goodbye McQueen

It's no secret to anyone who knows Hunter- he LOVES Lightning McQueen.  Like, really loves him.  He started to get really good at coloring and drawing McQueen, and his new obsession was to put the pictures all over his walls in his bedroom.  

 So these drawings started to overtake the walls around his bed.  And then he added stickers, coloring pages, and anything related to Lighting McQueen. 

He loved to be surrounded by his buddy.

And I took that away from him today.

I was cringing with every sticker I pulled off his wall.  Every meticulous drawing, every coloring picture that I used to pray for at night...I took it all away. 

I have a theory that I need to test out- every since he started putting these drawings next to his bed, he stopped sleeping through the night and woke to search for electronics to watch his McQueen videos on YouTube.  I hypothesized that when he wakes, the first thing he sees is Lighting- and his mind doesn't shut off.  The night he went to bed obsessing about a new McQueen, he woke at 2:30 AM still talking about him, and continued until 5:30 AM when he finally fell back asleep for a few minutes. 

It was like he was manic.  I use that term lightly, but it scared me enough to realize that we needed to intervene.

I put all of his drawings and stickers on the inside of his closet door and the outside of his main door, which I will open during the day, but can shut at night.   I changed his sheets to plain white ones.  And, just for nighttime, I hid all of his blankets and pillows that friends and family lovingly made for him, just in hopes that he will sleep through the night.

 

But now, if you lay in his bed, and you open your eyes, instead of seeing a smiling red car that gives our boy so much joy, you see a "empty room," as he told me tonight.  Even though he exclaimed, "Cool!" when I showed him his closet, a little part of me died as I knew I took away the one "friend" that he could count on.

 

So today, I hate myself for taking away everything that is everything to him. 

 

Tonight, I also hate Autism.  I hate what it does to our family.  I hate what it does to my friends' families. I hate what it does to my patients' families.  I am tired and emotional, due to his night waking from 4-5AM last night, and Peyton coming in at 5:30, and I know tomorrow I will wake up and profess my love for this journey... but tonight I am going to allow myself to dislike this disease that needs answers. 

 

The hardest part about inflammation is that it is a constant rollercoaster, a Jekyl and Hyde appearance, and I don't know how to control the uncontrollable variables.

 

And the reason I am so angry at Autism tonight is because we have seen him at his best.  We have seen the child that I truly thought we were bringing back- and he is disappearing faster than I can catch him. 

 

I knowingly took away his passion today. 

 

And it took away my passion for this journey.