I've been distracted since Thursday.
When my dad was diagnosed with cancer a few years ago, I remember stumbling through my day wondering how everything could still be so normal. I felt like I should be wearing a scarlet "C" on my shirt so anyone I met could understand what was going on in my life. The day after I found out, I was running with a friend and the normalcy of what we were doing struck me. I finally blurted out, "My dad has cancer."
So I'm doing that right now-with this post-I'm blurting out, "My daughter's spine is disintegrating and she's having surgery in six weeks."
Thursday was our monthly check-up with our orthopedic surgeon. We did not get good news. I had a feeling things weren't going to be good. Salomae hasn't been able to stand up without her brace on. Every morning she calls out, "Mommy, brace on!"
We had x-rays without the brace, then waited for the doctor. He came in and examined Sally. Then he sat down and I've selectively forgotten everything that followed after the statement, "We need to do surgery within the next 4-6 weeks."
I recall asking about our trip to the beach that we planned for the end of September. Like an idiot. I have been working on this trip, planning to start our school year early (tomorrow) and go to the beach late because of Seth's work schedule. I wanted this trip because I'm afraid that next summer my daughter may not be able to walk in the sand or play in the water. Of course, I didn't say that to the doctor. I wouldn't have made it very far into the explanation without breaking down and bawling.
We knew it was coming, but I had put it out of my mind. I hoped that Sally would have more time with us before we throw her life into a tailspin. Last month the curvature of her spine was at a 32 degree angle. On Thursday, her vertebrae were curved at 67 degrees. It's obvious that we can't wait much longer before something has to be done. The more her back curves, the more her spinal cord stretches and the harder it will be to repair later (if she doesn't suffer neurological deficits beforehand). Her doctor wants to put her in a cast this week (Wednesday) that will go from her hips to her neck. His hope is that this will keep her where she is until surgery (October 2).
During surgery, he will take her tenth rib and rotate it around so that it supports her infected vertebrae. The rib will still have a blood supply and will eventually form one bone mass where her weak vertebrae were. Then, he will put hooks along the outside of her back to give her more support and pull her back up some. We are praying that he can perform both surgeries in one day for obvious reasons. Otherwise, she will undergo the strut graft (rib to vertebrae surgery) and recover for a week then the next surgery. There are about a million things that could go wrong. I'm trying not to think about them, but finding myself slipping into this 'what if' place.
I can't help but think about Isaac in California. Watching his story unfold over the past 6 weeks has been terrifying. My kids have been especially touched and pray nightly for his health and recovery. I spoke with Jocelyn (Isaac's mom) on Friday night and she reassured me that Sally is in as good a spot as we could hope. Sally's case isn't as bad as Isaac's. I know of two other cases in the US recently and there were complications in both. Considering the odds, I don't think we can expect Sally to go in for surgery and leave the hospital the next week. I'm not normally a pessimist, but I've got to plan for at least 3 weeks in the hospital with my daughter. I'm thanking God that my Mom and in-laws are retired and willing to come up and help. I'm thankful that this doctor is five minutes from our house. I'm thankful that Sally is here and not in Ethiopia suffering with Pott's disease. But I'm still scared and wondering how things will be in a few months.
Friday morning, Everett came downstairs before anyone else was awake. The first words out of his mouth were, "I should have what Sally has instead of her."
I wasn't sure where he was going with this and asked, "Why do you say that?"
"Because it would be better for me to be sick and in the hospital instead of her. Or you, or Daddy could have it. Just not her."