With This Too
I’m still mad. Now I’m mad at food labeling laws for not requiring measurements of potassium and phosphorous on packages. Oh, and I’m mad because the “Foods to Enjoy” sheet lists apple juice right alongside cranberry juice and yet the cran-apple I bought claims it has 15 milligrams of potassium (super) while the apple juice box claims it has 350 milligrams of potassium (definitely not super). Where’s the sense in that?
I’m trying not to be too mad at Mark since clearly the cran-apple-apple debacle is not his fault. And I’m trying not to be too mad at the boys because clearly none of this is their fault either, least of all Austin’s initial dislike of rice milk. But I am tired. I just want his life to be normal. I want us to move those marbles, beat this beast ,and then get on with it. I want fighting cancer to be our one Big Thing, our life’s challenge. And lately I feel like this is just the tip of the iceberg, like we’ve only just begun and there will always always be some major health crisis in Austin’s life and in our lives, like we will always be facing the next big thing.
But — deep breath (and sip of wine) — we’re home now and the boys are asleep side-by-side in Austin’s bed. When I go up, I’ll lift Braedan’s rapidly growing body and deliver him to his own, so neither one’s middle-of-the-night wiggles wake the other. And tomorrow we’ll figure out how to adapt our Sunday breakfast of bacon (Braedan’s favorite) and cheesy eggs (Austin’s favorite) to fit the new diet restrictions. And I’ll search for more recipes to ensure he doesn’t live solely on buttered noodles. And the anger will fade and maybe the hope will grow. We are trying new things, after all, like reiki performed by a neighbor, to improve kidney function. You should see Austin giggling and squirming while those hands float above him, trying to focus all that energy and heal that poor kidney. There are reasons to hope.
So, somehow, as always, we will deal. With this too, we will deal.
Hey, Thalia’s lactose-intolerant and has to drink expensive non-dairy-type milk, so here’s what I’ve found. If Austin learns to like rice milk, I can recommend both Trader Joe’s and, of all places, Whole Foods for bargain-shopping in that department. Both of those places carry store brands of rice milk that Thalia likes quite a bit, and in the case of WF, if you buy a case (12 cartons) of it you get a 10% discount on top of that. Much cheaper than picking up Rice Dream at the “regular” grocery stores. And you can get vanilla and I think even chocolate flavor (although Thalia likes the regular), too, if those are dietary-approved and he likes them.
That’s about the extent of help I can be on this issue. 🙁
I see lots of fruit smoothies in Austin’s future (making sure, of course, you use only the right fruits and juices, and a bit of yogurt) – I know it sucks, big time – but I don’t think it’s always going to be like this, with a major health crisis around every corner. It’s hard to imagine that, when you’re in the middle of it, but you know the mantra … one step at a time… and you’ll get there. Kidneys can heal. Austin can heal.
Barbara