It’s a small world. And for my family, it seems to be getting even smaller.
I haven’t written much about it here – honestly, I haven’t written much here at all in the past year – but one of my teenage daughters has been ill off and on for the past couple of years. It started with abdominal pain that we (and the ER doctor) were just sure was appendicitis, but testing revealed a perfectly normal appendix. Since that first ER visit back in December 2015, we have been in the ER quite a few times for stomach pain and just like the first time, they can find nothing wrong except that maybe she could be dehydrated and/or constipated. She has seen GI specialists and had multiple tests done until finally in December 2017 one of them had an abnormal result. We have been held hostage to this pain and we now have a name for our captor – gastroparesis.
This active, social girl of mine used to be a gymnast. She played lacrosse. She went to school, if not joyfully, at least willingly. She hung out with friends. She laughed and joked and was in nearly constant motion. She had sleepovers at home and at friends’ homes.
At the time of that first ER visit in 2015 she was on a competitive cheerleading team. She was a flyer and pretty darn good at it. She tumbled like the former gymnast that she was and relished the whole hair-and-makeup process that came with competitions. She missed a few practices due to random belly pain, but overall it wasn’t a huge factor. She stopped cheer in spring 2016 and took a break from sports for several months, not for physical reasons but for personal reasons.
Early winter 2017 saw my daughter taking up lacrosse. She was very enthusiastic about this new (to her) sport and a fast learner. Even after she broke her wrist while snowboarding, she continued to go to lacrosse and simply learned to use her non-dominant hand for everything. When spring came she again did lacrosse, although she missed a practice or two due to bellyaches.
Summer 2017 saw her taking up gymnastics again and even joining a competitive team. She also did lacrosse again, which was only a six-week program in summer. But this was when things started falling apart for her. Of the six weeks of lacrosse, she made it to three sessions and left early on another day. The only thing she could tell me was that her belly hurt. She was relieved when the season ended.
Gymnastics was hit or miss. After being very excited to make the team, she started missing practices. Her father and I tried to be understanding but it’s hard to do when you consider the amount of money involved in the team commitment. Finally in November she asked if she could stop gymnastics, and we could see how hard it was for her to ask so soon after she begged to do it, but we could also see the pain in her eyes. That’s one of the only visible ways to tell she is sick, because she looks the same on the outside.
Our world started shrinking.
She decided not to do fall lacrosse because she just didn’t feel she could make it through the practices and games. She had plans to try out for the school lacrosse team in the spring but that dream started to fade away. She went on some sleepovers but most of the time after a couple of hours she called us to pick her up because of her belly. It got to the point where she hardly saw her friends, and if she did, it was nearly always at our house because she could lie down if the pain started. She cancelled plans and had to send friends home on several occasions because of the pain as well.
Our world kept shrinking.
After many, many absences in the spring, she started school this fall but almost immediately started leaving early, going in late, and missing days due to the belly aches. She finally stopped going in mid-November. The belly pain, now localized to one particular spot, made it impossible for her to sit up in school all day. In addition to the pain, she started feeling nauseated and on occasion she would throw up after eating.
And our world shrank even further.
We have turned down many invitations and activities because of this mysterious belly pain. We have virtually stopped inviting people over because the pain is unpredictable and we don’t know when she is going to need one of us to sit with her and comfort her. We have left events early and stayed home when we would have preferred to go out. We don’t travel. There are days that I leave home for my part-time job and I have to turn right around and go back home because she needs me. Or days when my husband works from home because she just needs to know someone is close by.
We have seen our world shrink to the size of our home.
We have endured doctors’ appointments, tests, and visits where they not-so-subtly suggested that maybe it is all in her head (it’s not, trust me). We have seen doctors who literally threw up their hands and declared they had no idea what is wrong with her. We have worried over missed schoolwork and despaired that she will complete her current grade level with her classmates. Where we once thought we could at least see an outline of what the next few years with her would bring, now we face an uncertain future. Will she go back to school eventually? Will anyone ever find a way to stop or at least reduce the almost daily pain she is in? We don’t know, and that is an uncomfortable place to be.
She doesn’t eat much because she is full quickly. None of the medications prescribed for her have helped. She is tired a lot. We are living in the in-between and it is such a small space.
And yet we want to keep hoping and planning our lives as though this is going to change. It has to, right? Next month we see yet another specialist, and for the first time we are having to leave our immediate area and drive a couple of hours away for care.
There are good days when she feels almost normal, but then come the bad days when she stays on the couch and tries to sleep it off. We are hoping for the time when the good days far outweigh the bad ones and this period in our lives is only a memory. Meanwhile we keep putting one foot in front of the other and trusting in the One who holds the whole world in His hands.