“There’s a good chance your son will never walk or talk, or even sit up and feed himself.”
The doctor was a kindly older gentleman, with the white hair that inspires confidence in patients in hospitals the world over. He was in our room on the family floor of Northside Hospital in Atlanta, Georgia. I remember seeing his name tag as he walked through the door, but as the attending physician on the floor, I’d never seen him before, or would again, so I can’t remember what his name tag said. He’d come to us to deliver, what, in his mind, was tragic news. Our son, Timothy, less than a day old, had been diagnosed with Agenesis of the Corpus Callosum.
“He will have significant delays,” the doctor said, explaining precisely what ACC was.
ACC, short for Agenesis of the Corpus Callosum, is a midline disorder of the brain (midline disorders affect the center of the body), where the person in question is born without a corpus callosum. To those familiar with the brain, this region is known as “white matter”, but for most people, the corpus callosum is the structure at the base of the cerebrum that connects the two hemispheres of the brain and allows them to communicate.
And now, here is Dr. What’s-His-Name, telling my wife and I that our beautiful baby boy will have little-to-no quality of life. He walks out the door, after handing us a stack of printed sheets with information about ACC that he had found on the internet for us.
My wife, Heather, turns and looks at me, and I look back.
For several moments neither of us spoke. Then, I looked at Timothy, and began reassessing what our lives would be like. Ok, so we wouldn’t be able to hike in the forest, nor canoe down a quiet river together. We’d never run together or go down a slide at the park. But, he was alive, he was healthy, and he was my son. The rest of that day remains a blur to me. I know that Heather and I both took turns holding Timothy for as long as we could, and marveling at how wonderful he was. I know that Heather spent hours on the phone setting up doctor’s appointments and specialist appointments, but I don’t remember us talking much. I’m sure we did, but those memories have faded. Instead, I remember the joy we took in our son, who, neurologically atypical or not, was our son, and he was remarkable. I know we decided that day that we would cherish every moment we had with him, and to celebrate everything he was able to do, rather than worry about what he wouldn’t be able to do. And the good news was that he was eating and sleeping and peeing and pooping, just like all the nurses said he should be.
That gave me a moment of calm, and of gratitude. For whatever lay ahead of us, I knew that at least my son could eat and drink and sleep, and that he wasn’t hooked up to machines and we could hold him as much as we wanted to. There are many people who never get that chance, and I realized it then, and was thankful for the gift I’d been given.
Over the next several days as we wrapped up our hospital stay, a war was raging inside my head. Timothy looked so “normal”. I’ve grown to despise that word in the years since, but at the time, it was the best descriptor I had. How could this “normal” little boy have such massive challenges ahead? He was alert and interested in the world around him, so how could it be that my son would never sit up, and never speak to me? I wanted to deny Tim’s diagnosis, and wanted the world to go back to “normal”. At the same time, I didn’t want to be in denial, and miss opportunities to be with my son, and to help him. I wanted to make sure that we did everything we could to give Tim the best life he could possibly have.
This battle is one that every parent of a child with special needs will go through. It is not from a lack of love of our child, but is, instead, driven by our love. Maybe, just maybe, we hope down in the deepest depths of our soul, this isn’t real and our child will wake up tomorrow and all will be well.
Timothy
When Tim was born, I used to beat myself up over this desire for “normal”, because I thought it meant I wasn’t loving him enough. But as time passed, I learned two things: first, it is ok to wish for things to have started differently than they did—this isn’t disloyalty, just simple human nature, and second, I grew to know that “normal” is every day with my son. He is my “normal”, he is perfect, and most importantly, he is my son.
For all the parents out there who are wrestling with a diagnosis, just know, you are not alone, and your struggle (even if it isn’t visible) is real, is meaningful, and you are doing a wonderful job as a parent. Give yourself permission to dream dreams of things that never will be, but never forget what a precious gift your child is, no matter how difficult the road you travel.
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here. For more information on Agenesis of the Corpus Callosum, please visit National Organization for Rare Disorders.
Cover Photo: Eiko Ojala