Frame 3

Personal care matters tell the tale.

She sat up most of the day and felt good, except when she laughed. That elicited a wince, and required that she lie down. Attempting a shower, we saw exactly what positions caused the most pain, and realized that she will need assistance with bathing and toileting for at least a few days.

Today we will decide whether she stays here or goes home with me. She wants to stay here, but I doubt she will be able to hold her pee until her ribs feel better. That could be days.


She’s sleeping now, after staying up late practicing Portuguese with her Brazilian friend. With all her interruptions during the day, I’m not surprised she stays up late to study. If I were in this environment as a student, I would never have finished my degree. Guess that’s the benefit of being an introvert.

After this visit, I will worry no more about whether she’s finding her way in the world socially. This is the second university where she’s developed her “group”, found the motley assembly of people to study and party and puzzle out life with. I used to worry about her being isolated and alone as an adult, but after this visit, I no longer worry about that. She thrives in social settings, my butterfly, my extrovert.

But this fracture emphasizes her need to find ad hoc assistance. I’ve always said that OI is a contingency disorder. Most of the time, she functions wholly independently, but when she has a fracture — and that fracture can be arms, legs, or ribs — she is wholly dependent. Yes, there are some things she can do to strengthen her muscles which will protect her bones, and she has done that before with swimming. But that won’t stop fractures from happening altogether. That’s just the nature of the disorder.

Making arrangements for assistance “as needed” is not going to be easy. State agencies, in my experience, have a hard time understanding the variability of this disorder. This isn’t a tidy situation. She has to be prepared for two methods of getting through her day; “healthy” and fractured. And “fractured” means she needs a trained one-on-one-care professional who can come in and provide assistance for a few days. It can’t always be Mom. That’s not a life she wants, and that’s certainly not a life I want.

In spite of the pain, I’m glad she has a fracture right now, when she has the meeting with the state agency. They’ve seen her healthy, and now they’ll see the level of assistance she needs just to get out the door. Maybe they will understand once they see her.

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