That’s because I have a disability. I have a genetic condition, Ehlers-Danlos syndrome, that affects connective tissues like the skin, joints and blood vessel walls and that causes a set of neurological complications called dysautonomia. Though I can walk for short distances, my ability to be upright is unpredictable. My joints dislocate easily. Regulating my body temperature is particularly difficult; being out in weather above 75 degrees is dangerous.
My range of activity doesn’t fulfill the conventional definition of parenting. This morning, for example, Khalil climbed into bed with me; we played with his stuffed animals and cuddled. After 15 minutes, though, he started to have what we call “big feelings,” his legs kicking as he arch-flopped around the bed. He is a particularly enthusiastic toddler, his body acting out every passing emotion. Once he’s bucking around, my husband, David, has to intervene — I’m too fragile to manage 31 pounds of pure kinetic energy.
I wasn’t there for Khalil’s breakfast, I was so dizzy and fatigued. I didn’t help with lotion or pick out his little clothes. I won’t drop him off or pick him up at preschool today; I can’t drive and often am so sick in the morning that I cannot leave the apartment. It’s because I miss these little moments that I sometimes feel like I’m only pretending to be a mom. My disability limits me in performing the mundane, physical acts of caregiving that I associate with “real” parenting.
Internalized ableism — the insidious belief that I would be a better person if I were not disabled — makes me feel like an impostor as a mother. Many of my friends with disabilities worry that they should not be parents; those who already are fear that their physical capacities negatively affect their children. It’s much easier to ignore my insecurities in professional or academic settings — to fake it until I make it, to go through the motions until I’m more confident in them. But how can I brazen my way through parenting? Talking myself out of my deepest fears is more difficult when I want, so primally, to be able to lift my son.
During the first few blissful months after Khalil became our foster son at 8 days old, I never questioned my identity as a parent. We didn’t have child care, and David worked full time, so my son and I were often alone together. Many new moms resent that period of being stuck indoors, but I loved it: I spend most of my time at home or in bed, and Khalil brought tremendous joy and purpose to those hours. My physical capacities matched his emotional and physical demands beautifully. He was a happy baby, as long as we were touching, and cuddling him for most of every day was an easy need to meet. To this day, whenever he’s away from me, I feel a longing right on my sternum. It aches a little and feels too light.
At 6 months, Khalil required less cuddling and more exploring. David took his full, California-protected, three months of parental leave. We went on family adventures, all three of us, camping on the coast or attending music class. Then, at 9 months old, Khalil started to need a level of activity that I couldn’t provide alone. With David back at work, our son started day care. Back then, I still attended most drop-offs and pickups and helped him get ready for his day.
While my disability remained constant, his energy and physical needs increased. By about 14 months, his mobility surpassed my endurance, and I could no longer be alone with him for longer than a couple of hours. He is strong and fast. I am not powerful enough to protect him from running or clambering into harm’s way. By 18 months, when we adopted him, our time alone was down to one hour, and since 24 months, it has been limited to about half an hour, and very inconsistently. When Khalil sits with me on my wheelchair, for example, he might start arching and flailing, and I can’t keep us both safe: David has to swoop in and lift him from my lap. Requiring constant assistance makes me feel like an impostor mom.
One Mother’s Day, a friend posted a photo of herself at the beach with her kids on Instagram. Her caption was a rhapsody on how beautiful a “mombod” is: how her muscular body is necessary because it allows her to lift her kids, to run to their rescue, to give birth to them. She defined being a good mother as a list of capacities that I simply don’t have.
Fortunately, love isn’t a collection of capacities, of practical contributions. My love isn’t diminished by my ability to carry my son up the stairs, just as it isn’t diminished by the fact that I didn’t carry him inside my uterus. At some point in the coming years, Khalil will probably become easier to reason with verbally. He’ll need to move less and want to talk more. I like to imagine that, soon, he will find comfort in the fact that I’m so often around, steady and patient, ready to listen. Years of restricted movement have trained me to attend, to slow down, to savor. Parenting is a series of phases; as we both grow and change, there will be new intersections between the needs of his body and the needs of mine.
Recently, David took Khalil to the cardiologist’s office. It was a warm day, and my body couldn’t withstand even the trip from the apartment to the car. David called from the doctor’s so that I could listen in on the appointment, but Khalil only wanted me to hear about what he saw on the mural on the wall. A big shark! Another crocodile! A tiger! The doctor started explaining Khalil’s benign arrhythmia, but it was hard to hear over Khalil’s repeated “Mama! Mama! Mama!” He heard my voice over the speakerphone, and instead of being scared of the EKG or new doctor, he felt connected and understood. He knew that I was there for him, even if my body wasn’t. He has no doubt that I am his mom.
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