At first, in the months and years after my son was born and my typical, older daughter continued to receive invitations to various social gatherings that required my presence, I could pretend my motherhood demographic hadn't changed, and that my tribe had remained more or less the same. I was still the college-educated, mid-thirties mom of two, working part-time and staying home with the kids.
"When is baby brother going to the CEC?" a mom from my old circle asked me at one of these parties, referring to Evan's future entry into the astonishing preschool my daughter had attended. "We're not sure," I said. "It's kind of a wait and see." We both knew there was no room for a blind, medically fragile child at this school. But it was still early, and we could still both pretend, yes?
There's a picture of me holding Baby Evan at yet another party, his oxygen canula draped over my arm, the canister at my feet. In the picture, it is clear I am speaking earnestly to others in the group, on some topic of motherhood perhaps, and if I ignore the obvious differences between Evan and the baby next to him, nursing at her mother's breast, it would almost appear as though I still belong, despite how tenuous the belonging had clearly become. My clothes, my haircut and diaper bag look the same as the other mothers. Only the child begs the obvious differences.
At another party, I remember removing a one gallon ziplock from my diaper bag, one that contained half a dozen medications for Evan's various ailments (the pink syrupy one for his lungs, the clear liquid for his heart, the white tablets I ground up for his brain) and noticing as I drew up the drug and plunged it into his G-tube that the other mothers had somehow -- by accident or grace I was not sure -- pulled their lawns chairs back a bit, into a new circle somewhat further removed.
Earlier at that same party, a parent had asked my daughter for the "magic word" before she would open the gate to the backyard. I had Evan in my arms, that same diaper bag and ever present oxygen canister draped over my shoulder, and my father, to whom I once told this story, insists my response was "Open the f-ing gate, that's the magic word."
I didn't blame other mothers for moving their chairs back at bit, on the day of that birthday party or in the years that followed. In a way, it took me just as long as the other mothers from this previous life to realize I didn't belong.
As my son's disabilities became obviously permanent, I began to discover new mothers, and a new tribe: my friend Holly, whom I met in the hospital and whose daughter is the same age as Evan and has cerebral palsy; my "preemie mom" friends, each of us the mother of a child with a disability due to extreme prematurity; the glorious women and mothers whom I found, or who found me, and gave me a new sense of belonging.
Together, we drew our chairs up to one another in a new circle and asked about therapies, treatments, drugs and doctors. We called each other to tell stories the depths of which most others couldn't comprehend -- the professional who told us our child wouldn't talk, go to her prom, learn to read -- and after we cried and cursed, we found something to laugh about, some black humor that had to do with a seizure medication perhaps, and its ability to cure PMS, or increase libido.
Sometimes I feel lost among other mothers, without this new tribe of warriors by my side. I went out a few weeks ago to hear two terrific writers read and discuss their work -- books about politics and motherhood -- and as I looked around me at the crowd I felt like a spy in the house of normal. Here was my old tribe, the thirty-something moms with babies or toddlers on their hips, struggling with sleep issues or sibling rivalry, and I felt that familiar itch of not belonging. Their issues were not my issues, of this I felt certain. Then I wondered how many of them might go home that night to worry about autism, or ADHD, or dyslexia and learning disabilities. Or how many of them might have an old friend like me, struggling with a new life. If I only allowed myself to list the differences, I would miss everything about the evening and more.
Evan never did go on to that astonishing developmental preschool and it's been a long time since I sat at a backyard birthday party and tried to fit in with the other mothers. But when I walk my son into his kindergarten class each morning there are at least three kids my daughter's age who recognize Evan and say hello. And when I see mothers from those old days, in the supermarket or at the post office, they always ask me how he is.
I have my new tribe, this is true, but on the night I sat among those women whose issues might or might not be the same as mine, I remembered what I've been learning all along: we're all warriors at heart, members of the big collective tribe of motherhood, and we belong to one another.