I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Jul162012

"Sweet dreams are made of this...."

News flash: 11 year old boy suffering from both Lyme Disease and PANDAS, accompanied by his parents, bicycles 100 miles in one day! 

Well, this was the idea back in May of this year. To promote awareness of PANDAS and Lyme, we would wear t-shirts designed by my artist husband. But my husband has been busy (working!) and hasn't completed the design yet.  Plus, he was doubtful of our ability to actually get out and train when our son is home and not well.

August 26 is looming and I'm in no way ready to ride 100 miles in one sitting. I've been riding a few times a week, 20-30 miles at a pop when riding solo. I've conquered some hills, ridden for speed.  I could easily crank out 50 miles.  But 100?

With his little sister at daycamp this summer, my son is hovering around the line of boredom.  We rejoiced when 10 days into the homeopathic treatments, he actually picked up a book again. And did a little math--hooray! That lasted a total of 2-1/2 days. But while he's occasionally played with neighborhood boys, he's also just hung out at home. I understand. Recovery is priority and he's not feeling very chipper. The result of this is that my summer is being chewed up with childcare, laundry, driving to camp, laundry, organizing my daughter's room and doctor appointments. And a little bit of bicycle riding.

So, my husband and I decided to carve out the days needed to train, get a babysitter to keep the little guy safe, and go for our goal. We had a great hilly ride last week which aroused a lot of tween jealousy. That night, he and my husband and a couple of friends drove to Pennsylvania to see competitive track racing (bicycling without brakes.) My husband had long ago raced on the same track. The bicycling bug was back.

Two days later, on a Sunday morning, my 11 year old and I traveled off the paved path and onto open, treacherous roads. Cars careened past as we cycled over rugged, gravelly roadsides and one challenging hill. He LOVED it. Said it was his best ride EVER. But at about 12 miles, with 2 more to go, he told me he was feeling unbalanced. I've seen him unbalanced before. It's a PANS thing. When I didn't know better, I thought he was faking it just to get attention, as he reached out for furniture and walls like a bad actor pretending to be a drunken sailor.

This is a kid who at the age of 7, rode 20 miles with his dad. Over a month ago, he rode 36 miles with his father and me. And beat me up the hills. But a few weeks ago, he struggled with 2 miles, eventually pushing himself to ride a total of 9 miles that day, despite pain in every joint in his fingers, arms and legs. Mornings are not kind to children with chronic LD.

Just as the phone is a magnet for getting a child's attention, now that we have these wonderful rides set up (and alone time with my husband,) guess who wants to join us? Guess who has since been pushing himself to pedal around the hilly neighborhood, not just once, but nine times, fast? And arguing that his body does not hurt when he rides? He's even preparing his own water bottle.

Decision time. Do we let him push himself, knowing all the while that his condition includes encephalitis? A few weeks ago, pre-homeopathy, he was having meltdowns the night and day following a long bike ride. One of our doctors recommended Ibuprofen, which is a PANDAS standby for many kids, to help with the inflammation. I dosed him before and after the ride and it made a difference. But now that we're doing homeopathy, we are avoiding the Advils and Motrins which suppress the immune system.

Dreams get delayed and there's always the possibility, for a zillion "normal" reasons (never mind the fact that we have a sick child) that we will not be able to ride the century this August. Alright, we do 50 miles. Or 75. There could be a hurricane that day and we accomplish no miles at all. Today is brilliantly sunny and we're bicycling with our son. For a little while, if his little body holds up, we can all forget that he has a disease and just have fun. 

 

 

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