One morning Ethan, Dan and I went to a diner for breakfast. Dan and I had argued earlier and were talking stiffly, trying our best to appear cordial for Ethan’s benefit. When our menus arrived, I began reading one aloud.
“Are you going to recite the whole thing?” Ethan asked. He was hungry and moody himself, by then.
“There are none in braille,” I explained, “and Dan needs to know the choices.”
Dan squeezed my hand, but I wasn’t ready to soften to him.
“What?” I snapped. “I’m going to let you starve?”
This is us, learning to be a family. Even in moments of anger, we try to put our emotions aside long enough to take care of what needs to be done. As with all families — though more overtly with us because of our disabilities — this means continuing to take care of one another. Walking home, we were still cross, yet Dan stayed beside me instead of zooming ahead with his guide dog, so he could help me over slick patches of ice.
I once saw a documentary in which women with various disabilities talked about their lives. One, a quadriplegic who operated her electric wheelchair using her chin, held an important job in the mayor’s office of a large city. Her able-bodied husband appeared in the film as well and, at one point, the interviewer asked them how they handled disagreements.
“It’s awful,” she said. “I’ll leave the room dramatically and ten minutes later realize I have to pee.”
Her husband laughed and went on to describe helping her in the bathroom while they weren’t on speaking terms.
The anecdote really struck me, and obviously stayed with me. I saw the film twenty years ago, long before I had a child and knew how it felt to change a diaper or quell the fears of someone who had spent a good part of the day making screaming demands of me. As parents, we shelve a lot of feelings to do the work of caretaking. Likewise, children and those of us with disabilities often have to swallow both anger and pride to accept assistance.
In grouping children and disabled adults together like this, I realize I’m on slippery terrain. Many believe that because people with disabilities need help in certain areas, we’re altogether helpless. It takes finesse to be gracious to those who assist us, while not allowing ourselves to be underestimated or infantilized.
I never experienced this more keenly than when I was a new mother. The first six weeks of Ethan’s life felt like at least as many years. I spent virtually all my time nursing in our glider rocker. There were rare occasions when I slept a full two hours in my bed between feedings, but most often I conked out while sitting upright in the chair.
Through all this, I barely ate. I only have fine motor skills on one side, so I didn’t have the coordination to feed myself with a baby in my arms. I couldn’t walk from the bedroom to the kitchen with him on my breast. If my left “good” hand was underneath him, I couldn’t so much as pick up a glass of water.
If Richard was home, I’d call out to him, and ask him to bring me a drink or something I could eat with one hand. I did not marry a patient man. He’d bring what I requested, but roll his eyes and sigh at the inconvenience.
Without two reliable hands, I didn’t trust myself to bathe Ethan. Instead, I cleaned him with a soapy washcloth on his change table. Richard believed that I was overreacting. But really, I couldn’t tell with my right hand how well I was holding Ethan, and I knew I might not be quick enough should he slip. When I suggested to Richard that he give our son his bath, he decided that what I was doing with the washcloth was just fine. Then Ethan developed diaper rash and my mother offered to wash him in the sink during her weekly visits. I was grateful for the help, especially since Richard wasn’t offering any. Yet at the same time, no one brought out my inner crippled child more than my mom.
At seventy-six, she still bustled with energy. She arrived at our apartment full of purpose. Ready, like Mary Poppins, to take charge of things.
“Babies need to be immersed in water once in a while,” she told me, as she deftly held Ethan under the arm with one hand and sponged his body with the other. “Pass me the towel and I’ll dry him. He’s too slippery for you.”
Though I knew I was perfectly capable of drying him, I handed her the towel without a word. I was too depleted to argue.
Later, while I was breastfeeding, she came over and touched his forehead.
“His skin’s dry,” she commented.
“I know. I’m hoping we can get to the health food store this afternoon and pick up some calendula cream.”
“Who buys lotion in a health food store?”
“It’s really nice cream,” I began, but she walked out of the room. She returned with a bottle of hand lotion.
“I don’t use that on him,” I told her. “There are too many chemicals in it.”
“You’re so fussy.”
Before I could move, she slathered the stuff on his forehead.
Even in my postpartum state, I knew that using the wrong lotion one time wouldn’t do any real harm to a baby. Still, my left arm had been beneath Ethan’s head, leaving me trapped. Surely, my mom was aware of that. I started to cry. With Ethan in my arms, I couldn’t cover my face or wipe at my tears. Exposed like that, I felt I’d proved her right. I was as helpless as my baby.
My mom’s been gone for nearly six years now. I like to think that had she lived longer, she’d have learned to step back more and trust me even when I needed her assistance.
Of course parenting Ethan is easier now that it’s not such a physical job. I actually find myself counting on him these days. He lugs our suitcase onto trains and buses on our weekend trips to Philadelphia to be with Dan. He also helps Dan by doing things like reading aloud from inaccessible websites. Meanwhile, I’m pleased that as a preteen he still turns to me for comfort and guidance. More and more, I notice him opening up to Dan too, and asking his advice.
Because the flow of help and support moves between all of us, Ethan is a much more self-assured kid than I ever was. At the same time, Dan and I are finding the balance between independence and interdependence in very concrete ways. Looking back on experiences like the one we had at the diner, I can even say I like that we’re pressed into little acts of love when we’re upset with each other. It keeps our budding family from forgetting, at least for long, what’s really important.