I read something last week that made me cry.
Something that brought back the fear—the cold, cold fear—that Rob and I faced the first few months of Graham’s life.
It was an exquisitely written blog post by a young mother concerned with her baby’s developmental progress and it made me cry because I have been there. I have clutched my sweet baby to my chest, blinked back hot tears and thought, “Let us alone, he is perfect just the way he is,” even as insidious tentacles of doubt slid over the edges of my heart and squeezed.
From the moment my water broke the circumstances of Graham’s birth proved that fate laughs at probabilities: I was eight centimeters dilated before it was determined he was arriving butt first. When he finally arrived it was with an irregularly-shaped head which protruded markedly out the back—like a football. We were told it would probably resolve itself in a few days and that the anomaly was commonly referred to as a prominent occiput.
Except a prominent occiput isn’t that common, not really. Not even for babies who spend the whole time in utero in the Frank breech position like he did. Or babies who lose more than a pound in the days after their birth and fail to regain their birth weight for almost a month like he did.
At Graham’s three-week check-up, the midwife weighed him and then examined his skull with a grim expression. He was probably fine, she said, except …
Except that his prominent occiput was unresolved. Except that Graham wasn’t gaining weight like he should be. Except these things could be symptomatic of something bad. Something very bad.
He could be fine, she said. But if not—if not—I would need to learn to manage it as soon as possible.
I left in a cloudy haze of tears, clutching a referral for a pediatrician specializing in neurology and leaning on my mother who could only hiss indignantly: There is nothing wrong with this baby!
Oh how I wanted to believe her. We went home and I remember crawling into bed with Graham and sleeping for hours, waking only occasionally to nurse and weep, my tears falling one after another onto that dear, misshapen head.
The next few weeks were among the most difficult of my life. After swearing mom to secrecy, Rob and I decided not to tell anyone else in our family. It seemed selfish to burden others with our worry and we couldn’t imagine fielding questions when we could barely function under the weight of our own fear.
Graham thrived over the next few weeks. He smiled. He started to gain weight. I actually looked forward to our appointment with the specialist, sure that it would be our last.
But it wasn’t. Graham could be fine, the specialist said. Was probably fine even, except …
Except his prominent occiput was still very, very prominent. Except he was still very small. Except these things were sometimes, rarely but sometimes, symptomatic of a severe disability.
We were given an appointment for an exam at Toronto Sick Kid’s Hospital—one of the best in the world. I was sent home again to wait and worry and keep the blackness at bay the only way I knew how: by loving my baby ferociously and praying to every God in existence.
The next few weeks were spent in constant negotiations with fate: my heart and mind hourly brokering deals, making promises, swearing vows. I experimented with ways to cope. I remember wondering if I could distance myself; try not to love him so much in order to lessen my own anxiety. I remember being flooded with guilt just a moment later that I even considered trying to withhold my love when he so obviously needed it.
When Graham was two and a half months he was examined by a pediatric neurosurgeon at Sick Kids Hospital. In less than ten minutes the doctor delivered his verdict: Graham had a funny-shaped head.
It’ll probably get better, he added casually, but if not he’s got great hair.
And just like that someone confirmed what my heart had been telling me all along—that my son was perfect.
I do not pretend to begin to know what it is like for other mothers who are denied the good news that their very soul longs to hear. I have only dipped a tiny toe in the swirling waters where daily, parents of special needs children must battle upstream.
But I like to think my experience has left me just a little bit more empathetic. And I like to believe it has left me just a little bit more grateful.
If that’s possible.