Sunday, August 3, 2008

Things I think about

Finnian's Down syndrome is never far from my thoughts, it seems . . . no matter how much I want to just enjoy him being just a baby for now.

This whole "mental retardation" thing is one of the most upsetting aspects. First of all, what a terribly ugly, ugly term. I honestly wish there were a way to have it outlawed. "Intellectually impaired" sounds a little less offensive. It's funny, because I've always been one to snicker a bit at how far people will go to be "PC," but now I get it. How mere words can break people's hearts.

Anyhow, this is one of the aspects I'm having the toughest time coming to terms with. And I find myself trying to talk our way out of it. It goes something like this: Michael and I have managed to produce some very bright kids. There must be a genetic influence at work here, right? So maybe that will give Finnian an edge. Also, lots of studies have shown breastmilk to be "brain food" - babies who are breastfed long term have been shown to have higher IQs. So maybe that'll give him an edge as well. Maybe he'll bypass the whole "mentally retarded" thing and be at least average.

Crazy thinking? Who knows. But it makes me feel better to at least entertain the possibilities.

***

Sometimes I think about the fact that I never had any genetic screenings done with this pregnancy, despite being 40 years old. I guess there was a part of me that just assumed that because I had produced 5 healthy, normal children already, I was "safe. " I had a proven track record. I didn't feel that I was really at any higher risk for having a baby with problems than I was with the last pregnancy, or the one before that. So I chose to forego the screenings: NT ultrasound, triple screen, AFP, CVS, amnio - nope, wasn't interested in any of them.

And the truth is, I'm glad that I didn't have the screenings done. What bothers me is thinking about what if. What if I had had the screenings done? What if I had known ahead of time that Finn had Down syndrome? It turns my stomach in knots just thinking about it. Then I would have been faced with a choice. Continue the pregnancy, or terminate? I have friends in my age group who have had amnio done and who have said "I know I just couldn't deal with a special needs child . . ." the implication being that they might choose to terminate if they found out they were carrying a baby with something like DS. I make no judgments here - none at all. It's not something anyone can choose for anyone else. I know for me, I never could or would have considered terminating - and I know Michael wouldn't either - but I do know that if I had found out while I was still pregnant that Finn had DS, it would have changed the whole course of my pregnancy. And that's what bothers me, thinking about how easily it could have been a very sad, frightening experience, carrying him, instead of the happiness and excitement I felt in my blissful ignorance.

***

I think at least some people also wonder about the connection between what happened with Finn - not only the DS, but the duodenal atresia and the surgery required to repair that - and my choice to have a home birth. So I just want to clear that up right now. I'm glad I had him at home. There is not a single cell in my body that regrets that at all. Where he was born made absolutely no difference in the outcome. His DS was set into motion the moment he was conceived and that egg was fertilized. Nothing - nothing - that happened afterwards could have changed that. As for the intestinal blockage and the surgery he required, that also was not affected by his place of birth. The only difference, had he been born in a hospital, would have been that the DS probably would have been detected immediately and just based on that, he likely would have been whisked away from me and Michael right away and we never would have had that valuable time we were able to have with him during his first day of life at home, before we took him to the ER.

***

Why do people with DS have shorter life spans than "normal" people? This is something that haunts my sleep and my waking thoughts. I almost don't want to know the answer. I assume - without having done any research - that it's because of the health issues, most likely the common heart defects, that people with DS suffer from. But what if they're generally healthy? What if they don't have the heart defect or other serious health ailments? But then I think about what will happen if Finn does live to be 70 or 80 . . . who will take care of him? Michael and I will surely be long gone by then.

***

I wish all of my friends would take the time to read this blog and try to understand what is happening in our family.

5 comments:

T-rex said...

I, for one, happen to think the homebirth was phenomenal and beautiful and the BEST way to start his life out. You said yourself, rightly so, that the outcome was set long before his birth with both his DS and Duodenal atresia... I'd like to think his little body had nothing but benefit from the gentle, lovely way he entered the world. And thank GOD you got time with him before discovering about the intestinal blockage... I couldn't imagine not having time to bond with my baby before having him whisked away, it horrifies me to even contemplate. I truly don't think anything but good came from him being able to be with YOU, his mother, early in his life over emergent medical care. He is supposed to be with his family, and thank GOODNESS his first experiences out of the womb were good ones, you know?

I can;t express how thrilled I am he is home again and you all are moving forward, slowly but surely. The stressful time warp that the hospital can create is just no good for anyone :(

Karly said...

I am at the point where the medical diagnosis of "mental retardation" isn't something that phases me as much...but people tossing around the word "retarded" bothers me, as I know it's something that will be used to hurt my child in the future. I view it much in the way people view the "n" word...it's ugly and unnecessary and refers to genetic difference...

It's wonderful that you gave Finn such a peaceful entrance into the word, born into the loving arms of his family. He's very lucky to be so loved.

Lindarue said...

Hey Lisa - I do read your blog - regularly! I loved the video of him rolling over - unreal! He's such a sweet baby. My thoughts are with you often - both the happy times and the difficult times you are experiencing in tandem right now. Love you!

Jodi said...

I've been thinking a lot about prenatal tests since Finn was born. I think in some ways you're lucky not to have known - for the reasons you mentioned about having a pregnancy with blissful ignorance, but also because the rest of us got to know Finn as Finn before the Ds test. If you'd had the prenatal tests done, I think it would be easier to think of him as a Down syndrome baby named Finn. Instead, I always think of him as Finn first - with those gorgeous blue eyes and blond hair - and the Ds as something he has. I always thought it would be better to have the tests, but now I'm really not so sure.

As for the fear of the unknown, I think that's one of the scariest parts of Ds. There's such a broad spectrum and you just don't know what's ahead. Finn may have very few problems with learning and be fairly independent. When I started to look at what some people with Ds have accomplished- Chris Burke starred on "Life Goes On", Jason Kingsley (the son of the woman who wrote "Welcome to Holland") wrote a book before he finished high school, and Sujeet Desai is married and tours as a musician - I started to feel like a slacker!

When you start to think of all the things that "could" happen in any child's life - accidents, illness, addictions, etc - you could be paralyzed with fear as a parent. But, most of us ignore those possibilities even though they may very well be in our future. The difference for you is that you're faced with this label from the very start. Finn has Ds. And you have to read those awful predictions without knowing which he'll have or how it will affect him or your family. I wish you could back that blissful ignorance.

Growing up in your family - surrounded by his brothers and sisters who love him, with you and Michael as parents and advocates, with early intervention and everything else you can think of to help him - Finn has huge advantages that will enrich his life.

There have been such fundamental changes in the last few decades in how Down syndrome is viewed and treated. Things like life expectancy may be skewed because the data includes older people who were institutionalized or raised with little medical treatment and no early intervention. My grandmother's life expectancy was 49 when she was born in 1906 - she's celebrating her 102nd birthday in a couple of weeks.

Nicole O'Dell said...

You make such incredible points and I am so glad that I am following this journey that you're on. I am learning so much from your honesty and I truly think that many people will be better at dealing with situations like this from having learned from you.

Thanks for not editing the truth.