When I was pregnant with Ellie and looking for a pediatrician, I met Dr. Jan. She was recommended by a co-worker who has a son with Trisomy 21 and a repaired AV Canal defect (like Ellie). Dr. Jan has four children, one of whom also has Down syndrome.
Dr. Jan met with Paul and me for a normal pediatrician interview except that she sat with us for nearly an hour, and said some things that really stuck with me and made me feel so so very much better.
For example, she told me how well-meaning people often tell her about people they meet with Down syndrome, like perhaps the man sweeping the floor at McDonald's, with the idea that they're encouraging her to believe that her daughter too might be a productively employed member of society when she grows up. Dr. Jan let us know that it's OK to feel angry about these comments and about the whole situation, because perhaps I didn't dream of my daughter sweeping floors at McDonald's. She said, "Maybe I dreamed that my daughter might like to be a doctor like me." Yes.
She also said something that I loved but couldn't yet identify with. She said that when her daughter was 2 weeks old, she realized that if she had the ability to "fix" her, to "cure" her, she wouldn't do it. The Down syndrome is just a part of who she is. I waited anxiously to feel that way about Ellie, but I never have.
I love Ellie. I love Ellie as much as any parent loves her child, which is to say that I love her more than I would have thought possible. Isn't that what every new parent says? Well, it's true.
But if there were a safe cure . . .
Wouldn't it be nice for Ellie, to live in a world where her features are no longer associated with a negative cognitive association? Wouldn't it be nice for Ellie not to have to fight so hard to fit in at school and life as she gets older? Wouldn't it be nice . . .
Wouldn't it be nice for me? It would, it would.
Just after Ellie was born, someone sent me a newspaper article about some promising research for a cure for the cognitive effects associated with Trisomy 21. It was expected in 9-10 years, comfortably within Ellie's childhood. I still have the article on my refrigerator.
And in the latest Scientific American, there's more news. I had to wait a couple of days to be ready to read past the headline. When I finally read the article, I was so excited and anxious that I felt like throwing up, or at least jumping up and down.
I won't expose Ellie to a clinical trial. Or a significant risk of seizures or any other dangerous side effects. I love her too much - just as she is. And she is doing so very well.
But if, if, if - if they find a drug that counteracts the cognitive effects of Trisomy 21, Down syndrome, well . . .
I believe that Ellie will still be Ellie, just as sweet and precious, just as perfect to me, even with a drug that makes it easier for her to learn and remember things.
Some day, God willing, she will be able to choose for herself. But until then, I believe that I would chose such a safe treatment for her, if it became available. She would still have disabilities; nothing will change that. But our lives would - perhaps - become a bit easier.
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11 comments:
(((Sarahlynn)))
I think your thoughts are normal. As parents, we want our children to be happy and be able to live their lives to the fullest extent of their abilities.
There is nothing wrong with you wanting to make things easier for Ellie. It simply makes you a loving mother.
heck, if there was a drug that would make me perform better, i would want it.
i don't know much about parenting, as i am not a parent, but the one of the things i do know is that parenting is hard. this is a hard decision, as many parenting decisions are... but the other thing i know about parenting is that parents always want what is best for their children. I am sure you will do what's best.
(BTW-i have been waiting for your post on this subject since i read about it two days ago)
What a perfectly normal hope to carry for your child!
My sister-in-law has Rubenstein-Taybi Syndrome. It's a genetic disorder that has characteristic features and cognitive function impairment. We'd give anything to have a drug that helps her think better. She knows her mind "doesn't work as good as" other peoples. Her words. It frustrates and even depresses her at times. She wants to do things but can't because RTS impairs her ability to make choices and decisions, to think on her feet, etc. She (and we) would jump on a drug that would help her think better. Especially if it helped her have more freedom and function!
I would do it for Noel. I have heard other parents say the things the doctor you spoke to said- that it's just part of who their kid is, and they would not change it... and I have not been able to identify with that, either. If it were safe, I would beg, borrow or steal the 'fix'.
In a heartbeat.
I really don't know what I would do.
I was having a conversation with a friend in which I realized I never think of Avery without the DS. I never imagine who he might be, or how he might be, if he didn't have it.
I couldn't tell if it was because I'd completely accepted that side of him; or if it was because it hurt to much to imagine it.
Similarly, I don't know how I feel about the new drug, or any posssible drug.
In the end, I don't think I have to know. The trials are so preliminary that by the time there is a real choice, I hope Avery can make it for himself.
This is such a double-edged sword for us. Our girls wouldn't be OUR girls if they weren't enhanced with their extra chromosome. And I'm so in love with them I can't imagine changing anything about them. But the thought of making things EASIER on them, that's a different story.
I've struggled with this question too. I know parents who say the same thing as your doctor. I've always wishe that Nicky didn't have DS. But, I've realized that wishing he didn't have DS wishes away the Nicky we know and love. And I certainly don't want to do that. But, if there is some treatment that could lessen the symptoms, or make him better able to function in this world, to live independently, then I'm all for it. A treatment doesn't wish away who he is at all.
Anne
Anne, that's how I feel too.
Jennifer and Imperfect Christian, I feel like, if Ellie had a treatment that improved some of the cognitive delays associated with trisomy 21, she'd still have Down syndrome. And she'd still be herself, just with fewer roadblocks and frustrations.
The thought of a future/sci fi treatment that would actually remove the extra chromosome, well, that scares me. Maybe I could have done that when I was pregnant or even when she was a newborn. But probably not now.
Steph, it's nice to hear another parent who feels that way. It seems to be an unusual opinion, but I like that we're a group that has some diversity of opinions.
Thanks, CCW. I think this moral dilemma is similar to what you're been dealing with with your daughter's ADD. Certainly there are some of the same moral issues. She's the same girl, but her brain works more efficiently, right?
Kathryn, me too!
Victoria, I think that someday Ellie will feel like your sister-in-law feels. I think she's definitely smart enought to understand the differences.
SeasonalKat, thank you! I have definitely been thinking about deaf culture as I contemplate these issues. And I really get the "easy for them" part too.
I thought of you when I read this article a few days ago. Intersting too because my husband and I had been discussing the aborition issue with Downs and about how some adults with high functioning autism/Asperger's oppose genetic research into autism because they fear that what has happened with the Downs genetic test will happen with autism as we unlock the genetic markers for the disorder.
I think there are many prongs of hope with this development - not just for Ellie at some point - but being able to remediate some of the bad side effects of Downs might make more parents willing to take that pregnancy to term.
Every parent of a disabled child has to confront that moment where they realize, would they cure the disorder in their child now if they could and would it fundamentally change the child they have come to love and value so much despite the challenges? My older son with autism had so many aggressive issues and mood swings that after years of dealing with it, we finally decided on a course of zoloft. It wasn't an easy decision... we continued to second guess it until a few days into it, my son looked me in the eye and said "Something's different, my brain isn't so angry any more."
Didn't fix the issue, but it has made his life easier and that is all that matters to me.
I really hope this drug is able to make it easier for people with Downs.
Deb, what a wonderful affirmation from your son that you made the right decision!
"being able to remediate some of the bad side effects of Downs might make more parents willing to take that pregnancy to term"
Yes! Also, I think it would lessen the stigma associated with the diagnosis. The features commonly associated with Down syndrome could, over the course of one short generation, stop being short-hand for a negative portrayal of all sorts of developmental delays.
Sarahlynn, you are right. My concern with medicating Kid L was whether or not she would be the same person and how I would feel if I liked the medicated version better.
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