Spring cleaning fever finally got to me a little bit yesterday. I’ve been trying really hard to ignore the urges – even though I know I desperately need to do it – so I figured I’d start small by getting all of Jenna’s medical reports together, updating her meds chart, and sorting through the miscellaneous junk that always manages to get tucked in where it doesn’t belong.
I thought it might help if I categorized everything chronologically, so I started with the binder and folders that contained the earliest history of the “something’s not right” days. Notes we made for all the specialists we visited that laid out seemingly unrelated symptoms from early 2009 all made sense now. I think when Jenna finally beats this horrible disease I’m going to compile all these notes, with their professional suggestions (or diagnoses of Munchausen by Proxy syndrome), and write them a really long letter.
It’s hard to believe that a year ago we had our first visit with a Lyme doctor in Virginia that would set the course for this journey we’ve started. She was the first doctor who didn’t look at us like we were crazy when we started describing the myriad of unexplainable symptoms and strange complications that had plagued Jenna for almost a year. She didn’t even hesitate to refer us to a more experienced doctor when it became evident that Jenna’s case was going to be difficult, at best. You have to admire a doctor who admits their limitations and points you in the right direction.
Jenna started treatment in March of last year. Looking back over the notes from before she started treatment and then her early days of treatment was a reality check for me. When you’re in a situation that you have to stay focused on getting through one day (and sometimes one hour) at a time, you can lose perspective of the big picture.
So, is the treatment working? Is Jenna getting better? Better is such a relative term…better than an hour ago, last week, a year ago? We knew when we started treatment that it was going to be a long road and that she would have to get a lot worse before she could get better (there’s that word again). Yes, in some ways Jenna is better than she was almost two years ago – she doesn’t sleep 20 hours a day and worry the other four hours that she’s dying but doesn’t know why. Yes, in some ways, she’s even better than she was a year ago, when her short term memory loss stole hours at a time away from her.
But is she BETTER – as in, is she back to being the Jenna who took on two roles in The Wiz, who learned to tap dance for her role in Nunsense, who played basketball and softball, and loved to run? Is she back to being the Jenna who could sit down and read a book in a couple hours or complete school work with little effort? Is she back to being a normal teenager, learning to drive and stressing over taking the SAT’s? No, she’s not. And we don’t know if she ever will be. So NORMAL becomes another one of those relative terms.
I have to admit I’m one of the moms who taught their kids from a very early age to just assume they were going right to college after high school – that it was the “normal” thing to do. What I’ve learned over the last two years is that there is no such thing as normal for everyone – you have to decide what is normal for you. Do you need to go through a traditional college experience to make a difference in this world? My perspective on that is changing. In fact, my perspective on a lot of things has changed over the last few years – sometimes to the point that I’m not really sure I know what I believe. One thing I do know is that my almost 18 year old young woman has been making differences any way she can whenever she can. She has certainly taught her mother more than a thing or two over the last year, and I suspect has touched some others as well, and to me that’s not normal – it’s exceptional. And I’ll take that over normal any day.
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