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


On Dreams Deferred

I'm not a believer of the $50K, 5-hour Batman-themed Bar Mizvah for my children. 

Yet, once upon a time, I had planned for my children to be bar and bat Mitvahed in Israel, the birthland of their dad. So not gonna happen. Not with our medical spending sprees. I can live with that. I imagine my son will have his bar Mitzvah on the river, with a celebration at our house, maybe our backyard. Kinda hippy-ish. And then, we can invite you all.

Hey, at least he still wants a bar Mitvah. He may be mad as hell at this G-d who let him get so sick. He may google pictures of models and then pictures of shrimp (yeah, we monitor him.) But he's my nice Jewish boy. When he gets better, I hope he still wants to be a scientist someday. Back in pre-kindergarten, when all the other children dreamed of becoming Superman or a Princess, my son wanted to be an animal scientist. 

Maybe he'll become a scientist and find a cure for Lyme Disease and PANDAS. 

Maybe he'll just be healthy and happy.

Once upon a time, my husband and I used to go out on dates. Or to a party. We could leave the kids with a babysitter. Now, my son is at his worst at night. Now, if we want to socialize, we host. One thoughtful friend wanted to have a party and knew we couldn't leave our kids, so she hosted it at our house. We make do. Sometimes.

Friends and family post fabulous, sun-baked vacations on Facebook. Not I. Even my ten year old students travel to faraway ports over vacations. Not I.

OK. I'm jealous. We go to...the expensive Lyme Literate Doctor! Oh, how thrilling!

The book I began writing ten years ago remains on the computer and in my head. The Les Paul guitar my husband gave me for an anniversary gift (back in the days before the funds went to doctors) sits in its case. (Note: I am undeserving of this guitar; my husband's generosity far exceeds my skills. Like billions of miles far.)

But I will complete my book. And I'll play around with my guitar again, some summer when I don't have a sick child with me all day. And an anxious well-sibling crawling into my bed each night. 

All my hopes for my children are deferred. My son's childhood is being viciously ravaged by these diseases. I am helpless. I cannot cure him. All I can do is read, read, read and find the best doctors possible. There are nights when I go to bed feeling that my ribcage will crack from the pain in my heart.

This is not how I pictured my life to be. I have a loving husband, two wonderfully sweet and adorable kids, a crazy hyper dog, a picket fence, a career I love. A bicycle.

Yeah, MY bicycle.  See? I can't stay miserable. 

Somehow, everything slips away when I'm on that bicycle. I plot out my next blog. I even think out entire books. If only I had an intravenous feed from my head to my computer! I revel in the rich green of summer, the sun-streaked leaves, the splashes of heat, the chipmunks that dart dangerously close to my bicycle tire.

On those early, chilly mornings before the humidity hits, I race down the trail, searching for snakes to avoid in the area my son calls snake territory (aka snake terror-city.) Skimming the road at 37.5 mph and feeling guilty after (don't scold--there were no cars and I have a good helmet.) Dreaming about the day I have fewer responsibilities and can ride without a helmet, letting the wind do what it will with my hair. Dreaming about riding cross-country with my bicycling family.

All these life-long lessons I get on the road: Lesson 1: Caffeine, which normally makes me shaky, helps me kick ass. But save it for the end of the ride, because the crash (not literally) will come. Lesson 2: When tired, put both feet on the ground. Last time I bicycled about 20 something miles on about 5 hours of sleep, with just one more mile to go, I tumbled over at a complete stop because I didn't unclick my right cleat and leaned in that direction. Lesson 3: I need to always do something for myself. Right now, bicycling is it. 

We might not work our way up to bicycling 100 miles in a single day this summer. We might settle for the 72 mile ride. Or even the 50 mile ride.

But heck, I've got my goals, and if it's not this summer, it will be sometime this year. I am going for the century and I will do it! This is one dream that will definitely not be deferred indefinitely.

P.S. For those of you who want to join us...The North Fork Century is August 26. Look for us or ride with us. We'll be wearing those cool t-shirts designed by my husband. And having a great time!


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