Saturday, November 16, 2013

This boy...

Sometimes I see all of this lined up, and am at once saddened that he needs so much medicine, and grateful that he has what he needs to be healthy.  This is our nightly routine...10 medicines crushed, dissolved, sprinkled and drawn up.


This does not include the other two times a day he gets medicine, and the creams and powders, and injection, and vitamins and supplements he gets every day.  Then there are the rescue medicines and occasional medicines.

I feel like a drug pusher some days.  But then, he smiles...and laughs...and yes, it's all worth it.   It's not ideal.  It's not what I imagined.  But it is all worth those smiles.

Today, I took a piece of poetry up to Max's classroom.  We've had a terrible time this year connecting regularly through the internet with his class.  It's a shame that we're so close to the school, and yet, he and his friends are not able to chat because of internet issues within the school district.  They all miss each other's company, and it's frustrating to say the least that they're all missing out on special times together.  Max wanted to share his work with his class, so I ran it up there for them to have it.

His classmates made him birthday cards, and wrote poems for him for his birthday.  We read through each one of them, and he loved all the pictures they drew for him.

(being lined up and sprayed with Lysol before Max got them)


He has been working in speech therapy to reply to his class since his birthday.  As I wrote about last, it's been many months since Max has been able to stay awake through therapy.  This week, he decided to give us months worth of words to relay.  Max wanted to write a poem back to his friends, instead of a thank you note.  Like all poetry, it's up to you to interpret some of it.  But, Ms. B. and I loved it.  And Max loved it.  And when I delivered it to his class today, they all were happy to get it.


This is what he chose to write:

Thank you
Dance Within
Jack Easier today tone.
Eat halves of a camper 
accepted bygones

Some background knowledge; he was telling the class "Thank you" for all of the poems and cards for his birthday.  He said they were "yum" - all the cake pictures is my guess.  "Dance Within" - Max shows his ultimate happiness by dancing.  
"Jack easier today tone." - he was listening to Jack Johnson, one of his favorite singers.  "Eat halves of a camper" idea, but he cracked up when he said it.  "and accepted" - Max often says he's accepted by his classmates, he truly appreciates that.  "bygones" - he started with by, to end the poem, and then went with bygones.  "Campsites"...again, no idea where he was going with that.  

He chose a green background, with yellow paper to write on.  He chose orange marker to write the poem out. And then a red paint pen to draw leaves.  

I suppose we're going to add poet to his title of opera singer, musician, artist and Batman.  

You see, that's why even though it pains me sometimes to pump him with drugs, I know they're giving us this boy.  Our incredible boy.