I keep wanting to have something new and noteworthy to say, but my position in life lately has been steady and sometimes disappointing. I’m writing this part from a therapy office waiting room couch, under a blanket I regularly swipe from the kids’ psychology room. I spend more time here than I do in the car some weeks. The green plaid of the sofa with threads of yellow and red clashes with the navy and ivory modern throw pillows, but somehow it works.
(At least one of my kids would disagree with that summation, but comfort is more of my measurement for good than easy on the eyes will ever be.)
Appointments are our lives as of late. Each week I’m on this couch or my therapist’s couch a collective six or seven times. As for me and my house, we go to therapy.
But there’s physical therapy too, twice a week at home and once a week at school. We saw the orthotist a week and a half ago to cast Zoe’s legs for new braces, not casts that stay on but rather ones taken and then cut off to give the perfect sizing of her foot and ankle so the custom plastic pieces will hold her feet exactly as they should for standing and stepping and sitting.
(This is always the part when someone gets excited because I said stepping. Our culture adores stories of brides’ miraculously walking down aisles, or in Zoe’s case late this April, a flower girl doing so. Zoe is perfectly fine in her pop-star pink — the manufacturer’s color name — motorized chair, without any need to meet an ableist standard of walking for her worth. Yes, Zoe has a gait trainer that can help her walk, but no it isn’t meant to be her primary mobility tool.)
Before the braces can be delivered, though, we have to see the pediatrician to once again confirm that my girl has an unchanging disability and will need custom orthotics her entire life. We know this to be true, and the insurance company knows this to be true, but every time she needs a new pair of braces — which is at least as common as when another child would need a new size in shoes — we have to jump through the hoop of seeing the pediatrician again.
If we’re lucky, we’ll be able to code this visit as two separate ones so we don’t have to come back on a different day for the pediatrician to affirm that she does actually need the new gait trainer requested by her two physical therapists and designed with a durable medical equipment specialist. In attempts to cut back on medical cost wastes, regulations create more.
Earlier today, one of the kids’ cardiology offices called me to touch base about a concern, while another one reached out with an appointment reminder. (Edit: same office, same cardiologist! It’s nice when two kids can overlap with specialists.) I’ve also been in touch with physiatry and hematology (multiple times) and rheumatology and immunology this week, all for the kids.
My health? It’s in the mix but not rising to the top lately. (No worries, I am taking care of me too. I get my monthly IV on Wednesday, and this week I’m scheduling my pre-op appointment for the carpal tunnel in both of my wrists because I’m losing feeling in my fingers.)
These are all the ordinary fears, the everyday mundane parts of life in a medically complex family.
From here, I’m switching to private, because some topics are too tender for open air.
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