On Down syndrome

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.