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A holiday wish for the warped, frustrated hospital we call Children's (Or, Risperdal, Adderall, to hell with it all)

December 17, 2017

 

 

I volunteered at the Jimmy Stewart Museum in high school. This was before the days of high school students being required to perform a minimum number of community service hours in order to graduate (compulsory volunteerism. interesting concept). I'll admit, though, I didn't choose to volunteer there out of a passion for preserving the legacy of Jimmy Stewart. I was determined not to stay in my tiny hometown. I wanted to get into a good college and wipe the dust of that town off my feet and see the world. So, I needed to fill up my resume.

 

Appropriately enough, this is the same ambition George Bailey held. Jimmy Stewart played George Bailey in the movie "It's a Wonderful Life." I still, at the age of 38. am amazed every time I encounter someone who hasn't seen this movie. The product of growing up in Jimmy Stewart's hometown I guess. For all you oddballs who haven't seen it, I will enlighten you.

 

George Bailey grows up in the small town of Bedford Falls. His father runs a small Building and Loan that loans ordinary people the money to buy a house. Opposing him is the evil, greedy Mr. Potter who owns the local bank. He charges high rates and kicks people out of their house when they can't pay. All he cares about is money.

 

George is determined to grow up and leave Bedford Falls and do great things. Due to a series of life events, this never happens. He ends up running the Bailey Building and Loan just as his father had. Helping the people of Bedford Falls by being a fair and compassionate businessman as his father had. Working long hours for sufficient but modest pay as his father had.

 

There is a scene in the movie where Potter is attempting to shut down the Building and Loan after George's father dies. He talks about the compassionate way Peter Bailey ran the Building and Loan and says, "What does that get us? A discontented, lazy rabble instead of a thrifty working class. And all because a few starry-eyed dreamers like Peter Bailey stir them up and fill their heads with a lot of impossible ideas." George tells Potter off with one of my favorite monologues of all time.

 

"Just remember this, Mr. Potter, that this rabble you're talking about... they do most of the working and paying and living and dying in this community. Well, is it too much to have them work and pay and live and die in a couple of decent rooms and a bath? Anyway, my father didn't think so. People were human beings to him. But to you, a warped, frustrated old man, they're cattle. Well in my book, my father died a much richer man than you'll ever be!"

 

(watch it here )

 

 

As you have treated the least of these, so you have treated me.

 

I didn't know then, at eighteen, what I wanted to be. But I knew whatever it was, I wanted to do it with the same integrity as George Bailey.

 

Fast forward 20 years. December 2017.

 

Max is almost 6 weeks post-IVIG #3 and seems to be responding. It's up and down. He had a good week where he played and laughed and ate a raspberry (!) A raspberry. You know, the *fruit* that has *tiny hairs* on it. A Christmas miracle if ever there was one. Then he had a few bad days where he sobbed for hours and stayed up til 6am with racing thoughts, tics and fear. Always fear. He and Auggie and Lena and I all slept on his bedroom floor (well, we slept off and on. He didn't) If you're one of the patients I saw the next day, I'm sorry if I didn't bring my A game.

 

Max fell off the cliff for the first time in 2009. He fell off again in January 2017. Hoping for better times in 2018 for my Max.

 

Hoping for better times for all the families I take care of in 2018.

 

But amidst the love and hope and sadness and heartbreak, I am angry too. Angry at the Potters of the PANDAS world.

 

How many children are out there right now with PANDAS and their parents have no idea? They're carrying diagnoses of OCD and Tourettes and anorexia and ADD and ODD. Being prescribed Risperdal and Adderall and to hell with it all if the parents insist there's something else going on.

 

How many children are out there right now with a diagnosis and no access to proper treatment? Physicians unwilling to treat. Insurance companies unwilling to pay.

 

How many? We don't know. But it's more than we think.

 

I look at my son lying on the basement floor wrapped in a sheet, wearing the same inside out backwards white undershirt he's been wearing for days, sobbing deep guttural cries. "I'm so sad, mommy. I'm so sad. I'm so sad. I just want to die." I ask him why he's sad. "I don't know. I'm just sad." 

 

Hell is a place where you are outside of God's love. PANDAS truly is hell. He feels abandoned by God. Abandoned