Week four. Lim went to school this morning and made it through homeroom before her headache spiked dramatically. She toughed it out another half hour or so before we came home.
This scares me.
There, I said it. I don't understand why she has gotten better to this point and stopped. Why she can't read. Why she can't handle noise or lights very well. Why she seems stuck in this awful limbo. Nemours childrens' hospital neurologists won't even SEE her until she has had symptoms for TWO MONTHS. The Mayo doctor we've been dealing with is out of town until Friday. *I* am out of town Friday. He's booked Monday (a day off of school, thankfully) so we are going Tuesday at 7a. (And, I just scheduled an appointment for tomorrow morning with her regular Mayo doctor, if only to reassure me that there isn't something else we could or should be doing).
But I don't know what he can tell us, other than "it takes time". I suppose we could kick back up the dosage on the Elavil (and I may try that on my own anyway) but that creates some potential issues on the back end when we wean her off of it.
I've been reading about the injury suffered by the Penguins phenom, Sidney Crosby. He has now missed 15+ games off of a mild concussion from being clocked in the same exact spot as Lim took her hit. There is no timetable for his return, but there IS a lot of discussion about his toughness, and whether he is justified in waiting to come back. After all, he IS the leading scorer on his team, so isn't he letting his teammates down by not coming back and risking his entire future? (insert rolling eyes here).
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Writus interuptus, first cousin to trainus interuptus... It is now Tuesday afternoon. Lim awoke feeling a bit worse today, and off we went to Mayo. Our regular Mayo doctor wants to set an MRI and get a neuropsychology/neurology consult for her, either with Mayo or at Nemours. Lim spent much of today dozing on the bed with the mutts.
Back to Sidney Crosby and the NHL. In researching what happened to him I also found a number of other players who have been flattened by PCS, both this year and in the past. I've read of the possible predisposition to more severe symptoms and of its possible relationship to PTSD and depression (hence the dosage of Elavil Lim is on right now), and I've seen that there is no timetable... and that some people continue having symptoms for years after their last concussion. In other words, Lim has good company.
None of this eases the concern and frustration I feel for Lim. She is now coming up on an entire month out of school. Her flag football playing days are over. So too her soccer playing days, brief as they were and talented as she appeared to be. Some glitch in her system led to this complex reaction to the original brain trauma and we have no interest in experimenting with future impacts and repercussions (reconcussions?). She is on the verge of missing her first high school track season, which had started off so promising. Lord only knows when she might be able to handle the exertion and flip turns of a swim practice...
At this point I'd just be ecstatic for her to be able to read again comfortably.
This entire trip has been a very lonely journey for both Lim and me. Matthew and Bim have been helpful and flexible and supportive (Matthew a bit more so, of course) in spite of the serious disruption to the family routine. Bim has done her best to understand why things are different and to not be too resentful, but it is still difficult on her. The radio and tv are generally off and Bim has to keep a good governor on her normal boisterous exuberance, as loud noises still greatly bother Lim's head. My attention has been divided differently, and, even though Matthew and I have worked together in a concerted effort to get me some time with Bim and him some with Lim, she has definitely gotten the short end of the stick.
But, in the end, Lim and I have been united in our isolation. While Lim expresses her feelings pretty clearly to me (sometimes in conversational form and sometimes in the form of "Mom taking the brunt of the 11yo frustration storm"), I'm actually struggling to find a way to express mine - time and opportunity are in short supply, and writing is hit or miss as well. When I actually get 5 minutes in a car by myself I debate whether to call a human or crank up the music I seldom hear anymore. Working out feels more like disloyalty to Lim than an outlet. Besides, I'm not even sure I can describe what I feel anyway.
The gamut of emotions this past month encompasses empathy for Lim's own feelings and a witches brew of my own. The crazily full calendar we look forward to every spring and summer is starting to loom large on the horizon, and all the events we anticipated are now clouded with question marks. And when those question marks will be answered is ALSO a question mark... And, as anyone who knows me knows, I hate unknowns. The blinking question mark exists even within the 24hours of any given day, as whether Lim can go to school, when she goes, and how long she stays is all TBD on a rapidly changing basis.
As with anything, Lim and I do much better when we take the future in hourly or daily increments and refrain from looking too much at the big picture. Doing that helps diffuse the impact of how quickly time is racing by, and how much she is missing out on right now (and for the foreseeable future). It helps us avoid dealing with questions no one can answer, like, when will she be able to read again, when will she be pain free, when will she be able to actually last through a day of school, when will she be able to start actually participating in school, when will she be able to get caught up academically, when will she be able to swim or run or watch tv or listen to music....
And what if the answer is.... Never?
Now THAT is scary.
...that's my why, what's yours?
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