Reporting on What is going on in the World. I'm a Crohn's Advocate and currently a Volunteer for the Crohn's and Colitis Foundation Of America San Diego and Desert Area Chapter.
Thursday, July 16, 2015
A Father and Son Journey with Crohn's
Here is a story about a Father and Son by the name of Russ and Keegan journey with Crohn's. Russ and Laura Lessard hail from Texas. They have two children: Keegan, age 16, and Madeline, age 11. Here is Russ's story as the father of a child with Crohn's disease:
As far as being a father is concerned, life was pretty normal until my son hit the 8th grade. Until then, our only concern with Keegan was getting him to do his homework, clean his room, and brush his teeth -- pretty standard stuff with a growing boy. But I'll never forget the night before I began a new job, in December of 2012, when Keegan started complaining of severe abdominal pain. As that night went on, he was literally writhing in pain. And then came the kicker: blood with bowel movements. This is when my wife and I realized there was something very different going on with our son.
2012 began our journey as parents of a child with Crohn's disease. Keegan went in and out of Texas Children's Hospital, and through batteries of tests and exams. It took months for the final diagnosis to come, and as with many Crohn's patients, it was the only diagnosis left after all other possibilities were excluded. This is when I began to do my own research. Prior to 2012, I had only heard of the disease, but had little to no real understanding of the disease, its symptoms, or its long-term implications. Once I began to realize what the complications were, the pain that would be in my son's future, and the fact that there is no cure, reality hit hard.
No parent wants to hear that their child has an incurable disease. Like any Dad, I had coached my son in sports, had been his Den Leader and Cubmaster, and watched him or participated with him in many father and son activities. I always assumed he would be in good health. Now fear gripped me because I was concerned that he wouldn't be able to live a normal life. Even worse, no parent wants to outlive their child. Since his diagnosis, due to the unpredictability of the disease and the pain that comes and goes, we have had to forego Boy Scout trips because our son might become sick in the middle of an isolated trail with no assistance available. This has caused us concern about other opportunities, such as a Boy Scout trip to Sweden or taking an ocean cruise with the family. Can we ever truly, as a family, get too far from a good hospital? Now that Keegan has turned 16, college comes into the picture in two years. Once again, as a family, we are wondering what options Keegan has because he always needs to be close to medical care.
With all of this said, one thing I have come to peace with as a Dad is that my son is as tough as nails. I wish he cleaned his room more often, and frankly, I've never been able to convince him of the merits of brushing his teeth. Where I admire my son greatly, though, is how he soldiers on in life, in all of his passions. Even though he has missed out on some of the Boy Scout activities he would like to have experienced, he is currently working on his Eagle Scout rank and should have it before he turns 17. He is doing this while also playing baseball at a very competitive level. Keegan idolizes Craig Biggio, the career Houston Astro about to be inducted into the baseball Hall of Fame. Due to the fact that Biggio was Keegan's baseball hero, he has modeled his game after him. Keegan has always sought to wear #7 any time the number was available, and he has always wanted to be the dirtiest player after a game... because no one plays harder or hustles more than Craig Biggio (the dirt proves it). Keegan is currently a sophomore catcher and plays club baseball during the summer.
I'm very proud of my son. He understands that Crohn's disease is a part of his life. He does not want to give into it. Rather, sometimes he just has to "play through pain." You hear NFL guys talk about playing through pain. But for Keegan, that has a special meaning. As his father, I don't live in fear of the disease and its ramifications for my son any longer. I hate that my son has this disease, and I hate seeing him suffer. But my son son has grown with the disease since 2012, and I know he can handle it. What more could a father want? Honestly, when I really think about how well he copes with his life, it brings tears to my eyes. I got a text one day from my son that said, "So this is my life and I have this disease, so be it!" Wow! Courage!
In 2014 I found out that my longtime friend Matt Jackson had become the Take Steps Walk manager for the Houston Chapter of CCFA. Since then, CCFA has introduced me and my son to other patients in the Houston area who suffer from this disease. Keegan had the opportunity to serve as the 2015 "Honored Hero" for his CCFA chapter's Walk. Getting involved with others has been very good for Keegan and I. We are very thankful for CCFA, the team, and all they do for families like ours.