During our epic eight year battle with infertility, I would regularly make little bargains with God in a last ditch desperate attempt to make things work. “God? If you give me a baby, I’ll stop swearing at other drivers.” “God? If I get a baby I’ll donate all my Christmas presents to Goodwill.” “God? If it works this time, I promise I’ll give a penny more often than I take a penny.” But the one thing I could never bring myself to bargain over was the potential ability of my child. Never once was I ever even tempted to say, “God? You can give me a baby with whatever challenge you’ve got. I’m willing. I just want a baby.” Never once. I was so terrified at the thought of raising a child with special needs, so sure I did not possess the mix of tenderness and patience and ferociousness it requires, that in all my fruitless bargaining I never even hinted at the offer.
I had known a few of those moms over the years, and I would marvel at their capabilities. I’ve known families that adopted child after child with profound needs, sacrificing wealth and worldly ambition to nurture these little spirits. Their lives seemed holy to me. I was sure that these were a special type of people, gifted with benevolence that the rest of us mortals could never obtain. They seemed like saints.
Despite all my fear and the certainty I had about my own limitations, my own calling into the Sisterhood of the Special Needs came. My son Atticus was born at 28 weeks via emergency C-section, spent 3 months in the Neonatal Intensive Care Unit, and a couple months into his hospital stay the doctors found some brain damage that resulted in Cerebral Palsy.
If my life were a movie, this is the part where I would go out walking through a late night rainstorm, railing at the heavens and cursing the God I believed in. But nothing so cathartically dramatic was available, so my husband Jared and I spent two days catatonic in front of the television, the floor littered with Cheese-It crumbs and Ho-Ho wrappers as we tried to eat our feelings. Once we found the strength to leave the couch and wash the orange dust off our hands, we made our way back to Atti’s bedside to discover that he looked exactly the same as he did before the diagnosis. He was still our teeny little super guy. He was still the hard won little blessing that we had rejoiced over before. He now just carried this label that left everything else up in the air. I was overwhelmed with love for him, but the visions I had of my future were terrifying. I had no idea how I could be the mom a kid like this would need.
Suddenly I found myself in this club of sainted women, only I was a bundle of neurosis with a short temper and serious self-doubt. But since I was still in the club whether I wanted to be or not, it meant that you didn’t have to be some paragon of virtue to belong, which meant that those women I had always admired weren’t some rare breed of perfection but regular old women who were just doing amazing things. And since I was just a regular old woman, maybe I could get there too. This realization gave me the faith I needed to straighten my shoulders, take a deep breath, and get to work.
It’s been nearly two years since he was born, and we’ve spent three or four days a week shuttling between doctors and therapists of every stripe. Every few months Atti accomplishes a new skill on his way towards independence. His progress is slow, so slow that if you didn’t know what you were looking at you’d think he was stagnant, but it is progress nonetheless. We have become cheerleaders for every independent movement, recognizing how many muscles and systems have to coordinate just to eat, and thrilled on a day when he poops. He’s growing into such a motivated and stubborn little kid, I think he’s going to prove the doctors wrong with a smirk on his face.
My journey into motherhood was so very arduous, on the surface it probably seems to bear little resemblance to the majority of mothers out there. I still find myself choosing to say “when Atti was born,” instead of “when I gave birth” because that emergency trip into the operating room and then three months away from my baby seems to have almost nothing to do with the typical experience. But I think my experience carries what is true for every mother, just compressed.
Motherhood seems to carry those moments for everyone – moments when you are convinced you don’t have it in you, moments when you feel at the absolute limit of your capabilities and you’re still being asked for more. It’s easy to put moms like me in our own category of saintly special cases, but it’s just not true. Getting this diagnosis did not come with a special gift basket of great character traits. When my worst fears were realized and I was forced to confront what I was going to do, I didn’t do anything more or less than most mothers do daily, I discovered more in me than I thought was there, and I did what my child needed.
