My two boys head back to school next Monday. They're excited and looking forward to it, but my husband and I are full of anxiety.
It hit me hard last night, after talking to another mom about the teacher assignments that had recently been mailed. I got off the phone and tried to concentrate on the movie Ken and I were watching, but I suddenly felt horrible, like I had been punched in the gut. I tried to figure out what was wrong and realized it was wave of anxiety over the coming school year.
Both of our boys have been doing really well all summer, able to be active and play like normal, healthy kids. Jamie's improvement on Florinef has been absolutely stunning, bringing his stamina almost back to pre-CFIDS days. He's going to try going back to full-time school, a normal 7th grade schedule (he ended up taking 3 classes in school last year and the rest from a homebound tutor, dropping everything but the required academic courses).
All of this is very encouraging, and Ken and I are hopeful that this year will be better. But we're also scared, trying to ward off our feelings of impending doom. You see, we started out the past two years with high hopes also and ended up struggling through the most difficult period of our lives.
CFIDS is scary - its unpredictability, its seemingly random relapses, its sense of having no control. It's exponentially scarier when it's your kids living in its shadows. Jamie is doing very well on the Florinef, but we're holding our breath that he doesn't relapse. Meanwhile, our 8-year old, Craig, has had mild symptoms in the distinctive exertion-crash pattern of CFIDs for two years now. Last year, he ended up missing 32 days of school (not much by CFIDS standards but enough to trigger a shower of meetings with the principal). He's also had a good summer, but we're holding our breath, waiting and watching. Potential triggers of a more severe illness are everywhere - unseen viruses, unexpected stresses and exertions, even puberty. If I think about it too much, it terrifies me, knowing of the genetic timebomb ticking away.
On top of our fears for our sons' health, we dread having to deal with the school staffs again. Our never-ending meetings, negotiations, and battles last year left me severely ill. We don't want to have to go through that again.
OK...big deep breath. It's easy to let these fears take over, but it's not good for me. We have good reason to be optimistic. Both boys are doing substantially better than they were a year ago. We took steps this summer to minimize over-exertion and purposely kept these last weeks of summer easy. Both boys are returning to familiar schools (last year was a new school for both of them). I finally e-mailed the middle school today to update the school counselor on Jamie's health and his plans to try a normal schedule. Her response back was pleasant and surprisingly supportive. It's a new school year, with new opportunities.
Fear is like a poison. I can feel its physical effects on me. We just need to continue to live our lives one day at a time, focusing on our joys and blessings today and hoping for the best tomorrow.
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