My son has been in remission for three years now. He has also just past the threshold to adulthood. So maybe I shouldn’t care anymore. Maybe I don’t have to worry anymore. I don’t have to make any of the decisions anymore, so maybe it’s time to focus on other things in life. We should all move along with our lives leaving the terrible years we spent finding something that worked for him behind us. Forget the past and move on, right?
Well, I just can’t. And there are several reasons for this. First remission is not a cure. Even though he is in remission right now, it is not a cure. He has to stick to his treatment forever. The all the other reasons are the kids in our support group and all over that are being newly diagnosed or have not yet found a treatment that works for them. There is still more to do. These children are suffering on a daily basis. The families are suffering. I see the pain I experienced reflected in the eyes of other parents.
I facilitate a support group for kids, teens and their families. As the contact person for this group I get emails and calls all the time from families that are in bad emotional places. They need someone to talk to – someone who will listen. They don’t want to feel alone anymore. In our group we do have a few kids who are doing very well and are in remission and others that are so sick they cannot go to school or even eat.
I can’t just turn my back on others that still need help. I will still facilitate the support group after my son goes to college next year. I will continue to raise money for research, new treatments, and camp. My voice may be a very small voice in the IBD community, but I will continue to share my thoughts and pass on information from all the amazing people out there working diligently to educate IBD patients and the world about IBD.