Yesterday Billy noticed me fixing my morning coffee and asked “so it’s a double coffee day?” as I dropped two frozen espresso shots into the cup. And then lectured me on how coffee is a “want” and not a “need” (they just studied wants and needs in social studies, we need water, air, food, etc.). We had a fun little exchange on how my coffee is most definitely a need (with milk and sugar).
Little does he know that watching him in pain like he is in right now with his left arm, I’d like to make it a double something a bit stronger. He’s been complaining over the past few weeks of pain in his left arm. We’ve done x-rays and just see the bone disease right where it hurts, but no fractures. It’s gone from a steady 2 out of 10 to a 5.5 or 6. You can see the pain on his face now.
I called over to the infusion clinic and could get him in next week for some off-label medicine, but he has school testing all week which would be a nightmare to reschedule (he’s such a natural rule follower he freaked at the thought of missing the testing). And then the only dates available for the next week include “field day” at his school. I’m holding the field day appointment just in case he changes his mind and finds the one other day insufficient for the pain. And then penciled him in for two more days in May.
I suppose he abuses his arms a lot for a little kid – using them to push his manual chair and walker. The pain seems quite similar to the pain he feels in his hips on a regular basis.
When he hurts like this it’s hard to look anyone who knows us well straight in the eye, because there is no fake smiling or fake chatting through something like this. Even his teachers get teary when he needs their help to wheel through the halls right now since his arm hurts so badly.
It gets me thinking about the before life and now life. When we figured out his disease in 2006, I couldn’t physically return to any of the places we went to before, because I hated all the sad looks and questions (e.g. old speech therapy place, old YMCA place, etc.). It’s easier when what people know and expect is what we are now, usually. But as he gets worse even the now places get emotional. It’s nice that people care, but really who wants to cry over coffee and toast at the local coffee shop when friends ask “how’s Billy doing?” There is no graceful response – (a) lie, he is doing okay or (b) ask, would you like to make a donation to the research fund I am setting up to push better understanding and treatments for pain associated with fibrous dysplasia?
I hope that the infusion meds will make a difference and return his face to its usual non-pained sweetness. Until then I guess I’m hiding out with my frozen espresso shots (and avoiding calls from my sister complaining that my niece is not consistently a genius and emails from my friend with photos attached documenting a recent cosmetic procedure, you can’t make this stuff up, I’m telling you).
:: Catherine C.

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