Happy Halloween!

There are lots of things I want to write about, but today is Halloween! So, for a little Halloween fun, I thought I'd just post a few photos from our past years' festivities and hit the heavier topics some other day.

Both of our boys are feeling good and in school today (hooray!). I am very grateful that, even during Jamie's worst periods, they've always felt well enough to enjoy one of their favorite holidays and go trick-or-treating. In fact, Halloween is a family affair in our house, as you can see here. Ken and I always try to come up with costumes for ourselves to complement whatever the kids have chosen.

Three years ago, we went with a Star Wars theme - one of our better endeavors, if I do say so myself. Jamie was Luke Skywalker, Craig was Hans Solo, Ken made a very convincing Obi Wan Kenobi, and I was Princess Leia (awesome wig, huh?).

Blogger.com's being uncooperative with my photos today, so the others will have to wait. Time to go pick up Jamie at the bus stop, so the fun can begin!

Hope everyone has a great Halloween!

Banging My Head Against the Wall

Outside my home office, there's a mama cardinal smashing herself against the window from dawn until dusk every day, probably defending a nest in the bushes. We worry about this poor bird and are driven crazy by the constant banging. We've tried everything - lights on, lights off, blinds up, blinds down, even a big bird silhouette taped to the window. She did the same thing last fall, relentlessly protecting her family day after day, with no thought for her own comfort (she must have one hell of a headache each night).

I have felt just like that mama bird these past couple of days, beating myself senseless and making no progress.

Poor little Craig is still severely crashed - he's missed five days of school this time (so far). I feel helpless seeing him so sick, and I'm exhausted from trying to help him catch up on missed work and also trying to help Jamie make up what he missed last week.

I spent all morning yesterday trying to get reimbursement from our insurance company for a $200 lab bill that they say they won't cover. Then I got a phone call from the VW dealer that my 14-year old car needs $2000 worth of repair work.

And then there's CFIDS itself. In trying to defend my lab test to the insurance company, I pored over all kinds of CFIDS research to collect documentation to support my claim. There are so many theories out there, but nothing seems to really work. I read all the research, have endless meetings with my doctor, and try everything. Some things help a little, but nothing ever helps a lot. Sometimes all my work to find effective treatments seems to amount to no more than banging my beak...er, head against the window.

I'm trying hard to recall how I felt this weekend and to stay positive, but some days it's an uphill battle.

Highs and Lows

I haven't written a blog in over a week because I haven't had a moment to myself! It's been a rollercoaster week, with all four of us taking turns sick. Jamie missed four days of school last week, and Craig missed last Thursday, Friday, and today. I felt bad on Thursday and really horrible on Friday (and bad again today). Even Ken (who hasn't been sick in years, thank goodness) came home from work sick on Friday and spent most of the weekend in bed. I suspect whatever virus he caught is what's wreaking havoc with our immune systems.

Craig and I both felt great this weekend. He was bubbling with energy and his usual exuberance. I was also full of energy (good thing since Ken was out of commission). I cooked a lot, took walks with Craig and with a friend, and took Jamie to his soccer game.

I noticed this weekend, as I often do when I temporarily feel like my "old self," an intense surge of joy and energy. Obviously, I feel relieved to be feeling good for a change, but this kind of elation goes beyond that. Maybe it's partly a biochemical thing - all those feel-good hormones that have been in short supply suddenly flooding my brain. In any case, at these times, I feel hugely grateful for my life and almost astonished at all the wonderful things surrounding me. I feel as though the world is so full of great books, music, foods, exciting places to see and people to meet that I can't wait to experience it all. I feel filled with joy.

I'm not sure whether I've adequately described this feeling of joy and love of life. It's the polar opposite of the depressed state that can accompany really severe crashes. I want to blog about some of things that bring me joy - whenever I can find a few moments to myself!

A Sense of Perspective

I regained my sense of perspective about our family's health issues this morning on a trip to our local children's hospital.

Craig needed a back x-ray (his pain is probably "just" CFIDS, but the doctor wants to rule out other causes). As the boys and I sat in the waiting room of the imaging area, we saw children with all sorts of severe disabilities. So many kids, big and little, in special wheelchairs, hooked up to tubes or unable to walk on their own. One young boy had a seizure in his wheelchair right in front of us. His chair was filled with all sorts of medical equipment, and his mom looked at him and said to her companion, "Yes, he's definitely seizing this time. Well, we're in the right place for it." She was so calm and accustomed to this that it brought tears to my eyes.

I often think about how grateful I am for all that we have - each other, our family and friends, a comfortable home - and try to appreciate the joys in our lives, but seeing all those families at the children's hospital today made me feel even more blessed. Our health problems are certainly challenging, but they're nothing compared to what some of these other parents have been dealing with every single day since their child's birth.

The past two days, with school out, my boys have had a blast - running and playing with their friends, coming home laughing and covered in mud, having a friend sleep over last night. It's been like a mini summer vacation for us. I am so very grateful that they have the strength and vitality to play and be carefree like that. Tonight, I am very aware of our blessings.

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.

Who Takes Care of Mom?

It's Day 3 of all three of us being sick at home. I'm doing a little better this morning, but I had a little break-down last night.

It's impossible to take care of myself and rest like I need to when both boys are also sick. Twelve-year old Jamie is fairly self-sufficient and is content to read for hours at a time (he also had plenty of practice with crashes during the past two years). Eight-year old Craig requires more attention. Plus, he seems to be constantly hungry when he's crashed, asking me for more food within minutes after finishing a meal (just as I wrote that sentence, he said, "Mom, I'm hungry")!

Last night, my husband and I were struggling to help both boys with missed schoolwork, they were both feeling worse as it got later, and I felt really awful. Oh, and I was tryng to pay our bills at the same time (several of which were late because I've been so sick lately). I finally just hit overload. I left the room so my kids wouldn't see me lose it.

Here's the scene that says it all about being a Mom:
I was lying in my bed in the dark, quietly crying about everyone needing me when I just needed to rest, and Jamie walked into my room. In a sweet, nurturing voice, he said, "Oh, Mommy. I'm sorry you're feeling so bad." He gently rubbed my back. (30-second pause and change of tone) "Mom, I need your help on a Social Studies question." Perfect.

Of course, I really love being a Mom and wouldn't trade my life for anything, but sometimes it's so hard to take care of everyone else. Who takes care of Mom?

Another One Bites the Dust

Jamie crashed this weekend, and Craig and I are crashed again (still?), too. Whew, it's been a rough month. Maybe it's due to exposure to all those fresh school germs. Anyway, Craig has another doctor's appointment this morning. Jamie's still feeling rotten, but it's his first full crash in about 6 months! He was bummed yesterday that he won't have perfect attendance this quarter. Perfect attendance?? He missed 60 days in 5th grade, and we didn't even bother counting last year, but his attendance was definitely less than 50% overall. So, we can certainly ride out this crash.


Besides school and soccer starting in September, we attended two out-of-town family weddings. It's no wonder the boys and I keep crashing. Despite the consequences, I'm glad we went to the weddings. Family is so important. It's really been nice to spend time with our family this month, get dressed up, and celebrate. I even danced a little, just like a normal, healthy person (probably why I crashed so badly). I danced with my Dad and with Ken, my husband,and even did a cautious boogie to "We Are Family" with my aunts!

So, we did have some fun this month, despite the long drives and late nights. I'm trying to keep in mind the highlights, as the three of us lie around the family room trying to recover. I better fix some lunch so we can get to the doctor's office on time.