As a child with Crohn’s disease, I found that I got a little smothered when I wasn’t feeling good. It was actually more uncomfortable feeling smothered than it was being sick. And parents will do that sometimes. So it’s something that parents need to keep in mind. There needs to be a balance; they need to allow their kids to have independence, as well as be there for them.
Red Sox T-Shirt
When I was about to go in for my surgery, my family was so supportive of me the whole time. I couldn’t really sleep a lot so my mom would stay up with me and read me my favorite stories from when I was little. I’m a really big Red Sox fan and my dad went to a game once and brought me back a t shirt. I still have the t shirt and I still wear it all the time. My brother would just come and talk to me normally even though I was in all that pain. They would have little celebrations for me; like one time they had an early birthday party for me. They went out and bought all this stuff that would make me feel better at that point, like more comfortable clothing that I could wear and things like that. So having my family to support me was pretty much what got me through it.
Hospital Buddy
My dad, brother, and sister are extremely supportive, but none of them come close to my mom. She’s constantly optimistic, telling me to think positively and mentally fight my illness. She never lets me feel sorry for myself and pushes me to have as normal a life as I can and not let my illness stop me from doing the things I love. She’s my hospital buddy, and not only drives me to Boston time and time again, but takes her little journal along with her where she writes my entire medical history, which the doctors find very helpful. We’ve been to the hospital so many times together that we have this tradition of going to Au Bon Pain after appointments. I always get the same thing: a croissant sandwich with mayonnaise, country ham, and bacon, a nectar fizz, and a chocolate croissant for dessert.
How Far I’d Come
I did have to drink the Boost and the Carnation Instant Breakfast drinks to get more nutrition than I was getting from food. It was really nasty and awful to drink them. But at the same time having my parents there encouraging me and telling me that if I did these then I’d probably get better and that I’ve come so far already was really helpful. Just realizing that I had come that far and that if I just kept working harder, I would probably get even better would push me to work as hard as I could and just concentrate on what I had to do.