Starting a new life with Crohn's

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.

Late night question

What is family? This is a question that I have been asking myself since I was young. Mostly because my family has always seemed like hyenas, giraffes, and muskrats thrown into a pen together and told to get along. Yet somehow, I still believe that family is important. I am just beginning to wonder if the dictionary definition of family hasn’t confused the issue.

I’ve long believed in reincarnation and that the people who live on this earth have usually lived several lives before this one. In this same vein, I am beginning to believe that families were formed several lifetimes ago as well. Long ago, we lived with our true families. As we have died and been reborn, we have lost those people along the way. So we begin a quest at the start of each new life. We search for this first family. The people who complete our souls and make the world hurt less. We spend our lives desperately hoping to find our soul mates, another idea that has been confused. Why must a soul mate be only the man or woman that you will mate with? I believe that soul mates are members of your first family that you have found in this life. They are men and women. And they do not need to be genetically related to you to be a part of your family.

I don’t know where this new train of thought will lead me but I feel like I may have a new quest. I want to know how Earth’s citizens perceive family.

More to come...