"Suffering the Slings and Arrows of Outrageous Fortune"

Managing Life

Well, Em has had a couple weeks of rehearsal for The Sound of Music and, so far, all is well. Thus far she has only had rehearsal a couple times a week. She is pretty tired but is keeping up reasonably well with her home PT program, her school work and the classes she is teaching at our homeschool co-op on Fridays. She is a busy girl and enjoying life at the moment, albeit in an exhausted sort of way.

In the next few weeks, the rehearsal schedule will ramp up and hopefully she is able to manage that  too many ill effects. We know she is going to be fatigued, we know she will probably have more pain and probably more injuries/ dislocations…

BUT, the sheer joy she is getting from being involved in theatre again, from having that creative outlet, from reestablishing relationships and being able to sing in a group again far outweighs the problems and risks. This is such a moral boost for her; after 4 long years of darkness and suffering, it is hard to actually put in words how precious this time is.

[As she started rehearsals last week, I started doing the math and realized it had been  4 years since she was able to be in a play – 4 years ago, she was in The Homecoming, ironically with the same director, and, though it was a small role she had, she struggled. She had dislocated her knee that September, been in PT and been dismissed because the pain was increasing and she wasn’t making progress. She was off and on crutches that fall, the fatigue was worsening and the rest of her joints were starting to be a problem. At that time, we had no name for her symptoms; I had been told ‘it couldn’t be that’ – that weird condition that started with an ‘E’ and I couldn’t pronounce and the closest we had to a diagnosis was that she was ‘loosey goosey’. We were about 9 months away from being able to put a name to her condition and from life as we knew it changing completely.

On one hand, I can’t believe it has been 4 years since we have been in a play. On the other, the past 4 years have been a lifetime of change and growth and it could have been 400 years instead of only 4.

When I sit in on rehearsals and see the happiness and joy that has escaped her for so long, I feel so blessed and it makes all the hard times of the last 4 years worth it. There were times that I  thought this could never again be her reality – that she has this opportunity is a blessing and a joy and, no matter what the future holds, one that we will forever be thankful for.

You know, I didn’t mean to do anything but give a quick update on how Em is doing with her new activities, but I find that it is such an overwhelmingly good thing that I can’t help but look around in the present and back in time in wonder. And I am ever conscious of the folks who are reading this blog at a low and frightening time in their lives and the power that reading a hopeful story can have when your life is falling apart.]

So, anyway, things are going well and Em is managing everything she needs to manage pretty well – we have several upcoming doctor’s appointments and I will update with whatever we find out. I am particularly looking forward to seeing the geneticist next week and sharing what Em is up to since he saw her 6 months ago…. I think he will be pleasantly surprised!


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