Saturday, October 12, 2013

True Luxury

I asked Scott why he thought so many people seemed to be against safe, accurate and early prenatal testing, and why so many insisted there was no problem with Down syndrome. It occurred to me as I asked this that if I am seemingly the anomaly, perhaps something made me different. So I reflected on this when I could. Why do I see early accurate testing as a hopeful sign? Well, because I wouldn't terminate a pregnancy under any circumstance, and because I believe there may be prenatal opportunities to help a baby with specific nutritional guidelines and possible fetal surgery. Why do I see Down syndrome as problematic and can easily view my child as a blessing? Because I don't see Mae as the sum of her chromosomes. She's so much like her siblings and so very much herself, but Down syndrome is slowing her from doing what she wants. I hate when therapists say things about her personality are very "Down syndrome typical" when in fact, friendliness, a quick temper and stubbornness are family traits she probably would have inherited anyway. I see Mae-Mae for who she is and I see what having Ds does to her, and I'd fix that if I could. Heck, that's what all the therapy is for!

The root reason I have this viewpoint, I think, is because I live in the best community to raise a child with Down syndrome. The surgical team who performed my C-section had enough wisdom to see I was wack-a-doo with drugs and not say anything about it to me, though the anesthesiologist did ask some leading questions that I now realized were an attempt to help me realize the facts. The NICU doctor who did tell us was so perfect, I wish he would get a medal. First, he congratulated us on her birth, then he asked if we understood why she was in the NICU. Then he explained the issues, and lastly he said, "I suspect she has Down syndrome, so I have sent her blood for genetic testing." He did all in his power to keep her at the NICU of the hospital where I delivered until I was almost ready to be discharged, and he promised me there would be no secrets. I have an abiding love and appreciation for this man because of his honest and candid nature.

Our community adores Mariana. She gets free stuff all the time, sometimes without permission from her parents! In fact, I would say rather than devaluing her because she has Down syndrome, she is often valued more than our other children because she has Down syndrome. I myself have to be watchful about over-emphasizing her value and make a concerted effort to pointedly affirm our other children's good qualities lest they imagine she is more special than they are. People here seems to understand to wait patiently for her to respond, and many sign to her as well. There have been some rude comments, but most have been in ignorance, and I hold no grudge against the ignorant who do not remain willfully so. Much of the rudeness we face is when complete strangers ask deeply personal questions at inopportune times, like while I'm paying for my groceries. Not everyone is great at timing, but bad timing is far more favorable than nasty commentary.

The school where our children go has embraced Mariana in a special way even though she will not be able to attend. It's a small school that doesn't have enough space for the currently enrolled students, and they have no special education staff. I expressed my sadness to the principal that Mae wouldn't get to be part of the community I wanted my kids to grow up in, and he readily hosted me in a meeting to discussed ways to be a partner with the Down Syndrome Association of Jacksonville. Each person at that meeting was engaged and interested in what I had to say and genuinely expressed a desire to teach the children at the school another way to witness the dignity in each person.

There are countless stories out there of doctors delivering the diagnosis like they are sentencing parents to a dismal future, and prenatally, encourage them to abort and "try for a healthy one." Many recount the rudeness and ignorance they face daily. Many schools reject children because its "unfair to the normal kids" to make accommodations for a minority. It is no wonder that these fiercely loving parents reject safe and early prenatal testing and see it as a tool for eugenicists. It's no wonder that they claim their children do not need to be cured of Down syndrome. I can't blame any of those loving caregivers for being frustrated that people see their child as a Down syndrome kid rather than a kid who has Down syndrome. It makes little difference to me because it hasn't been used against Mariana. How differently would I feel if it were?

I'm still convicted that Down syndrome is a problem, much in the way that cerebral palsy is a problem. I still separate Mariana from her diagnosis and hope to overcome the problems this little extra genetic material causes her. It is important for me to also recognize that this belief is a luxury afforded to me by living in a generous and caring community. Those who disagree most likely do not have the same wonderful experience as I. It is a tragedy that our community is a rarity, and I pray God has mercy on these people who do not lovingly accept his beautiful children. Caring for them is the one of the sweetest experiences life has to offer.


  1. Anonymous10:07 AM EDT

    bravo, Barbara. A thoughtful post. Although I hesitate to agree with your statement that Ds is a problem, I see your point. The hindrance that the disability provides is really the problem. The delays, the difficulties with communication, the health concerns, etc. But 6 years in, and I just see so many blessings that Ds has allowed in our lives. Caleb is who he is, for the most part, because he has Ds. Would we change things now, if we could? Would we take away the Ds, if we could? I honestly don't think so.
    ALTHOUGH, I am totally in favor of research, and the implications it might have on cognition and therapies for the future. As you stated about therapy-that's really the point, right? To help each child with whatever disability they have, be the best they can be? Achieve the most they can? I think some parents struggle with that though. I don't really know why, b/c we've always wanted the best for both our kids. It's just something I've run across in the past 6 years.
    I don't believe any improvement in the research arena would change Caleb, or any of our kids, from the person they are inherently. It would be another tool in the toolbox, the same as accomodations, good therapists, teaching tools.
    You hit the nail on the head about prenatal testing. So many fear the disappearance of Down syndrome. While personally, I don't believe that will ever be the case, I do believe that numbers of births might drop. The earlier people know their child might not be the child they've hoped and dreamed of, the easier termination might be. Before they've felt the flutter of the heartbeat, or the kick of that foot in their stomach. Before that bond is made.
    We do live in a great community in many ways, and your family is blessed to have a terrific supportive school/church environment. And don't forget the DSAJ is here to support too! :)

    1. Thank you so much for your thoughtful and thought provoking response. I write what I think precisely because I am not so certain my opinion is well formed in the short 19 months of being Mae's mom. I do, however, staunchly believe the DSAJ is the most influential reason that our community is so at ease with Mariana and so well prepared to receive her as-is.
      I ask myself about curing Down syndrome for Mae all the time, and the fact remains it would depend on the cure. We know that Down syndrome is extra genetic material, specifically an extra 21st chromosome, and we know that genes have a fundamental impact on who we are as individuals. So in a way phrasing it the way I did seems to imply that I want to cure a fundamental part of who Mae is. I assure you I do not. That said, who she is also hast to do with her environment and her habits. Already she is tenacious and comedic. I can't foresee that changing if we were to somehow silence the extra gene in her cells. I also am completely aware of the Law of Unintended Consequences. That is why I believe in research and experimentation and a thorough scientific approach. However, it is important to continually fight for science in the interest of the individual as opposed to science in the perceived interest of the collective. The perceived benefit for the collective swings both ways. There are the eugenicists, who believe in a type of culling the population of those who would dare be born in need of special care. There are also those who would say that people with Down syndrome are so beneficial to the community that a cure ought not be pursued. I can't buy that position either. My position is that whatever serves the individual with Down syndrome the best, is what is best. I don't view a cure as something that should alter Mae's fundamental person, but something that should mitigate the risks she faces because she has Down syndrome.
      I have stated in other posts that I have greatly benefited from raising a child with Down syndrome. Selfishly I wouldn't change that under any circumstance. It is Mae's best interest I must always assess and address. It's not an easy thing when you passionately love your life more because of Down syndrome. I call Down syndrome a problem because of what it does to Mariana, not because it somehow detracts from our experience, but I understand reading these words can seem like an attack on the person. I will have to carefully consider that for sure.