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  • Jessica Slice

THE WASHINGTON POST

Parenting with a disability makes me feel like an ‘impostor’ as a mother


While my son acts out every emotion with his body, my physical range is limited.




I didn’t know that I was about to become a mother: We found out that our son, Khalil, existed 12 hours before I brought him home from the hospital. Sometimes I still don’t feel like one. When people talk about parenting — the long nights pacing with a crying baby, the carpool slog, potty training — I can chime in, but a part of me feels like an impostor.


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. keep reading....

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