My Thanks

I'm thankful I feel almost 100% normal today for the first time since Monday. I'm thankful for a lot of things, but this year, I find myself coming back to Booie's recovery most of all.

There were times I didn't think I'd have my little girl with me this Thanksgiving Day, much less have her be 100% normal today too. When your five-year-old daughter is screaming that she wants to die because she hurts so badly, you find yourself wondering if her wish will come true. What seemed like an endless time in the hospital full of serious tests like bone scans, spinal taps and MRIs of the spine and brain made me wonder what kind of life lay ahead for myself, my family and most importantly, my Booie. She came home unable to walk or even sit. She couldn't go to the bathroom but refused to wear a diaper, so I found myself playing nurse with bedpans along with the many medicines I had to force her to take.

Even in the hospital when none of the nurses or doctors could touch her or even look at her, I had to summon up the strength to straddle my daughter and shoot medicine in her mouth so it didn't have to go in the IV and make it blow again. I had to hold my baby down along with a man from the helicopter crew, so they could take her first spinal tap. I sat with her night after night, getting less sleep than even she did, so I could watch over her and call nurses for more morphine and heat packs. I talked to doctor after doctor, assisted in tests when no one else could get her to do anything, made sure each new person we encountered knew she would not under any circumstances lay on her back, even under heavy sedation. No, she had to be anesthetized. No, I've done this already. No, you can't even try one more time.

I could tell all of them no, but no didn't work when the doctors came in and told me they didn't know what was wrong. Each test would be done, and each time they were the ones telling me no, telling me they didn't know. And each no was a relief, because it meant there was no cancer or no meningitis or no rheumatic fever, but each no was also agony because it meant there was still something wrong, but it was a mystery. It was a mystery pushing the morphine doses higher and making my little girl less and less herself. There were teams and teams of doctors on her case, and no one knew what was wrong. Our regular pediatric group visited every day, consulted one another at their office, stayed up late nights doing research in books and even on the Internet. Rheumatology, Nephrology, Neurology and the regular hospital pediatric teams all did the same things. And she was becoming one of those cases that excite doctors in a morbid way, to the point where my daughter became a case study for the Neurology team.