6 years ago I became dependent upon a feeding tube. They told us this would be a temporary thing; that I would stop eating food entirely for three weeks, then we would slowly reintroduce food until we could find which foods I could tolerate and which foods were making me ill. They thought the process would take three months at max, but two months in I only had three safe foods and none of them could sustain me nutritionally.
Here we are six years later and if you have read my blog before you would know, the whole idea of temporary is obviously far from the case... In fact, my health is now worse than it was six years ago. But today I do not want to sulk in the sadness of what I thought my life was supposed to be like. Today I want to celebrate what was made possible because of this day six years ago. I was 'lucky' when I had my feeding tube placed because my brother already had a feeding tube so my family was well connected to the online community support groups. Shortly after having my tube placed, I realized there was no online support group specifically for teenagers with feeding tubes. The need was there but no one was stepping up. I decided I couldn't wait for someone else to put forth their time to create a safe space where teens and young adults could realize they aren't the only ones having this experience, a place where they have friends who simply 'get it' and a safe place they can vent about their feelings away from their parents.
Because of this day six years ago the discussions began, that allowed me to create the "Teens with Feeding Tubes" online community. On November 26th, 2012 the group was officially launched. Currently, our community has roughly 350 members, from nearly 20 countries, and has served more than 500 young people in six short years. Unfortunately, in those six years, thirty-seven members of our group have died due to their chronic illness. It's the most heartbreaking part of being in this group. We have chosen to seek out others in situations similar to our own because we know how devastating it is to feel like no one understands what we are going through, but we would rather love them knowing our hearts will break than never knowing them at all. It is a privilege to have known them. It is a privilege to have loved them.
Today I made a post asking members of the online group to finish the statements and the answers blew me away. They reminded me how important the work I do is even on the days when I think I have nothing left to give, even on the days when I wish I never got sick in the first place and even on the days when I think I am not doing enough to make a difference. They remind me that what happened to me six years ago today was not a mistake. I hate the "everything happens for a reason" cliche just as much as the next guy but if I had to endure some hell for a little while to help make someone else's burdens lighter then it is all worth it.
With their permission, I wanted to share some of their responses with you:
"This wonderful group has given me confidence, knowledge, a laugh on a bad day, a virtual hug when another person is taken from this world by different illnesses, inspiration, a distraction from pain or just life in general, a smile when needed most, strength, but most of all hope. This group has given me hope of what I can achieve like going to school, being a normal teen, or go to college. Hope that maybe my health will improve one day but also that if it doesn't imporve that where I am right now is okay and there is hope." - KB
"This group provides me with a support system where I don't need to explain. Everybody just knows... And that is the most priceless gift God has given me." -TM
"This group has provided me with the confidence to bear my tube unapolgetically." - EK
"This group has brought me something I would have never expected: comfort." - ER
