A Deep Sorrow, A Deeper Joy: Mothering a Child with Special Needs

I will never forget that taxi ride back from the doctor's office. The driver didn't know we had just been told our unborn daughter had something terribly wrong with her brain. I don't recall what the driver was droning on about, but I remember intently staring out the window at the War Museum as we went slowly down Ritzari street. I kept my face turned away from the driver's seat. For some reason, it seemed very important at that moment that he not see me crying.

I managed to keep the sobbing in until we were back inside our apartment. There's a grief that comes with the news that your baby won't be normal. All the plans I had made for her came crashing down, replaced with phrases like "cerebellar malformation" and "low IQ." It felt like someone died.

That night, I stopped making grandiose plans for my daughter's future, but instead began praying fervently for the one thing that seemed most important: that she would be able to smile. 

When Monica was born, there wasn't much to indicate that something was wrong with her brain. She had the telltale spots of alopecia that other children with rhombencephalosynapsis have, but that was all that looked different about her. Mostly, she was tiny and redhaired and beyond adorable.

As Monica grew, though, she began to lag behind other children her age. I tortured myself by continually reading about developmental milestones. She wasn't meeting them when normal babies did. Finally, I stopped scanning the internet for a milestone chart that would make me feel better about her development. She was delayed: there was no denying it. 

It was distressing to see Facebook posts of other children about Monica's age. They were all sitting up, or crawling, or walking, or talking, well before Monica could. I didn't want these parents to stop celebrating their children's progress. But it still hurt when I thought of the developmental delay Monica was fighting. 

The pain, however, is not the end of the story. Yes, it hurts to see my child behind her peers. But oh, the joy—the deep, deep joy when she finally makes progress! When the child who couldn't sit unaided manages to do so for thirty seconds, when the child who struggled to speak finally does, when the child who wouldn't eat solids gets down a full meal—that is a happiness beyond reckoning.

As most mothers of children with special needs are, I am part of a few different Facebook support groups. Whenever parents post a video of their child doing something a developmentally normal child could easily do, we all cheer, and I'm quite sure that more than a few of us cry. Because we know—we know all too well—how much that seemingly insignificant growth means to that mother or father. We know how many hours of therapy, how much frustration, how many tears, went into that one small bit of progress.

When Monica was about seven months old, my husband started goofing around with one of my scarves. For some reason, Monica thought her daddy's antics were hysterical. She laughed a little, then a lot, and then she belly-laughed over and over again like we had never seen her do before. I grabbed a camera and recorded it. After Monica calmed down, I was left choking back tears again. Not the sad, heart-broken tears of that taxi ride from the doctor's office, but tears of joy. I used to pray that my little girl would at least be able to smile. And that day she had not just smiled, she had laughed. In her laughter, our joy overflowed. 

To all the mothers of children with special needs, happy Mother's Day. You have known a deep sorrow. But you also know a deeper joy.