Max

Max spent 10 hours in surgery yesterday. He's an almost 12 year friend with the same rare syndrome Pookie has. His scoliosis progressed to over 90 degrees. One of his lungs was being crushed in the curve. The surgery was to straighten his spine as much as possible, and then attach metal rods to hold it that way. His back will never bend again, but he won't have to wear a brace and he'll be able to breathe more comfortably.

Except the surgery didn't go quite as planned. The doctors had trouble monitoring his brain responses during the surgery. They do that to make sure they aren't causing any damage. But his brain is wired a bit differently so sometimes they got readings and sometimes they didn't. The surgeons were just about done with attaching all the hardware when they lost all readings. The only way to check his spine was with an MRI. And metal messes with those things. They had to undo and remove all the metal pieces.

Max is in the ICU now. They're fairly confident no damage was done to his spinal cord. But he's struggling with airway issues from the anesthesia. If all goes well, he goes back in for surgery on Friday to re-install the rods along his spine. Then he can start the long recovery.

I am struggling to process this news. As a friend, as a parent. Max could not have grasped what was going to happen, or what has happened. It's so easy for me to dive into a sad and tragic story about what his experience must be like. But I don't actually know. If he's anything like Pookie, and I know he is, then he's handling this with far more grace than I could muster. Which isn't to say that he isn't confused and in pain. He's not telling himself miserable stories about "this shouldn't have happened" and "why me?" Far more likely, he just wants the pain to stop and to go home.

As a parent, I start to imagine how I would feel in that situation. Honestly, I don't want to go there right now. I dread the day I'm faced with another surgery for Pookie. She's already freaked out the anesthesiology department at one hospital by having her airway collapse three times after one of her surgeries. At the same time, I know that if I am faced with such an event it will be a good thing for her - she will need the surgery. Still, it's hard not to dive into a different set of miserable and painful stories: "what could I have done differently?" or "was this a good idea?" or "what if..."

I'm grateful that there are surgeons in the world experienced in performing all the sorts of surgery one could ever need. I'm grateful that there are technologies for monitoring the health of patients in surgery. I'm grateful that those specialists involved are willing to make a tough call like undoing their work to insure the health of their patient. I'm grateful that Max's surgery on Friday should be much shorter because all of the hard work has been done. I'm grateful for the technology that allows me to stay connected to my friends, that allows me to send as much love and warmth as could possibly be sent over 3,000 miles of wire.

I'm grateful for having such an incredible example of strength and courage in my friend, Max's mom. I'm grateful for having such a wonderful friend. I'm grateful for having had the opportunity to meet her only because our children share an unusual genetic feature. I'm grateful to have Max and Pookie to show me another view of life, another way to be courageous in a most unassuming and humble way. I'm grateful for these atypical children whom people are usually trying to "fix" in ways that don't need to be fixed, who have opened my heart and mind to a truer understanding of perfection.