My Real Child

We worry about what a child will become tomorrow, yet we forget that he is someone today. ~Stacia Tauscher

Opening the lid of the washing machine and peering in, I gasp, “OH no!” The beautiful orange, white, and grey organic bedspread decorated with pebbles and fish—the one I spent months lusting over during my pregnancy—lays in the bottom of the washer…pink, not just kind of pink, but bright, cotton candy pink, dyed by the large red item twisted along side it.

This was the perfect bedspread for that perfect crib and that perfect dresser…for the perfect baby I was expecting. That baby, the one I dreamed, would soon be transitioning to the toddler bed that her perfect crib can become. She would be snuggling up under that blanket (still grey and orange and WHITE), laying her head on the matching pillowcase, and drifting off quietly for the night in her matchy-match world.

My real child, Ezzy, still sleeps in the first setting on her perfect crib, because she is just starting to learn to sit up on her own. Like all REAL children, she pees through her diaper in the middle of the night and her sheets rarely match anything at all. Because of her seizures she often cannot sleep in her crib at all. When she does, her low tone prevents her from sleeping with that bedspread, as it would be likely to suffocate her.

When your child is born chronically ill, there is a quick coming to terms with reality that is required of you. But that bedspread, unused as it is—or perhaps precisely because it is unused—represented something important to me, something I didn’t understand until I saw it laying there ruined. But as I started to cry, just a little bit, mind you, I realized that this was a relic of the dream I had for my daughter. It was a treasure I had secreted away. Tucked in the folds of the blanket was something of my hopeful, naive pregnant self.

But I want to suggest here that ALL parenting is a matter of coming to terms with your real child. No one’s child resembles the one that she dreamed. REAL children are more messy, more obstinate, and MUCH more interesting than the ones we dream. Special needs parents are not alone in this realization that our children are different than we expected. I suppose it is a matter of degree and a matter of the speed with which you need to react. But it is this difference between who you think they are and who they really are that makes all our beautifully imperfect children individuals. It is our ability to recognize this gap and respond lovingly with acceptance that makes us parents.

I do not know how much Ezzy will differ from the child I dreamed. I know my real child has more joy and happiness than I had the capacity to dream. I know she has more determination than I could have imagined. The options are still endless…as they are for all children. Embracing your real child means simultaneously recognizing this and accepting that your child isn’t going to be able to be ALL those possibilities. Your real child can only just BE….

Hillary Savoie (aka Esme’s Maman) is the Founder of The Cute Syndrome Foundation and has recently earned a doctorate from the Department of Communication and Media at Rensselaer Polytechnic Institute. In addition to her work on The Cute Syndrome Foundation, Hillary writes a blog about caring for her daughter who is medically fragile, and acts as the Chief Communications Maman at the Feeding Tube Awareness Foundation.