The worst pain is emotional. Sure I feel sorry for myself sometimes when I think of things I used to do and can't now, but there's ten thousand times the sorrow and frustration in seeing my older kid completely bedridden.
A kid who used to love hiking and kayaking, who reveled in working hard in the garden and in solving challenging math problems, who wrote quirky complex stories packed with clever wordplay, who plans to be a lawyer and who at 15 would like to be running with a pack, dating, hanging out---on a good day, this kid is out of bed for a meal.
I would do anything to free my child from this illness. If I could, I would take twice the disease on myself, to take it off my child. I could happily enough watch and guide from bed while my kids forged ahead, tried their talents, took on their challenges, made their mistakes and created their triumphs, finding their ways in life. If someone gave me one wish, their health is all I would wish for. But I know from the old stories that given a wish I would end up with a sausage stuck to my nose. You know the folktale? He wishes for a sausage, and she says he blew it and in anger wishes the sausage were stuck to his nose. So we do what we can, short of wishes.
We've been to doctors, we've researched on our own, we've tried alternatives, and what it seems to come down to is rest. Complete, profound rest. It's hard to get, when your mind stays active while your body lies still, and your mind travels over all the things you'd like to be doing, ought to be doing, can't be doing.
Most parents can congratulate their kids on great performances on tests, in sports, in arts, can thank their kids for helping out with household chores, can praise them for so many accomplishments big and small. My child is achieving one great and terrible feat of rest, with rarely any tears to betray the cost. I mean it wholeheartedly when I say, "Don't worry about it. I know how much you'd help if you could. You're doing exactly what you should be doing, and you're doing it so well!"
I take what we have, I try to arrange for our basic needs, I try to rest as well, and I try not to wish. There are harder lives. There are mothers who mourn their children. I treasure this child's smiles and jokes and honor the heroic courage that few but me will witness, and I try not to wish for anything but the blessings we have, because it would really be a bitch to deal with all this plus have a sausage stuck to my nose.