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Wednesday, August 3, 2011

Happy Anniversary ~part 3~

The nurses came daily and as the shots pumped ACTH into Teale's tiny body, one issue was solved. Her appetite was so huge, Teale finally started eating baby foods regularly. Her iron level in her blood rose and she was no longer anemic. The problem was, her appetite became insatiable and she developed a love for mashed potatoes. Not a healthy choice, but it was cheaper than baby food, easy and the only thing she would eat. She became demanding, turning away all other foods. She still didn't eat many textures, Teale was very sensory defensive from the start. Her sweet little body and face chunked up, the steroid was working on the infantile spasms, but the side effects were just awful. Teale was irritable constantly, never satisfied or comfortable, she hardly slept at all. She had been a fairly needy baby before the shots and oral medicine, but now she was really tough. Her therapists who saw her go from one baby to the next in a matter of weeks were deeply concerned. They worried about Mark and I, as Teale's demands were so incredibly wearing. The team suggested a visit to the developmental pediatrician, with them by our side to help support us. The appointment was scheduled and two of Teale's therapists came with me. The doctor had hardly walked in the room when he made the decision that Teale needed valium to help her. He was empathetic with barely a word from me, I was shot and he knew it. This was an amazing experience for me, a doctor showing me care and his acknowledging our road has been tough. The lack of sleep had made me fragile, I had been trying to keep up with Teale's demands of nursing constantly for comfort. I was her safety, but I was helpless in my ability to take her discomfort away. It was hard on me, Teale's future was so questionable, the infantile spasms were so mysterious. I know I waffled much in my relationship with God at that time, why Teale, why one more thing? I believe we continued the oral seizure medicine and the ACTH shots until sometime in late November. The valium had helped taken Teale's edge off, but she was still acting starved and needy 24/7. In her Christmas picture that year she had a huge face, Beau thought it was cute, I saw it as a constant reminder of all her intense issues. Just looking at her "blown up face" could bring me to tears. Those months were incredible, some of the worst in memory for Mark. I think I was just so caught up in Teale's needs, I have mostly forgotten the details. The infantile spasms were rechecked and they had stopped, giving us our baby back as we weaned her from the medicine. The threat of the seizures returning and of many other future problems didn't make this a time of complete celebration. But we had gotten through it and our hopes were high. She shed the weight and now her worst irritable times seemed easy. Funny how that fable "It Could Always Be Worse" weaves it's way into our life. I think I have learned that lesson many times over now. Just when I think I have hit "the worst" something else comes along. When people say "God only gives you what you can handle" I have wanted to scream, I just don't get that saying. What exactly does that mean, He trust me with lots of challenges and I should be proud of that? The other one that makes me crazy "God knew what he was doing giving Teale to Mark and you." Somehow I don't totally believe that is true. I guess in the long run I question God purposely handing people hardships. I think we got Teale because she was meant to be with us, but all the stuff that she has gone through, all the stuff we have gone through? I guess if I thought God was doing this to us, I would be angry. As I live this experience, trying to do what is right for my daughter and my family, I put a lot of trust in God helping me through it. I don't believe He is dumping it on me. So as Mark and I are about to celebrate our twenty second Wedding Anniversary, I remember our tenth with mixed emotions, knowing we have come far, but still worrying about what our future holds...

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