Frequently, I am asked how Sadie is doing. The answer is complicated. Not very long ago, I had a healthy child. Each day for the rest of her life, caution will be needed to keep her as safe as possible. She runs. She plays. She smiles. To see her, one would think she is doing great. Twice in the past three weeks, Primarys has called us to let us know of potential (and very serious) problems that she may face. The first time they had us bring her back down based on some problems with her blood work. We then had a crash course in how they would save Sadie if her condition became more serious. (She was jumping up and down, giggling and running around while they discussed how sick she was/should be based on her blood work.) A couple of days ago the head of the liver transplant department called us to alert us to a complication that has arisen with one of the other persons who received an organ from Sadie's donor. We were told not to worry, but that they will need to monitor her very closely for the same problem.
So when I am asked how she is doing, I feel torn inside. To see her, one sees a child who can light up a room with her smile. But inside, how is she doing? Each time we've had to take her back in to the hospital for unexpected things, I'd thought that she was doing fine. We're still trying to get used to knowing that her life will be complicated. As I hold her on my lap during her blood draws, she sobs. It's hard to see my kids ache inside.
We try to be positive. Sometimes that works better than others. Sadie struggles, her sisters struggle, David and I struggle, but Little Trevin, he doesn't complain. He's our little trooper. We decided to let Sadie play T-ball this year. (This is a first for our family.) There are so many things she can't do, we wanted her to be able to do something-- anything-- to feel like a normal kid. The first game, she got thirsty. After rounding the bases to third, she wanted a drink. She walked off the field and came to find us. We had to explain that it was very important to touch home plate before leaving the game. She hurried back before getting out. All in all, she's having fun. She gets worn out quicker than the other children and will come home exhausted. She and her sisters have started a business selling drinks at the games. They get to keep the money they earn. Sadie has a plan. She wants to buy a microphone, and then watch out, a new rock star will be born... And let me tell you, she has some pretty sweet dance moves to go along with her singing.