mardi gras ups and downs

The doctors have been tinkering with Robb's medications, and as a result of this, he has a bad night on Monday. They have taken him off the long-acting oxycontin, and increased his dosage of some other medications. This, unfortunately, seems to have cause (or at least coincided with) spasms of his internal organs, which were very painful and distressing. Robb really didn't get much sleep on Monday night, and then had a painful episode on Tuesday morning.

A lot of people have commented that they don't know how I'm holding myself together through all of this, and I honestly can answer that I have no idea how I'm managing. I never would have thought that I could have handled this. I've never once felt sorry for myself, but I have been deeply sad, from time to time.

What's the big secret to keeping it all together? Friends? Robb's attitude? The wonderful care he is receiving? His progress? The fact that this could have been so much worse? That all helps.

Hearing Robb so distressed on the phone Tuesday morning was a bit more than I could take, and I spent the better part of Tuesday day feeling very, very sad. NPR's coverage of Mardi Gras in New Orleans had me weeping in the car. I certainly could feel for all those people whose lives were "on hold" and who weren't sure what would be happening next. The piece about the Mardi Gras Indians who did and did not choose to don their costumes this year really touched me. One man was saying how, at this time in his life, he couldn't imagine tapping into his creative side, but that when things finally got settled, he would really do something wonderful.

Yeah, I was sitting in the hospital parking lot, with tears rolling down my face.

But seeing Robb put everything into perspective. He was working on walking and balance when I came in. In the course of this one therapy session, his stride became more normal, and that kind of amazing progress makes me so joyful, that I realize we have so much to celebrate.