This is not how it ends.

Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

My daughter was diagnosed with IBD in early 2008. The following is just a snapshot of life then; a story about a high-schooler and her parent experiencing normal life, though ours was further complicated by a chronic illness. Our story might not make anyone's journey any easier, but I hope it will help everyone have a deep-breath moment and think (to quote a favorite song) - this is not how it ends. I hope other parents can relate to these experiences and know they're not alone.

Fall 2008: Six months post-diagnosis, I found out we knew someone else with IBD, right in her age group and right at our school. I couldn't wait to tell her when I picked her up at school, but she took the good news with silence. And then she said she knew! She knew? Apparently, he was in one of her classes and mentioned his IBD out loud in class, but she didn't want to "bother him." I eventually (well, maybe very eventually) let the subject drop as I often would during those years. I didn't want to upset her further. Several years later, after high school, the two former classmates connected and shared their experiences. I was very happy, but thought of the knowledge and support we could have gained earlier if not for my child's silence.

Note: Whenever I expressed that sentiment (of not upsetting her) out loud to her, it would backfire and she would get extremely upset, saying I was treating her differently now that she had a disease. I couldn't totally deny it, as I knew stress could exacerbate her disease, so I did watch myself. Thus, guilty as charged!

Late Winter 2009: She called me from a school bathroom, doubled over in pain. She sounded exhausted and scared, and sheepishly admitted she had been symptomatic for several weeks. She never told me - actually, she outright covered it up, as I asked her often about how she felt with very pointed and specific questions. Now, she sounded desperate. She wanted the blood to stop, as she had a math test the next period and had an A for winter trimester at that point. I gave her a few (extremely reasonable) options, but she rejected them all. She insisted she would get to the test somehow and not say anything to anyone. She hung up on me and was even more upset when I saw her later. Medically, she felt horrible. Academically, she had blown her A. Emotionally, she didn't want to deal with anything, including me questioning the cover-up, its wisdom (or lack thereof), etc.

Spring 2011: While completing her senior year internship, a requirement for high school graduation, a new flare. Her internship hours were set, but we needed to schedule a colonoscopy. She did not want to request an accommodation and miss any internship hours. I wasn't allowed to talk to the school either. Thus, the colonoscopy had to be the week after the internship ended - just a few days before graduation. Given her pediatric gastroenterologist's schedule, she did need to agree to have it the day of her internship report. She begrudgingly agreed to do her talk one day early, though two days early (when no other presentations were scheduled) would have been better. When I asked why, it was clear she chose the easy way to avoid discussing details with the school. This meant she had to present and come immediately out to me in the parking lot to start drinking the prep (a few hours late). The colonoscopy occurred as planned, but two nights later, she told me she couldn't even sit still for five minutes without pain – and had been in pain since the procedure! The graduation ceremony was the next morning. After talking to the pediatric gastroenterologist on call, he assured us it was just a difficult colonoscopy with lots of maneuvering; the pain was all muscular-skeletal. Graduation went smoothly, but her choices made that month so much more difficult.

Early Summer 2011: The colonoscopy showed nearly the best results we could have hoped for and her medication plan was fine, with one addition, enemas. I was so relieved. She was so upset. Back in the spring, her college had been wonderful when learning of her IBD and even offered a private room right in the freshman dorm. She had refused; she would not alter her freshman experience based on her disease - even now, with the enemas changing her routine up. I suggested she be open with her roommate, but she presented the same freshman experience argument. With downing thirteen pills a day and storing large boxes of enemas in a tiny dorm room, she was going to need to explain something to her roommate, but she just rolled her eyes at the thought. Thus, her nightly bedtime routine at home became a "dress rehearsal" of a strange technique - doing an enema in the bathroom and holding her butt together while shuffling back into bed (note: not an exact enactment of what was to come, as she couldn't practice ladder climbing - yes, she was going to elevate her dorm bed and yes, bed height was also part of the freshman experience that could not be altered. I had given up debating this freshman experience thing by this point!). Ultimately, I am not sure if she ever mentioned her IBD to her freshman roommate. My mom-sense did lead me to casually mention it to her roommate's mom, though.

Winter 2012: On the phone from college, she told me she wanted to volunteer as a counselor at Camp Oasis. I was shocked. I was not against the idea; quite the contrary, just stunned. I had begged her to attend as a camper for three years. Not once could I finish the sentence before she shut me down. I could go on about similar refusals regarding IBD learning conferences, IBD peer support events, etc. Although she did happily participate in CCFA walks and other fundraisers, I was still amazed at her insistence on volunteering at Oasis! She applied and was accepted as a counselor. She has been loving it every summer since and admits she wished she had experienced it as a camper. (I can't help but think those four words kids hate to hear from their parents - I. Told. You. So.)

My daughter asked me to write this for all the parents and their kids facing the same types of challenges we did. It's not easy - but where you are now won't be where you end up - just like Sami and me.

With much Love to and Admiration for ICN, C3N, and Jennie and Sami, Always,

Sami’s Mom