My daughter is two weeks away from finishing a very successful freshman year at university. This last few weeks is breaking her heart, however, because she knows this is the end of her time there. She’s made the decision to move with her dad and me to Portland at the end of the summer.
I just finished talking to another OI mom who’s been getting flack from other OI moms she knows about the course of treatment she’s chosen for her child.
Talking to her, I was reminded of the emblem of many OI families, the snowflake, how it symbolizes the exquisite differences in each of our children. Every person with OI is said to have their own genetic mosaic, so that the DNA of my type III OI daughter will not match the DNA of another person with type III OI, even though their types are the same. When my daughter was very young, I eagerly sought–and failed to find–other people with OI who were exactly like my daughter, so I would know what to expect. Of course I didn’t find any. Because every person with OI has a different genetic makeup (even when it comes to the OI gene), it makes sense that their physical experience will differ.
My daughter’s home for spring break. We’re getting out of the house as much as possible, but with the brisk wind and cold temps, this may be a “break” but not really much of a “spring” for her. At least she doesn’t have 8 a.m. classes or professors glaring at her disapprovingly.
One of our favorite activities is to go to Target. Sometimes we have a purpose, sometimes we don’t. It’s therapeutic for me to wander through the clearance racks. We don’t usually buy anything, we just look. I can’t explain it, but my daughter enjoys this too, so this is what we do. This and Biggbys coffee.
A few of years ago, my daughter spent the night at her best friend’s house. It was a typical high school sleepover–very little sleep, lots of junk food and goofing around. The purpose of the sleepover was a Glee marathon, which my daughter proclaimed she would tolerate, but not enjoy. Glee was only a year old at the time, but she already knew it wasn’t for her. All those shiny people, and she’d heard it was all about being gay, and it just didn’t interest her.
I’ve avoided sharing my daughter’s name on this blog. Anyone truly interested could have discovered the name with little trouble, but out of deference to my daughter’s privacy, I never divulged it. But her name has come up (outside of references to her) in the last couple of days, so it’s time for the big reveal.
I have a first-aid basket overflowing with items beyond typical first aid. Alongside the bandaids and gauze pads and scissors are stowed skin gel for scars, leftover tubes of topical numbing cream (Emla), some keen plastic tape from the hospital that will stick to *anything* and never hurt when it’s pulled off, and ace bandages.
Lots and lots of ace bandages.
So many ace bandages I can’t even begin to count them. I find ace bandages everywhere–in every bathroom drawer, kitchen drawers, unused backpacks, winter coat pockets, the glove box in the car, kicked into corners of the laundry room…they’re everywhere. In another box, I have splinting supplies, rolls of plaster-embedded gauze to use for creating hard splints. We used to use these regularly in combination with ace bandages, our best method of immobilizing a fracture.
I had my son two weeks past my 21st birthday. Having him brought me abruptly into adulthood, forcing me to be responsible for someone other than myself at a time when all of my peers were reveling in the freedom to eat Count Chocula for every meal.
When my son left for college four years ago, I grieved the loss of my companion, my champion, one of the people who knows me best in the world. In truth, I haven’t lost him; as predicted, our relationship didn’t die. It just changed.
A couple of weeks ago, my daughter was all set to go to university in the Big City. She’d made the decision, we’d met with the appropriate Official People, toured a dorm/cafeteria/classroom, discussed Everything Under the Sun, filled out all the paperwork, and made her Officially Official. She even bought herself a Big City sweatshirt.
The doctor’s office was located in a run-down strip mall, potholes and shifted pavement interrupting the parking lot. We parked in the handicapped spot, located conveniently farthest from the door, and navigated past the dumpster up the ramp comprised of 3″ vertical gaps between cement slabs. A sign above the door hung crooked and broken.
My daughter and I had come for an appointment set for her by the Illinois Department of Human Services, Division of Rehabilitation Services. This appointment was an effort by the state to “gather more information” about my daughter’s “alleged” disability. The signed document from my daughter’s lifelong orthopedic doctor, her complete medical history and our statements (signed under penalty of perjury) weren’t enough evidence: they needed a doctor with absolutely no knowledge of my daughter or her disorder to make an assessment of how disabled my daughter truly is.
in kindergarten
When my daughter was very, very small, we used what we called a “stroller” to get her around. Provided by the local wheelchair vendor, the chair gave her table-height seating, appropriate positioning, and reclined fully, in the event she fractured. It was a great chair for her needs at the time, because she was so tiny, so delicate that there was no way she could push a wheelchair herself. Her arms and hands were so fragile and weak she couldn’t hold a pencil for very long.
