The Last 18 Months Have Been…
Pretty crazy overall. Between grappling with Adam’s condition, his vomiting, getting him the services and help he needs, plus a necessary move, it’s been an extremely busy time for our family. In all of the frenzy, I’ve found Adam to be a real source of comfort despite the stress of the consequences of his condition (CTD).The logistics required for us to support Adam on a day-to-day basis are….considerable. They challenge us and make us better in different ways. It’s a bit surreal to see how others interpret or try to relate to our situation. “Don’t worry he’ll get better” or “I’m sure they’ll find a cure” are a couple of things that individuals with the best intentions will say, but oddly, it twists the knife a bit because we know that neither of those things will happen for him. We empathize with others that have special needs children in that subtle way that you would relate with those that you have experienced something deep with, together. There’s an unspoken, tragic understanding and bond that we share. Yet because of the strong societal biases towards “normal”, we feel increasingly alone. This is exacerbated by the fact that Adam, in particular, has a condition that is among the rarest in the world. It is considered a neglected disease.
There are no online campaigns of awareness, there are no bumper stickers, no races or events. We do however have the wonderful researchers at the NIH who have been undergoing an observational study on CTD patients. It’s not treatment since there is no cure, but it’s focused attention for Adam that we otherwise would not have and it helps to make us feel seen by others through the lens that we see ourselves.
I sometimes used to sit back and wonder at how parents of special needs children cope and get by. At the time I wasn’t even aware of the mountain of challenges they go through, rather I only noted what I saw on the surface and what I assumed in my own mind. Now I know and more, and I’m an ocean away from where I used to be. I’ve realized that the coping and the “getting by” never stops. The emotional and mental anguish doesn’t go away. These are constants now, but the anguish is for reasons beyond self-pity, and more for fear of not being able to do enough for Adam. It’s an anxiety. If you ever want to see me cry, ask me what will become of Adam after I’m gone. The old adage that no one will love a child like their parents is an open wound when you consider your child as a grown adult who is entirely incapable of caring for themselves. It is a lonesome place to be when one’s fears are wholly different and relatively unaddressed from the fears of everyone else.
It’s a unique test that’s also met with unique blessings. One thing I never understood about parents with special needs children is that almost unfailingly, a cornerstone of their worldview is that they would never change a thing about their child. I couldn’t see past that until we were given Adam.
Adam’s condition renders him pure of heart and mind. He will always require dependent care and has an innocence about him that I have come to crave the presence of. He (and all of us) has been blessed with a calm temperament and he is a joy to be around. He asks for nothing except to be around family and in a positive environment. Without speaking (he is non-verbal), he teaches my other children life lessons that I myself am powerless to impart on them. In many ways, Adam is fortunate with his siblings, but he is a fortune to us. His laugh is infectious and addictive, and we celebrate even the smallest accomplishments because we know he has to climb a mountain to make it each time. With everything he has had to endure and continues to endure in his very short 3 years so far, he has proven to be more resilient than any single person I know, and he is a constant reminder for me that I can always do better with all that I’ve been given.