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


A better GPS to managing your child's disease

There I was, barreling down the highway in my car, sweatshirt hood up over my head, covering much of the left side of my face so that I could barely see out of my left eye, traveling away from my destination. I drove in the right lane, searching for an exit that wouldn't come, speeding along just to try to meet the flow of traffic, yet being passed all the same.

I needed to get off the highway. I was heading in the wrong direction. To make it worse, there was a bridge coming up, leading to another state altogether. My chest tightened in panic; I had to turn around somehow. I pulled into another lane in what appeared to be an exit, but it fooled me and just brought me back onto the highway again.

Some man came running down the middle of the busy road, dark clothes, thin, racing down the line that separated the lanes. He was aiming for my car door. But because of the hood obscuring my vision, I didn't see him until the last moment, when I sped past. At that point, I heard police sirens and noticed the open back doors to a police transport van in the middle lane, to my left. I drove past it, frightened because he was clearly an escaped prisoner. Had I been able to see him better, I might have noticed the gun in his hand aiming at me, demanding that I stop for him, and I might have been terrified into slowing down. 

For all of five seconds, the feeling came over me that G-d watched out for me, despite the fact that I no longer believed in G-d. 

I saw the icy blueness of the river looming in the distance, the heavy metal scaffolds of the bridge, and knew then that there was no way to get off this road before I traveled even further from my home.

I made myself wake up.

Only to realize that I'm still spinning down this highway of life, that I'm not where I'm supposed to be. Only to realize that I cannot escape the furious pace of life with a child who's ill, whom I do not have the wherewithal to save single-handedly.

There are no exits in my life. There are no alternatives. I must follow this path as it leads further away from anything I ever imagined, must follow this path that leads me into vertigo from spinning out of control. 

I cannot make sense of a kid suffering. My child says that he lost much of his childhood; my husband and I also grieve. The money that we used for medical bills would have paid for trips to other countries, Broadway shows, activities, lessons and dinners out. The hours, days, years we incurred traveling from doctor appointment to doctor appointment could have been delightfully whittled away with bicycle rides, ice cream parties, family trips to museums and movies.

I cannot make sense of a disease that has not got a cure. A disease that is disregarded by doctors, disrespected by the very medical community that misdiagnosed my child, misunderstood by the general population. 

We have been deprived of some of the best years with our children as children. We know all too well what we have lost--the joyous laughter of two little kids playing together, pretending to be mommy and daddy to the monkey dolls we bought for them at the zoo, the kids zipping by us on their tricycles, then learning to ride bicycles without training wheels, the squeals and giggles as we shoot whipped cream from the can into little open mouths.

How do we get this back? How do we save our children--and by that, I mean all of our children, our collective children who suffer from misunderstood diseases, who are left on the sidelines--or no lines at all while others participate, achieve, advance through life? How do we ensure that they even make it to adulthood? How do we help them to have decent adult lives?

There are no exits for my child, for my family. I do not know why. I do not see a greater meaning to anyone suffering.  

We need to turn our lives around. Somehow. For that, I need a better GPS.

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