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


the life of a bird

who does not love so much

that it hurts






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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


If Life Were a Bicycle Ride

Honeysuckle, butterfly-dancing day, warm, azure sky and my son is sick.  We bicycle out 6 ½ miles and I tell him to stop and eat. My tall, 11 year old boy, wearing his father’s old racing jersey and new bike shorts, pulls his bike up to the bench and tears open the wrapper of his nutty energy bar.  “I don’t think I can do anymore, today, Mom,” he says. 

“You really want to turn around now?” I ask, then correct myself.  “OK, let’s turn around. You know yourself.”

Last week we did 31 miles and he could have gone further.  Of course, the crash later would have been greater, but this kid is able to push himself.  He’s as fast as I am on short, steep hills, maybe even faster.  He’s got legs built for running and speed.  He's got the biking endurance of his dad.   And a sweet, huggy personality.  Sometimes.  Today he is whiny and frustrated easily.  He can't explain in words how he feels, though.

The doctor’s office said he might herx--get worse before getting better. One year ago, that was a foreign language to me.  My new vocabulary list for this year: Activated charcoal, Herxheimer reaction, basal ganglia, Lyme literate, immunoglobulin and strep titers.  Now my world continues to be topsy turvy. My family’s world. A world in which infectious disease doctors are to be avoided because they don’t know enough.  Too many doctors don't believe in long-term, or chronic Lyme.  Too many doctors don't believe in or know anything about PANS and PANDAS.  What?  A strep infection causing tics and OCD?  Never heard of it. They'd rather perceive my son as mentally ill and prescribe drugs that could exacerbate his actual condition.

My son is tired.  The culprit?  This brilliant yellow, viscous fluid that is used for malaria of all things.  And babesia, a tick-borne disease that can be contacted along with Lyme, but doesn't alwasy show up on blood tests.  And although we won't subject our son to a spinal tap, which was suggested by one doctor (and negated by another doctor, who said that the spinal tap doesn't always show Lyme,) we are subjecting him to this medicine, twice a day, followed by a tiny chocolate chaser.  And he takes it, using a spoon to scrape the noxious fluid from the cup so that he gets the medicine he might need.  

I drop him back home.  We’ve biked over 13 miles.  Not enough for me.  I’ve caught the biking bug and the outdoors are too blue and sunny to waste.  .

I go back to the parking lot, unload the bike, pull on my biking shoes, re-set the bike computer.  I plan to ride another 13 miles.  6 ½ miles out and 6 1/2 miles back.  Then, I’ll feel like I earned my day.  Plus I need to train.  I intend to do a century, a 100 mile bike ride, in August, as a resistance to my next birthday.  Oh, I’m turning another decade and it will happen.  I’m not going out young. But the word fifty is just another F word to me. 

I’m tired.  Sluggish.  I ponder if maybe I also have Lyme? No. Tests were all negative and I show none of the symptoms. Is it because I had mono when I was 20?  Are my iron levels low?   Or is it sadness over the shape of my family? Well, duh.  It’s been over 2 ½ years that we’ve been living through crises after crises while our boy suffers brain fog, tics, intrusive thoughts, rage and suicidal depression.  

Through my own brain mist I realize my gears are too high.  I’d been trying to get some extra exercise while riding earlier with the little guy, who was pedalling slowly, but now the gears are hard to turn.  I shift down and all becomes more fluid.  A red-wing blackbird flitters across the path.

I reach 6 ½ miles, stop for my own healthy granola bar (lunch.)  No, I’m not ready to turn around.  I’ll go out one more mile which means a total of 15 miles, plus the almost 14 from earlier.

At 7 ½ miles I feel good.  It's that wonderful green-leaf, striped-chipmunks scuttling about the bike path, isn’t-this-world-great kinda feeling.  Fine.  I’ll go out for 10 miles altogether and then turn back.  Make it a total of 20 miles

I'm tired at the ten mile mark. Bicycling and contemplating have caught up. I stop for an energy gel.  Chocolate.  And think about my 9 year old daughter smiling and saying, “What do ladies really like?  Chocolate!”  The gel has been in the bottom of my bike bag for a long time.  It expired last summer.  Oh well.  The package says it's good for about 45 minutes and much of the ride back is downhill.  I have 45 minutes to get back, I tell myself.

Somewhere along the ride, I feel a presence to my left.  I see a flash of white as a man in a tight white sleeveless undershirt and black biking shorts pedals up beside me.  I am stopping at the intersection but he buzzes by without checking for cars. He pedals as fast as he can, glancing behind him as I gain more ground.  I pass him, calling out, "On your left."  

I don't see him again until the next intersection.  I'm a mom and I have babies at home, 9 and 11.  I have to stop for cars. I have to wear a helmet. But this man doesn't play by those rules.  Again, I slow down and he doesn't. He whizzes through, pedaling fast and glancing behind several times. I pass him again. And this goes on. Until finally, when I pass him, I hear a sigh. I totally lose him on the up hill and think that maybe he finished his ride. But no. I'm back at the car for a good five minutes when he comes pedaling past. Ha!!! My husband will be proud!

And he was younger than I am, too.  

I'm not particularly fast.  And not stronger than the next bicyclist.  I'll never win a bicycling race.  But sometimes, it's fun to feel that sense of winning. Especially when we've been losing in our battle to cure my son of PANDAS and now Lyme.  

If the road to curing my son were like a bicycle path, I could see the impending hills and plan. I'd have relief on the down hills, and either experience the joy and excitement of life, or coast for a while. I could shift gears and have a little control.

My husband and I have no control over our son's disease.  We can't fix him.  The doctors have not yet been able to fix him. Our baby is not the only one like this.  There are countless children with PANS, PITANDS, PANDAS and they are all suffering in different ways. 



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