Taking Away the Down Syndrome

You know it didn’t just begin, this quest for curing Down syndrome. I am no expert but based on what I’ve seen in my 14 years of living with Rachel, nine months of expecting her and all those years studying the history, people have been looking for and purporting cures and such since they discovered this thing called Down syndrome. I want to be clear that I do not believe Rachel needs to be cured. I believe God created her to be just who she is.

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So last week when researchers at the University of Massachusetts Medical School announced that it is possible to shut down the extra chromosome that causes the developmental problems and intellectual disabilities in people with Down syndrome, there was an upsurge in the chatter. The release of this study coincided almost perfectly with the National Down Syndrome Congress convention where a few thousand families gather each year to learn about the latest research and work together so individuals with Down syndrome can live real lives. There were more than a few side conversations about the discovery ethically and in practical terms.

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The question has been posed to me in the past.  This exert from my blog, the Kansas City Star and hundreds of speeches I have given says this: I am not now nor will I ever be that person who says, ‘I can’t imagine my child without Down syndrome.’  I wouldn’t change him or her if I could. I couldn’t love her more, but I would give almost anything to take away that extra chromosome.”  In my finite little pea brain, I never imagined that it might be possible and now you are telling me it may very well be possible so I have to really ponder the question.

My immediate answer is that I would have to have more information before I would let you suck genetic material out of Rachel. I mean she is pretty awesome.  As a mamma bear, my first inclination is that I need to know about safety.

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I realize there is a contingent of people out there saying “God created her this way and it is wrong to even consider this.” I respect that view point but I don’t think my faith is lessened by the fact that I would do almost anything to make my daughter’s life better. While I may know that she is perfect like she is, the world doesn’t. Right here in the good old USA, the reality is people with Down syndrome are seen as defective. They have a harder time living up to the artificial measures (grades, sports and accumulation of wealth to name a few) that we Americans use to measure success.  While Rachel does well in school, she has a ton of modifications and accommodations. I often say she works twice as hard to do half as much. Her brain has to work so hard to stay with others socially and intellectually. She rarely complains. While she has been quite healthy, many of our friends with Down syndrome  have serious health issues and some have died. I have stood beside many families as they buried their little angels.  Individuals with Down syndrome are more prone to many health problems including depression than the general population. My daughter can run down a soccer field and at the end her greatest accomplishment will be when she flashes her smile. Rachel is fiercely devoted to her friends and truly finds joy in the journey. At the end of the day that smile, that joy and that devotion is not enough to make her less than defective in the eyes of many people though. The truth is that you need look no farther than television and the movies where many people still take sport in poking fun at individuals with intellectual disabilities. I can’t think of anyone who has lost their job for using the R-word lately.

If a person is born with or develops poor eyesight, then we give them glasses or perform surgery. If a person is born with partially missing limbs, we make them a prosthetic. Sometimes when a person has seizures, we remove part of the brain to stop the seizures. God created those individuals just as they are and most of us would agree that improved eyesight, prosthetic limbs and the absence of seizures is a good thing. In the same way if I could  improve Rachel’s cognition I would. If taking away that extra chromosome would improve her health status, I would.

For now though, that is not an option. It may be in her lifetime. I just don’t know. For now I don’t want to waste much of our precious time worrying about something that may never be an option. I will study it. I will read the research and I will ask questions. I will continue to attend the NDSC Convention and other educational programs. I will continue to do my work as an National Down Syndrome Society Ambassador and advocate to improve laws and programs so individuals with Down syndrome can achieve their dreams. I will continue to share our journey in hopes that it will help another on the journey. I will continue to advocate for school, community and church inclusion. I will continue to be a mamma bear for Rachel and others with Down syndrome.

Still, I will always be able to end a blog, article or a speech with this: Still, I know that my worldview, my faith view and my people view is richer, fuller and different because of Rachel and this journey we have embraced.  While I know that God is touching lives through her, the first life He had to mold was and is my own.” 

And I will join Rachel in finding joy in the journey.

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15 comments

  1. julie says:

    Thank you for sharing this! I, too, have been thinking about the implications of this new study, and whether I would opt in (if it got to that point). I enjoyed hearing it from a faith-based perspective and not just scientific.
    Also, I just LOVE the picture of Rachel’s baptism! What a joyous moment that must have been for every single person in the room!

    • sassysoutherngal says:

      Julie – I blogged about her baptism but it was on posterous and we couldn’t get them migrated over. I kept copies of all though and I will re-post sometime. It was joyous. Not better thing. She came to be very fond of the song “Beautiful Things” last year. I don’t know if you are familiar but it is so beautiful and says “He makes beautiful things out of dust; He makes beautiful things out of us.” Love it. Thanks for reading.

    • Jane Brooks says:

      I like the baptism picture too. I was sprinkled as a young child but believe I should be dipped. God does know me and I know and love him.
      I have a son who has ds-asd and apraxia. As far as taking advantage of the option to remove the unomas 21 . I would. Not because I would not prefer my wonderful son the way he is. But because I know how it is to have challenges that other people find so easy. If I could have a process that would be painless and available I would certainly want to be able to think and get thing done easier. I realize some people who have down syndrome or autism have wonderful social lives. But for us , it has been very challenging. Why struggle with simple things if you are able to get help with them so you can enjoy the more complicated things in life. Like driving.

  2. Neil Cummins says:

    Hi,
    Thank you for a very well thought out blog post.
    As fellow parents of a child with DS we were blown away with the news last week. Obviously it’s early days in the development but you still can’t help imagining the possibilities. Our little boy is two and a half and while now he’s pretty healthy the early days were tough. He’s still PEG fed and any time he sleeps he needs to wear his CPAP machine. Would I take away those problems, absolutely, but if there was any risk to changing his personality I’m not so sure!!
    Here’s an article by a prominent Irish journalist who himself is the father of a little girl with DS. It sums it up pretty well for me I think.

    http://www.independent.ie/opinion/analysis/brendan-oconnor-would-fixing-our-child-with-downs-mean-wed-be-given-back-a-stranger-29436268.html

    Best wishes,
    Neil

    • sassysoutherngal says:

      Thanks for reading Neil. I read Brendan’s blog and thought it was very good. Kind of says the same think I said. Always good to hear a dad’s view point!

  3. Joe Meares says:

    This just in: Researchers at Vanderbilt University have discovered a treatment which helps southern folk annunciate and clearly speak the letter “R”. I’ve signed us BOTH up for the clinical trial. Great blog!

    • sassysoutherngal says:

      Thanks to all of you for reading. The feedback I’ve received via FB and on here indicates that there are a lot of us feeling this way but many people didn’t feel like they could say it. I like to think we can be respectful of our differences! And Mr. Joe – since they will talk like this in heaven I have no need to work on my annunciation of any words. I am a bit tired of having to spell oil and foil though!

  4. Natalie says:

    Very well said-I can see the merit in the research but I’m even afraid to get Lasix surgery on my eyes so as a fellow “mamabear” safety concerns me too!

    • sassysoutherngal says:

      My brain is not very big so while there are risks I would take for myself – I might not for Rachel. Of course, I also try not to let my fears preclude Rachel from doing things. I would just need more information about how you could actually in practical terms do this and not upset the balance of nature? As I said, I’m not spending a lot of time worrying about it right now though! Thanks for reading.

  5. Missy Holman says:

    Great Post! Love your sweet southern hospitality that clearly says its ok to think. We would all be wise to think and pray more then spout and chastise what others think. I’m reminded of a wonderful awareness video that encourages giving others “10 seconds” to express how they feel or what they need or just to speak. Might we all follow this example as we travel this new road together. Thanks for your courage to say what’s on your heart!

  6. sassysoutherngal says:

    Missy – so glad to hear from you. I have a good friend in the DS community that says “why do we in the DS community eat our young?” Kind of true with this too. We can think differently and play in the sandbox together. And we can learn a lot from our friends with Down syndrome huh? Hope to see you again at BWW and/or Indy at NDSC next year! Thanks for reading us and doing this journey together!

  7. Kathleen says:

    Great post. I think that we all care about improving the quality of life for all of our children. If research can move us in this direction, I support it and it does not mean that we do not value the person who needs help. Don’t we all need some help at some point in our life? David, my son used to ask me when he was 8 “when will I get rid of this Down syndrome thing?” and I always told him it will not stop you from being successful. Researching how the brain works is a good thing for all of us and not only people with Down syndrome. Thanks for the post

  8. Rick says:

    Thank you so much for sharing such a moving expression of your faith. I have two children who were diagnosed with Crohn’s disease. The medical community has done all they can to help. Our kids are now adults. One is free of Crohn’s from using holistic dr. The other is nearly free of the toxins they use to fight this disease. During this battle ( 13 years now ) we have never had to consider the question you have asked. I am so sorry that people with so called normal kids project such pain onto others. Of course we parents want what’s best for our children. In our eyes they are perfectly formed and we love them perfectly. The hundreds of trips to ER’s or the countless surgeries never caused us to feel our kids were anything less than perfect. I applaud your tenacious spirit. I also admire your deep abiding faith in God. As science catches up to God’s whisperings they will eventually present you with an option to improve your child’s health and life. As a loving parent I am confident you wll make the best choice for your own child. My daughter is engaged to a young man who’s younger brother has Down Syndrome. She loves him and is always sharing his life with us. Ryan has blessed all of our lives. My daughter and future son in law plan on having Ryan live with them once they are married. May God continue to bless your family while the rest of the world plays catch up. : )

  9. sassysoutherngal says:

    Thanks for reading. There is so much to be learned from people with Down syndrome that will help others. Alzheimer’s, cancer, quality of life for that matter.

  10. sassysoutherngal says:

    Thanks to all for reading! Jane – I don’t believe immersion, or believer’s baptism as we call it, is necessary to secure your salvation. Sounds you you got it and God has you. I do know my friends who have been immersed as adults have found it to be a moving experience. I appreciate your comments and think they reflect what I was trying to communicate. Thanks for sharing.

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