Today is Thanksgiving and there is no turkey in the oven, no pies on the counter, no potatoes in the crisper, awaiting the mashing. Our daughter is on a feed tube again, and if she can’t eat, we won’t either. We will celebrate the feast of thanks later, when she is whole again, and we really have more to be thankful for. In the meantime, we keep trying to count all our blessings, which seem to shrink and swell like stars in the distance. It’s all about atmosphere, isn’t it?
This week we redecorated her room, with a new bed set and lamps that she picked out. My little interior designer has a sharp eye! I painted two walls purple and it came out great. I even managed to stencil a border motif across the top of one wall with no mishaps and pretty impressive results. Sometimes you have to change your outer look to change your outlook. All the bad memories of being sick for a year are out of there, swept out with the old bedspread and outdated switchplates and curtains. Fresh start for a new chapter: We have finally got an appointment week set up at the Mayo Clinic!
We’ll be there for a week of tests, consultations, and (please God!) answers. It’ll be a huge relief to finally go where the baffling is normal, measureable, definable. DEFINABLE. Won’t that be nice, to have a name and a plan for how to move forward.
We’ve learned a lot so far, but mostly about chronic illness and how people get through it. Actually, not sure I know much about that except it takes grit and endurance. Watching our daughter cope has been humbling and…I admit, I have no words for it. She’s the bravest person I know. And second in place for that honor are other mothers whose kids struggle and suffer. I don’t know how they keep a smile going. It’s maddening and exhausting. It’s a life of “you do what you gotta do to keep moving ahead.”
Of course, there are angels at every turn, and ours are the family and friends who have stepped up and pitched in. Strangers who shared their journeys. Our doctors who remain open-minded and determined. Suppliers who get the formula here on time (shout out to Ms. Katie at Walgreens Infusion!), and anyone who’s ever just been kind and understanding.
Happy Thanksgiving, everyone.