next to us--no bagels, no Dunkin Donuts logo.

The girls are dumbfounded, "Where does he see a bagel."

No one is eating a bagel.

We don't see the Dunkin Donuts logo anywhere.

The girls and I just figured that maybe he wanted a bagel.

A few minutes pass.

The train is slowing to a stop when I see it. A woman sitting a couple of rows back is drinking an iced coffee from a clear plastic cup.

There it was.

The Dunkin Donuts logo. Backwards on her cup.

Just goes to show, he is a very observant kid. Taking it all in.

I see a future car bingo superstar in the making.

Gagel

2010-07-09T15:53:00.005-04:00

Every time John sees the Dunkin Donuts logo, he asks for a bagel. Of course, when he says it, it comes out as "Gagel".

This is a result of my being a coffee addict, and hitting the Dunkin Donuts drive thru more than I'd like to admit. I get a coffee, he gets a bagel.

It is quite comical driving around with John. We have a lot of Dunkin Donuts up here in the Northeast, and sure enough, every time we pass a Dunkin Donuts, I hear "gagel" coming from the backseat.

Sometimes (if there is a drive thru) we stop and get one. When we don't, I hear about it. "Gagel, Gagel, Gagel".

I admit, I have been known to change my route so I don't pass a Dunkin Donuts and get my kid into a gagel frenzy. The girls have to distract him so he doesn't notice when we are about to pass a Dunkin Donuts.

We are slaves to brand marketing.

No place is safe. The other day, we were in the supermarket, in the coffee aisle (do you see where this is going?)

I pick up a bag of coffee, and John says "gagel"

I say "No, this is mommy's coffee".

He says "Gagel".

"No, coffee."

"Gagel"

"Coffee"

"Gagel"

It took me a few seconds, but then it hit me!

I'm buying a bag of Dunkin Donuts coffee.

The bag was basically one big Dunkin Donuts logo.

Gagel.

Well, I guess, he told me.

(Don't even get me started about McDonald's golden arches and the french fries.)

He's Going to Be a Heartbreaker

2010-07-07T17:32:00.004-04:00

This statement has been said a few times by strangers who encounter John. I guess they think he is a cutie. Those brown eyes, the eyelashes, the smile that brightens his face. I guess they don't see the Down syndrome at first. I guess they envision a young man with the same striking features, a man the ladies will be chasing after. A man who will break some hearts.

I know these strangers mean it as a compliment, but instead these comments, well, break my heart a little.

Yeah, John is a cute kid, and yeah, who knows without that extra chromosome, he might have gotten the intelligence to go with his good looks like his sisters did. He might have had his pick of the ladies. He might have gotten married, and had kids. The "mights" go on and on.

Of course, who knows, without that extra chromosome, he might have been butt ugly.

Who knows.

And do we really want our sons to be a breaker of girls' hearts anyway?

As a girl who has had her heart broken, I venture to say "no".

He still may be a ladies man, so all you girls sporting an extra copy of 21 better watch out.

I haven't given up hope that I will dance at this boy's wedding.

Of course, he's got such a hold on my heart, that I might not want to let him go.

My Biking Buddy

2010-07-01T23:56:00.003-04:00

Even though he got stuck with his sisters old bike helmet, he is still pretty happy being my copilot.

In an Instant

2010-06-29T08:22:00.003-04:00

It only takes an instant for life to change. Sometimes the changes go unnoticed, sometimes they are life altering.

If you have a child with Down syndrome, you know that. If you've lost someone you loved, you know that.

I look back on my "instants". When the doctors told me my baby had died in utero--twice. When I first heard the words, Down syndrome said in relation to my child.

Funny, even though I know how life is just one big collection of changes. I still worry about the future as if I know what is going to happen. I worry about John when he is an adult. Will he be able to take care of himself? What if I am not here to take care of him? How will the girls feel if they have to take care of him?

Of course, this is pointless. So many "instants" lie ahead. "Instants" with the ability to change everything. I am so much more conscious of that fact that I used to be.

For instance, last week, I went to the doctor. I hadn't been since John was born. Honestly, between the two back to back pregnancies, both with somewhat traumatic endings, I had enough of being poked, prodded, and scanned. I also had a enough of doctors sometimes act like they know it all, only to be proven wrong in the end. I am a parent though, and my children do need me to stick around for awhile, so I got my butt back to the doctor. It was a routine exam, but it does appear that my hemoglobin is low. My hemoglobin count was just above 8. For an adult female, if your count is below 8, you have severe anemia. Ideally, the count should be above 12.

Now, I have always had a lower than average hemoglobin count, but never as low as 8. Anemia is not uncommon in women.
The doctor put me back on prenatal vitamins (never thought I would be back on those again!) to help get my count up, and there are few tests/procedures she can do. I actually have in about an hour.

It really is probably no big deal; except that I have had this feeling of foreboding though since I went to the doctor last week.
I feel like another one of those "instants" might be headed my way.

Hopefully, I just being a little paranoid, or maybe I'm just mentally preparing myself for the next "instant".

In this particular instant, I am on my laptop, sitting on the cold marble floor, watching John play in the bath. He is starting to splash, so for the safety of my computer, I am going to sign off :)

The First Summer Morning

2010-06-28T07:23:00.006-04:00

What marks the beginning of summer for you? Is it Memorial Day weekend? Is it the official start, the summer solstice, which happened on June 21? Is it the end of the school year?

For me, summer begins today. The official start of Summer Break from School. It is almost 7:30am on a Monday morning, and both girls are still asleep. If school were still in session, Katherine would be on the bus already. Julia is usually up by now, but she got to stay up late last night and watch a movie. That would never have happened on a Sunday night, but as she was quick to remind me last night (as she pleaded to stay up) "It's not like I have to get up early for school tomorrow!"

She was right. There is nothing to rush to this morning. Sleeping in is allowed, too bad someone didn't tell John that. He was up at 6:00am. Guess he figured, if dad has to get up and go to work. mom should get up too.

I actually don't mind being up early with him. It gives us time to read some books and play. It gives him time to watch one of his DVDs without the distractions of his sisters. It gives me time to actually sit and drink my cup off coffee while it is hot rather than stealing sips in between making breakfast and lunch. Time to water my plants. Time to walk outside and take in the sounds of the morning, the birds singing, the swoosh of the neighbors sprinkler. The lull of the cars heading off to work. Absent is the sound of the screeching brakes of school buses as the stop at the intersection down the road.

Of course, being up early also gives me time to throw in a load of laundry, take out the garbage, and run the dishwasher which I forgot to run before I headed to bed last night. Moms really don't get a summer vacation :)

Ah, I hear footsteps. Julia is awake.

She grabbed some dry, cold cereal and is off to the play room to watch tv or play on the computer.

When Katherine gets up (which could be in two hours), she will most definitely be joining her in front of some screen (be it tv or computer.)

I hate to break it to them, but even though school is out, they will not become couch potatoes for hours each morning.

I have plans.

I say this every summer. Plans to go for daily morning walks. Plans to set aside quiet time every morning for reading. Plans to get some projects done around the house. Plans to go on day trips throughout the summer.

Since John was born, many of my plans never came to be reality. Having an infant then toddler can make day trips hard. There is the short attention span. The need to nap. The need to have a stroller in tow. For John, our summer days had been filled with therapy sessions at the house. It made it hard to just "GO".

This year, John will be at school for the month of July. I will have the mornings with just the girls which I am really looking forward to. They are both growing up so fast, becoming more and more independent. This will be Katherine's last summer as a preteen. The social plans with her friends is already pretty intense; I can't imagine what it will be like when she is a teenager.
I want to make a point of having some real quality time with them.

Of course, the summer will be filled with many activities of past summers. There will be afternoons spent at the beach with friends. We will stay there until the evening comes, drawn by the magical evening light that transforms a beach come 5pm. Weeknights on the boat. A kiddie pool and sprinkler in the backyard. The girls will do the theater camp that they love and there will be some other half day, week long camps for Julia (and hopefully Katherine). There will be fireworks on the Fourth of July. Camping with friends, and of course, Cape Cod.

Yes, I have plans.

I plan on this being a summer of many happy memories.

Who knows maybe I'll even manage to blog more :)

Anyone else have big plans?

Has It Really Been a Month?

2010-06-26T18:47:00.002-04:00

I have been a real blog slacker lately, and this post isn't going to do much to change that. Figured I'd treat you to a photo of John though.

Basketball seems to be a favorite of his. He loves it when daddy picks him up so he can sink the big basketball in the basketball hoop in the driveway. Unfortunately, daddy has to work all day, so when John wants to sink a basketball and asks his rather short mommy for help, he is beyond disappointed when I can not lift him all the way up (above my head) to the basket.

Figured he needed a basketball hoop more suited to his size:

Given this size and the rate he is growing, this hoop could be around for awhile :)

Do you Know About Research Down Syndrome?

2010-05-26T12:56:00.004-04:00

I wanted to share another organization that is dedicated to furthering Down Syndrome research.

It is aptly called Research Down Syndrome. Like the Down Syndrome Research and Treatment Foundation, Research Down Syndrome is a non profit organization that supports Down syndrome cognitive research.

From the Research Down Syndrome website:

The mission of Research Down Syndrome is to expand and enhance life opportunities for individuals with Down syndrome by funding scientific research directed toward the understanding and amelioration of impaired cognition. Research Down Syndrome educates and inspires a caring society to fund biomedical research findings which will translate into safe and effective, approved therapies to treat the cognitive impairment in individuals with Down syndrome of all ages.

Go to it's website. watch the video, and learn more. The website is a great source of information on what is being discovered today about Down syndrome. Hey, and while you are there, feel free to make a donation. 100% of all donations go to research.

This organization is also eager to help any parents or organizations who might want to organize a fundraising event for Down syndrome research. Does your local Ds organization support and fund those universities that are currently conducting research? If not, why not? Maybe it is time they start. Let Research Down Syndrome help.

"Be the change you want to see in the world."....Gandhi

Sunshine

2010-05-21T07:38:00.000-04:00

Why Me--Answer to the Previous Post

2010-05-19T14:10:00.004-04:00

Why me?

Well, here's why. Things needed to happen the way they did

Because there was soul out there, a sweet, silly, spirit that needed a place to call home.

He needed two sisters to wrap around his finger.

He needed a mom who had no problem putting him first.

He needed a dad who would believe he would make his own unique, wonderful, mark on this world.

And this family needed all the things only he could bring.

There were lessons that needed to be learned and taught.

Love that needed to be shared.

Believe me, I appreciate that.

I make a point of appreciating that.

Each and every day.

Sometimes, like on days that would-have-been birthdays, when the grief over babies lost, muscles it's way in, I just need a little extra reminding.

Bombarded by Babies

2010-05-19T09:00:00.002-04:00

"It's A Girl" balloons fly from a neighbor's mailbox.

A friend just told me her sister (age 40), who a few years ago looked like she might never have kids, is expecting her second child.

I just found out yesterday that another friend (age 41) is expecting a little boy. She has three daughters and always wanted a fourth child, but it seemed for years as if it wasn't meant to me. Well surprise, a little boy is on his way!

And to top it off, as I was listening to the news last night, John Travolta and his wife are expecting.

Everywhere I turn, a baby. All on the day that would have been the day the little boy we lost turned 4.

Years later, losing him the way we did still hurts so much. Legally, he wasn't even a baby. We never held him. He never officially arrived. It's over and done with. Something that just happened. He was very real to me though.

I felt him grow. I felt him kick, and then I felt the kicks lessen. I was worried, but at the time, I pushed my fears back. At 20 weeks, you don't always feel the baby kick all the time right? I told myself, "I am going to the doctor in a couple of days, we can see what is up then?" It was Christmas week. We had a house full of family. We were taking the girls to Radio City to see the Christmas Show. We had an amnio, and everything looked fine. I felt fine, just a bit tired and stressed, but I was pregnant and the holidays are stressful. After the fact, I realized that I felt him dying, and then he was gone, almost as if he never existed.

On what would have been his birthday, we quite possibly got pregnant with John. We dared to hope for another baby boy with 46 chromosomes. Right or wrong, I wanted back what I had lost. i suspect John Travolta and his wife might be feeling the same way.

Things didn't turn out as we expected.

So here I am 4 years later, bombarded by babies, and I'm a bit envious. I still want that typical little boy. It really has nothing to do with John, expect for the fact that if he didn't have Down syndrome, I might have that boy. I'm not saying I don't want John. I want them both, but it will never be. It makes me sad to think of what might have been. I feel like something, someone is missing.

I envy these moms with their new babies on the way, and at the same time, I view pregnancy completely differently now. I'm so happy and excited for the them, but at the same time, I know all the things that can go wrong, especially, if you are of advanced maternal age. I hope none of these moms to be ever have to go through what I did, and at the same time, I am a little bitter that I was one of the lucky ones that had to go through the stuff most expectant moms don't want to ever think about much less go through.

Yes, I'll admit it, I asked that question that for some reason someone said we aren't allowed to ask ourselves...the dreaded
"Why me?". I ask because I really do believe there has to be answer. This all had to happen for some greater purpose right?

All of these expectant moms of advanced maternal age will most probably be just fine. Some might have an amnio and it will be no big deal. They will get the reassurance they hoped for, and they will have the baby they wanted. There will be more balloons flying from mailboxes. Only tears of happiness will be shed. Big dreams will be made, and that's what I want for them (hell, that's what I wanted for myself). I am so excited for these expectant moms. I pray everything goes exactly they they hope.

A baby's arrival should bring nothing but happiness. Unfortunately, it doesn't always work out that way, and some women never even get to have the babies they so desperately wanted. It seems so unfair.

So many mixed emotions. I think I must suffer from a little post traumatic stress disorder--self diagnosed, of course. Anything pregnancy/newborn related brings back so many intense feelings, so many memories.

Yeah, I might be a little crazy, but I suspect, I'm really just a mom who is missing a little boy she will never have.

Thankfully, I do have three wonderful kids to fill my life with love, and yeah they do contribute to my craziness too, but i wouldn't have it any other way.

Ramblings of a Rainy Day

2010-05-18T15:43:00.003-04:00

"I want my kids to have a better life than I had"

How many times have you heard that phrase used here in America? That actually may be the American Dream. A better life.

Immigrants came here for a better life. A better life for themselves and their children.

Here in America where things can just get better and better right?

But what constitutes a better life?

Often, material things are involved. We want our kids to have nice clothes. We want to be able to give them nice things.

We think more money will help give our kids a have better life, and well, let's face it, money definitely helps.

Money does enable parents to give their kids new opportunities. You can experience more of what life has to offer if you aren't worrying about basic things like food, shelter, and medical care.

After all money does pay for:

Dance classes. Gymnastics. Piano lessons. Sports leagues. Art classes. Swim lessons. Summer camps. Ice skating lessons....and the list goes on.

Not to mention hippotherapy, music therapy, occupational therapy, physiclal therapy, aqua therapy....and the list goes on.

My kids definitely had more of all that stuff than I did.

Parents can really get caught up in it, and it can get expensive.

I wonder, how often do you here this phrase?

"I want my child to be a better person than I was"

And what constitutes better?

When I look around, I think that many people feel better means.

Smarter.

Stronger.

Prettier.

Happier.

Richer.

More successful.

More polite.

More popular.

More outgoing.

And yes, all of those things are desirable traits to have. If they are used to do good.

Maybe parents need to focus more on having their children be "less".

Less selfish

Less self absorbed

Less materialistic

Less prejudicial

What if every parent's main focus when raising their children was just making sure their child was kinder than they were.

What do you think the world would look like?

"I Want Juice"

2010-05-10T15:43:00.002-04:00

I think that was John official sentence. It was unprompted, not modeled.

When John wants something, he usually just uses one word to request what he wants.

"Eat"
"Juice"
"Book"
"Show" (when he want to watch a TV show)
"Wii" (when he wants to watch someone play Wii)
"Outside"
"Swing"
"Bath"
"Downstairs"

He knows and can say a lot of words, and he does use words functionally to get what he wants. I will admit, saying one word usually got him what he wanted. Over the past week, his speech pathologist at school asked us to really focus on getting him to add the word "I" to his requests, so I did a lot of modeling, and after a week of making him repeat the words "I want", he finally got the idea.

On Friday night, after snacking on a bunch of pretzels with his dad, he must have been really thirsty. So thirsty that he couldn't waste time by just saying "juice". He knew that if he did, I would make him repeat "I want juice". Time would be wasting, so the smart little guy cut to the chase, and just said "I want juice".

My husband and I just stared at each other and then him. Did he just say that?

Indeed he did. So I immediately got him some juice. He was pretty happy with himself.

Of course, he still requests things with one word, but over the past couple of days, when he doesn't get what he wants right away, he pauses and has started to say "I want". I guess I've been too easy on him.

While his language development has been slow, I really have seen it speed up since he started school. He is using more two syllable words, he is putting a couple of words together, and he repeats everything we ask him to say. Granted, his annunciation on certain words is way off, but he is trying.

Hearing him deliberately say those three little words, "I want juice", was the best Mother's Day and birthday gift ever!

Hope you Mother's Day was wonderful too!

And the Webby Goes To....

2010-05-06T13:07:00.002-04:00

The Specials!

Reality Webby Award Winner: The Specials
Reality People’s Voice Winner: The Specials

If you haven't already done so, go to their website and check these guys out!

You learn something new every day!

Cool Random Stuff

2010-04-30T17:25:00.004-04:00

John has mastered the art of whispering.

It is quite possibly the cutest thing I have ever heard.

It is skill that could come in quite handy.

I think he thinks it's cool to whisper.

Monica and David, a movie about a couple with Down Syndrome won best World Documentary Feature at the Tribeca Film Festival. It will be on HBO in October. How cool is that?

Pretty darn cool.

There was an article in the New York Times today about how research into Fragile X Syndrome lead to clinical trials for a drug that might treat the mental retardation that can accompany the syndrome. Some early results show promise.

That's pretty darn cool too.

I love that scientists are trying to understand these syndromes better.

It is going to be close to 90 degrees here tomorrow.

That's very cool.

Warm, sunny days are the best.

Today, the warmth called us to the beach.

Tomorrow, it may call friends to our backyard for a BBQ.

Have a great weekend!

Vote for the The Specials

2010-04-29T09:41:00.004-04:00

Don't have time to write, but go to HERE to read about a web based reality series called The Specials about a group of young adults with special needs.

Their series is up for a Webby Award--in both the Reality Show and Documentary Series categories. As of yesterday, they were in 1st place in the Reality Series catagory.

Check out their website and then vote for them TODAY!!! There is only 24 hours left to vote.

This show is just the type of advocacy the disability community needs.

It shows people, who just happen to have some special needs, living their lives, and well just being people. People with problems. People who party. People who fight. People who fall in love. People who have their heart broken. It challenges all those stereotypes (many of them negative.)

Show your support for these amazing young adults, spread the word, and vote!

Think about how cool it would be if they won!

Treating Down Syndrome

2010-04-21T12:27:00.003-04:00

This is a follow up to yesterday's post about Dr. Mobley.

I was all excited about the prospect of a treatment, but I appreciate others do not share my belief that a treatment for Ds would be a good thing. It begs the question:

Should Down syndrome be treated?

Stay with me here, while I try to reason this out.

Having a treatment implies that something is wrong and needs to be fixed.

If something needs to be fixed; it implies it is broken.

By wanting to treat Down syndrome, does that mean I think my child needs to be fixed?

Some would argue that it does.

Maybe they are right, but I don't think it is that cut and dry.

I don't view John has broken, but I'm not fooling myself about how his brain works.

Biological, chemical and structural problems are causing his brain not to function the way that human brains typically function. That may sound harsh, but that is just the way it is. The way his brain functions makes certain things harder for him . There are negative effects that can not be denied. Again, just keeping it real.

When I was told my baby had Down syndrome, I was told about all the medical conditions that Down syndrome could cause. The heart condtions, the thyroid conditions, the gastrointestinal issues. You know the list. Oh yeah, and then there was the "mental retardation which is usually mild to moderate, but can be severe."

John had a hole in his heart. We fixed it. Now it works properly and instead of using all of his energy to pump his heart, he is able to use his energy to learn and grow.

John has reflux. We give him medicine to fix it.

John has a thyroid problem. More medicine to fix it.

John has a cognitive disability. According to Dr. Mobley because the nerves in his brain aren't working the way they should.

There is no medical fix for that, but we have spent a lot of time on therapies that are meant to help build connections in the brain.

Like his heart, I wish I could safely fix those nerves so they will work they way they should. I want to prevent them from degenerating even further.

These nerves may have the potential to work properly, just as his heart did.

Doesn't my son deserve to get the most out of his body?

Now, I guess you could argue that fixing a heart is not the same thing as fixing a brain.

You need a heart to function in order to live.

Well, last time I checked, your brain is pretty important too.

As parents of children with Ds, I find that we are trying so hard to stay focused on the positives that we don't really talk about the negatives.

Let's face it, having a cognitive delay COULD put your life in jeopardy. If you are unable to take care of yourself, because your nerves don't work properly, your life is in jeopardy.

As a parent, I have used medical intervention to sustain and improve the life of my child. As a result, he is a happy and pretty healthy three year old who is going to school, asking to have pretzels for breakfast, and saying "Stop" at every stop sign.

We celebrate that people with Ds are living longer than they were twenty years ago.

Why are they living longer? Because we intervened. Where possible, we used medicine to fix the damage caused as a result of that chromosome.

We have been able to treat the body, but the brain is still at the mercy of that extra chromosome.

And that extra chromosome can bring with it deterioration of the nerves in the brain. Early onset Alzheimer's Disease. Dementia. Seizures.

Don't we owe it to those with Ds to support research that might lead to a treatment that would address nerve degeneration?

Especially if that treatment could improve their health and quality of life?

Having a treatment available doesn't mean that parents/individuals need to take advantage of it.

I do suspect that many would.

I also suspect that the existence of a proven, safe, treatment that would improve cognition and learning would offer new parents hope.

Might also lead to a reduction in number of babies with Ds who are aborted.

That would mean there would be more individuals with Ds would have a chance at life.

Yes, I will admit, these individuals with Ds who receive treatment, might be a bit different. They might be a bit more self sufficient. They might not take things as slow. They might not be as innocent.

I guess it's a matter of personal opinion as to whether or not that is a bad thing. I guess options would need to be weighed.

What do you think? I'm always up for a friendly debate of ideas :)

Dr. William Mobley

2010-04-20T08:58:00.003-04:00

Do you know how he is?

Well, if you have a child with Down syndrome, you should find out.

Because this guy is conducting exciting research that could lead to a treatment for individuals with Down syndrome, and other degenerative neurological disorders.

Last night, I was fortunate enough to hear Dr. Mobley speak and explain his research.

He studies show nerve cells in the brain work, how messages are processed in the brain. How parts of the nerve cells in individuals with Down syndrome are not formed correctly and that is why there are problems with cognition. He has identified a gene (the APP gene) that he believes to be one of the culprits in causing problems in the nerve. He has also identified safe, preexisting, compounds that might help the nerve cells function better.

Dr. Mobley was the Director of the Center for Research and Treatment of Down Syndrome at Stanford University. He is now Chair of the department of Neurosciences at The University of California at San Diego. Here is a little description of the type of research he was conducting at Stanford, and is continuing to conduct as UC San Diego:

"Dr. Mobley’s laboratory studies the signaling biology of neurotrophic factors in the normal brain and in animal models of neurodegenerative disorders, such as Alzheimer’s disease and Down syndrome.

Neurotrophic factors are proteins that play an important role in maintaining synapses and circuits. Released at the synapse, neurotrophic factors send signals to ensure normal synapse function. In pioneering studies, Dr. Mobley and his colleagues defined the mechanisms by which neurotrophic factor signals are moved within a cell. He is widely acknowledged as having been the first to isolate the cellular organelle responsible. The Mobley laboratory has recently discovered that neurotrophic signals are not normally trafficked in mouse models of Down syndrome. This abnormal trafficking leads to structural and functional changes at synapses. A brain region that is particularly affected in Down syndrome is the hippocampus, which plays and important role in learning and memory. Current research is focusing on identifying the gene(s) that may be responsible for structural and functional changes at the synapse. Once the gene(s) are found, the goal is to understand the underlying mechanisms, so that effective treatments can be found."

Years ago, scientists felt Down syndrome was too complicated to understand, and therefore treat.

Dr. Mobley disagrees.

He is a man who is passionate about understanding why and how the cognitive deficits occur in individuals with Down syndrome, and what can be done to possibly reverse some of these deficits.

Of course, if Dr. Mobley's work is going to continue. It needs to be funded, and as you know, helping individuals with Ds is not up there on the general public's list of "How I Like to Spend My Money."

I encourage you to learn more, and if it is something you support, to make a donation to either Dr. Mobley's lab at UC-San Diego or to the Down Syndrome Research and Treatment Foundation (because they are one of Dr. Mobley's biggest private sources of funding).

Oh, did I mention that Dr. Mobley's research might also help those with Alzheimer's Disease. The Alzheimer's Association awarded him a grant to fund his research as well:

"William Mobley, M.D., Ph.D., professor of the Department of Neurology and Neurological
Sciences at Stanford University
Degeneration of Hippocampal Circuits in Down Syndrome: A Role for APP?
$239,901 over three years

Alzheimer's disease and Down syndrome both involve damage to brain cells that promote
hippocampal health. These cells include basal forebrain cholinergic neurons (BFCNs), which
have long, thin structures called axons that help transmit chemical messages into the
hippocampus. Damage to BFCN axons may lead to memory loss and cognitive decline. In
preliminary studies, Dr. Mobley found that Alzheimer’s and Down syndrome strongly affected
BFCN axons. Specifically, the researchers noticed that certain axons lost the ability to transport
nerve growth factor, a protein that promotes nerve cell growth and protects cells from damage.
Further research found that this axonal abnormality was associated with increased levels of
amyloid precursor protein (APP). APP is the parent molecule of beta-amyloid, a key suspect in
Alzheimer's.

For this grant, Dr. Mobley and colleagues will conduct a more extensive study of the role of
hippocampal cells in Alzheimer development. The researchers hope to confirm their earlier
results with BFCNs. But they will also look for other cell groups that experience Alzheimer-
related axonal damage. In addition, they hope to confirm that abnormal APP regulation is linked
to this damage and to the subsequent loss of function in the hippocampus. Results of Dr.
Mobley's study could lead to new therapies for both Alzheimer's disease and Down syndrome."

Really, I wish I had some real money to donate to this guy. Need to thing of a creative way to fundraise instead.

Two Boats?

2010-04-09T14:41:00.006-04:00

Back in November, I had the pleasure of hearing Emily Perl Kingsley speak at the Connecticut Down Syndrome Congress' annual convention. Most people who have a child with Down syndrome, know Emily as the author of Welcome to Holland. Since her son Jason was born in 1974 with Down syndrome, Emily has been a staunch advocate for people with disabilities. She was a pioneer, forging a path towards a better life for her son, and others like him. Because of Emily, children with disabilities became a part of Sesame Street's neighborhood and in turn, a more welcomed part of neighborhoods across the world.

As part of her keynote speech, Emily shared her thoughts on parenting and advocacy. She was encouraging parents to unite. She pointed out that if everyone who had a disability or cared about someone with a disability united and had one voice, real change could happen. To this point, she had another analogy to share, but admitted she was still working out the finer details of it. It hasn't been published; she said she hadn't even written it down.

She likened raising a child with a disability as being on a boat. At your feet, there are oars. There are many other people there with you. You start to row alone, and you feel like you aren't getting anywhere. Then, everyone on the boat picks up the oars and starts to row together. The people on the boat with you are nice, you have a fun time together. Even though rowing can be very tiring and hard, but working together you get where you want to go.

In telling this story, she also mentions that other boat, the one with the all night parties and all you can drink margaritas. I guess that is the boat that those parents who don't have a child with a disability are on. She says that boat sailed a long time ago, and we can't catch up and get on that boat.

Now I will admit that my recollection of her story might be a bit fuzzy, and it was just my interpretation. I'll admit though that I have the same feeling about this analogy as I had about Welcome to Holland. (See this old post for details.)

Does there need to be two countries?

Does there need to be two boats?

Maybe 30 years ago, when Emily's son was a child, that was acceptable, but don't we want more?

Hearing her speak made me wonder if she had other children. I don't know, does anyone know if she does?

I wanted to ask her how you manage, if you have a child with a disability and other typical children.

Do you have to choose to stay in just one boat or a country?

How do you choose? I have a son with Down syndrome and two daughters, each of whom, over the past week, have been called "gifted" by their teachers.

All of my children have special needs that need to be met.

And, I like margaritas and parties.

That said, I am not afraid of hard work either.

Maybe we just need to build a bigger boat.

A better boat.

One that has a motor. One where life is filled with purpose and hard work pays off.

One that when the sun starts to set over the water, we can still party all night if we so choose.

All of us.

Together.

I'll have a margarita on the rocks, with salt. Can I pour you one?

We'll have a drink together and toast Emily and all that she has done to make the world a little more enlightened.

We'll put on some rock music. You see, I have a son with Down syndrome who likes music with a beat, a daughter who likes to dance, and another girl who can't seem to stop singing.

Here's the boat we'll be hanging out on this summer:

Just to Brighten Your Day

2010-03-29T09:01:00.003-04:00

It is a gray, rainy Monday here. The kind of morning that makes you just want to stay snuggled in bed, but it's Monday. So you know how it goes. You need to get up and get moving. The hubby needs to go to work. The kids need to get off to school, and if you are a stay at home mom, you need to get into the weekday grind. Even though, for the next few hours, until John gets home from school, I could go back to bed, but I have things to do, and being productive is a good thing.

So I will leave you with a photo (which was taken a few weeks ago). This little face brightens my day daily; even on the rainiest of days.

The Arrival of Spring

2010-03-23T12:53:00.004-04:00

The last few weeks have been a bit crazy here so this will be a long, random, "jam it all in there" post--just warning you!

Last week, a Nor'easter hit our town. Trees fell like dominos, and we were without power without three days. Luckily, the first night the power was out, we spent the night at friends. When we returned home, we still had no power, but at least that old oak tree in our yard was still standing.

While it did get a little cold sleeping without heat, it was sort of fun living by fire and candlelight. The quiet was nice. I must admit, we did still have some modern conveniences. My laptop is battery operated and plays DVDs (which made John very happy.) We did still have our cellphones (which made Katherine very happy). We were also fortunate that our stove is powered by gas. One strike of the match, and the burners were ready to go. We cooked pasta and boiled water for washing. The girls enjoyed having their hair washed in super warm water in the kitchen sink. The kids even got a day off of school because of the storm (which made the girls happy as we spent the day at the mall.)

After the bad weather passed, we were treated to sunshine and temps that, on somedays, reached the lower seventies. The kids were back on the swings and the backyard welcomed the soccer ball, batting tee, and cartwheels.

This past weekend, Spring officially arrived. We spent the weekend doing some yard work, planning spring projects and just relaxing outside. We talked about summer plans. Tickets were bought for upcoming Yankee games. Weekends were set aside for boating trips.

March 21st was World Down Syndrome Day. I must admit the marking of this day brought mixed feelings. I'm still not feeling that Down Syndrome is something to necessarily celebrate, but I do believe that children with Down syndrome should celebrate and be celebrated. Does that make sense?

When John was an infant, I did a mommy and me music therapy class for babies with Down syndrome. The group was run by a woman whose younger brother has Down syndrome. She instantly became a friend.

Through music, a group of about five moms and their babies bonded with each other. After the class ended, we stayed in touch. We moms who have kids with Ds can be few and far between, so when we find each other, we need to stick together. Although we all don't live in the same town, we meet for play groups and moms' night outs. Our group of five grew as we met other families touched by Down syndrome. We welcomed new babies and made new friends.

Over the past month, we decided to make our play group became a more formal entity. We decided to call ourselves 21 Strong in honor of that extra copy of chromosome 21. We want to be a resource for other families in our area, and we felt that together we could advocate more effectively. We set up a website, had tee shirts made up, and decided to hold a small event at a local library this past Saturday to honor World Down Syndrome Day.

We had the music therapist, Marisa, who first brought us all together, lead us for an hour of music. It was truly a special gathering. Children, with and without Down syndrome, came together to make music, listen to stories stories and shake a parachute. The sun was shining. Children were smiling. As Marisa noted, it was a day to celebrate life, all life. Spring had definitely arrived.

On Sunday, World Down Syndrome Day, my emotions were mixed. I reflected on all of the good, beautiful, joyous things John has brought into our lives, but then I thought about Down syndrome. That extra chromosome has caused me to grow. It has opened up a new world to our family. It has brought some wonderful people into our lives. We have seen the goodness of others.

That extra chromosome has given and taken away. That extra chromosome is also the reason why my little boy isn't talking. That extra chromosome is the reason he can't climb up the slide by himself. That extra chromosome is the reason he really doesn't fit in with the typical kids in our neighborhood. I am convinced that extra chromosome is the reason why feeding him is such a challenge. That extra chromosome is why, at times, there is added anxiety, stress and grief in our lives.

I can't help but think how better things would be if that grief and stress were gone. I know what it is like to raise a typical child. I know they come with their share of stress, but it is different with John. You worry about different things.

Of course, I then ask myself is the problem really with the extra chromosome or is it with the world in which we live. Would I feel different about Down syndrome if the world were different?

I can only do so much to change the biological impact of that extra chromosome. It is frustrating. I'm accustomed to being able to change things I don't like.

So I put my energies elsewhere.

I push John higher on the swings,

and engage in a battle of wills with my middle schooler.

I listen to all of Julia's crazy ideas and plans,

and try to stay awake long enough to watch a movie with my husband.

I gossip with my girlfriends.

and try to keep up with blogging.

I focus on all of the beautiful things and people in my crazy, busy, full, life,

and, I try to advocate and make this world a little more welcoming, a little more understanding, a little more respectful for my sweet, innocent, boy.

Spring. New beginnings. My Spring began with 21 Strong, grilled hamburgers, and kids playing in the yard. A pretty good way to start the season.

Check out our 21 Strong website! It is in it's very beginning stages, but maybe you might want to do something similar with your friends.

It's Coming

2010-03-10T13:53:00.002-05:00

Here's the proof!

Goodbye winter, you were beautiful, but we are so ready to see you go.

Amazing what a 10 degree increase in the temperature can do!

Everyone is flocking back outside.

The kids are back on the swings.

Soccer balls will replace skates.

The Spring "To Do" list is starting.

Plans for Spring and Summer are being made.

I spent the morning with two good friends walking and talking.

We headed down to the beach area of town where the roads are flat and memories of summer linger, calling us back.

As we attempted to walk away those pounds winter added, we talked about our children, unconditional love, change and new beginnings.

The sun sparkled on water.

Our steps slowed, and we stopped to appreciate the beauty of the day.

Yes, Spring is coming.

A Beautiful Yucky Day

2010-02-23T08:46:00.009-05:00

My children are off to school. All three of them stood in the rain/snow and waited for their buses to arrive and take them off to the wonderful world of learning. I am left in a quiet house, drinking my coffee, alone with my computer.

As I sit here, enjoying the peace, I am looking outside at this mixed, gray, up day we are having hear in Southern Connecticut. It looks like it is snowing, but it sounds like it is raining. Snow, rain, and ice. Fun!

A friend summed it up with her Facebook comment, "It's just "yucky" out."

And it is, but looking out at the icy mix falling from the sky, I am hopeful because this yucky mess of precipitation tells me that Spring is coming. Winter is losing it's grasp. The temperatures are rising a bit so instead of getting hit with all snow, we are getting the rain and ice.

The weather dance between the snow and rain. The grasp of winter and the tickle of spring.

I wonder which will end up taking the lead as the day progresses. Will the day end with snow? Will the kids be sent home early? Will the rain take a turn and wash away winter? Unfortunately, I fear the ice, with it's hard, slippery moves may win out.

I love the change of seasons. I don't think I could ever live in a place where the sun always shined, or never shined. Where you were never cold or were never cursing the heat and humidity. I love the snow. Yucky days like today just make me appreciate, all the more, those beautiful, warm days that are just weeks away (hopefully!)

What's better than coming in from the cold and having a cup of hot chocolate with marshmallows?

Or coming in from the rain and wrapping yourself in a warm blanket?

Or making snow angels?

Or watching the flowers pop their heads from the thawing ground?

Or wading into the ocean on a hot summer day?

Life, like the weather, is full of change.

The key is to embrace the yucky days as well as those picture perfect days.

And to find the beauty in both.

Palin, The R Word, and Family Guy

2010-02-19T22:37:00.005-05:00

Boy, I could go on a rant about Sarah Palin right now.

or Rahm and Rush and their individual use of the "R" word.

I won't though (even though I have a draft of both rants saved.) I will spare you; instead, I will lead you to some great posts on both of these matters. Check out:

Bridget's Light

The Unknown Contributor

The Oz Squad

As far as The Family Guy episode that featured a song called Down syndrome girl, I won't rant. I get that this show is all about satirizing stereotypes, that no one is safe. I don't usually watch it because while I get the satire, and I'll admit, I do find some of the skits/jokes funny, my laugh is almost always followed by my saying "that is horrible." My husband, who likes the show, says, "That's the point. You're suppose to think it is horrible."

Well, on Sunday, I actually watched the show. It was Valentine's Day. My husband and I had celebrated on Sat. with a nice dinner out in the city, so we really had no big plans for Sunday night. Katherine was at a sleepover and Julia had a friend over, so Bill and I put John to bed and just watched tv. Since I know he likes Family Guy, I figured I'd be a good Valentine and watch the show with him (he usually records it and watches it when I'm not around.)

What a Valentine's Day present! We got to see Down syndrome satirized on prime time tv!

The episode featured a song that's chorus went along the lines of: "You're in love with a Down syndrome girl." The lyrics contained a whole bunch of stereotypes, some a little raunchy. Bill immediately said, "Let's watch something else". I don't think he wanted me to get upset. I declined. I wanted to see how this episode played out. This show is about pushing the button on stereotypes so lets see where they were going with this whole Down syndrome theme (I least they hadn't used the "R" word.)

The show continued with our meeting the Down syndrome girl. The Family Guy's son had a crush on her. Well, while the song may have been full of stereotypes, the Down syndrome girl broke them. She was not the happy, smiling, loving stereotypical Down syndrome girl you might expect. She was a bossy, independent, spit fire, whose father was an accountant and whose mother was "a former governor of Alaska".

After watching the show, I had mixed feelings. I didn't like the Down syndrome girl song, but I did like that the girl herself broke the stereotypes. The boy who had a crush on her was turned down by her. Feeling defeated, he told her that he thought people with Down syndrome were suppose to be different, but it turns out she was just like everyone else. I guess he figured because she had Down syndrome, she'd automatically be nice and friendly to him. Turns out she was just like all of the other teen girls who thought she could do better than him. The typical boy was kicked to the curb by the Down syndrome girl. Of course, that was probably just suppose to make him look more pathetic, but still that girl with Ds stood up for herself. She broke many of the stereotypes. The Ds didn't define her. Isn't that what we want? I actually like that people are actually talking about Down syndrome, that the stereotypes are being questioned, and in this case mocked.

The episode finished, and I wasn't in tears. I wasn't mad. I laughed in parts and said my usual "that's horrible" just like I would when other groups were the butt of the jokes. My opinion of Family Guy really hasn't changed all that much. Didn't watch it much before, not going to watch it any more or less now.

Sarah Palin, however, blasted the episode. I guess she only likes satire when it is accompanied the power of Rush Limbaugh.

The actress who did the voice over for the Down syndrome Girl basically told Sarah to get a sense of humor.

Oh, did I mention that the actress not only has a sense of humor, but also has Down syndrome. Read more HERE

Happy Valentines Day

2010-02-14T17:23:00.003-05:00

Love is patient
Love is kind.
Love is not jealous
Love is not arrogant
Love is not inflated
Love is not rude
Love does not self-seek its own interests
Love is not quick-tempered
Love does not brood over injury
Love does not rejoice over wrongdoing but rejoices with the truth.
Love bears all things, believes all things, hopes all things, endures all things.
Love never fails
So faith, hope and love remain, but the greatest of these is love.

1 Corinthians 13:4-8

Hope your day was filled with love

xo

The Dangers of Unmonitored TV Viewing

2010-02-11T14:16:00.003-05:00

I'll admit it. I let my toddler, um I mean, preschooler watch TV.

While I am cooking dinner, or getting the girls off to school, John quite often is watching TV alone. Now he is watching educational programing--Signing Times, Elmo's World or something like that.

I'll admit this too, he has turned into a bit of a TV junkie. He asks to watch a tv show by simultaneously saying "show" and doing some sign with his hands which he quite possibly may have invented. A few times, he has even managed to play a DVD for himself, which is no easy feat given our A/V set up.

Well, as you know, John started school a few weeks ago. People have asked, "How is it going?". "Does he like it?"

I honestly don't know how to answer sometimes. It's not like he comes home and says, "Hi mom, I had a great day at school" so I have to try to decipher his behavior and rely on what his teachers tell me. He gets on and off the bus without issue. HIs teacher says he is doing well. After his first week, she said it seems like he has been coming to school since September. We have our first team meeting tomorrow so I will hopefully have a better idea of how he really is doing. For now, I say it is going well because, well, it is. He seems like he likes school.

When we tell him, he is going to school. He says "school" and claps his hands.

He usually claps his hands when he likes something or has done something right.

I took the clapping as a sign that he likes school.

Then, one evening while he was watching Signing Time, I decided to take a break from my chores and watch along with him. It was an episode about school and John was signing along to program. I wanted to see what was going on.

Guess what I learned?! I'm sure some of you already know.

Clapping hands is a sign for school.

Poor kid, here he is signing, and I didn't even realize it!

That's what I get for using the TV as a babysitter.

Bad mommy.

Nonetheless, I still think he likes school. Here he is on his first day, waiting for his teacher to bring him to class:

Talking Issues

2010-01-28T16:58:00.005-05:00

I always wanted a house filled with the sounds of children.

I hate that saying: "Children should be seen and not heard."

Children should be heard.

Children are some of the wisest and most entertaining people around.

More people should listen to what they have to say.

It should, therefor, come as no surprise that when it comes to the delays that can accompany Down syndrome, the speech delay has been the hardest for me to deal with. It really doesn't bother me that John can't jump yet or draw a circle, but not being able to have an in depth conversation with him--that gets to me. I miss all of the questions that usually come with the toddler and preschool years.

Developing his verbal abilities is extremely important to me, and thankfully, I do see that they are developing. He has verbal approximations for a lot of words. He is great at labeling things, and he does use words to get some of his basic needs met. As I hear his words emerging, I want to hear more of that little voice! I'll admit it, I'm greedy. I want more talking!

I have always liked talking with my children. I like hearing what they have to say, what they are thinking, what they are feeling. I like hearing what they did in school, what they are learning, who they played with at recess. Right now, I need to rely on John's communication notebook to give me a small glimpse into his day. I am so excited that he is starting school, that he has a life apart from us, but I do wish he was able to share his experiences with us more. I'll admit, I feel a bit cheated. I remember how different it was with the girls. They had so much to share. John does too; he just isn't able to yet.

My first born was an especially early talker. By fifteen months, she had at least a hundred words. By two, you couldn't even begin to count the words she knew. By age three, she was talking not only for herself, but for her baby sister too. When she started school, her teachers always commented on how much she liked to talk, that she had so much to say. The kid would not shut up :) Things apparently haven't changed too much.

I received a call from her language arts teacher today. Her teacher gushed about how Katherine is such a gifted writer, such a strong reader, just an insightful contributor to classroom discussion, an asset to the class. Proud, I listened, but I was waiting for the BUT that I knew was coming. There was obviously a reason for the call that had nothing to do with my daughter's language arts talent.

Problem seems to be Katherine still doesn't know when to be quiet. NO SURPRISE THERE! When students are suppose to split up into groups and do some independent reading and writing, Katherine has been, as her teacher put it, "incredibly chatty." Upon hearing the problem, I immediately told the teacher not to feel bad about calling (because she did feel bad). I admitted that I am well aware of how hard it is sometimes for my beloved daughter to just STOP TALKING!

So now I need to reprimand my eldest daughter for talking when she is not suppose to be talking.

And I need to reprimand my son for not talking when he is suppose to be talking.

Isn't there a happy medium?

Well, I guess in our house, in this particular instance, there is, and her name is Julia.

Bus Rider-Day 2

2010-01-27T17:10:00.006-05:00

This is a follow up to the previous post Bus Rider. Today when I went to get John off the school bus, look what I found:

Is this the same little boy who RARELY falls asleep in the car? Guess he had a busy morning.

Bus Rider

2010-01-27T07:35:00.003-05:00

Yesterday, John took the bus home from school. To bus or not to bus was probably the most stressful decision we had to make in regards to preschool. We decided to bus. I am going to drive him to school for the first week, but starting on Day 2, he was going to take the bus home. Yesterday was Day 2.

There are car seats on the bus, and the teachers strap him in. When he gets home, I go onto the bus, unstrap him, and help him off. There is however no aide on the bus, just the bus driver. I'll admit that concerned me a bit, but the director of the preschool assured me that the drivers are great and that his taking the bus would be a good thing. It would be just one more thing he would do, somewhat on his own, that would prepare him for his later years.

I must admit, it was pretty surreal seeing that little bus pull in front of the house yesterday. Never thought one of my kids would need to ride the buses everyone knows are for those children who have special needs, but such is life, full of surprises.

Anyway, the bus arrived, and I went on to get him. The bus driver was very nice, and yelled back, "John, you're home. Here comes mommy!" He was all smiles when he saw me.

When we got off the bus, and he realized he was home, standing in our driveway, in front of our car, he burst out laughing. He the proceeded to point to the car, and say "car". I wonder if he was telling me that he liked the car better :)

I told him, "Yes, that is the car, and you just rode the bus." Being my faithful parrot, he then says "bus".

I agree, "Yes, bus. You took it home from school."

He promptly replies, "school."

Then he starts signing/speaking, and I have no idea what he was talking about. I think I caught the sign for "learn" in the midst of his signing. I told myself he was just telling me that he had a great day :) Of course, he could have been complaining, but let's go with the great day story.

Oh, and as it turns out, he wasn't that upset about my leaving him yesterday morning. Feeling bad that I left him, on what looked like the verge of a tearful meltdown, I emailed the teacher to see how his morning was going. Seems he was just fine. When he walked into the classroom with the aide, he was not crying. So either he stopped in the hallway or never really started. Overall, it sounds like day 2 of preschool went well. He started speech yesterday, which he gets a 1/2 hour a day, and he crossed taking the bus home alone off his "to do" list.

Here comes Day 3.

First Day of Preschool

2010-01-26T10:05:00.003-05:00

By all accounts, John had an awesome first day.

We have been talking up school for the past few weeks. Telling him over and over again that he was going to school, that he would see his teachers, that he would learn and play, that he would meet new friends, and that he would pay attention :) We've read books and watched videos. He would repeat "school", "teacher" and sign "learn", "play" and "pay attention." It is always a challenge to really have a grasp on how much he understands. He was somewhat ahead of the game in that "school" is not an entirely new concept for him.

Back in September, he began a sort of pre pre school. It was a program just for children who had special needs. The range of what those special needs varied greatly. There were a couple of children with severe physical and cognitive disabilities as well as a couple of kids who just had some slight sensory issues. It was a very warm and nurturing environment. In fact, it was almost too nurturing as John had a teacher at his side and at his beck and call the entire time he was there. His time there was valuable though in that it introduced him to the concept of school in a very laid back, loving environment. It also allowed me to see how he would separate from me. There were a couple of tears in beginning, but overall, he enjoyed being there.

The preschool he is starting is run by our local school district. It is a blended class, and I have heard nothing but great things about it. The physical space of the school is beautiful, and the whole team seems very dedicated. Our PPT meetings went great. The teacher and speech and language pathologist who met John to determine if he was eligible for services both were quite taken with him. Both thought he was ready for school, and were excited to have him start. We were excited too. He is ready; I am ready. He needs to be out of the house and around other kids. He had his Birth to Three therapists wrapped around his finger; he knew how to get around doing what they wanted him to do. He would benefit greatly by being in a new environment with new expectations. Thankfully, his teachers will be expecting a lot from him. They think he is a bright little guy with a lot of potential. Yes, we are very excited for this new phase.

Yesterday, when we dropped him off at school, he seemed very excited to be there too. He was all smiles. When his teacher came over to bring him into class, he looked at her, then touched me and said "Ba Ba" (ma ma--he has trouble with "Ms"). He then touched Bill and said "Da Da". We told him that Miss R was his teacher, and he touched her and said "teacher". So far so good!

We then walked him into his classroom. His teacher helped him take off his coat and showed him where his cubby was. A little girl "E" instantly came over and wanted to know what John's name was. She is evidently the self appointed mini teacher of the class. It was very cute, she took his hand and led him over to the table where and told him what he needed to do. He was going along, still smiling, so we took that as our cue. We told him we were leaving and we said goodbye. He said "bye" back and gave us kiss. We then swiftly made a run for it! Go while the going is good!

I checked in later in the morning, and the teacher said that he was doing great. There was just one glitch. There was an unplanned fire drill! The fire alarm went off, the teachers grabbed the kids and their coats, exited the building and proceeded to stand out in the wind and rain for 10 minutes. The preschool is connected to a high school and they suspect that a high school student pulled a fire alarm as to get out of taking a midterm exam. Not an ideal event for a kid's first day of school.

When John got in from the fire drill, he started to cry. I suspect he was hoping to see his mom or dad after that ordeal!

Thankfully, he calmed down quickly, thanks to the rice table, and finished off his first day of preschool with flying colors.

Of course, this morning, when I dropped him off, there were tears (his) as I left and the teacher took him to the classroom. Then there were tears (mine) as I drove out of the school parking lot. You think I would be immune to a crying kid. I know he is going to be fine. Both of the girls went through phases of crying at drop off. Like his sisters were before him, I know he will be ok. The tears will be gone once he is distracted by something fun. He just looked so pathetic.

Yeah, sometimes you just have to push your kids into the world kicking and screaming.

Did I mention he is taking the bus home by himself today?

Hopefully, I'm not pushing too hard...too soon.

Parties and Preschool

2010-01-25T10:01:00.003-05:00

So I was on a roll there posting everyday to celebrate the birthdays of my January 23 babies, and then Friday hit, and the parties began.

Friday began at 5:45am when I arose and got ready for the groceries that were due to be delivered between 6am and 8am. Friday ended at 1:00 am (which is really Sat) when I told Julia and her six friends that it was time to get to the sleeping part of Julia's sleep over party.

From 5:45-1:00, I baked a cake, cleaned the house a couple of times, had John's last session with his Birth to Three teacher, did some laundry, wrapped presents, drove 1/2 hour and back to Stamford so we could celebrate John's birthday with his play group, decorated the house, picked up both girls from school, made tacos, and oversaw all of the activities for Julia's birthday sleep over party. I started a blog post, but never finished it.

Saturday, John and Julia's actual birthday was rather low key. We recuperated from Friday's festivities and began preparing for Sunday. In celebration of the kid's birthdays, we went out for dinner and had cake at home. We'll have a bigger family birthday party when my parents get back from Florida in a couple of weeks.

Sunday was all about football. We are New York Jets fans and we were having people over to watch the AFC Championship Game. Sadly, the Jets lost, but we did have a lot of good food and fun partying with our friends.

Here we are on Monday morning. Julia is nine. John is three. The weekend of parties are over, and the week begins.

Mondays for the past couple of years have started with John having a therapy session. Not today.

This Monday began with John's first day of preschool!!!

We walked him into his classroom. His teacher helped him hang up his coat. A little girl quickly came over to welcome him.
He seemed happy to be there.

We left him smiling. He kissed us and said "bye"

Hopefully, we will be smiling when I pick him up.

Thanks to Julia

2010-01-20T18:30:00.006-05:00

As I get farther along this crazy thing we call life, I am amazed how one life event prepares us for another. Sometimes the events can be years away, sometimes the connections go unnoticed. Sometimes we connect the dots, and the picture that is our life comes into view.

In her own special way, Julia prepared me for John, so it seems especially fitting that they share a birthday.

You see Julia has some "special needs" of her own. She has some serious food allergies which deserve some special attention.

When she was a toddler, Julia was allergic to wheat, dairy, eggs, peanuts, tree nuts and sesame. She has since outgrown her wheat allergy, but her existing allergies can be life threatening. She also had reactive airways which, when she was a toddler, often led to asthma. Not a good combination.

Having a child with food allergies comes with a certain amount of fear. Every birthday party, play date, dinner out was a source of stress, and forget about Halloween. What if she ate something she wasn't suppose to? If we weren't with her, would others be able to handle her allergy attack? We lived with the knowledge that something as innocent as eating a Reeses peanut butter cup could potentially kill her. Serious food allergies, if you let them, can really isolate a child.

Asthma is not much better. It can come on quick and often in the middle; it can take you by surprise.

Thanks to Julia, I learned how to listen to a child's lungs and diagnosis when a child's airways were reacting. A wheeze sounds like a squeaky door opening and closing. Pneumonia sounds like cellophane being crinkled. I learned about Pulse Ox levels and monitors, and when a trip to the ER was warranted.

Thanks to Julia, I learned that sometimes you need to just trust your instinct despite what the doctors say. On that night when were faced with the decision to operate on her hand ASAP or risk nerve damage, I went with my instinct and had her moved to another hospital where we believed she would have better care. Thankfully, that decision was the right one.

Thanks to Julia, I learned a lot of things most parents don't want to learn, but looking back, they were lessons I needed to learn to prepare me for John and his special needs.

Now nothing really prepares you for the diagnosis of Down Syndrome. I can easily find my way around some of problems that come with Julia's food allergies. I can't say the same thing about some of the issues that arise due to Down syndrome. John's special needs are more all encompassing than Julia's. Food allergies, however, can be fatal. Down syndrome is not. So their ups and downs to both.

Yes, thanks to Julia, without a doubt I was able to be a better mother to John.

Thanks to Julia, when John woke up one night with croup, I knew he needed more than just a steamed up bathroom. I learned not to "wait and see" for too long. Out came the stethoscope and off to the hospital we went.

Thanks to Julia, I learned when it comes to your child's medical care, sometimes you need to trust you instincts despite what the doctors say. As a result, I had no hesitation in switching John's cardiologists and having his open heart surgery in a different hospital.

Thanks to Julia, I knew what it was like to see your child hooked up to all sorts of monitors, fighting to breathe; as a result, when John came out of heart surgery with wires and tubes coming out of all parts of his body, I wasn't as freaked out as I might have been.

Thanks to Julia, I knew what the warning signs of an infiltrated iv was, and caught John's iv infiltrate (which his nurses missed) before it became serious.

I learned that sometimes you needed to fight to get the care you need and deserve.

Most importantly, thanks to Julia, I learned that even though a child has special needs, first and foremost, they are a child. Raising the child needs to come before addressing the special need. If you let it, the special need can take over your life and the life of the child. Sometimes you just need to take a step back.

If I let it, I could let the fear of Julia's food allergy prevent her from ever eating in a restaurant, ever eating in the school cafeteria with her friends, ever eating over a friends house, ever going trick or treating for candy. I could let it isolate her.

If I let it, I could let John's disability stand in the way of almost everything. We could spend a good deal of our free time doing therapies instead of doing other fun things. If I let it, I could get lost in the "if onlys" and "what ifs".

If I let it, I could let their individual special needs keep them from being more independent.

If I let it.

I don't let it.

Or at least I try not to.

Thanks to Julia and John, I have learned (am learning) how not to let fear stand in the way of living. Really living.

I have learned that sometimes you need to let go, let go of the control. I have learned to trust others to take care of my children, and their special needs, when I am not there. I have learned to teach my children to the best of their ability, how to take care of themselves.

Julia and John, despite their special needs, deserve to have a chance to experience all life has to offer. Making that happen, often takes some added effort (and creativity) on our part, but let me tell you, I can't think of anything I'd rather put my energies into than keeping smiles on these two faces.

A Trip to New Haven

2010-01-20T08:31:00.005-05:00

Yesterday, we had to make a little trip to New Haven to get a copy of John's birth certificate. After searching the house for this very important document, I determined that we had either misplaced it or we had never gotten it. I don't quite know how it took us three years to realize we didn't have his birth certificate, but looking back I'm not surprised it was overlooked given everything else that was going on at the time.

Honestly, in my mind, his certificate was safely locked away with the girls' birth certificates. Imagine my surprise and frustration when I went to the lock box to get it and it wasn't there.

Well, you can't register your child for school unless you have a birth certificate. Since John is set to start school next Monday, I needed to get this certificate in hand which meant driving to New Haven.

To further complicate matters, Julia was home "sick" yesterday (I think a long weekend of parties wore her out) so she came along for the ride . So instead of dragging one kid; I was dragging two. As it turns out, It was actually a help having Julia tag along. She kept an eye on John for me while I waited for the clerk to get us a copy of the certificate.

Going to New Haven always brings back a flood of memories. Although we only live a half hour a way, we haven't spent much time in the city...unless of course we were at Yale New Haven Hospital.

Our first stay at Yale was 7 1/2 years ago. We were rushed there by ambulance. Julia had been hospitalized in a local hospital due to an asthma attack. While she was there, her iv infiltrated into her arm. I awoke from a midnight cat nap to find her arm swollen with fluid and hard as a rock. At first, the doctors and nursing staff made light of it....the fluid would be absorbed by her body...nothing to worry about. The next day, when her arm was still swollen, and a burn appeared at where the iv had been inserted, the flood of doctors started visiting.

Since her asthma was under control, we going to be released. We just needed the plastic surgeon to take a look at her hand before they would let us go. After a long wait, the doctor arrived, examined her, and promptly determined that Julia needed emergency surgery on her hand. He felt the excess fluid might cause nerve damage. The longer we waited, the great the risk of damage.

Well, I was not about to let a doctor I had never met cut into my toddler's hand, not in a hospital that couldn't even properly insert and monitor an iv. So off to Yale we went.

Thankfully, the head of hand microsurgery at Yale determined that surgery was not emergent. He did want to stay in the hospital because he felt her condition needed to be closely monitored. After spending a few days in the hospital at Yale, it was determined that Julia's asthma was under control and hand surgery was not necessary. We breathed a HUGE sigh of relief.

Around that time, I very much wanted to have another child, but my husband did not feel the same way. After spending four days in the hospital with my 20 month old, listening to her labored breathing, keeping her arm elevated to help the fluid drain, wondering if she would be ok, I felt very much like I had all I could handle. Seeing the children there who had severe medical conditions, hearing the Code Blue announcements in the middle of the night, made me stop and count my blessings. Around that time, I stopped pressing my husband for baby number three. I was so thankful for my two healthy children. We could have lost Julia that week to an asthma attack. She could have lost the use of her hand that week. Thankfully, she didn't, but boy did it rattle our sense of security.

Fast forward four years, and we were back in New Haven at Yale. We hadn't been there since Julia's hospital stay. Again, the health of our child brought us there. This time, there was concern about our 34 week old fetus. Shortened femurs. Doctor at same hospital that Julia had her infiltrated iv told us our unborn child most probably had a form of dwarfism, and there was a chance he might not make it. We went to see the expert at Yale so he could confirm. At first, he disagreed, he just thought the baby had short legs.

Unfortunately, two weeks later, when the legs had not grown, we were told that something was most probably wrong. Our doctor at Yale also thought it was most probably a form of dwarfism. While he didn't rule out a chromosomal abnormality, he thought dwarfism was more likely because there were no other markers for something like Down syndrome.

When I went into labor three weeks early, it was off to New Haven we went because our baby would most probably need special care.

The half hour drive to the hospital was a bit surreal, we were about to have our son, most probably something was seriously wrong with him, and I didn't even have an OB at Yale. I wondered who would deliver my baby. That drive to New Haven was very much a drive into the unknown.

New Haven is where we learned that life would never be the same. It was where we first heard the words Down syndrome, heart defect, open heart surgery, and hypothyroidism. We had dodged the bullet there with Julia, but it hit us right in the heart with John.

Since John's arrival and early doctor visits, we have been back to New Haven and the Yale Medical Campus, only this time, we weren't seeing doctors. We were there for the girls piano recitals. Oddly, the recitals were held in a small reception room on the Medical School Campus. Our visits there are full of music. A celebration of our daughters emerging musical talents.

And yesterday, we drove to New Haven to get legal documentation that John is indeed ours.

After our stop at City Hall, we went to Ikea. It just happened to be next to the doctor's office where we went for our ultrasounds when I was pregnant with John. The place where dreams began to unravel.

Yet, there I was, three years later, with my two children, walking through IKEA looking for a desk chair for Julia. John was eating veggie sticks; Julia potato chips.

Our trip to New Haven. It was a pretty mundane outing. There I was with my too youngest, in a city where, at one time, I feared, with good reason, for both of their lives.

Thankfully, our trips to New Haven, always end with a trip back home...together.

Yesterday, we stopped for fries at the McDonald's Drive Thru at the rest stop along the way.

Julia and John love their fries.

It's the little things.

Who Needs Words When There is Music?

2010-01-19T18:35:00.005-05:00

One Thing I Love About...

2010-01-18T08:22:00.005-05:00

Julia is that she is very comfortable with who she is. She knows her strengths and weakness, and acknowledges both with amazing candor. She has no qualms about saying "I'm a great dancer" or "I am so bad at playing tennis". Mind you, Julia is not a great dancer in the technical sense, but she feels she is, and for her, that is all that counts. I consider her a great dancer because she dances with joy and ease.

Julia has an easy confidence that oddly doesn't come off as conceit. When it does, we'll call her on it, she'll laugh about it, but still make a point that she is right about her assessment of herself. She doesn't necessarily brag, but she toots her own horn. I think she gets away with it because she is equally generous with praise for others (except maybe her big sister).

There is no pretense with Julia. What you see is what you get. She says what she means and she means what she says; yet she also knows when it is appropriate not to say anything. People like being around her because she makes them feel comfortable. She tends to look for the common ground. She looks for the bright side, and when she finds it, she invites all to join her, and many do.

Despite her over all easy going nature, she is a very strong girl. Resilient. She avoids confrontation (except with her sister), but isn't afraid to stand up for herself, for others, and for what she believes in. What you see is what you get, but don't let her often care free demeanor fool you; nothing gets buy this kid.

One Thing I Love About...

John is that he is very generous with his kisses (for people he knows). He will come up to you, give you a kiss, and say "Tiss". I guess he feels the need to tell you what he just did, in case it was unclear :)

Everyone needs affection. Many people don't get it. They don't get that hug or that kiss good bye or good night. No one grabs their hand and holds on tight. No one touches their face and smiles.

That is never the case in our house because we have John. Master of hugs and tisses.

Especially for his sisters..

My no nonsense girl:

Keeping Winter Days Bright

2010-01-17T23:31:00.000-05:00

One Week Until Three and Nine

2010-01-16T09:02:00.004-05:00

John will turn three next week. I actually can't believe it. When we first learned he had Down syndrome, three seemed so far a way, and here it is seven days away. And, when did my little girl who loved pink, wearing dresses, and Disney princesses turn into a tween who likes Project Runway, neon colored jeans, and itunes?

As some of you may have noticed, I haven't been posting much. Life feels like it is one step ahead of me, and at times it is all I can do too keep pace. Between the holidays, a trip to Georgia, an ER visit for my husband (he's fine), a fall on some black ice for me (I'm recovering), and all of the things that go into raising three busy children, when I have a free moment, I'm tired and not too motivated to write even though there is so much to write about.

This time of year (Dec-Jan) is also a hard time of year for me. In the midst of all of the celebrating, memories of loss rear their ugly heads. During past Decembers, a screening test for our unborn child showed signs of a chromosomal abnormality, a routine ultrasound showed our unborn son had died in utero, and ultrasound showed the left ventricle of John's brain appeared enlarged (then another one didn't). In past Januarys, we learned our baby girl most probably had Turner's or Down syndrome and would most likely die in utero. A week later, we learned we had lost her. In past Januarys, I had two procedures to remove my dead children from my womb. We also learned our unborn son quite possibly had a form of dwarfism or a chromosomal abnormality. One doctor even thought he might die at delivery because his chest cavity might be too small for his lungs to expand to take his first breath. He didn't have dwarfism; he didn't die, but he does have Down syndrome.

Too many bad, painful, heart breaking memories. Every year is hard, this year was a bit harder because someone very close to me suffered a miscarriage on New Year's Eve. In feeling her pain, some of my own was brought back all the more vividly.

HOWEVER!!

Past Januarys, also blessed us with two new children. John and Julia.

Cause for celebration.

So for the next week, in honor of my January 23 babies, I am going to post daily in celebration my almost three year old and my almost nine year old.

Funny, how bad memories come as unwelcomed visitors, but oddly, the good memories sometimes need a formal invitation.

Consider this my invitation.

A Flip of a Coin

2010-01-15T07:32:00.003-05:00

I have a coin in my pocket.

Some days when I take out the coin, it emerges heads up. A sweet, smiling face sure to brighten my day. My coin sparkles.

My coin is rather rare. When I look at it heads up, I feel as if I possess something quite valuable. I spend a lot of time making sure I keep my coin safe. I can't imagine what it would be like if I lost my coin.

I keep my coin close. It might always be with me.

Some days when I take out the coin, the tail is facing up. There are markings that I don't quite understand. I have spent much time and energy trying to learn their true meaning. Trying to understand.

Many view my coin as something to get rid if it unknowingly ends up in your pocket. They look only at the tail of the coin, afraid of what the strange markings mean. Do they come with bad luck? I understand their fear. The unknown can by scary.

On those days when the coin lands face down, the implication of those markings weigh on my mind.

I give the coin a flip until it lands heads up. I try to focus it's on beautiful face.

Nonetheless, even when out of view, I will admit, those strange markings are never truly out of my thoughts.

What do they mean?

What will they bring to my life?

Some days it is easier to flip the coin than others.

Some days I days I don't catch the coin as I flip, and have to run after it.

Some days I wish I had a two headed coin, but we all know that those are fake.

Many days I wish I had a coin that wasn't clouded in so much uncertainty.

Years ago, I didn't have to spend much time flipping coins.

It can be a bit time consuming.

I've learned a trick though.

You really don't need to flip the coin.

You can just turn it over so it stays face up.

Also, instead of trying to decipher the meaning of the markings on the tail, sometimes relying on other's interpretation.
You can make those markings your own.

Give them your own definition as to what they will mean to your life.

The Name Game

2009-11-10T12:21:00.004-05:00

I know I have been a bad blogger. Life has been so busy. So much has been on my mind though that I actually should take the time to write about it, but just haven't made the time, or been in the right mindset. I do want to catch up though. I have been periodically reading others' blogs, but really haven't commented all that much. Yes, I'm reverted back to being a lurker :) I'll try to change that in the upcoming weeks.

Monica who writes about her beautiful family on her blog Monkey Musings tagged me for the Name Game weeks ago. Figure I would at least take the time to respond to that tag, albeit late. I am supposed to share how we chose the names for our children. I will warn you that our process was not all that exciting.

When we started discussing names, my husband and I both felt that we really didn't want our children to share the same first name with another after family member. We wanted them to have their own unique first name. That said, family is very important to us and we thought it might be nice for family names to be passed down as middle names. That was the plan--unique first name--family middle name.

We did what I suspect many first time parents do; we bought a name book. For months, we would go through the book looking for names. It became clear pretty quickly that I liked classic names, nothing too trendy for me. I wanted my children's names to stand the test of time.

Of course, I had my favorites, and my husband had his. Not wanting to overly influence each other, we each agreed to make a list of our favorite names and compare. Hopefully, we would have some matches. Thankfully, after making our individual lists, we had some names that we could both agree upon.

So here is what we ended up with--from oldest to youngest

Katherine Rosemary. Katherine was a name that was on both our lists. We both agreed it was a strong, traditional name, a classic. I also loved the nickname Katie. So choosing Katherine was pretty easy. We called her both Katie and Katherine (never Kathy) until she was old enough to make her opinions known, at which point she told us that she preferred to be called Katherine. She has been just "Katherine" since about age 2.

Rosemary is actually a combination of my maternal grandmother's name, Rose, and my husband's paternal grandmother's name, Mary. That one was easy.

Julia Louise--I just loved the name Julia, and since we had lost a baby girl prior to being pregnant with Julia, my husband was not fighting with me on names. Julia was another strong, classic name and it seemed to fit with the name Katherine. Sisters--Katherine and Julia.

Louise, is the feminine form of Louis, which is Bill's middle name. The name Louis was given to him because that was his paternal grandfather's name. We actually didn't decide on Julia's middle name until after she was born.

John Raymond--Our son actually did not enter the world with a name chosen for him, even though we knew we were having a boy. Since we had lost a baby boy prior to becoming pregnant with John, and were very scared that something was going to go wrong again. We were hesitant to definitely decide on a name prior to delivery.

We were considering naming him William and calling him Will, but Bill wasn't sure. I think he still wasn't sure he wanted a namesake; he definitely didn't want his son to be a Jr. He wanted our son to have his own identity and not feel like he was ever expected to be a junior version of someone else. I, on the other hand, love the name William. It too is a strong, classic name so it seemed to "go" with the girls' names. Honestly, I just wanted to honor my husband by naming our son after him.

When we learned our son had Down Syndrome soon after delivery, naming will William didn't feel right. I think in our minds when we pictured our little boy, William, certain expectations and dreams were attached to the name. Our William didn't have Down syndrome. Our William might one day have a son of his own to pass down his name too. In my mind, my son William would have had a lot of the strengths his dad William had, a lot of strengths that require a developed intellect. Our William would be able to do anything he set is mind too. So many hopes and dreams, attached to a name, that suddenly didn't seem possible. Deep down, I think, I was still hoping that William would some how, some way, still be part of our family. I wasn't ready to let him go.

So there we were, in the hospital with a baby boy who arrived three weeks early (on his sister's birthday), who came sporting an extra 21st chromosome, a heart defect, and who didn't have a name.

We named him John.

We still wanted a classic name. We wanted a strong name. We wanted a name with some religious significance. I looked to the Bible and I thought of John The Baptist. A child born to an older mother. A man who came with a message to those who were willing to take a leap of faith and listen.

My ever practical husband also thought John was a good name because it was short, and if our son might have trouble with speech one day, better to give him a name that was easier to say.

When we ask our son today what his name is, he puts his hand to his chest and says "John". I didn't know at the time that John means "God's Grace", but now, thanks to Monica's post about her John Michael, I do. It is clear that we chose the perfect name for our son as he continually reminds us to look for God's grace in each day.

Raymond, John's middle name, is in honor of Bill's dad who passed away when Bill was in high school. I believe that Bill's dad, Raymond, is keeping an extra special eye on our little John Raymond from Heaven. Maybe he had a hand, for whatever reason, in sending this special child to us.

Now, I need to tag a few people to continue the name game. Mmm, who to choose? Who hasn't already been tagged? I'm not sure; so I tag:

Datri at Opposite Kids

Stephanie at Daily Smiles

and my buddy Laura at Now I'm a Mom

No pressure ladies, and by all means, reply after the craziness of the holidays!

2009-11-01T14:01:00.001-05:00

I don't know how Halloween came and went, and didn't manage to get a photo of all three of my kids together in their costumes. I guess it just shows the different stages they are at. Katherine was at a fundraiser all day yesterday, and Julia and John left for a Halloween party before she got home. She then went to a different party and went trick or treating with her friends. By the time she got home, Julia and John were in bed. Oh well! Doesn't matter much, all three were healthy enough to enjoy the festivities.

John was a skeleton pirate. He wore pjs that had bones on it underneath his pirate suit. The girls wanted him to be something cool. He really had no clue what Halloween was all about. It made me a little sad because I remember that when the girls were almost three they were somewhat excited about the holiday. I know the day will come. I see the photos of older kids with Ds trick or treating. Sometimes it is just hard to wait.

He was a very cute pirate. He had fun seeing all the older kids at the party. He was fascinated by Julia's bright blue, 70s style eye shadow, and he did like her sparkly dress. Katherine's mouse ears were pretty amusing too.

Well, here we are in November. The year is just flying by.

Still Sick, but Still Have Something to Share--Besides Germs

2009-10-29T09:09:00.003-04:00

We are still fighting some form of sickness over here. Julia's fever broke a few days ago, and she went back to school. Her cough, however, has gotten worse so she is back home. John isn't really coughing, but he is cranky and tired. More than anything else, I'm tired. My husband and Katherine, so far have been healthy, guess it pays not being home.

So there is the reason for my lack of posting-H1N1

I did happen a upon a nice article about Tim Shriver, Chairman and CEO of the Special Olympics. It's a quick read and sums up what he views the mission of Special Olympics to be. He explains:

"I joined Special Olympics as C.E.O. in 1996. I’ve tried to shift the conversation here from what Special Olympics does to what it means. It’s often seen as a service organization, but I believe that it’s a civil rights movement. Volunteers might think that they’re only coaching or serving water at a track and field event, for example, but they are doing far more. My mission has been to remind them that they are serving the search for human dignity and acceptance."

Acceptance.

Sounds good to me.

Oink!

2009-10-25T16:29:00.002-04:00

Bill took Julia to the doctor this morning, and she thinks Julia does indeed have the flu. It could be the boring, old seasonal flu, but more than likely it is the swine flu. The doctor has seen 50 kids with flu like symptoms since Thursday. Tests are showing swine flu more than seasonal flu. They did test Julia, and we will have definitive results will be in on Wednesday.

Thankfully, her lungs are clear. She is sneezing and has runny nose, and her fever is running between 101-104, on Tylenol. She is tired, but can't sleep. We are giving her fluids, and she is resting. All things considered, so far so good. My big fear was that the flu would get her asthma going, but it so far it hasn't. Hopefully, a few days of rest and she will be as good as new.

Oh, and I'm saying my prayers that she doesn't get her brother and sister sick. My wonders about the vaccination may be in vain as my kids might get the flu before they have a change to be vaccinated. Of course, I'm counting the days before I get sick, because you know I'm not exactly keeping my distance from her :)

Stay healthy out there!

H1N1--Swine Flu

2009-10-24T21:14:00.002-04:00

As you may have read, President Obama declared the Swine Flu (H1N1) a national emergency. People are lining up to be vaccinated. Vaccines are scarce. People are getting sick. Swine Flu is in 46 states. A reported 1000 people have died. A reported 36,000 people die nationwide from complications form the seasonal flu, but in 90% of these cases the patient is elderly. Swine flu is hitting the young harder than the seasonal flu does.

I'll admit I'm nervous. Nervous for John who is considered high risk due to his age and to the fact that he has Down syndrome, but moreso, I'm nervous for Julia who can't be vaccinated because the vaccine is made from egg, and she is allergic to eggs. She also can't take the vaccine you inhale because she has asthma. Overall, her asthma is under control. She takes medicine for it and we haven't had a hospital stay since she was a baby. I do wonder how her lungs would react if she had swine flu. I pray I don't have to find out.

Oh, did I mention that she has a fever, a sore throat and a cough? She says she really doesn't feel sick, and she doesn't look all that sick, but still I worry. We haven't been to the doctor yet (Bill is actually taking her now). Tylenol brought down the fever a little. I suspect it is strep or just a cold, but 6 kids were absent from her class on Friday, and Swine Flu has hit our town.

The vaccine for H1N1 just became available in our town this week. The schools are sending out memos about vaccinations. Since Julia and John are both high risk, we need to keep Swine Flu out of our house. The best way to do this is to have everyone vaccinated right? I don't know, I've always been a little on the fence about flu shots.

I must admit, I'm not one to usually rush my kids to the doctor for every fever, sore throat or stuffy nose. Kids get colds. Overall I believe, kids stay healthier when their immune system is left to do the job it was meant to do. With my girls, I wasn't one to rush to give over the counter cold medicines (some of which have since been pulled from the shelves). I let nature run it's course, and most of the time, with lots of sleep and fluids, after a few days, they were fine.

I did have my girls vaccinated, and since John was born, Bill, Katherine and I have all had the flu shot. I must admit, I'm unsure about the Swine Flu vaccination though because it is so new. There has been so much press about the potential dangers of vaccinating our children. We really won't know how widespread the side effects of this vaccine will be until after the shot has been administered to a larger population. Part of me wants to let nature take it's course for Katherine. She is not in the high risk group, but her brother and sister are. The doctor told me, I need to do all I can, to keep any flu out of our house. We don't want Julia getting the flu.

I'm not really sure where I am going with this. I guess I'm just wondering your feelings on the swine flu vaccination and swine flu. I have been arguing with a woman on Facebook about whether or not Obama should have declared swine flu a national emergency, whether a vaccination is really necessary. She is suggesting that the government is pushing dangerous vaccinations so pharmaceutical companies can make money.

Considering the number of people getting sick and fact that kids are dying. Swine Flu sure seems like it is something to be concerned about, but I wonder, am I hypersensitive because I have two kids who are in the high risk group. Is it really just ok to get Swine Flu, stay in bed for few days, let your immune system do it's magic?

I guess it depends on the immune system in question, huh?

Parenting Magazine Photo Gallery

2009-10-22T15:01:00.002-04:00

In celebration of Down Syndrome Awareness Month, Parenting.com is showcasing a photo gallery of children with Down syndrome.

A couple of days ago, I sent in a photo of John, and it is already posted. Check it out!

Go and add a photo of you child. Only requirement--they need to have an extra copy of chromosome 21 ;)

Maybe next October, we can have a child with Down syndrome gracing the cover of Parenting.

The 21 Act

2009-10-20T12:03:00.002-04:00

I have already shared that I am pretty passionate about Down syndrome research. While I am not looking to "cure" John, I would embrace a treatment that would help improve his cognition, memory, and possibly ward off early Alzheimer's disease.

There is not a lot of public money dedicated to Down syndrome research, which is why we have been trying to raise private funds with our fundraising team (which BTW you can still donate to by clicking the firstgiving button.)

That may change though!

On October 7 2009, Senator Brownback introduced a bill in the Senate called the Trisomy 21 Translational Research Parity Act of 2009 or the 21 Act for short.

The purpose of this act is to:

To amend the Public Health Service Act to expand and intensify programs of the National Institutes of Health and the Centers for Disease Control and Prevention with respect to translational research and related activities concerning Down syndrome.

Seems there was already congressional act in place, The Children's Health Act of 2000, that included provisions that addressed the research and surveillance needs of many disabilities, such as autism, traumatic brain injury, Fragile X, juvenile diabetes. Down syndrome, however, was not addressed by this Act. Gee, I wonder why? Maybe because prenatal testing and abortion addressed Down syndrome.

The 21 Act attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health and Centers for Disease Control and Prevention and will foster a better understanding of Down syndrome. If passed, it will mean federal support and funding for Down syndrome research, the establishment of 6 centers of excellence specializing in Down syndrome, a training program for medical and allied health clinicians and scientists relevant to Down syndrome.

I could go on, but I encourage you to read the bill yourself. Go HERE.

Moreso, I encourage you to contact your senator and ask him to pass this bill into law. This site will tell you all about how to write a letter to your congressman. It will explain how to address it, where to get contact information, what information to include. You do have a voice in this government, you just need to use it. Voting is one way, contacting your congressmen is another.

This law validates that individuals with Down syndrome deserve the same care and attention as individuals with other disabilities. By not being included in the current law, individuals with Down syndrome are being discriminated against. There are over 400,000 individuals with Ds living in the US today. According to the 21 Act, Down syndrome occurs in 1 in every 733 live births. That number would be higher if 90% of women who receive a prenatal diagnosis did not choose to abort.

Who knows, maybe if an expectant mother knew that Down syndrome was being researched, that there were centers of excellence across the nation specializing Down syndrome research and care, that our society was dedicated to better understanding Down syndrome, she might be less likely to feel that abortion was the best option for her and her child. Maybe if passed, this act might just give some hope and help at a time they really need it.

In the midst of yet another crazy morning

2009-10-19T09:52:00.003-04:00

Yeah, I know I'm behind on this whole 31 for 21. It's been hectic around here, and when I stop, I really stop--like all I want to do is wrap myself in a blanket, cuddle up on the couch, and watch Grey's anatomy on Tivo or track my fantasy football team stats.

I am waiting for the guys to come and sand and stain the wood floor that was damaged by our leaky roof. John's teacher is due here in an hour. Julia is home from school, and I am trying to get the house in order--as in order as it can be when all the furniture and stuff that belongs in one room is now in another. John again dumped out a box of random greeting cards, you know the cards that charities send you in the mail as an incentive to send them a donation. You didn't ask for them, you don't really want them, but you feel bad throwing them away. Mind you it is the same box of cards he dumped out yesterday which I cleaned up, but obviously didn't put well enough out of his reach.

As I was cleaning the cards up, I came upon a card that contained this quote:

"The best and most beautiful thing in the world cannot be seen or even touched.

They must be felt with the heart."

--Helen Keller

Guess those cards did come in handy after all; they provided some food for thought and enabled me to get away with a quick blog post. A post which could have been even shorter if I just posted the quote. Back to work.

Saturday To Do

2009-10-17T20:52:00.004-04:00

Clean up from Katherine's party

Pick up Julia from sleep over party.

Read John some books.

Squeeze in some OT for John

Take stuff off the boat before it gets pulled out of water.

Feed kids.

Push John on the swing.

Build fire in back yard.

Roast marshmallows.

Roast hot dogs.

Eat leftover Chinese food from Katherine's party last night.

Clean the house a little.

Watch Grey's Anatomy on Tivo

Hang out with family

Put away some laundry

Play on Facebook

Get kids to bed.

Choose line up for Fantasy Football team.

Gear up to watch the Yankee game.

Make blog post.

Bye Bye

2009-10-16T12:47:00.003-04:00

John says "Bye"

Today, as we were saying good bye to the teacher, nurse and speech pathologist who attended his first PPT meeting at our public school system, he decided a "bye bye" was in order.

Two syllables.

Sort of a big deal for him as he usually chooses one syllable in a word to get his point across, and with us that usually works.

He has a few two syllable words so as teacher, turtle, grandpa, and we do sometimes get two words together, "more swing", "more juice" etc. Usually, we need to encourage him to use more than one syllable.

Not today though.

"Bye, bye" he said. Unprompted. We would have settled for "bye".

Guess he felt the need to show the need to show off a little.

I see a teacher's pet in the making.

Somewhere

2009-10-15T10:42:00.003-04:00

There's a place for us,
Somewhere a place for us.
Peace and quiet and open air
Wait for us
Somewhere.
There's a time for us,
Some day a time for us,
Time together with time to spare,
Time to look, time to care,
Someday!
Somewhere.
We'll find a new way of living,
We'll find a way of forgiving
Somewhere.

There's a place for us,
A time and place for us.
Hold my hand and we're half way there.
Hold my hand and I'll take you there
Somehow,
Someday,
Somewhere!

I have often found myself singing this song from West Side Story since John was born. The other day, I was thrown for a loop because as I was singing it to myself, I suddenly realized that I had a piano backup. Katherine is singing a West Side Story medley in chorus, and she decided to try to play the medley on the piano here at home. I was in another room so she didn't even know I was singing the same song she was playing, quite the coincidence huh?

Now this song is not about Down syndrome or disability, but it about is living in a world of prejudice. In West Side Story, Tony and Maria are in love (which I must admit I find a bit crazy since they knew each other for what? A day?). Their relationship, however, is frowned upon in their small part of the world because Maria is Hispanic and Tony is not. They long for a better world. Somewhere where they feel they belong.

That is what I want for John. I want him to live in a world in which he feels he belongs, a world where he feels he has a place, where he is respected and valued. While, he will always have that in the safety of his home; I don't want him to spend the rest of his life here at home. I want him to experience more. I want his world, his safe place, to be bigger than his house.

I must admit, I don't have too much confidence in this world. I see a lot of prejudice. I think that this world needs some work. I know that things are better for individuals with Down syndrome than they were twenty years ago, but in my opinion, we still have a ways to go. As the song says, we need to "find a new way of living."

More of the world needs to take "time to look, time to care."

Twelve

2009-10-14T14:47:00.001-04:00

Happy Birthday to my oldest! Katherine turns twelve today.

As we enter the last year before I am officially the mother of a teenager, I think about my oldest daughter and all that she is, and I am so proud. Not that I'm impartial or anything, but if I do say so myself, she is a pretty great kid. She is passionate, smart, funny, and compassionate. Don't let her petite exterior fool you, she is a force to be reckoned with.

From the day she entered the world, she has been a fighter. She doesn't take things lightly. As a baby, if she didn't like something, she let you know. I'm still trying to figure out what she didn't like between the hours of 5pm and 8pm back when she was a newborn. Thankfully, whatever it was, she either learned to like it or it went away.

That crying newborn grew into an absolutely delightful toddler. An early walker and talker, we were always on the move, and she always had a comment about everything. Some things never change.

She is curious, inquisitive and not afraid to ask questions. If she wants answers, she gets them. She doesn't like to back down. She likes things her way. She doesn't like to give in or accept defeat. This quality has been a help and a hinderance to her. As her mother, this quality has also proven to be exhausting over the years. We can have quite the heated discussion. Thankfully, we are just as quick to make up as we are to argue.

As tough as she can be on the outside, she is the biggest softie on the inside. Her feelings get hurt easily, and she takes everything to heart. Like her mom, she is a bit of a worrier. She is fiercely protective of those she loves; especially her little brother. She is also his biggest fan. She cried when we first told her that he had Down syndrome, but I don't think shed a tear since. At times, she is MY role model.

Here she is right on the cusp between childhood and young womanhood, and I am excited for her. Excited for what lies ahead. She has so much going for her. At the same time I am nervous for her, because these middle school years can be so hard. I worry that her heart is going to break. I worry that she'll have to deal with peer pressure and feeling the need to fit in or be popular. I want to protect her, but realize that I need to give her freedom to become who she wants to be. She needs to make mistakes and hopefully, learn from them. I suspect I'll be doing some learning too.

I worry that she won't turn to me at times because she is too stubborn to realize, or admit, that she may need my help. How often has she told me, "I can handle it. I can do it. I know." Seems like I have been hearing her say those words since she learned to talk eleven years ago. Miss independent.

This weekend, we packed away the American Girl Dolls that were collecting dust on her closet shelf. We activated her new cell phone and discussed how she can't just raid my make up drawer and jewelry box without asking. She is busy with friends, school, piano, field hockey, drama, and volunteer projects. Look out teen years because she is heading your way at full speed!

Twelve years.

Twelve amazing, beautiful, entertaining years with one incredible girl.

Getting Ready for the Transition, but Not Exactly Sure What to Do

2009-10-13T08:49:00.004-04:00

We are starting the process of transitioning from Birth-to-Three to our local school district. On John's third birthday in January, he will be attending the district's Early Childhood Center. I have heard nothing but good things about this program. He will be in a class with children who do and do not have and Individual Education Plans (IEPs). I am very optimistic that he will have a great time at school.

I have met the director of the program as well as the head of the district's Special Education Department, and both seem to truly care about children and understand the modifications that may need to be made in order to teach children who learn a bit differently. Nonetheless, school districts have budgets, and more than just my child to educate.

The nerve wracking part of the process is making sure we get John the services he will need to be delivered in the manner most beneficial to him. I am entering into this process with an open mind. I want to believe that the school district wants the same thing we do, that it wants to help John reach his full potential as much as we do. I don't want to think that the school will be my adversary, but I have heard stories. As much as the school district might like to give you what you want, in the end they only need to give you what is appropriate to your child's needs in the least restrictive environment.

I have to admit, I feel like I have a lot to learn about the process and the laws governing the process. It's all new to me. Neither of my girls had an IEP. When they went to preschool, my biggest concern was whether or not they would have a good time, make friends and be well cared for. Of course, I have those concerns for John, but there are so many more concerns, so many other things that need to be taken into account.

A couple of weeks ago, Bill met with an insurance advisor who works with families who have children with special needs. He suggested that we contact an advocate to help us in our dealings with the school system. I know other parents who have children with special needs have brought an advocate with them to their Planning and Placement Team (PPT) meetings. Other parents have told me not to bring in an advocate from the start because it appears too adversarial. At this point, I feel we need an advocate just to advise and educate us, not because we feel like we need to be armed for a fight.

I am looking for information and opinions. I am active in the Special Education PTA, and have asked other parents for their feedback about advocates. Now I am asking you parents out there in blogland. Have you used an advocate? If so, in what capacity? Did it help or might it actually have hurt the relationship you had with the school? What has been your experience with your school district?

J-E-T-S

2009-10-12T20:07:00.001-04:00

We are heavily into football these days. We are all involved in a fantasy football league. Katherine and Bill each have a team, and Julia and I manage a team.

My husband has had season tickets to the New York Jets games for longer than we have had our children. Like it or not, we are Jets fans. Our children don't have too much of a choice

There is a cheer that is said at the stadium during Jets games. It goes:

J

E

T

S

JETS, JETS, JETS (said really fast).

During the games, the cheer was lead by a fireman who had seats close to the field. He would stand up, pump his fist, and yell "J". The crowd would roar back "J". I haven't been to a game in a good many years. I hope that fireman is still there. I suspect he is.

I am straying from my story. On game day, we cheer the Jets cheer in this house.

When we spell J-E-T-S, guess what John replies?

You guessed it!

JETS!

And I was worried we wouldn't get a football fan. Not only does he say the Jets cheer, he also claps whenever the crowd does. He has the makings of a true fan. Not sure he understands the mechanics of the game yet, but give him time.

Are you ready for some football? It's Monday Night--Jets vs Miami.

Why I'm Behind on My Posts

2009-10-11T08:39:00.003-04:00

1 Bride

1 Groom

6 Bridesmaids

6 Groomsman

1 Wedding

2 Rental Homes

3 Jobs

2 Houses

7 Cars

1 Boat

2 Caribbean honeymoons

14 Trips to Cape Cod

3 Children

2 Miscarriages

1 Extra 21st Chromosome

And 16 Years Later....and we're better than ever

Happy Anniversary Honey!

Together we've had the best of times and the worst of times. We'll undoubtedly have more of each, but at least we'll get through them as we always have....together. For better or worse right?

Even during those "worse" moments, the "better" kept us going.

We can count a lot of things, but the amount of love and devotion we give to each other and our family is unmeasurable.

The laughter over the past 16 years..countless.

The good times...never ending.

I'm so glad we were able to get away Friday night to celebrate 16 wonderful years together...even if being away did put me behind on my blog posts.

An Unwelcomed Bedfellow

2009-10-08T07:25:00.002-04:00

No, it isn't one of my kids or my husband.

It's grief.

It crawls into bed when my husband is deep asleep or gone for work.

It hits me when I least expect it. When I am too vulnerable to fight it off. It sneaks into my dreams. Whispers in my ear as I am waking up.

It is mostly grief over the life that could have been.

Actually, it is grief over the life that was. Years later, I still think of the baby who died in utero. I don't even know if I can say I miscarried him because I didn't. At twenty weeks, half way through my pregnancy, there was no heart beat. No real explanation as to why it happened, just guesses without any proof.

He was just gone; yet still there. My body wasn't ready to let go of his body; he had to be surgically removed. My heart and mind were not ready to let go of him either. I guess they still aren't. It is hard to let go of a dream that you had for so long. I thought having another child would help, and it did, but then Down syndrome entered the picture, and that dream of having a typical little boy was gone again.

Selfishly, I still want that typical little boy. I want him for me, and I want him for my husband. That doesn't mean I don't want John; I just want what I am missing.

It's not fun waking up to grief. When I start to wake up and think about my day, it doesn't get much better. After I get the girls off to school, we usually start our day with a therapy session. A person comes into my house to basically remind me again of all the things my son most likely would be doing if he didn't have Down syndrome. I could think of so many ways I'd rather start my day, so many things I'd rather being doing with my little guy. At times I feel trapped by the Down syndrome and what it entails; this just adds to the grief.

Then I hear them. Katherine in the bathroom getting ready for school. John babbling to himself in his crib. Julia's heavy footstep going down the stairs. My reasons to get up in the morning.

Seeing their faces pushes the grief back, screams it back to sleep.

I get up because life is waiting.

And despite the waves of grief, it is a pretty great life.

Unlike many, I never lose sight of that.

Who knows, maybe I have my unwelcomed bedfellow to thank for that.

Tired

2009-10-07T14:26:00.002-04:00

I'm tired. I woke up around 2 am the past two nights and had trouble falling back to sleep.

Too much on my mind.

Unfortunately, I don't have the luxury of sleeping in or taking a day off.

Too much to do. These three kids have busy schedules!

So that's my post; don't have time for much more--I'm due at a Girl Scout meeting.

GACK

2009-10-06T13:38:00.005-04:00

One of the first words John said was "book". He would sign book and simultaneously say "bu". He just wouldn't say the "k" sound at the end. Of course, if you asked him what sound the letter "K" made, he could tell you perfectly.

Still, it was perfectly clear that "Bu" meant "book".

Happy that he was "talking", but wanting to him say the word correctly, I would make him repeat the "k" sound after he said "bu". I made him work for that book!

We would sometimes get "boo.......k", but never a quick "book".

Well over the last week, book has gone from "bu" to "Gack".

I got my wish. He got the "K" sound on the end. Silly me for not being clearer that he still needs to keep the "Bu" sound at the beginning.

John asks for books a lot over the course of the day.

Gack, Gack, Gack.

It sounds like we are living with duck in need of some speech therapy :)

Quack? No...

Gack? No...

Oh, book!!

Never a dull moment.

Oversimplifying Down Syndrome

2009-10-05T10:52:00.003-04:00

Do you ever get the feeling that raising a child with Down syndrome is being oversimplified?

How often have you said/heard?

"They are more like us than they are different"

"Kids with Ds will do the same things as other kids, only they may do them later."

"Not everyone has to be a lawyer or a doctor"

"Kids with Ds go to their local schools."

"Children with Ds may have more health issues, but most are easily treatable."

"Even typical kids have their challenges"

Well, when you put it that way. It all sounds relatively simple huh?

Nothing to get so worked up about huh?

All of those sentences are true, but there is so much more to the story.

At least for me.

Then again, maybe I'm making it more complicated than it needs to be.

We Romped for Research!

2009-10-04T22:01:00.004-04:00

The Romp for Research was a huge success. Donations are still coming in, but so far the event raised over $200,000 for Down syndrome research. This event was the brain child of a couple of families who believed that they could make a difference, and boy were they right! The success of this event just shows what people can do if they believe in possibilities and are willing to take action.

Thank you to all who have donated to our fundraising team, Jubster's Jokers. Our First giving page will remain active until the end of the year should anyone still want to be a Jubster Joker and donate to the Down Syndrome Research and Treatment Foundation.

It was a beautiful day. The kids had a great time. We had a chance to meet up with some blogging buddies as well as some of our local friends. The girls did arts and crafts and played games. They also helped pass out these mice to all of the kids in attendance. John enjoyed the pizza that was served. He liked the ball pit, the music, and playing with the stomp rockets. He walked around the field and eventually romped his way to sleep.

Show Me The Money

2009-10-03T08:59:00.005-04:00

Tomorrow, we will be participating in the Fourth Annual Romp for Research benefitting the Down Syndrome Research and Treatment Foundation (DSRTF). The DSRTF is the leading private funder of Down Syndrome research, and was awarded the 2009 Christian Pueschel Memorial Research Award by the National Down Syndrome Congress.

At leading universities across the country, research is being conducted to better understand the effect an extra copy of the 21st chromosome has on the development of the brain. Scientists are hopeful that this research will lead to a treatment which could improve cognition, memory and learning in individuals with Down syndrome.

From the DSRTF website:

"A Small Change in Cognitive Capability Could Have Profound Impact on Independence

Because the majority of individuals with Down syndrome fall into the mild to moderate range of cognitive impairment, a 10-20% improvement in cognitive capability can provide a greater number of people with the ability to live independently, to hold a job and to be more integrated into their communities.

The focus of current research centers on this hypothesis: Each cognitive deficit in Down syndrome is due to the presence of an extra copy of a specific gene(s), and treatments directed at reducing the expression of a specific gene(s) or the actions of its protein products will prevent or reverse the deficit. Testing this hypothesis requires answering these questions:

1. What cognitive abnormalities are most important in Down syndrome?
2. What neuronal circuits are implicated in each abnormality?
3. What gene(s) are responsible?
4. How does the presence of an extra copy of a particular gene cause the abnormality - i.e. what molecular and cellular mechanism is responsible?
5. What treatments can be devised to prevent or reverse the abnormality?
6. Does administering the treatment improve cognition in people with Down syndrome?"

Wouldn't an improvement in cognition ultimately be a good thing for the Ds community?

I think so! That is why we started our fundraising team, Jubster's Jokers. If you think so too, you too can be Jubster Joker--all you need to do is click on the First Giving button on the sidebar to make a donation!

Yeah, I know it is a shameless plug for money, but I've asked everyone else to donate, so why not you?

No donation is too small and each donation greatly appreciated! It's time to energize funding for Down syndrome treatment, research and awareness. If we parents won't lead the cause, how can we expect someone else to?

Oh, and if you live close to NYC--consider attending The Romp. There will be great food, clowns from Ringling Brothers Circus, a bouncy castle, a great silent auction, and a bunch of other activities for the kids. Admission is free, but a donation is suggested upon admission.

Here's a photo of Jubster at last year's Romp (after the fire truck sprayed the crowd to cool us off--it was a really hot day.)

It's that Time of Year Again--31 for 21

2009-10-02T16:13:00.003-04:00

Two years ago, Tricia at Unringing the Bell decided she was going to celebrate Down Syndrome Awareness Month by posting every day during the month of October.

It was the first 31 for 21 challenge that inspired me to create my blog. I'm not sure I would be blogging if not for Tricia's idea. I think of all of the people I have connected with thanks to this blog, and I can't imagine traveling this journey without you.

I must admit though, I almost considered not participating this year. I have been so busy that I haven't had much time for my blog. As it is, I already missed day 1 so I guess it will be a 30 for 21 challenge for me. I also feel pressure during the 31 for 21 to stay upbeat about Down syndrome which I will admit is still sometimes hard for me. I can however be upbeat about John.

So that is what I will share for my first post.

There is the diagnosis which can be hard to deal with at times.

And then there is the child.

Who with one smile

One kiss

One laugh

One accomplishment

One bit of mischief

One tear

Can steal your heart....

Over and over again.

Exhale

2009-09-17T11:00:00.004-04:00

Sometimes you just need to exhale.

After John's IFSP meeting on Monday, I felt the stress building up. Does he have autism? Am I in denial? Who should I trust? Why aren't the answers easy? What should I do? Am I overreacting? Do I need to do anything? Am I looking for problems where none exist?

Then I wrote about it here, and that helped. Especially, the comments received. It helps to vent to someone who is walking down a similar road.

I spoke to John's teacher about it, and that helped. She gets it-as a teacher and as a mother.

I took action and worked on getting an appointment with a private OT.

I did what I thought needed to be done.

We have been trying to finalize his enrollment in a preschool program. With his therapy schedule, I wasn't sure I would be able to make it work, but after his IFSP, I felt even stronger that the current intervention isn't enough. He doesn't need more in home therapy; he needs to get out of the house. I got on the phone and made it happen.

The program is 2 days a week for three hours each day, and it is just for children with special needs. I am all for inclusion, but as the first experience being away from home, away from me, I felt like he could use some extra support. And hey, I'll admit, I could use the extra support. I feel better leaving him with people who understand children with special needs. People who will still have expectations, but will still make accommodations if needed. I wanted flexibility. I wanted someplace safe.

Yesterday, we went to school. I stayed with him for most of the day. At first, I was at his side, but once he walked around the classroom and became engaged with the teacher, I moved into the background and watched from afar. Ever once in awhile, he would turn and look for me. When he saw me, he smiled, but did not get up to come to me. I took this as a good sign.

I also wanted to see if some of the sensory stuff lessened in a different environment, and it did. When I saw the teacher who would be spending the day with him, I had a bad feeling though. She had the most gorgeous mane of long silky dark hair. I almost wanted to run my fingers through it! For an instant, I thought John would do nothing put play with her hair the whole morning. She let him touch her hair, and then directed him to another activity which he readily did. He played with play dough and played on see saw with another little boy. He sat and did circle time and sat with the other kids for snack. He looked so little, yet like such a big boy, sitting on his little chair (that was still too big), drinking his juice out of an open cup, and waiting for the teacher to come around with the snack.

Unlike some of the other kids there, he was able to choose between veggie sticks and cookies. He asked for "more" and for "juice" and couple of times he even said/signed "thank you". He followed directions. Although he needed help, I could see he was trying. I was so proud of him.

Of course, when we go back tomorrow the novelty may wear off and he may stick to me like glue, but I am being hopeful that he will be excited to be back. I wish that I had sent him months ago, but I was waiting for the walking. In retrospect, that was my hang up; this school would have taken him even if he wasn't walking. I wanted him to be somewhat independent before I let him go.

I wanted him to be able...

Sensory Stuff

2009-09-15T11:42:00.002-04:00

Yesterday, we completed John's last IFSP with Birth to Three. This plan will take us until January when he starts school. As I mentioned, our Birth to Three service provider stopped providing services so we needed to switch to a new provider. The timing was not ideal--right when we needed to do his 6 month IFSP and right as we were preparing to transition into the school district, but overall, it has been a relatively easy switch. We were lucky enough to have John's teacher, who we love, stay with us. His new therapists really seem to know what they are doing and are great with him.

The IFSP meeting started off fine--we want more functional speech, we want him to be able to walk up stairs, we want him to follow directions, have more sustained play. We seemed to be in agreement on what his goals should be, and what services he needed. Just when I thought we were done with the IFSP, the service coordinator (who is also his PT) pulls out a screening for autism called the MCHAT.

She caught me off guard with this, and at first I refused to have him screened because the test was developed for typically developing kids, and why would I agree to have him take a test he most likely would fail because he has Down syndrome? Was I ready to start down a road his doctors and his previous EI team didn't think we needed to go down? A road I really don't want to go down.

I understood the new PT's reasons for wanting him tested. I had discussed some sensory behaviors that were concerning me, and that while I didn't think he had autism, I did think he might have some sensory issues that needed to be addressed with OT. I am scared of a dual diagnosis, but I don't want to live my life in denial either. Which leads me to the question:

How concerned should a parent of a child who has Down syndrome be when that child seeks sensory input?

Should I be overly concerned that when John is tired or stressed or bored, he'll crawl around the perimeter of the room? It's not like he does it for hours on end.

Should I be concerned that he is fixated on playing with long hair? Spreading it out to see the light go through it?

Should I be concerned that he still likes the toys that light up and make music, and finds those toys more fun to play with sometimes?

Or is this part of who he is and as long as he is doing other things, learning and growing? Is it ok? Is it somewhat typical for children with Ds?

I'm still not sure. I don't want to make a mountain out of a molehill, but I don't want to be the ostrich with her head in the sand either. I want answers. This sensory stuff is like that itch you can't scratch (hee hee--nothing like using all those catch phrases in one sentence huh?)

When I take the sensory quirks out of the picture, I think John is doing so great. He is walking. He is trying to talk more. He knows his colors, his letters, some of his shapes. He is starting to get the concept of counting, and helps me when we count to ten. He makes his needs known. He explores the house just like any other toddler (only he has found some more creative ways to cause trouble).

I think he is so ready for the next step. We have spent the past 2 1/2 years in this house, focused on therapies, away from other kids, that I think he would benefit so much from being in a classroom setting. I have to believe he will welcome the change. I know I'm getting bored with our in house therapy routine; he must be too.

I wish I knew what the solution to the sensory issues was. I guess we'll start with a new OT consultation, and see where that takes us.

Hi Again

2009-08-26T16:18:00.004-04:00

Just thought I'd say hi to my neglected blog.

Don't feel much like writing lately. Like everyone, we've been busy.

We had a glorious vacation on Cape Cod. Wish we could have stayed for two weeks instead of one. We had a week filled with sunshine, the beach, great friends, biking, delicious food and drink, the laughter of children, music, and lounging by the pool.

Now we're back and starting to get ready for the start of school next week. Julia got the teacher she wanted, and a bunch of Katherine's friends are in her middle school community. The girls are happy and excited so all is well.

We have a leak in the roof that has made it's way into the house, eroded the ceiling, and wiped out the electric on one side of the family room. Hopefully, that will be fixed next week.

John is walking more which we are all excited about. He is still so little and I must admit, he looks pretty funny walking around the house.

We have a new Birth to Three provider. We met his new physical therapist yesterday. She is very nice. She was impressed that he knew the sounds all of the letters make and that he could sit and independently play with one of those colored shape sorters--you know the wooden ones that have the pegs that you put the shapes on...all the blue squares on one peg, the green circle on the other etc. John has mastered that toy--even says the colors as he puts them on the peg. When he puts the wrong colored shape on a peg, he even says "no, no, no" and then corrects it. It's pretty cute.

The medical stuff is always on my mind. We need to go see some eye doctors. John is due to see his opthamologist and a couple of his therapists have suggested his seeing a developmental optometrist. As I mentioned before, John has this habit of crawling around the perimeter of the room at times. We suspect that he is following his shadow. It could be a visual processing thing. It could be a sign of autism (which I will tell you right now--a dual diagnosis might just send me over the edge--and make me once again question the existence of a God). The perimeter crawling could be a sensory thing. Then again, maybe he just thinks it is cool to look at his shadow.

Some good news--we didn't get a diagnosis of celiac disease at our follow visit with the GI doctor, but blood tests do show that taking him off gluten would be a good idea. So the child who hardly had any variety in his diet, now has even less. The doctor said that if we need to cheat every once in awhile, it is won't be the end of the world. We cheat with pizza.

I took the girls to the mall today. Thankfully, they are starting to appreciate the value of the dollar a bit and have taken to looking for a bargain and really evaluating if they need everything they want. Not sure lip gloss, and scented shower gel from Bath and Body Works qualifies at a necessity though.

As seems to be the case with most of our midweek morning trips to the mall lately, we ran into a group of disabled adults who were out with care providers. None seemed all that engaged with their environment or each other, and as always, I tell myself, "that will not be John", but then that other voice in my head says "you don't know that."

I felt like a hypocrite because when I looked at this group all I saw was the disability. I felt sorry for these people. I wondered about the life they had. Where their family was. I didn't want my son to be like them when he was an adult.

The end of summer is making me pensive.

I've been thinking a lot about how raising a child with Down syndrome is a life that is filled with contradictions.

I've been thinking about how my daughters are no longer little girls.

I've been thinking about how life was before a series of joyous events turned traumatic, how life is now that the trauma is over, and I wonder what will be.

I've been thinking about making a point to write more, and at the same time questioning whether I want to continue blogging.

Now those might be topics for some interesting posts, but I'm too tired to write about any of them.

Maybe I'll take the kids to the beach instead.

NDSC Recognizes Work of DSRTF

2009-08-07T08:38:00.002-04:00

I just received this email this morning:

DSRTF Receives Prestigious 2009 Christian Pueschel Memorial Research Award

"On August 1, 2009, The Down Syndrome Research and Treatment Foundation (DSRTF) was awarded the prestigious 2009 Christian Pueschel Memorial Research Award from the National Down Syndrome Congress (NDSC). The award was presented to DSRTF’s CEO, Dr. Michael Harpold, by Dr. Sigfried Pueschel at an awards banquet during the NDSC Annual Convention in Sacramento, CA.

“We are honoring DSRTF for supporting research which contributes to a greater knowledge and understanding of Down syndrome,” said Brooks Robinson, national president of NDSC. “We salute them for their focus on funding essential research that will improve cognition and their commitment to seeing the results of this research translated into effective treatments.”

“DSRTF is deeply honored and grateful to have been selected and recognized by NDSC to receive this prestigious award,” said Dr. Harpold. “It is especially meaningful for DSRTF, as a national organization only recently founded in 2004 with an exclusive mission and focus on Down syndrome biomedical research, to receive this significant recognition from our friends at NDSC. NDSC is one of the longest standing nonprofit organizations serving the Down syndrome community with a complementary focus on establishing a world with equal rights and opportunities for people with Down syndrome. Historically, Down syndrome biomedical research and the development of effective new therapeutics, particularly related to cognition, has remained a disproportionately under-addressed and severely under-funded key approach in creating meaningful new opportunities for children and adults with Down syndrome. We are extremely proud that this year’s Christian Pueschel Memorial Research Award recognizes the rapid and unprecedented progress that has been, and continues to be, accomplished through DSRTF-supported research and the unique and essential role DSRTF is serving in creating new opportunities for all people with Down syndrome.”

The Christian Pueschel Memorial Research Award is given in honor of the late Christian Pueschel, son of Sig Pueschel, M.D., Ph.D., J.D. Dr. Pueschel, who lives in Rhode Island, has devoted his career to improving the lives of people with Down syndrome. This award recognizes that the value of people with Down syndrome is intrinsically rooted in their humanity and uniqueness as human beings.

Two DSRTF-supported researchers have previously received NDSC research awards. Dr. William Mobley, currently Chair and Professor, Department of Neurosciences at the University of California, San Diego School of Medicine, received the Christian Pueschel Memorial Research Award in 2007, and Dr. Roger Reeves, Professor, Department of Physiology at Johns Hopkins University School of Medicine, received the Theodore D. Tjossem Memorial Research Award in 2008.

Dr. Harpold additionally provided a comprehensive update to the NDSC Convention attendees concerning DSRTF and the DSRTF-supported research advances in a presentation entitled, “Down Syndrome Cognition Research: ‘Unprecedented’ Progress and promising New Therapeutic Strategies and Opportunities”. Also, during this year’s convention, Dr. Mobley further detailed the results of the DSRTF-supported research in his laboratory in a presentation entitled, “Exploring the Neurobiology of Down Syndrome: From Science to Medicine”.

The Down Syndrome Research and Treatment Foundation was founded in 2004 as a national organization and is dedicated to its mission: To stimulate biomedical research that will accelerate development of treatments to significantly improve cognition, including memory, learning and speech, for children and adults with Down syndrome. The goal is to create new opportunities for all individuals with Down syndrome to:
* Participate more successfully in school;
* Lead more active and independent lives; and
* Prevent early cognitive decline with aging."

Didn't I tell you that the DSRTF was doing exciting work!!! Click HERE to get on the DSRTF mailing list so you can learn more about the current research being done!

Oh, and don't forget, if you want to aid in the DSRTF's fundraising efforts, you can attend the Romp for Research in New York City on October 4. Just click on the Romp for Research button on my sidebar for more information.

Can't attend? Well, we would welcome any and all donations to our fundraising team. I know that was a shameless plug, but if you would like to donate a little something just click on our First Giving button also on the sidebar.

Thanks!

Review Time

2009-08-06T17:37:00.002-04:00

Boy those 6 months went fast. So John is entering his last 6 months in Birth to Three (B23). After that, any therapies he needs will be provided by the school district. We also just found out that our B23 provider will no longer be providing our services come the end of next week. Not the greatest timing as we are starting the process of transitioning out of B23.

So will have our 6 month review with our current provider. Start with a new provider. Make up another plan with the new provider. Meet with the school district and come up with a plan for once he turns three...all in the next few months.

You would think these reviews would not be so challenging, but they are. I don't want to limit what I expect of him, but at the same time, I want to be realistic. What is realistic for a 2 1/2 year old with Down syndrome? I'm still not sure.

Well, we have the obvious things:

I want him walking 100% of the time. While he can walk, and does walk. He still crawls a lot; a part of this he does for fun. He crawls around the perimeter of the room at times so he can watch his shadow. Not sure how concerned about that one--contemplating taking him for an evaluation to see if he is having sensory integration issues. One of his therapist recommended seeing a developmental optometrist because John seems to like the sensory input of light and dark contrasts. But I diverge--sensory issues can be a topic for another post.

I'd like him to be able to climb up the ladder of the slide and walk up stairs.

I'd like him talking more, but I guess need to be more specific. I want him saying more two syllable words. I want him putting two words together.

Yeah, it would be great if he could be potty trained by the time he starts school.

Eating with a fork would be nice too.

Those are the obvious things, but I feel like I need to be more specific, give more guidance.

He is starting to identify colors.

He knows some shapes.

He knows the sounds letters make and the sounds some animals make.

I'd like him to master the meaning and appropriate action for "Be quiet" as he now screams when things don't go his way or he gets excited.

I'm just brainstorming here a little. I thought we wouldn't have to do this review until next month when we get our new provider, but I was informed yesterday that it needs to be done next week. Now, I am trying to look ahead and see where I would like him to be when he starts school.

So what is your 2 1/2 year up to? Not to compare, but you know, sometimes it helps to have a frame of reference. A peer group to judge milestones.

While, we are at it, any good toy recommendations? I feel like we are ready from something new.

All this at time when all I really want to do is go on vacation :)

Words and Happiness

2009-07-29T13:07:00.003-04:00

I was catching up on the days headlines on The New York Times webpage, when I came upon..

This piece in the Opinion section

The author shares what a student with special needs has taught him about the power of words. He also learns a thing or two about happiness and humanity along the way.

"We write things down, and hold on to them, for many different reasons. To stop time and keep the “edge of marveling” honed, or at least handy. To create pockets of order. To prove to ourselves that we exist. To be able to immerse ourselves in whatever matters to us but is gone."

It is thought provoking....especially to those who like to write and have someone in their lives who sees the world a little differently.

Got Anything to Donate?

2009-07-28T13:10:00.003-04:00

So in my post yesterday, I did a little promoting of the upcoming Romp for Research, and now I am going to do some more.

Another way you can support the Romp for Research, and the Down Syndrome Research and Treatment Foundation, is by donating an item to the Romp's Silent Auction.

It doesn't need to be big.

Maybe you have a business and are willing to make a donation.

Maybe you are crafty and want to make something to donate. A sweater? A quilt? Jewelry?

Maybe you want to send in a toy or a book to be included in a basket.

Be creative.

You have something you would like to donate, email me at jubsmom@gmail.com

Thanks!

Research, The Key to a Brighter Future

2009-07-27T12:39:00.003-04:00

In his book, A Parent's Guide to Down Syndrome, Toward a Brighter Future, Dr. Siegfried M. Pueschel writes:

"The field of Down syndrome already has all the major ingredients to test some possible pharmacological therapies...In fact, recent preliminary data from my laboratory suggest that, in Ts65Dn mice, some of the impairments in learning and memory can be reversed. If these findings are confirmed, we may soon have a candidate drug for Down syndrome. However, even if a drug is not developed soon, the important fact is that the tools are here now. Chances are that, in some laboratory around the world, somebody within the next decade may discover the basis for reversing some of the cognitive impairments associated with Down syndrome. Because of that, I have firm reasons to believe that our children have a brighter future ahead of them."

Would you like to see some of the cognitive impairments associated with Down syndrome reversed?

I would!

Would you like our children with Ds to have a brighter future?

I would!

What can we do to make sure this research continues?

Well, I'll tell you!

We can support the Down Syndrome Research and Treatment Foundation.

How you ask?

Well there are many ways:

You can become knowledgeable about the current research being done so you can educate others.

You can make a donation directly to the DSRTF

You can attend the Fourth Annual Romp for Research on October 4 in New York City.

You can start your own fundraising team and raise money for the Romp.

If you are enable to participate in the NYC event, you can start your own Romp in your hometown.

Or, I'll make it even easier for you. You can support our fundraising team. Jubster's Jokers! Just click on the First Giving Sponsor Button on the sidebar!

Last year, our fundraising team, Jubster's Jokers, raised over $7,000. We are hoping to reach $10,000 this year!

Let's face it, when it comes to funding the research of that pesky extra 21st chromosome, if we aren't going to support and promote it, who is?

John's Weekend

2009-07-20T13:11:00.003-04:00

So how does a two year old with Down syndrome spend his weekend?

On Saturday, he went to a birthday party for a friend who had open heart surgery--just like he did (Instead of presents, guests give a donation to the Babies Heart Fund at Columbia University.)

There, he played in the ball pit with the other kids:

He jumped in the Moonbounce with his dad:

He had cake and ice cream and was pushed on the swing too.

On Sunday, he went out on his family's boat. His cousins, grandparents, and aunt and uncle joined in the fun. He did spend a good part of the afternoon, watching his favorite John movies down below, but after awhile he was getting a little bored, and seasick. He wanted to see what the big kids were up to. Hey, they were jumping off the boat and swimming!

He decided that was unfair. He wanted a chance to cool off in Long Island Sound just like the big kids!:

Tough life huh?

Another Bump in the Road

2009-07-15T12:45:00.007-04:00

John will sign and/or "say"

cracker
pizza
bread
toast
roll
waffle

He will ask to eat by signing/saying his approximation of "more eat"

He will ask for the afore said foods. Some of his favorite foods.

Just got his blood tests back for food intolerance.

IgG antibodies were elevated for (drum roll please)

Wheat and Soy

What do John's favorite foods have in common?

Yup, Wheat

What kind of milk does John drink?

Yup, Soy

Now food allergies are not a new concept for me. Julia is allergic to sesame, milk, eggs, peanut and tree nuts. She was allergic to wheat as a toddler, but thankfully she outgrew it. I know that substitutions can be made. I know the drill. I know it can be done. I also know how hard it can be.

I guess I should be thankful that it was only wheat and soy. I should be thankful that he doesn't have a full blown, life threatening, allergy like Julia, but right now, to tell you the truth, I'm a little fed up.

Like feeding him isn't hard enough. The kid won't touch a vegetable. Only meat I can get him, if the stars are aligned, is a chicken nugget or a meatball. He is hesitant to put anything new into his mouth. Put something he doesn't want to eat in front of him; he picks it up and throws it on the floor.

I had to just laugh when the nurse said wheat and soy. I had to laugh because if I didn't I would have just broken down crying because life just got a little harder.

Then of course I felt guilty because I thought of all those children who are unable to eat by mouth. I thought of feeding tubes and surgeries.

Compared to that, we don't have much to complain about.

But, compared to "normal"...

It's all relative I guess, but gosh, I miss "easier".

SEW--Pool Time

2009-07-15T07:44:00.004-04:00

Lucky for John, big kids like the blow up (deflating) baby pool too.

A Burden?

2009-07-14T08:35:00.005-04:00

Merriam-Webster defines burden as:

Burden:

1bur·den
Pronunciation:
\ˈbər-dən\
Function:
noun
Etymology:
Middle English, from Old English byrthen; akin to Old English beran to carry — more at bear
Date:
before 12th century
1 a: something that is carried : load b: duty, responsibility
2: something oppressive or worrisome
3 a: the bearing of a load —usually used in the phrase beast of burden b: capacity for carrying cargo

We hear that children with Down syndrome will be a burden on their families. Some expectant parents when they receive a prenatal diagnosis will ask if it is a burden they can carry. Some parents who receive the diagnosis at birth will wonder the same thing. Some will question the veracity of this statement in the first place.

By definition, yes, the diagnosis, for me at least, is a burden. It is "worrisome", and at times that worry can feel "oppressive". Worries about leukemia and other major health issues do weigh. Worries about what will happen to John when I am gone. Worries about how that extra chromosome will effect John's development and what effect his development will have on the rest of our family.

All children, however, come with their share of worries and responsibilities. All children are carried by their parents for a portion of their lives. At times, in raising any child, I suspect a parent can feel like a beast of burden. Being a parent is not always easy. I dare you to find a parent to tell me that it is.

It is really less about our children at times than about our own burden, our own "capacity to carry the load". I will admit; it has been harder for me to carry the load that comes with Down syndrome. At the same time, I appreciate that I am carrying it and the ability to carry it has taught me something about myself. It has showed me my own strength; my own capacity to expand my way of thinking. It has opened a portion of my heart that I'm not sure I knew existed.

I hope that as John grows older; he will show me that many of my worries are unfounded. I hope that he will be able to carry his own load. I hope that for my daughters as well. If any of my children, however, are unable to carry their own load, I pray that I will be there to help see them through. I pray that they will be there to see each other through.

Love.

Love can be a burden.

Caring about someone more than you care about yourself.

Being responsible for them.

Love can be oppressive. All encompassing. Overwhelming.

It can make us do things we didn't think possible.

As parents, we wouldn't worry so much, if we didn't love our children so much.

Our children, our burdens, show us our own capacity to bear the load.

Our own capacity to bear the burden.

Our own capacity to bear the love.

Parents.

Are we beasts of burden or beasts of love?

Or both?

Or, in our case, are they the same thing?

Wordless Wednesday--John say "Cheese"

2009-07-08T13:58:00.003-04:00

Are you seeing a trend here?

Wordless Wednesday--Shaving Cream Therapy

2009-07-01T11:23:00.003-04:00

Overdue...A Library Tale

2009-06-25T07:04:00.003-04:00

Recently, I've started taking John to the Children's library. I must admit this visit is long overdue. There are many excuses why we haven't been there--too busy, we have enough books in this house to open our own library, etc., but if I am being honest, a part of the reason is that it is a bit hard for me to be around typical kids John's age.

I have yet to do with John, all of the toddler activities I did with my girls. Again, many reasons for this--John's therapy sessions keep him busy, he's the third child and there is less time, the realization that I don't need to pay someone else to sing the "itsy bitsy spider" for my son. We did do a music therapy class, but this was specifically for children with Down syndrome. We are part of a play group with other children who have Ds, but John does not socialize much with "typical" two year olds.

Now, looking back, at two years old, Julia didn't have her own set of friends yet either. Yeah, she was doing a gym class and a music class, but that was it. We didn't have play dates with any of the kids from these classes. She had her older sister though, and the siblings of her sister's friends. Julia was around other little kids. I had a two year old and five year old. Life back then was all about play group, going to the park, and finding little kid activities to fill the day.

Life isn't like that anymore. We don't have afternoons with nothing to do, but hang out at the playground or library. We have therapies, we have gymnastics, soccer, Girl Scouts, religious education. I don't need to find things to do to fill my day now like I did when Katherine and Julia were preschoolers. They fill my day.

Since we waited so long to have another child, John is now the lone toddler out of my group of friends. I didn't want there to be such an age gap between my children and my friend's children, but hey life doesn't always go as planned. The age gap does have benefits; there are lots of big kids who look out for him and are there to push him on the swing etc, but he doesn't have instant playmates like the girls did.

Due to my age and the ages of my girls, I knew that life would be different for my third child than it was for the girls when I got pregnant again. Nonetheless, I looked forward to having the mornings to devote to art classes, music classes and gym classes with my little one so we would have the afternoon free to drive the girls to their activities. The preschool Julia went to even had a twos program. I had it all planned out. Even though I was an older mom, I wouldn't let my age get in the way of my little on being part of the two year old social scene. I had a lot of plans. I wasn't planning on Down syndrome, and all that it brought (and took.)

The fact that John has Ds makes it a bit harder to find a group of friends because, right now, he is not doing what typical two year olds are doing. He can't run around the park yet, or climb the slide, or talk.

I think I have not put him in planned group activities because I have been waiting for him to be "able". We haven't done a gym class because I wasn't sure he was able, wasn't sure he was ready. Well, the time has come (actually it probably came awhile ago) for John to be around typical kids more.

The library seems like the perfect place to start. It is a wonderful place, and John likes going there. We look at the fish in the fish tank. We sit at the little table and do puzzles. We look books, and more importantly we look at the other kids.

Our library, has a two and under room; no kids over two allowed, this includes siblings. Only little ones and their parents are allowed. This room is carpeted and has mats to climb on and hide in. There are mirrors and baskets of age appropriate books, just the right size for little hands. John loves playing in this area.

Yesterday, we were in there, and he was climbing on the pads and looking through the books. He liked being around the other little kids. Each doing his own thing, yet together. Parallel play in action. John would look at the other kids and laugh. Many of the kids in the room yesterday were walking. John didn't seem to sense any difference between him and them; then again, maybe he did. He did look at one little girl who was walking around him, and then he looked at me, signed "baby", and then started laughing.

I told him, "No, she's a little girl."

He signed/said "girl", looked at her again, shook his head, and signed "baby" again.

Well, she probably was younger than him.

Either way, she sat down next to him and listened to the book I was reading.

John was all smiles.

Yes, we will be visiting the library often this summer, and hopefully, doing a gym class too.

More Dis

2009-06-24T07:00:00.002-04:00

More Dis

His arm goes up and points in the general direction of "Dis" (This)

He knows what he wants (some of the times)

He is verbally communicating (awesome!)

Gets a little challenging though when we can't figure out what "dis" he is talking about.

We have a corner of our kitchen were all the carbs are stored (and John loves carbs). The cabinet with the cereal, the crackers, the cookies, the pretzels, the bread box, the toaster where we heat up John's waffles are in this corner. The bananas are over there. The snacks. Numerous times during the day, he will point to this corner of the kitchen.

"More Dis" (and the "dis" is always at a higher pitch)

Then we need to figure out what he wants. Thankfully, sometimes he can answer "cracker" or sign "banana" or say "wa" (waffle), but other times it is a guessing game. We ask "Do you want bread?". He shakes his head. "More Dis". Do you want a cracker? He shakes his head. "More Dis". I hold up a bag of nacho chips. Do you want this? He cracks up laughing and taps the bag. I guess he wanted chips; or maybe that was my best offer.

Its good.

It's reassuring.

It can be funny/frustrating trying to figure out what he wants.

"Dis", however, can also be an easy way out. Instead of signing/saying the name of an object, he says "dis". It's easier, and he knows it gets results. We need to be careful that he doesn't overly rely on "dis" to communicate.

A couple of nights ago, Bill was holding him, about to put him to bed. He was saying good night to everyone. Daddy said "Say good night to mommy." John looked at me, smiled, and reached out for me. Then he pointed and said....

"More Dis"

Um, I'm "mommy" kid :)

How Are You?

2009-06-23T08:07:00.002-04:00

I haven't been posting as much. I want to be uplifting. I want to positive. I want to be reassuring. I want to be the blog that when people read it, they will find some comfort. I want to believe that everything is going to be ok.

The problem is that, deep down, I don't quite believe it. John is almost 2 1/2 years old, and he is doing well. We love him to pieces. He brightens our day, every day. He is happy. My girls are happy. We have a good life. We still do the same things we have always done. In fact, we have had some great, new experiences because of the Ds. Life as we know it hasn't changed that much since the doctor uttered the words "Down syndrome."

Except that it has.

Don't get me wrong, in a lot of ways the changes have been wonderful. I'm not sure if that is because of the Down syndrome though or because of John. A lot of the smiles, laughter, and joy have nothing to do with Down syndrome and everything to do with the fact that we have another child. After all, John is first and foremost a child.

I wish I could just not think about the future, but I do. Every morning, I wake up and 8 times out of 10, Down syndrome is still one of the first things I think of as I am lying there on the border of slumber. Now that is partly because, I know I need to get up, and ready for a therapist that would not be coming if John didn't have Ds. Part of it is the reality that life didn't turn out the way that I had wanted it to, all because of one little chromosome. Maybe it is harder for me because of the baby we lost. I felt like I had the life that I had wanted, and then it was gone without warning. It is hard greeting the day with feelings of grief.

Thankfully, once I get up and start my day, focus on the moment, focus on the living, focus on my children, I am much better. My children are my antidepressant, and when they start to drive me crazy, I blog (and/or pour myself a glass of wine if it is after 5pm :)). Don't get me wrong, I appreciate all I have been blessed with...truly.

I share these feelings now, because I suspect many may feel the same way at times, but maybe you don't feel you can admit it. Well, you can here. I won't think you are betraying your child, or questioning God. I know that these feelings originate in the deep love you feel for your child.

We all want the world to be our child's oyster. When your child has Down syndrome, the world can look a whole lot scarier; yet it still needs to be our child's oyster. As parents, we want so much for our kids and when you see something, like Down syndrome possibly being a deterrent, it can be hard. Of course, when your child with Ds grabs hold of that oyster, wrestles it open and discovers the rarest of pearls, it can be amazing.

Wow, I am really rambling. This is why I haven't posted...too much going on in my mind.

So I'll end by asking, "How Are You?"

I'd really like to know.

Carrier for Celiac?

2009-06-22T14:46:00.003-04:00

John's biopsy results came back last week. Thankfully, the biopsy showed that there was no erosion to the esophagus. The medication that John is taking for his reflux appears to be working.

As far as the Celiac diagnosis, the jury still appears to be out. The gastroenterologist didn't think that John's small intestine looked as though he has full blown Celiac disease, but it didn't look exactly normal either (what is normal for someone with Ds though?)

The doctor now wants to do a blood test to see if John has this gene which would make him more likely to develop Celiac in the future. So we need to have blood drawn...again...to see if he is a carrier.

So we continue to cover the bases. It would have been nice if the doctor could have ordered this test on the day of the endoscopy though. They drew blood then, while John was under, to test for food allergies. He knew then what the small intestine looked like, wouldn't it have made sense to order the blood test then? Well of course it would have.

John will need to have drawn in a month or so to test his thyroid and iron. I think we will just wait until that blood draw to have this test done. The doctor's nurse said it didn't need to be done immediately, so we'll wait. Doesn't seem worth to put John through two blood draws in such a short time period. He did have a blood test for Celiac when he was one, and that came back negative.

I really need to write more things down during John's doctor's appointments. When we met with the doctor to discuss the endoscopy, the doctor brought up the blood draw, but on the day of the procedure, he had no recollection of it. I had to remind him of our conversation. I remembered he spoke of testing for food allergies, but I wonder if he also mentioned doing a blood test for Celiac too, and I just forgot. At the time, I just figured the doctor had things under control.

You'd think I'd know better after all we've been through. Lesson learned.

And the Endoscopy Shows...

2009-06-10T13:06:00.003-04:00

That the junction (hole) between at the top of the stomach and end of esophagus is too big; therefore contents of stomach can reflux back into the stomach. These results are not a big surprise. The good news is that the reflux medication seems to be working; as there did not appear to be any erosion to the lining of the esophagus.

When looking at the lining of the small intestine, the doctor said that it did not look like John has celiac, but we won't know for sure until biopsy results come back next week. The doctor also did a biopsy of the esophageal tissue to make sure it is not damaged. So we wait, cautiously optimistic that we will continue on the current course of treatment, and that another surgery is not in the immediate future.

John did great for the procedure. It was early enough in the morning that not being able to eat or drink anything didn't seem to bother him. He seemed to be amused that we had such a busy start to the day. We read books while we waited to go in for the procedure. He gave the doctor a high five, smiled for the endoscopy camera, and while he did cry for a few seconds when the put on the mask to give him the anesthesia, overall, he was in great spirits. Thankfully, he came out of the anesthesia without issue as well.

In recovery, it seemed that every nurse on duty came in to check on him. All commented on how well he was doing or how cute he was. Bill and I couldn't help but wonder if they were curious to see how the 2 year old with Down syndrome was behaving. Maybe all were a bit curious. I couldn't help, but feel like they were expecting him to be a "special" case.

One nurse who came to check on John told us she "had a brother like him." We waited to see what she would share. She was quiet at first, and then Bill asked her what her brother was doing. She told us that he was around 50 and living in a group home. She said he had been living at home with his parents, but then started getting sad. He would cry, and they wouldn't know why. They thought he was unhappy living at home so they moved him into a group home where his sister said he was happier. She said that she loved him and he makes the family laugh. She asked us about John's speech as her brother's speech is quite slurred and people outside of their family often have a hard time understanding him. She also pointed out how much more is being done now for children with Down syndrome than was done when her brother was a child.

I must admit this meeting did not make me feel all too optimistic. A 50 year old man living with his parents most of his life, then crying because he was unhappy, and now most probably spending the remainder of his life in a group home. That is not what I want for John, but I realize that so much of it is out of my control. I hate, hate, hate that. I get a pit in my stomach

when I think that my sweet, affectionate little boy might grow into a man unable to express to those who love him why he is sad. A part of me is scared to have John grow up. I want so much for him, but scared that the Down syndrome will get in the way.

Of course, Bill and I both appreciated that things were very different for this nurse's brother when he was a child. There is a very good chance he never went to school or received any type of intervention. He was born into a society where people like him were locked away. I know that things are different now. The doors of institutions have been opened, but the minds of many people are still closed.

I dare say, I think my little guy might have opened some minds today. I hope so.

Anyway, thank you for your thoughts and prayers. Today gave us no surprises; hopefully, neither will the biopsy results. Stayed tuned...

Not Motivated

2009-06-09T08:31:00.004-04:00

Hello my blog. I know I have been neglecting you. It is not that I have not had things to write about, feelings to share, a lot has happened these past few weeks, but I don't know, I guess I just don't feel like sharing. Either that or I have been too busy to focus. There has been so much going on. Bill's mom moving, all of the kids' activities, lots of social plans.

Tomorrow, John has an endoscopy to see if his reflux is causing any damage. I'm not too nervous about it; it is a quick and relatively straight forward procedure. Of course, who knows what they will find. I am hoping nothing, but hey, you never know.

Aside from the heart defect, we have been overall blessed that John has been very healthy. When he was younger, I kept waiting for the doctors to find more problems. There was the heart defect (which was fixed), then the thyroid and reflux. We thought he would need tubes in his ears, but once the reflux was addressed the fluid in the ears seemed to go away. All issues that are not uncommon in individuals with Down syndrome. It was a lot at once, but for the past year, things on the medical front have been overall pretty stable. I do hope that tomorrow doesn't change that.

I guess, with everything, we'll just have to wait to see what tomorrow will bring.

To Eat or Not to Eat?

2009-05-19T09:04:00.002-04:00

It really shouldn't be a question....

John is in a phase...I hope.

His diet lately has consisted of carbohydrates--waffles, bagels, crackers, bread

Yogurt and milk

Pizza

and fruit

Occasionally, I can get a piece of a fried chicken cutlet in him. We trick him into putting something else in his mouth--he takes it out, and usually throws it on the floor.

I spend a lot of time sweeping.

We put food on the tray of his high chair, and if he doesn't like it, he throws it on the floor.

So what do you think?

Typical picky toddler behavior?

Or a sensory issue due to Ds?

That really is the question.

Not sure of the answer, and it is frustrating. Very frustrating.

Wordless Wednesday-Oh Wait It's Thursday--Oh Well

2009-05-14T12:26:00.000-04:00

Calling All Cooks

2009-05-06T09:44:00.003-04:00

I love to cook. Love to have people over and cook a nice meal. My house is cluttered with cookbooks and cooking magazines. I have a house full of recipes, but still I can't decide what to serve for Julia's First Communion Party this Saturday.

She has a lot of food allergies so we asked her what she wanted to eat on her big day. For years, we have had parties and served a variety of dishes, most of which she has been allergic to. So what does my lovely want for dinner on her First Communion Day? Grilled hamburgers and hot dogs.

Well, that does make it easy--especially when feeding the dozen kids that will be here, but what about the 15+ adults? We were thinking of grilling some marinated chicken to go with the burgers and dogs, but right now the forecast is for rain.

I also won't have the luxury of being home before our guests arrive so I need things that can be made ahead. I am going to make a nice salad of mixed greens with an herb vinaigrette. My mom's bringing potato salad. Some baked beans. Maybe some pizzettes (mini pizzas) as an appetizer, some fresh fruit, shrimp cocktail. Maybe some grilled shrimp ons skewers. Chips and Dip--a cheap, sure fire crowd pleaser. We'll have cake for dessert and Julia want's to make ice cream sundaes (she'll be having soy ice cream due to her milk allergy.)

I don't know, I want something else, something besides the old standbys, something new and exciting for the adults, but easy to serve a crowd.

Any suggestions?

Simple Gifts

2009-05-04T21:25:00.002-04:00

When John was born, my two very best friends send a basket of gifts to the house to welcome him. It arrived the morning we told the girls he had Down syndrome (two days after we had been home-once knew he wouldn't need to be readmitted because of jaundice), Perfect timing. Gifts to welcome our gift.

The gift basket included the CD Guess How Much I Love You.

John falls asleep to this CD every night. When he was still an infant, I would rock him and listen to the songs. So many touched me; this one in particular.

Simple Gifts

'Tis the gift to be simple, 'tis the gift to be free,

'Tis the gift to come down where we ought to be,

And when we find ourselves in the place just right,

'Twill be in the valley of love and delight.

When true simplicity is gain'd,

To bow and to bend we shan't be asham'd,

To turn, turn will be our delight,

Till by turning, turning we come out right.

I had never heard this song before I heard it on John's CD, so I was shocked when I heard the instrumental version played by Yo-Yo Ma, Itzhak Perlman, Gabriella Montero, and Anthony McGill at President Obama's inauguration.

John is a gift to us. He has taught us to appreciate the simple gifts that life has to offer. Right now, that is a very precious perspective to have. As our economy fails, people lose jobs, salary increases dwindle, it is good to be reminded of all that we have. It is a gift to see the beauty around us, beauty that has always been there, but is often overlooked. The laugh of a child. A kiss. Early spring flowers. That first truly warm Spring day. Falling asleep in the arms of someone you love. Ice Cream. Family. Friends. Playing on the swings. Tents made out of blankets. Music. The feel of the grass between your toes. Things that have nothing to do with intelligence, ability or money. Things immune to the rise and fall of the Dow. Gifts so many of us have, but so often overlook. Thanks to John, I don't.

Waiting for Answers

2009-05-04T15:29:00.005-04:00

Ever since my last miscarriage, I wanted answers. What happened? Why did we lose the baby at 20 weeks without rhyme or reason? I know, the doctor blamed the amnio, but there was no fever, no bleeding, no leaking of amniotic fluid, no pain. I also felt the baby moving weeks after the amnio. I was convinced that it was something else, but my OB still blamed the amnio, especially since the amnio results showed nothing else seemed to be wrong. Of course, I do realize that miscarriages happen all the time for no apparent reason.

Years have passed, there was another pregnancy, a new life. We have John who we love dearly.

Since we first learned John had Ds, I have wished many things. At times, I will admit, I have wished we never tried to have another child (just to spare myself the pain of the miscarriage and the anxiety that comes with John's diagnosis), but then I think of how boring life would be without him :)

Of course, I have wished I had never had that damn amnio. Then, oddly, I wished I had had an amnio during my pregnancy with John because I knew something was not right, even though the doctors told me otherwise. For me, I think it would have been easier to have known prenatally. One thing I have never wished though was that I could have aborted my pregnancy with John.

As time as passed, I am back to my original wish. I wish that I could be absolved. Absolved from the blame. I still blame myself for the loss of the baby before John. If the doctors were right, if I didn't have the amnio, he might have lived.

I have prayed for there to be another explanation, something definitive. I prayed that the amnio was NOT the reason, and I prayed that somehow, over three years later, that God would give me the answers I needed. Crazy right?

Well, a few days ago, my dad told me he went to the doctor to see if he could go off the blood thinners he was taking. He is still recovering from his broken pelvis and wrist, his gall bladder surgery, shoulder surgery and blood clots in his leg (falling off a ladder can do real damage to a guy in his sixties.) Upon further testing, his doctor informed him that he has a condition that causes his blood to be more likely to clot when it shouldn't. Evidently, this condition is genetic so he could have passed it on to me and my brother. It has to do with anti-cardiolipin antibodies.

Have you heard of this? Well, I had. I knew exactly what he was talking about. I had come across anti-cardiolipin antibodies when looking for answers for why a seemingly healthy baby would die in utero halfway through a healthy pregnancy. Seems women who have this condition are at a higher incidence of having unexplained pregnancy loss in the second and third trimester. Blood clots form in the placenta, blocking the flow of blood which would cause the baby to stop growing and ultimately die. That is exactly what seemed to happen during my pregnancy. The loss was discovered via ultrasound at 20 weeks, I had felt the baby moving periodically days before, but the baby's femur only measured 16 weeks.

Before I got pregnant again, I wanted to make sure that I did not have an undetected autoimmune disorder that would cause fetal loss. If I had such a disorder, I was not going to get pregnant again. I knew the doctors were humoring me by ordering the tests. They figured, I had already had two healthy pregnancies so if something was wrong with me, it would already have been an issue already.

The doctor told me that the blood work was fine.

What if he was wrong? What if the cardiolipin test was never done, as the thyroid test he also ordered was accidentally not done? If I have this condition, it would give me a plausible explanation for why we lost the baby the way we did. I would have what I wanted...answers.

If I do have this condition though, there is a good chance I may have passed it on to my girls, which I do not want. I don't want anything to stand in the way of their having easy, healthy and worry free pregnancies (should they decide to have kids.) I don't want them to ever go through what I have been through.

I called the doctor an hour ago. I spoke to the nurse. She was going to check my chart, and call me back.

I'm still waiting for the call. I'm expecting her to tell me that everything is fine, but what if it isn't. Doctors have been wrong before.

I wonder, is God going to answer my question. It's what I have wanted, but not like this, not with a blood disorder that I might pass on to my kids.

Ah, life with all of its twists and turns.

Edit: Nurse called back, at time of test, levels were normal. Don't know if pregnancy would cause them to change, but for now, I am going to assume that I don't have to worry about my girls having to deal with this--or John for that matter. I got the answer I wanted, and maybe a reminder to stop looking back and to just be thankful for the blessings of today.