Monday, March 4, 2013

If You Could Take Down Syndrome Away From Your Child's Life, Would You?

A couple of weeks ago I wrote about watching a couple on The Today Show say, "We're safe, the baby does not have Down syndrome" when they received their prenatal results. This particular segment and blog posting sparked much more conversation than I ever imagined it would. 

One of the topics that arose as a result of that post was the following question, "If you could take Down syndrome away from your child's life, would you?"  Does your child have Down syndrome? A different disability? Would you take it away if you could?

All photos by Nat.

It is a complicated and loaded question that is not easily answered. Mostly because Down syndrome is a different type of diagnosis. It is not a disease. Our children do not suffer from Down syndrome (as is often reported in news articles). Instead it is a condition. A natural, genetic variation that occurs in all races, all socioeconomic categories and in both females and  males. 

If you were to ask if you could take away your child's cancer, I imagine close to 100% of parents would say yes without hesitation. But Down syndrome is not cancer. Leukemia occurs anywhere from 10 to 20 times more often in children with Down syndrome, but Down syndrome, in and of itself, is not cancer. 

I struggle with this question for multiple reasons. As someone who is more pragmatic than philosophical, I have a hard time even going there or even thinking about a world in which I could take Down syndrome away from Joey's life. While I can't imagine this, there are such options in our world. The one option that has been reported to occur to 50-90% of babies who are diagnosed prenatally with Down syndrome is abortion. In more simple terms, a prenatal diagnosis of Down syndrome is a death sentence to at least 50% of those babies who, like Joey, happen to have an extra chromosome.

My response to whether or not I would take Down syndrome away from Joey's life is....never. I would never do it. I couldn't. Down syndrome is part of who Joey is. Having Down syndrome is how God made Joey. Selfishly-- very selfishly-- Joey having Down syndrome has enriched my life in ways I could have not ever imagined. Joey's life- exactly as it is- has given me a purpose in life. His extra chromosome has helped me become a better, more educated, more aware, more compassionate, more understanding person. I am not a perfect person by any means and am constantly struggling to improve and better myself, but Joey's life has made me feel like my life has more meaning and more purpose than it has ever had before.

I would like to take Joey's heart and eye issues away if given the opportunity. But again- if I did that, would he still be the amazing little boy we know and love? Maybe not. I would like for him to struggle less to learn to talk and walk, but again, that might change his incredible little personality, so ultimately, my answer is, "No." I would not take Down syndrome away from Joey's life. 

If I could protect him from heartache, ridicule, pain and struggle I think I would. I think I would do the same for Tommy if given the chance, but then again, those are the very things that make our lives more meaningful and help build our character and our ability to persevere.

I now understand and know that ultimately, I have an incredible fear of playing God. It is the very reason that when we were offered to terminate Joey's life during our pregnancy right up until week 24 (the legal limit for an abortion in Ohio) I just could not do it. I feared my ability to raise a child with unknown challenges, but I personally fear taking or changing a life in a way that I wasn't meant to far more than anything. Both of our children are 100 times more incredible than I could have ever imagined a child being. 

Other parents and grandparents feelings.

I asked other people to write an tell whether they would take away their child's Down syndrome if they could and here is what they said. Thank you to everyone who shared their very personal thoughts about this topic.

B wrote of her son, "I would not. Down syndrome is who he is and it is a part of him as much as it is a part of our family. I wouldn't take away my daughter's beautiful brown eyes, or my other daughter's determination; all things they were born with. I happen to think we won the lottery with him having an extra chromosome. I can tell you that he brightens every room he steps in, every wave he gives a stranger and the hugs he shares with people that need it the most (the same people you or I would just walk right past without a second thought."

T wrote, What would be the point? "It is the way it is. She does have Down syndrome. Always will. Why not just celebrate it and celebrate her."

L  wrote about his son, "I don't know if we'd take away his Down syndrome or not. That's a thought provoking question. On one hand, nobody wants their child to have the (understatement) hard life that the syndrome brings, even in its varying degrees. On the other hand, the people I have met in my life with severely limiting medical conditions are some of the most inspiring people I've ever met, and add something to the world that so-called "able-bodies" people don't (or won't).

M writes of her son that she loves him "exactly the way he is" and that he is "everything I could have wished for." She also writes, "At the same time, I can recognize the feelings of worry that every parent has. These worries are different for kids with special needs. I did not say more, just different."  As with many of the other responses, M says she is torn between her love for her son who is perfect to her exactly as he is and her wish to protect him from a sometimes "un-accepting and cruel world" to make his life a bit easier and less challenging, but without that extra chromosome- her son just wouldn't be the same person he is.

One grandparent wrote that their grandchild with Down syndrome has made their entire family more compassionate and better. For this particular grandparent, they would take away Down syndrome for their grandchild's sake, but not their own. The greater health issues and struggles with learning skills and tasks are some areas they wish their grandchild did not have to struggle with. This grandparent and the family love their grandchild unconditionally, but they do wish that the grandchild did not have so many struggles along the way. 

The grandparent seemed to summarize what many of the parents felt. That they would not want to change their child, but would like to take away the health issues. 

For me, the health issues have been a very real part of Down syndrome since long before Joey was born. With all of his health issues in utero and then his health issues since birth, there have been many a night when I have pleaded with God to let me go through the struggle, surgery or procedure instead of Joey having to do it again. 

Then there are my very real fears of what his life may be like as a teenager and then an adult. I fear isolation and loneliness in Joey's life and I pray that God allows him to have a full and meaningful life in which he achieves his dreams and has meaningful friendships and romantic relationships as well. 

The following excerpt from an editorial in The New York Times yesterday by Lawrence Downes illustrates one of my worries for Joey. In the editorial, Downes quotes John Franklin Stephens, a man from Virginia who has Down syndrome and serves as a global messenger for the Special Olympics:

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”
“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”

I would not take Down syndrome away from Joey's life. I hope that by writing and advocating I can help educate the world and help make it a world where individuals with Down syndrome and other disabilities are not excluded from the group because they are different. I don't want to change Joey. I want to change the world.

Another topic I am contemplating and worrying over. Anyone have any ideas? Any answers? Any input? 

Do your other children know that your child has Down syndrome? How did you tell them? When did you tell them?

World Down Syndrome Day is 3/21/13!!!


  1. We have five children. Our older two daughters knew their sister had Down Syndrome shortly after we found out ~ when she was born. They were only two at the time. We have always been very open. Her younger sister (who is a five year old now) has always known. We never really 'told' her because it is a part of the natural flow and conversation of our household. We embrace her diagnosis ~ it is our normal. My one year old doesn't have a clue yet, but she will figure it out on her own as well...

    1. I think you are right--- I think Tommy knows something (all the appointments and surgeries)-- he actually probably knows more than we think he knows. :-) I think it is also probably part of his normal and along the way he will figure out there is a name for it as well. Thank you for your thoughtful comment!!

  2. Jen, another beautifully, thought-provoking post. I just realized that I never wrote my post or emailed you (got a little side-tracked by Ellie's head bonk). Anyway, I would want to take away thr health issues, but not the Ds. I think that extra chromosome is a part of who she is. It is hard to think along these lines. Let's say, the techonology was there to remove that extra chromosome. Who are we to play God? Where does it end? It is a slippery slope.

    1. Thank you, Anna!! Ellie's head bonk had me so worried as well- can't imagine how you got through it! Such a slippery slope.... I hope that the world continues to see the value in variances and does not constantly seek perfection. Thank you for your thoughts on this!

  3. You are soooo good with words and your heart is pretty good too!

  4. Such a well-written post. I have written one like it before and my feelings seem to be very similar to your own and to your contributors'. All parents would like to take away their child's heartache and suffering. Perhaps it is good that we cannot. But I wouldn't take Ds away.

  5. Today actually I was talking to a girlfriend about World Down Syndrome Day, My 3yr old daughter says " my brodder has Down Syndrome" ( she was 15 months when he was born) I smiled at her and said yes you are right. I then for the 1st time asked her what that meant to her... Her words Uhmm it means we go to all the dr's, and I hold his hand and kiss him, uhmm i know sign language for him, he gets needles ( it was RSV shot for her brother and uhmm mommy he just my handsome brother and I love him. <3 Perfect answer!!!


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