Saturday, September 13, 2008

13. Two months

We've reached the two-month mark! Ozzie is beginning to fill out a bit, but he's still so tiny he looks like a three-week-old. The past several weeks have been uneventful. We have not had any additional doctor visits or any therapy sessions - having Ozzie has been just like having any other baby.

We have gradually started reading some of the books we were given in the hospital. I haven't sat down and read a complete book yet, but I have read chapters that looked interesting to me. I can read that stuff now without getting upset. About 90 percent of the pain is gone. The sadness I still have inside is focused on Ozzie's future, which, at this point, is unknown. I'm mostly saddened when I think of the questions I will have to answer some day. Questions for which I have no answers...yet. That's the hardest part about having a child with Down Syndrome.

With a typical child, you wonder about his future through a narrow lens:
Will he be a good kid or a bad kid? (probably a good kid)
Will he be a doctor or a teacher or a businessman? (probably not a doctor, but that's okay)
Will he meet a wonderful girl and get married and give me grandchildren? (hopefully)

Down Syndrome has pulled the entire frame of reference out from under me.
Will he be able to speak normally? (let's keep our fingers crossed - many parents use sign language)
Will he be shunned by other children in the neighborhood? (please, please no)
Will I be wiping his butt when he is ten years old? (I hope not, but I guess it won't be the end of the world)
Will he ever live on his own? Have a girlfriend? Get married? Hold a job?

How does a child with Down Syndrome view the world? I have never seen a person with Down Syndrome in a movie, at least not that I can remember. With few exceptions, every story you have ever read and every TV show you have ever watched was populated exclusively with "regular" people. And why wouldn't they be? I've never even given it a second thought. But now I find myself trying to imagine how Ozzie will view his place in a world that in some respects has been built for everyone but him. It's the kind of thing that blows your mind.

Some of the books I have read say that after awhile, parents look at their child and don't see the Down Syndrome any more, they just see the person. That has not happened for me yet. I can't even imagine looking at Ozzie and not seeing it. But what has happened is that I see the Down Syndrome and it's okay. It's not soul-crushing, it doesn't make me angry. It really is okay.


lynch5 said...

You are doing great! Enjoy little Ozzie (love the name) and give him a kiss from another family blessed with an extra chromosome!

The MamaCoaster said...
This comment has been removed by the author.
smoose003 said...

There was a show called "Life Goes On" that starred an actor named Chris Burk that has Down Syndrome.

bahhne said...

I loved that show "Corky" was very high-functioning on the show, and obviously in his real life since he was an actor.
I'm so glad you're posting again Dan. I am really excited about getting to meet little Ozzie, see you guys soon.

ds.mama said...

If he is cute enough and can sign fast enough, I might be willing to arrange a marriage, LOL!

Your thoughts are so right on, so raw and honest.

Anonymous said...

It does happen. There are very lucid and very long moments in time -- days? weeks? a month? -- when the idea of having your child with Down syndrome falls away -- and you do see your son only.

I can't speak for everyone, but the idea of Gabe having Ds never really goes away for me. (I should admit that I'm the more pessimistic worrywart in our family though...) But, you know, as I ease through one transition to another (IE. heart surgery to our first playgroup to preschool and now JK in the fall) I believe more and more that my son will have a GOOD life.

Like any kid...

Tricia said...

You know, this brings back so many memories from our early months with Georgia. Just because I think you'll get a kick out of it, I remember reading right around the time when Georgia was two months that most kids with DS were preppy. THis sturck me as both hilarious and as cause for making sure G never wore an Izod shirt! :) Of course, to tell you the truth, I know that if Georgia DOES grow up to be a prepster I have no control over it--she can be quite persuasive--but I will not attribute it to her DS. I will instead know that she is rebelling against her parents!