Accepting you have a special needs child.
By Carolyn Murray
When my son Daniel was only eleven months old, I went for my annual check-up with my obstetrician. While I waited for my name to be called my mind drifted. I had spent a lot of time there the previous year, preparing for Daniel's birth. The smell of the office was familiar and made my body almost feel expectant again.
I imagined that if I went through the waiting room door and into one of the cubicles beyond it I might travel back in time. Maybe my pregnant belly would reappear and I would discover that my baby was due next month and that the last year was a hallucination. It happens in soap operas. I remember when they brought Bobby Ewing back to life on the night-time soap opera 'Dallas' by explaining that the entire previous year's episodes had been a dream of one of the characters. What an escape hatch!
Perhaps I could go back to the moment in time that Daniel's brain growth slowed and change some circumstance or other that would restore it to normal development. What if passing through that door meant awakening to a different reality?
There were two women nearby, one with a baby Daniel's age. They were discussing the sounds their babies were making. The baby boy was repeating "ma-ma" and the other mom mentioned that her daughter was still stuck on "da-da".I watched them and felt a twinge. It brought home again how real his delays were. It seemed to me that he'd been left in their dust and that trying to catch up would be like my being able to lose fifteen pounds before Thanksgiving, only ten days away.
I was used to these passing feelings by then. Mostly I had accepted that my son has special challenges, but sometimes the desire for normalcy rose up within me without warning. Seeing other children his age was one strong impetus for those feelings. Even now, fear of the future ebbs and flows, and optimism follows a similar course.
When I sat down to have my blood pressure taken at the doctor's office that morning, I let the sadness wash over me. Being there reminded me of the high hopes I'd had for my baby while he was still growing inside of me. I felt the reality of microcephaly again and let it go. My life so far hasn't provided any magical doors to change, just portals leading to deeper opportunities for learning how to really love.
Time goes on. Overall I've reached a pretty good balance between trying to optimize his development as much as posssible and just plain enjoy him like any toddler (even though he doesn't "toddle" yet). It isn't hard to fall in love with the adorable little guy, either. All he has to do is smile at me and I'm his. In a fast food, microwave society it's possible to go through life never really appreciating the savory taste of food grown in the backyard, cooked slowly over a flaming burner in your own kitchen. We tend to want things not now, but yesterday.
Daniel's birth began a unique training in patience for me. Having a child with delays in development can sometimes make you feel that you're trying to force a plant to grow. Goals are painstakingly met. It's hard to spend day after day working on a simple skill like holding a bottle when the weeks so often turn into months. So much for the quick-zap, drive-through parenting method!
The upside of the story is that when a milesone is reached, the elation that everyone feels is a high like no other. When my son was finally able to sit without toppling over or folding into the taco position, it was cause for a celebration in our house. When he learned to clap I made homemade chocolate pudding for dessert that night, and we all applauded him in kind.
When we brought Daniel home from the hospital I thought that his having significant challenges would make my life forever sad. It has not. I am happy in ways that I've never imagined before. My son is a major reason for that joy. He grows my heart bigger and helps me to see how capable I really am. He teaches me.
Since his birth he has been examined by over a dozen specialists. He's undergone magnetic resonance imaging and CT scans of his brain, several electroencephalograms, to observe his brain's electrical activity, and countless venipunctures so that his blood can be analyzed for one thing or another. He has physical, occupational, speech, vision, and developmental therapy. Throughout all of this he's become an affectionate, playful little boy.
He's two years old now. I no longer have fantasies of waking up to a different circumstance. Our life together is not what I expected, it's true; and I would never pass up an opportunity to make things easier for him. But in the meantime--that space of time that becomes our lives--I'm loving a little boy who amazes us everyday by his courage, love, and wrought iron will. In these things, he's way ahead of the game.