Two weeks ago, my daughter Maggie was diagnosed with Crohn’s disease. Maggie is only 6 years old. Before 2 weeks ago, Crohn’s was that disease that I heard about on television or something a friend of a friend has. Since getting the news, I have spent a lot of time on the internet looking up Crohn’s, side effects, complications, diets, and anything else that came to mind. Amazingly, I am having difficulty finding anything about the extremely young.
Let me go back to the beginning. This all started Thanksgiving Day 2010. Maggie started vomiting around noon. It went on for 20 hours. The next day, I took her to Dr. C. They did a strep test that came back negative. The doctor gave her a shot of phenergan. She slept for an hour; she woke up feeling better. That one took her 2 days to recover from. A week later it happened again. It became a routine over the next couple weeks. Sick. Strep test. Phenergan shot. Sleep. Recover. Repeat. In short, she had 5 rounds in six weeks. Dr. C. sent us to Vanderbilt Children’s Hospital and Dr. A.
Over the last 8 months, Maggie has had an upper GI, head CT, 2 gastroscopies, a colonoscopy, and just last week an abdominal CT with oral and IV contrast. Additionally, she has had a series of urine, stool, and more blood tests than either one of us cares to think about.
So here we go. I have no idea how to make this okay for her but I’m going to try. On nights like tonight, when she is hurting so badly, I just hold her on my lap and tell her that I love her. I don’t want platitudes or reassurances. I’m scared and I just want someone to listen.
Always been here, and that won't change. This sucks. There is no other way around that fact. It sucks and you have to deal with it. Luckily, you have the strongest daughter on the planet, and she has an equally strong mother. She will live a beautiful life, and will have her mother to thank for a lot of it.
ReplyDelete... that and a few visits from Uncle John...