Blowing out the candles on a birthday cake has changed for me. Make a wish. Hmm.
There should be only one wish I could consider making.
You've seen that internet meme -- people with cancer have only one wish: a cure. It's hard to know what to wish for with Menkes. Of course a cure. But a cure helps the next generation of babies that get this disease. A cure discovered today or tomorrow doesn't really help my kid. How could it? At best it could halt any further degeneration. But it won't reverse any damage so far. I love Lucas the way he is. If some miracle allowed him to start developing more normally at this point with so much harm already done, do we want that? This is deep in the realm of fantasy, but if he could start making gains at age six, would he walk and talk? Would his life become any easier or just a different kind of difficult?
I suppose a more realistic expectation, if a cure came today, is that his general health might improve as he processed more copper, even if his mental and muscular abilities didn't see much gain. This might allow him to more safely endure any necessary surgical procedures. But he's actually proved pretty resilient on that front so far.
So yes I wish for a cure. But it's not precisely what I wish for Lucas.
Even in the sense of Make A Wish as in The Make A Wish Foundation, it's hard to know what to wish for. Lucas would certainly qualify for a wish. But he can't communicate his own wishes and it doesn't seem quite right to just pick one for him. What he loves most is to be home or some other very familiar place surrounded by family and close friends. We do that a lot. He laughs and smiles. It's as good as it gets. If I want to give Lucas the happiest time he's ever had I only have to roll on the floor with him. He doesn't dislike theme parks or stage plays or movies but they aren't as interesting to him as a crowd of loved ones fawning over him.
Dancing might come close. Weird for a wheelchair kid right? But when I wheel him around in tight fast circles and spin the chair, that's some grade A fun for him. We should do more of it. It's tougher in winter.
We're pretty sure he loves toy duckies and the colors bright yellow and orange. Some puppets crack him up, recently a Doctor and Nurse puppet that his school nurse Barb gave him. But in terms of the organization Make A Wish, I can't even phrase it for them...We'd like Lucas to go somewhere with lots of plush yellow and orange duckie puppets, with several friends and family. Maybe that's a good wish for him. But I bet we could do it in the backyard and have him enjoy it even more.
So this month I wasted another birthday candle wish with one more "I don't know...um, let Lukey be happy." I guess I wasn't supposed to tell my wish, but it's come true so far.