Goodness

I’ve been struggling. Focusing in on the absolute worst possible outcome in any given scenario. Certain that Austin would fall victim to every “rare but serious” side effect listed for each of his drugs (things that range from permanent hearing loss to irreversible organ failure to the big D). Wondering how many children I’ll be […]

The Worth of Words

I know you all want to help. Every day, many times every day, people lament to me that they feel as if they’re just not doing enough. You beg for tasks needing completion or take my packages to the post office when you weren’t really planning on going (despite saying you were). You go quietly […]

The Plan

OK, so it’s probably a good thing that I’ve been far too exhausted and far far too busy to update for the past forty-eight hours because the plan had changed about forty-eight times since then. Well, no, it’s not the plan that’s changed so much as the details of the plan. But now I think […]

Revisions

Just because you have a plan doesn’t mean things will go according to it …. Don’t worry, nothing major except that instead of sitting around my table enjoying this delicious meal with my family, I am sitting in front of the computer quickly eating before packing my gear for one more night. Today’s surgery to […]

Scratch that

Did I mention that this process is a series of ups and downs, a winding road of highs and lows and of ever-changing emotions and ever-changing plans? We have a new plan, a totally different plan, and Mark and I are very very pleased with it. We are keeping the kidney, going to let it […]

A Plan

This has been quite a few days. Depths of despair punctuated by brief moments of clarity and even hope. I’m mostly just sad. Sad for all Austin has had to endure and all he will have to endure, sad for Braedan for the very same reasons, and sad for us. More than ever in this […]

Never enough

Oh, it’s never fucking enough. Somehow, every time, no matter what we do, no matter what Austin does, it is never fucking enough. We got the pathology reports yesterday and, if you were to rank the four possible outcomes from best to worst, this is the third one down. Which, you know, is sort of […]

Be Careful What You Wish For

No, this isn’t about a bad pathology report or anything. It’s actually sort of funny. (Just wanted to set your minds at ease after reading that title.) You know the whole “pee is pee and pee is good” business and all the stars that include wishes for pee and lots and lots of it? Well, […]

Waiting for a smile

Things are going fairly well. As is so often the case in these situations, it’s the little things that are causing the most pain (literally). Austin was extremely irritated by the NG tube, which thankfully was removed this morning. His next complaint was his foley catheter, which caused my visiting brother pain to even think […]

Mostly Good

OK, I ‘ve just arrived home having only slept two hours last night so this one may be a bit garbled. But, exhausted as I am, I am breathing deeply and feeling pretty good. Most important things first, Austin is out of surgery and in the PICU with his daddy and with his kidney (not […]