What a great anthem, right? "'Cause baby you're a firework/Come on, show 'em what you're worth". A firework starts off simple enough, looking really just like a long filled tube wrapped in fancy paper. It's only when it's given a spark of flame that it starts to heat up and take off. At the moment it explodes, we see the beauty that was hidden inside. We all have these little "tubes" within us. Little tubes that if given a bit of a spark and some attention can turn into something much bigger. Each one of us is capable of becoming a firework, we just need that starting spark.
"Maybe the reason why all the doors are closed/So you could open one that leads you to the perfect road/Like a lightning bolt, your heart will glow/And when it's time you'll know". My disease has been like the Tazmanian Devil, a tornado of challenges that's kind of wild and unpredictable. I was diagnosed with Crohn's in July 2012. By October we were already talking about losing my colon and they were preparing me for having an ostomy. I was so not ready for this conversation. It seemed I had just been diagnosed, how could my options already be exhausted?! I was 8 years old and really scared. I didn't know what life would be like with an ostomy, and worried about how it would interfere in everything. At first, I didn't even want to talk about it. But then I kept getting sicker and sicker. It got to the point where I started to think about what a positive difference this might make. It might mean the end of spending my life in hospital, it might allow me to become somewhat of a kid again. By December, I had come up with a plan and was finally ready to talk about having a colectomy and living with an ostomy.
My plan was pretty simple: I was going to lose my colon. No doubt about that fact. I thought about how many other kids were going to get diagnosed with IBD, and how my struggles could just as easily be mirrored in their journey. I didn't want anyone else to go through what I went through. So, without discussing it with my mom first, I turned to the doctor and asked:
"If I'm going to lose my colon, that's ok. But it's only ok if I can donate it to research in hopes that we can find a cure. Can you make this happen?" I made a few people have some tears with my wish. But I thought about what a waste it would be just to throw the organ away when it could come to do some good. I think that every door closed in my case because I was meant to do something good. There's a reason why I'm here and I have a purpose in this life: to help others. My heart certainly glows when I think of the impact that I'm going to have for so many other kids who will follow in my footsteps. I hope that I can inspire those that need to have an ostomy, or those that are going through so many treatments to avoid surgery, that life does go on.
For those who are going to be having surgery, or have already had surgery, the experience for me hasn't been nearly as bad as I feared. Yes, I've had some complications like medical tape issues, but I can tell you that my life has improved greatly since having it done. Before surgery, it seemed that I was at the hospital weekly when not admitted because I was having such a bad time with getting the disease under control. I was missing out on a lot of activities with my friends, and missing a lot of school. The ostomy allowed me to get a bit of a life back again. It's gotten to the point where most days I don't even think about the fact that I poop differently. You do adjust. This does become your "normal". Hang in there.