Tuesday, October 10, 2006

Moving Forward

"Crying is all right in its way while it lasts. But you have to stop sooner or later, and then you still have to decide what to do."
- The Silver Chair, book 6 0f The Chronicles of Narnia, by C.S. Lewis

We're all still trying to recover from last week's major crash, but things are definitely better now. Craig seems to have pulled out of it completely, and Jamie's still a little low on energy and battling some brain fog but doing much better. Both boys went back to school on Thursday. I got much worse and pretty much collapsed in my doctor's office on Friday. She put me on an anti-viral which seems to have finally done the trick. My stamina's still low, but I'm making progress.

I realized last week that it was time for a major attitude change. With respect to Craig, my 8-year old, I think I've been still stuck in feelings of denial and anger. Each time he gets sick, I get stressed about what it means long-term and really stressed about the missed school days (my husband does, too). I end up being short-tempered with the kids, putting more pressure on Craig to return to school, and probably making both of us sicker.

It's time to move forward into acceptance and leave this gray area behind.

We finally talked to Craig last week about his probably having CFIDS. We emphasized what Dr. Bell told us last year - that it's mild and it might never get any worse (I hope and pray) - but it was time for Craig to understand what's going on, especially the cause-and-effect of post-exertional crashes. He took it pretty well. He has probably suspected as much at times during the past two years.

I tried to make him an appointment with Dr. Bell, but he's no longer seeing new patients (Craig was never yet officially his patient). I was terribly upset about this at first, but I contacted Dr. Rowe (the expert on pediatric OI and CFIDS). He was wonderfully available (via e-mail) and supportive, as always. He said to stop worrying about testing Craig for OI, since young kids fidget too much to get an accurate result anyway. He said with Craig's symptoms and family history, he'd just try treating for OI; we should see the same sort of improvement with Craig that we've seen with Jamie.

We met with Craig's pediatrician yesterday, got a doctor's note for the school, and had her rule out other causes for Craig's back pain. She's going to talk to Dr. Rowe and follow his recommendations.

This change of attitude was just in time, as Craig's teacher has requested a meeting this week with us, the principal, the school nurse. etc. We've been through all this before. In fact, Jamie's school administrators have also requested a meeting after his absences last week to revise his 504 plan (educational plan for accommodations).

With both schools, we need to emphasize that the crashes are a part of the illness, that they need to expect these periodic absences of several days or a week, so they'll all quit freaking out each time it happens. Once we get past these meetings, Ken and I will breathe a big sigh of relief. As upsetting as it is dealing with our children's illnesses, it's sometimes even worse dealing with the school systems.

So, I'm trying to get back to my more typical positive attitude. It really helps a lot just to have finally labelled Craig's CFIDS and be dealing with it openly with him. Once again, we are looking for our "new normal," trying to adjust to this as an integral part of our lives instead of falling apart every time there's a crash. I learned that lesson years ago for myself and am now re-learning it with my children.


  1. Just wanted to say I hope things start to improve for you really soon!

  2. Dr. Rowe is super-fantabulous in my opinon. I just love him. I'm so glad you feel like you have turned the corner.

  3. Yes, Dr. Rowe is incredible!! Even though his clinic has been completely full for years now, he answers every phone call and e-mail and offers to work with your own doctor long-distance. He has certainly helped our family immensely.


  4. Sue,
    I read your post with tears. It must be so very difficult to come to terms with both boys having CFS and dealing with the school system, medical, etc. I'm glad you have found a doctor who is on your side.

  5. Thanks for your kind thoughts, Mary Anne. We're doing pretty well at the moment - everyone feeling OK and the worst of the school stuff behind us. I enjoyed your blog, even though I'm not a knitter (though I'm discovering a large CFS/knitting community exists!) I love your new hallway. Thanks for visiting!