Mothers Like Us: Contemplating My Tribe
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.
22 replies on “Mothers Like Us: Contemplating My Tribe”
“I felt like a spy in the house of normal.”
Thank you for writing this column and reminding me, once again, that I do not walk this path alone.
“I looked around me at the crowd I felt like a spy in the house of normal.” God, how I know that feeling!
Your Fellow Tribeswoman
Wow. Have you been reading my mind? Brooklyn is three so we are hitting that age where her not walking, talking, or feeding herself is setting us apart. The first few years we were still “like them” now…..we are moving to the outside circle. This past weekend I spent it with other mom like me and it was as if I could breath again. Thank you. I always enjoy your writing but this one REALLY hit home right now. I am happy to have you in MY circle.
“Spy in the house of normal” hit me too!
You are way too kind to those women who ask for magic words, ignoring your situation, or pull the circle out of your reach. I only have one close friend who also has a disabled kid. Maybe that’s why I hold many grudges.
Thank you again for your candidness about this issue. I find myself (with 2 typical children and one with special needs) trying to play in both worlds. It seems to help me maintain some sanity. No one can ever understand my particular situation because they cannot walk in my shoes, but I try to help my friends that seem to have such a normal life understand where I am in this journey. Sometimes I just wish that the two worlds could meet and function together. I know the reality is different, but I love my friends in both worlds and try to remember that I don’t always know what is going on in their seemingly put together world.
You are an amazing writer. Thank you for taking the time to put into words what most of us are feeling.
Your internet friend,
This was very powerful and much appreciated.
It’s very different having a child with special needs, AND a typical child. If just a special needs child, it is easier to stay more among our fellow special moms (although not entirely.) But with a typical child too, the irony is intense. School plays and sleepovers and pick up games of whatever outside of supermarkets. I kvell over the fun my daughter has, and how easily it all comes to her. And yet the pride and happiness I feel for her, can’t help but intensify the sadness I feel that my son cannot ALSO do these things. I carry each day, this conflict inside my heart.
This was a beautiful post as always. Instead of mommy and baby swim, we go to aquatic therpay with a PT at the Y. Instead of horseback riding for fun, our son has just begun hippotherapy. As they get older I notice I am more comfortable with parents who understand prematurity, who understand special needs. Having never had the “typical” birth/baby experience, I have never felt I belonged to the “typical” tribe. But you’re right, we are a collective tribe despite of our differences.
One of your very best posts.
One of your best posts.
It feels somewhat schizophrenic doesn’t it? Having a child with special needs and a child who is “normal.” I usually pass between both tribes fairly easily, so easily in fact that sometimes when people meet my son for the first they are later shocked to learn that I have a child with special needs. Am I kidding myself? I don’t know.
LOL at the “open the gate” comment. That would totally be me! Beautiful post!
Vicki, I’m coming out of summer hibernation today to highlight this post on BEYOND Understanding. This is what it takes to make people see what they otherwise opt to overlook: stunning, heartfelt writing. And you’re a master. Hugs from Denver, K.
“we’re all warriors at heart, members of the big collective tribe of motherhood, and we belong to one another.” Indeed. Blessed are the peacemakers…in whatever form they take. The mothers who reach out to one another and can see beyond the differences will find richly rewarding relationships.
“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.”
Wonderful. I don’t have a special needs child, but I also felt my life alter immeasurably with the birth of my children, and the recognition that I was now bound to mothers everywhere, including my own, in a way that I had never understood before. The mothers carrying their babies through the floods in New Orleans, the mothers sheltering their children in Afghanistan, and yes, the mothers protecting their children who have needs different from my own. I try to remember this when my other desire, to protect my own child at any cost, impacts some other mother’s child.
Thank you for your powerful words.
Going between both circles can be exhausting. My son has his first big social gathering hosted by his teacher this weekend. I love going to events where he is “normal” or rather in company that is just like him. I’m able to put down my defenses and be myself.
Thanks as always for keeping it real. Its comforting to read your articles and know I’m not alone.
reading this tonight, i am moved beyond words.
holding you and your family in my thoughts and my heart.
Tears and more tears for the grief and beauty in it all. My thoughts are with you Vicki.
Your loss has saddened me. Your Angel Evan was a beautiful boy and a Blessing to your life even with all he endured in his short life.
You should have been welcome at all circles not just those with chldren who had special needs. It breaks my heart to hear you had to go through that and read that you realised you didn’t belong.
God Bless your beautiful family and know that Evan is in a place where no one can treat him as different. In the arms of the Lord we are all equal,all beautiful.
Love from The Blades Family.
God Bless and Thank You for sharing your life and family.
Reading this couldn’t have come at a better time. I am sitting here with tears rolling down my cheeks. Somebody that get’s it! I am about to embark on a journey with my son and I just know I am going to feel like a spy in the house of Normal. You write beautifully. What a gift. Thankyou!