When Everything Seems To Go Wrong

What a week! I didn't even have time to write because I was either running around after various emergencies or lying flat, trying to recover enough to run around more. whew.

Our week started with our truck breaking down, stranding us in Connecticut. We finally got home Monday afternoon, and I looked forward to life returning to "normal" on Tuesday. Instead I spent much of Tuesday and Wednesday taking my older son, Jamie, to various medical facilities. He was still having headaches a week after a fall while snowboarding. His doctor thought he had a mild concussion and sent him for a CAT scan and a follow-up visit with a neurologist. Thankfully, he seems fully recovered now and got the all-clear from both the scan and the neurologist.

Tuesday afternoon my husband found out he had to make an urgent trip to Texas for work, so he left on Wednesday and was away until 2 am Friday. Although he tries not to travel too often, some travel is a part of his job. I always worry about how I'll manage while he's gone and what will happen if I crash badly. He does so much around here to take care of us.

I thought things had pretty much returned to normal on Thursday when I ran into some unexpected battles with Jamie's school. We've had to fight every step of the way this year for appropriate accommodations so he can manage school with CFIDS. We had recently discovered some cognitive dysfunctions particular to math computation and wanted to explain them to his math teacher. It should have been a simple request, but it became much more complicated, tangled in miscommunications and misunderstandings. All of this culminated in a very upsetting phone conversation on Thursday with the 6th grade advisor. I was shaking and sobbing by the time I got off the phone, all the time painfully aware of the effect of stress on my own physical well-being.

Despite all of these issues and urgencies, there were times during this week when I felt very grateful for what we have. CFIDS has done this to me - made me so much more aware of what we have to be thankful for. Incredibly, it often seems that the worse things get, the more I realize that there are people far worse off than us.

During one of my "hurry up and rest" periods, I read a magazine article about a child born with a genetic defect that resulted in a wide array of medical problems. He couldn't walk until age 3 and at age 4 still can't talk. The article highlighted his and his parents' strengths and bravery. Reading about their struggles and the dismal prognosis for this boy's future made me profoundly grateful for our own boys' relative health. I know that sounds crazy when we're dealing every day with such a debilitating illness, but we are very fortunate. Neither Jamie nor I is as severely disabled as so many others I've read about or talked to. There's a fairly good chance that Jamie will eventually recover or improve quite a bit (the CFIDS prognosis is much more positive for children than for adults). Both of our boys are smart, caring, kind children, and we remain hopeful about their futures.

I was similarly moved by a newspaper article about the opening of a local hospice for dying children. I can't imagine dealing with a child with a terminal illness. Thank goodness Jamie's head injury turned out to be mild.

I was also reminded of something that happened during our visit to Connecticut last weekend that was temporarily forgotten in this week's turmoil. Our boys, ages 8 and 11, had gone to their 4-year old cousin's birthday party, attended by a crowd of preschoolers. By the end of the party, several other parents had come up to my husband and I and told us what wonderful, caring children we had. They had remarked on how our older boys had played with and helped all the younger kids with patience and kindness. As far as we're concerned, this is the greatest compliment anyone could pay to our children. It's what we've always dreamed of and strived for - that our boys would grow up to be kind and caring people. In some ways, CFIDS has probably helped in this regard. I think both of our boys have a much greater empathy and compassion for others because of their own struggles and their desire to help care for me when I'm ill.

We are very fortunate. I just need to try to remember this when everything seems to be going wrong.