Tuesday, September 29, 2009

Excuses, Excuses

Ten years ago a close friend of mine came to me when she was 18 weeks pregnant and explained that her child had Down syndrome and that she and her husband had decided to abort it. She told me that the doctor said it would be a financial burden on the family and that it was unfair to their other three children.

I felt really bad for them and never gave much thought to their reasoning.

She delivered her dead child, held him and had photos taken, named him something angelic, and then had him cremated and put in a fancy urn. He took his place on the mantle above the hearth in their formal livingroom. Occasionally it would come up that they’d “lost” their son, though we all knew where he was. They went on to have two more typical boys and are just now wrapping up an ugly divorce.

I know all the excuses for why you might throw away your baby with Down syndrome. I have heard them all because I told myself each one of them after I got my prenatal dx of Down syndrome. This time it was my life, my child, my duty to give thought to the reasons why.

1. A life of suffering... I wouldn’t do that to my child. Yeah, me neither. Guess what? It is not a life of suffering. People with Down syndrome do not inherently suffer. I thought about the people I had known in my life that had Down syndrome. I couldn’t pinpoint any real suffering. They love, laugh, learn, and spend their days being generally peaceful.

2. All those medical problems... what kind of life is that? I read the long all-inclusive list of medical problems that children with Ds might have. I researched and found that while it is true that certain medical conditions are more common in people with Down syndrome than in the general population, that doesn’t mean that most people with Ds have ongoing medical problems. Some children with Ds will face congenital medical challenges, the biggie being cardiac defects.

My baby had a major cardiac defect and I was scared. But a fetal cardiologist explained that my child (like most children with Ds who have cardiac issues) had a very common defect that could be completely repaired in early infancy. Is heart surgery scary? Of course it is for the parents and loved ones but it is also just a 5 to 7 day hospital stay with over a 90% complete success rate.

Bottom line? Almost all infants with Ds who are born with congenital defects get a fix within the first year of life and from then on face only the basic bugs and boo boos of childhood like all other children.

3. It isn’t fair to our other children. What isn’t fair? The “extra attention” my little Henry might get from an early intervention specialist? That my Johnny might have to hear a nasty neighborhood kid call his little brother a disparaging name? Seriously? This is a reason to end my baby’s life?

I have another good friend who has a little brother (grown up now) with Down syndrome. In the 14 years I have known her she has never even hinted that she was unhappy about him or that she felt that it was unfair to her in anyway. In fact, she always spoke of him and treated him with love. She once told me that she didn’t even know growing up that he was considered moderate to severely mentally delayed until she read some of his paperwork years later.

The reality is that she experienced unconditional sibling love and she saw her brother work hard and consistently to achieve milestones.

Is it possible that my Johnny may experience some rough times concerning his sibling with Ds? Yes, of course but I found that there are lots of sibling support programs that can help him grow through those times.

4. Who will take care of this person when I die? I agonized over this one. I didn’t know that because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. I didn’t know that I could set up a special needs trust (funded by life insurance) that could provide whatever my son needed.

Eventually I decided that I just had to trust that my child would grow up to have friends, family, neighbors, and various paid staff that would care enough about him to provide any support he might end up needing.

5. People with Down syndrome have short (50-60) year life spans... how can I knowingly give birth to a child I will most likely outlive? Ok, this one came and then went rather quickly as soon as I considered the alternative, “Should I end my baby’s life so that it doesn’t have a short life..?”

6. This child will be a financial hardship on our family. I remembered what my friend had been told by her doctor. We are not rich people. I got nervous. So I looked into what exactly was going to cost so much more for this child. Housing, clothing, diapers, food... none of this would cost more. Health care? A deductible is a deductible and a co-pay is a co-pay, Down syndrome wasn’t going to change those numbers much.

Are there people whose insurance companies will deny coverage for a pre-existing condition who cannot get their child covered under Federal Medicaid? Maybe, but we are not them. Would I have aborted if we were one of them? Would I let one of my other children die if they were stricken with a life-threatening illness or accident for fear of medical bills?

7. Is it fair to have a child that will likely use more resources than it can produce? I come from a long line of working, tax-paying people. I have family members who have fought in wars to protect your freedom and lifestyle and that of our children. I (and my many childless friends) contribute to my and your typical children’s educations in the form of school taxes. My husband and I, and our family, and our friends have more than paid my son’s debt to society.

But even if that were not the case, should poor, non-land-owning people abort their children because they are a drain on our society’s resources? If you answered yes to this question, you have more to whine about than a few babies born with Down syndrome.

8. My child won’t have a normal life. What the heck is a “normal” life? I figured I hadn’t lived a normal life and I am no worse for wear... Now I know that if normal means to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then my son is experiencing a normal life.

For a while I wanted one or more of these excuses to feel justifiable and good but none would give me the peace I needed. So my husband and I decided that Henry would live. I do not judge my friend who came to a different conclusion. But I do feel sad for her. She once confided to me that it hurts her to see my beautiful son. She has an urn and I have a lovely child full of life and laughter. And this child of mine, he blows away every excuse in the book.

Why do I care that you should know this? Because someday you might be hearing these excuses in an up close and personal way.

Written by November who was motivated by Tara (and I even plagarized her a bit)

11 comments:

  1. Wonderful post, November. I feel sad for your friend, too. Too many people seem afraid to take the risk when a child is destined to be less than perfect in their eyes. In reality, I think they will love, live, and feel more deeply than ever before. I know I do and I'm not alone in this.

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  2. thanks for the awesome post! My daughter Paige was born with down syndrome and a heart defect, I never ever thought of her as a burden. I knew she had DS during my pregnancy and never once thought of termination.

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  3. Thanks for the honest and post to arm those who so often classify X or Y or Q as an automatic abortion, even if it is late, late in the pregnancy and are encouraged to do so by doctors.

    When my brother found out at age 1-2 that my nephew was not neurolgically in the majority there was a great wailing, a great deal of assumptions about his future, and about the 'loss' and 'burden' he and his wife would suffer but even more the assumptions that my nephew would suffer because he would never be 'normal' (presented as if this was the last wish of the day and first waking thought of my nephew).

    I wrote a long letter trying to explain that my nephew, let's call him Bill was Bill, and saw the world as Bill's world, and maybe how Bill saw the world was different than my brother but then, he didn't know how my brother saw the world, he had never experienced that and certainly didn't miss it. How could Bill miss something he never had, how could Bill feel bad unless others told him that Bill's view of the world WAS bad, or that he should want something else. I said that Bill would find all the experiences within Bill's world, if only my brother would join Bill in seeing the world, instead of lamenting the 'failure' he was, because Bill was not exactly like him.

    That did not go down well. My brother spent $10,000 in specialized training from age 5-6 onwards over several years so that 'Bill' would smile 'normal' in the picture taken to be sent out at Xmas. My brother wanted a normal family and he was willing to pay to get the appearance of one.

    What could I, what can I say that will convince my brother that 'Bill' is always 'Bill' and no amount of psychological force, corporal punishment or isolation therapy is going to 'make' him into a clone of his father (does the world need that?)? But that of all the things that matter, Bill not only had them, but could and would share them still.

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  4. To Elizabeth: what a wonderful and thoughtful comment. Thanks for taking the time to write it.

    And to November: I love this post.

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  5. I love this. 'she has an urn....'
    ouch.
    that is almost too painful to read.
    the paragraph numbered 8 is powerful!

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  6. Gosh I wish I could post this on those horrible termination for medical reasons boards that are out there. Sorry but DS isn't a medical reason to abort! It's compatible with life and our children are beautiful and bless all who come in contact with them. You put things so elequently and they are all 100% true.

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  7. This was a powerful post. Thank you so much November. She has an umm is pretty painful to read.

    Happy National Down Syndrome Awareness Month.

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  8. What a owerful post, indeed. I will put a link to this post on my german blog due to Down Syndrome Awareness Month.

    Take care, you all.
    Claudia

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  9. what a wonderful post!!! we didn't know Parker had Ds until after he was born. He also needs heart surgery, but it is how God created him. He is a true gift!!!

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