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

Wednesday
Jul042012

Are These Kids "Normal"? Just Watch....

If you have just four minutes, watch "Dreams Come Alive." I promise you won't want to turn it off. In fact, you might watch it twice.  This was created by Marcel Cairo, one of the thousands of courageous parents who have a child with PANS. His artistic video shows the beauty of childhood, adventure, joy. But don't take my word for it. Just watch. 

The following is Marcel's description:  "A father takes his two kids on a breathtaking journey in a blue minivan looking to help heal his daughter who suffers from extreme germaphobia and a severe anxiety disorder. From Texas to New York, and living thousands and thousands of miles of adventure, a smile finally returns to her heart and her mind. Dreams come alive when you feel it inside."

If you were to meet my own oldest child, my son, you would have no idea, at first, that he suffers from PANS. He loves playing with friends, football, skateboarding, bicycling, roller-blading, ghost-hunting, Ozzie Osbourne, America's Got Talent, writing raps, and Shakespeare (really, Shakespeare!) And all he wants is to be a "regular" kid like his sister. It hurts my heart that friends no longer call him as once they did, how he struggles to maintain his social standing, academic standing, emotional stability.  In his own words: "This is a nightmare. I just want to wake up."

Yet, often when doing something fun, the real little boy within my son appears, like strands of sunlight in the midst of a bloated, rainy day. Despite the low frustration tolerance, the tic-ing, the silent counting of each step, the rage...my boy is still here with us. 

This short movie captures what it's like for that "regular kid" to shine despite a disease. Thank you, Marcel, from my family to yours.

 

 

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Reader Comments (1)

Thanks for taking us inside your family, Lisa, and sharing all the hopes and dreams that grow there.

July 20, 2012 | Unregistered CommenterMarcel Cairo

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