Stein’s article in The Atlantic gives readers a peek into home life with a child with significant medical needs. I commented on one of the many issues she addresses in her revealing story — Home is a Medicine Unto Itself. Here’s my reply.
We live in a house in California. We have a lot of storage space and a two car garage. No matter how much we added to our once small cottage, my daughter’s medical equipment and supplies seemed to fill all the available space. And yes, in spite of two health insurance plans (employer sponsored and Medicaid), we paid for a lot out of pocket. As she grew and her ailments multiplied, every room said, ”A person with a disability lives here.” It could be an exercise ball, too large to fit in a closet, a suction device that was always out for immediate use, or her wheelchairs (a good one, an old one for back-up when the good one needed repairs, and a power chair that she was learning to use).
When we bought a van with a lift, it took up one and half spaces in our garage.
When she left the house, she carried her feeding pump and formula, her computer with speech generating software, and a backpack fully loaded with bulky medical supplies and medications to last at least three days in case of an earthquake. When she was in high school, the school nurse insisted she carry a portable oxygen tank in case of seizures. My daughter’s physicians explained to the nurse that the oxygen wasn’t necessary, but the nurse insisted. She would carry the oxygen or not attend school. She was like the snail in the children’s book by Leonni who carried his house on his back. The heavy load added to the complexity of finding and retaining appropriate aides who didn’t sign-up to be Sherpas. Maybe it would have helped to have a relationship with a local nursing school.
My daughter died last year. We gave all of her medical equipment and supplies, books, and clothes to people in need. Closets are empty. If I wanted to live in New York, I’d offer a trade. Thank you for your story.