Life Beyond Reason

There is an old Taoist story about a farmer who lives on the edge of barbarian territory. One day, his horse runs away. Everyone pitied the farmer, but being a wise man, the farmer asked them, “How do you know this is not a good thing?” Later, the horse returned to the farmer accompanied by an outstanding barbarian stallion. Everyone congratulated him, but the farmer asked them, “How do you know this is not a bad thing?” On the surface, it may seem easy to judge whether a particular event is lucky or unlucky. In reality, it is often far more difficult to tell.

When my wife Susan and I were told a few days after he was born that our son Toby had Down syndrome, I thought we were at least somewhat prepared for the news. We had already discussed the possibility of chromosomal abnormalities. During our early discussions, the ones that occurred ‘pre-conception,’ the proper course of action seemed so straightforward: due to our advanced maternal age we would have an amniocentesis. If the test indicated any kind of abnormality we would most likely abort. We could always try again. Of course, the final decision as to whether or not we would abort would be entirely up to my wife, Susan— the fetus was in her body, after all— but since neither of us were strictly opposed to abortion, the choice seemed pretty clear to me. Oh, how crude and limited my thinking was back in those “straight line, simple curve” days of “reason!”

Four months into the pregnancy, there were moments when this logical “left-brained” course of action seemed far less reasonable. By then, we had both bonded with the fetus, a being I scrupulously avoided referring to as “our baby” for fear it might not make it to term. We felt the fetus move. We listened to its heartbeat. We took it on a tour of a couple of different hospitals so it could get a feel for where it might come into the world. We even flew it cross-country to meet its maternal grandparents. Our lives already revolved around our future child even before it could survive outside of its maternal “life support system.” Step by step, it happened. Despite my best efforts to the contrary, efforts made with the best of intentions both for our young family and for the quality of life of our future child, we had become quite attached to that little ball of cells. We had fallen in love with our baby.

So, when we finally arrived at the local geneticist’s office for our previously scheduled amniocentesis, I probably should have chosen my words a bit more carefully. Instead, I simply asked my wife, point-blank, “So, if the test comes back positive for a chromosomal abnormality, we’ll abort, right?”* This blunt question triggered such an explosive response from my wife that we were left with no choice but to forego the amnio. For one thing, there was no point: we were clearly going to have that baby, no matter what. Why risk a miscarriage just so some lab tech could peek at our baby’s chromosomes? But, more importantly, it now no longer mattered what those chromosomes looked like. This baby was already a member of our family, and as a member of our family we would deal with whatever incidental difficulties it might face, no matter what.

To be honest, making the decision not to go through with the amniocentesis brought with it quite a sense of relief. Prior to feeling that we were both truly committed to this child I constantly worried about all manner of biological catastrophe that might befall it. Once it was clear that we were willing to fight for its survival no matter what, these worries largely faded away. Of course, the chances that any of those biological catastrophes would actually occur were still the same. What had changed was how we would respond. Rather than merely throwing away this little being and trying again, we would now do whatever was necessary to ensure that it had its best shot at making it in the world. Whatever natural handicaps it might have, we would figure out a way for it to compensate. We may not have left the geneticist’s office with the particular bits of information we thought we would receive when we first arrived, but we got information that was far, far more important. We left knowing we were a family.

This was the first of many lessons that Toby has taught us throughout his young life.** When one gives up trying to control every aspect of life, one truly can begin to live. When one is caught up with every conceivable detail, one can miss the real depth and richness of life. We learned to celebrate the positive in Toby’s life— his strong heartbeat, his active in utero ‘lifestyle.’ We played games with him in the womb, tapping out rhythms, teaching him to count. We joyously played music for him, sang him songs, some of them original compositions. As the pregnancy progressed, we nurtured the love we felt for our baby as well as cultivating our own love for one another. We made it an explicit rule not to discuss any of the myriad biological hazards that still might lay in our son’s potential future, so as not to “put that negative energy out there,” so to speak. Instead, we decided it was much wiser to worry only when we really needed to, to worry only if and when some biological disaster actually happened. To my wife, the chances that there was anything wrong with Toby were so slim and the good medical reports we received so frequent (strong heartbeat, good activity, no ‘soft signs’ for Down syndrome***) that there was little reason to worry.

As chance would have it, just as Toby has turned out to be so wonderfully out of the ordinary in so many other ways, he is also a bit extraordinary when it comes to his chromosomes. Toby’s extra chromosome number 21 has had quite an impact on our lives, making them a good deal busier than they might have been otherwise. At first, it took us a while simply to get over the initial shock of learning we were among the lucky few to receive a child with Down Syndrome— as it turned out, we weren’t quite as prepared for the news as I thought we might be. Then, there were all of the classes and therapy sessions for Toby. We received a great deal of advice and direction from the folks at Regional Center and also from our close relatives. It was their advice to immerse Toby in the world as much as possible. We enrolled him in music and sign language classes, in “baby yoga.” We scheduled weekly physical and occupational therapy sessions and a weekly meeting with an infant stimulation specialist. We did all we could to develop his little mind and body. We learned from the various therapists that this immersion in the world is called ‘early intervention’ and many believe it has beneficial effects both for the development of the child with DS as well as for the child’s family. This benefit to the whole family probably comes in part from putting the family in touch with a group of specialists who can provide knowledge, expertise, and support. These specialists can also introduce your family to others who have family members in similar circumstances so these families can support one another and exchange information.

But some of the benefit to a family having a child with DS also comes from the very fact that ones child has special needs. This particular family member, at least, has benefited considerably from having a child like Toby. Prior to Toby’s birth, I knew I wanted children but I didn’t really know why. Having a child with special needs has sensitized me to a whole range of issues that the community faces, issues I used to dismiss as being minor, as being unimportant. Now, it is clear to me that unless we all join together to support those least able to look out for their own rights, the value of these rights themselves are diminished. I have seen myself turn into something of an advocate, not just for my own son, but for all children with special needs. Having a child with special needs completely changes ones concept of what is important in life.

Watching my son grow and develop, I have seen him become more confident and daring. I have seen him go from crawling, to walking, to running, to jumping, in many areas of his life. While watching and trying to guide his development has certainly been challenging and frustrating at times, the sense of elation we felt when he finally did acquire a new skill was truly remarkable. I would not trade those breakthrough moments for anything. While it is possible that parents of typically developing children might experience similar moments when they see their own children go from “I can’t, I can’t…” to “I can, I can!” it is certain to happen many times in the lives of parents of children with special needs.

Watching them make new connections, watching them learn new skills and rewire their brains is truly a joy to behold. It has long been my steadfast belief that all of our brains are a good deal more adaptable than many of us think, and so it is a wonder to see it happening in a child who, three or four decades ago, might have been more commonly left institutionalized, under-stimulated, and abandoned. While most children with Down syndrome will have some developmental delays, it is not necessarily a foregone conclusion that these delays will result in mental retardation. The upper bound of any child’s development is dependent on many factors: personal belief systems, daily life experiences, educational opportunities, other medical complications, major life events, degree of enrichment of the environment, social support networks, etc., etc. And even if your child does develop mental retardation, it is certainly not the end of the world. There are many different kinds of intelligence beyond just verbal and mathematical, the ones typically measured by IQ tests. Your child may well be an interpersonal or a musical genius who, given the right kinds of support and the right environment, may yet live to influence the world in ways that you may not be able to imagine. You never know.

*There are other, rarer chromosomal abnormalities, most of which have a much more severe effect on the child than does trisomy 21.

**One of the incidental things we learned at the geneticist’s office that day was that ‘it’ would be a ‘he.’

***Soft signs for Down syndrome are called “soft” because they are not diagnostic. In other words, their presence doesn’t necessarily mean your child will have Down syndrome and their absence doesn’t necessarily mean that your child will not have Down syndrome. Rather, their presence indicates that your child may have a slightly higher chance of having Down syndrome. Ask your local genetic counselor for more information.

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