This morning brought us sighs of relief and tears of joy: the results of Walter’s amniocentesis came back NEGATIVE! We had received the initial results earlier in the week indicating that Wally did not have any of the most common chromosomal defects: Trisomy 13, 18, or 21 (Down Syndrome), as well as negative for neural tube defects, sex chromosomal abnormalities, and a few other often run tests.
We held off on updating the results, however, because we were still awaiting the results of the amnio FISH test – looking specifically for DiGeorge Syndrome. Unlike many other chromosome defects that are whole duplications or deletions of chromosomes, DiGeorge (or 22.11q) is a partial deletion which can be just as devastating – and is commonly linked with Tetralogy of Fallot. It is one of those statistical logic games where “almost all babies with DiGeorge Syndrome have Tetralogy of Fallot (or other severe heart defect), but not all babies with Tetralogy of Fallot have DiGeorge Syndrome. Our perinatologist called us this morning (on a Saturday, giving me a scare) to relay the news that the test for DiGeorge came back negative as well.
The results were thrilling: allowing us to return to what is now our new “normal” – just a heart defect needing open-heart surgery. We can picture our little Walter walking, playing, and learning just like the little boy we thought we were having just two weeks ago. With so much relief and “answered prayers” comes a heavy guilt. (I am quickly learning that motherhood entails bouts of worry and guilt interrupted by sheer panic, and my sources indicate it won’t be subsiding anytime soon.) Still, my new experiences have given me new prospective. It isn’t the kind of experience or prospective I asked for or wanted: not like studying abroad or learning a new language. No, it is utterly painful and self-reflective experience that I would wish on no one, but experience and prospective nonetheless.
For a good portion of my life I have had interaction with children and young adults with special needs and severe mental handicaps. These range from adorable tots with Down Syndrome to non-verbal twenty year-olds in basic life skills training (learning things like eating and dressing on their own). In every instance I have been drawn to their kindness, their hardships, and the incredible determination of their parents. I admired their parents for their strength, and never once feared their children’s disabilities. After all, when I was done coaching, tutoring, or assisting, the children went home with their parents and I went about my day.
But when we found out that Walter very well could have any number of severe mental handicaps and special needs, nothing seemed obvious anymore, and I was afraid. Though we knew we would carry Wally to term and love him no matter his disability, I was frustrated that such a horror could happen to my child. I was scared for his youth and how he would develop (or develop minimally). And I was terrified for his adulthood and whether he would ever be able to care for himself. I selfishly cried for the “perfect” baby boy I had envisioned, and for the future of our family. What would our life look like? What would my life look like? Would we ever have more children? Suddenly, a mental handicap did not seem so straightforward after all. I cried at Church when parents piled in with their six beautiful children, and I despised the geese that flock our apartment with their trains of chipper goslings. I wanted to know why God would do this to me, and to a child. Wasn’t it frightening enough to care for another human life in its entirety – did God really need to throw me this curveball?
My guilt stemmed from the joy and relief I felt learning that Walter would be born without the mentally and physically devastating defects we feared. No rational person wishes for his or her child to have special needs, and we would love Walter just the same if he did. At the same time, I am glad that we were having a baby who doesn’t face those challenges, and can’t help but feel painfully guilty for feeling this way. This, after all, was not a win-lose, moral, or qualitative game. Parents who have children with severe mental handicaps have done nothing better or worse than Dan or I to “deserve” such heartache. We fell on the “lucky” side of the chromosomal defect statistic, and the “unlucky” side of the heart defect statistic. How easily we could have been given “bad”, rather than “good” news this morning. Of course, statistics mean practically nothing for any one individual in any given circumstance, though they frequently lessen or aggravate our fears. Still, for two painstakingly long weeks we faced a very possible reality of caring for a child needing a lifetime of specialized physical and mental care – getting a glimpse at what it could mean for us if it were to become our new “normal”. So uneventfully, we were freed from this anxious agony through a few test results over the phone, and so easily I could be giving a different update about Walter’s future right now.
My conclusion is nothing remarkable except what we have all heard since we were children, “life isn’t fair”. Or in more detail: neither life, nor God, gives us what we have earned or deserve, because quite frankly, we aren’t entitled to any specific life or circumstance regardless of our choices, decisions, or character along the way. What we are entitled to is just that: choices and decisions of attitude when facing these circumstances, and the character to rise above such trials. We recognize that for now, this is our test.