As is usually the case when I haven’t posted in ages, sometimes I feel I should emerge just to let people know I’m not playing possum and I’m really still around. Just a lot of things going on. Also, I usually talk about something that has nothing to do with writing, but this one is very dear to my heart.
Lief is a child I first met when he was three when I was in a practicum. I worked with him in kindergarten and 1st grade. He is, to try to put it succinctly, an awesome, brightly shining little guy who is very caring, kind, and affectionate. He also has autism. He is in Stanford Children’s Hospital in Palo Alto right now with a serious heart condition. First he was refused treatment by some children’s hospitals because of his autism (how he’d be as a patient) and then, Stanford took him in (serious kudos to Stanford.) He went to Doernbecher in Portland for heart surgery and is now back in Stanford waiting for a heart transplant he almost didn’t get on the waiting list for because…he has autism.
I don’t even want to go into all that, despite my myriad of opinions on it. He needs positive energy. He’s a little 10 year old boy who has very bravely gone through what many adults wouldn’t deal with as well as he has.
There’s a page about what he’s gone/going through on Facebook, Life for Lief. Right now he’s having trouble taking his pills. If he doesn’t take his pills, this could be the end of everything he’s been through. So, if you have a second, just think, “Lief, take your pills.” It really is a matter of life or death for him. Maybe if he feels energy coming in (if you believe in that sort of thing) it will help him. How do you explain to a child with autism that he really has to take these pills? It sounds like right now it’s a combination of the fact that he’s feeling very nauseous and he doesn’t like the sensory feeling of the pills or the taste. I think he needs to be able to take them in pill form and not through the IV in order to be ready for a transplant–I’m not positive, I’m just guessing.
There are a few links I wanted to post–since I’ve worked with him last, he’s learned to type, or touch letters on a board printed out to look like a keyboard (more portable. He’s not the first person I’ve seen using this technique of communication). One is just sentimentality for me because we used to watch it over and over on his choice time (and I learned about Snow Patrol and found out I sort of liked them), and the other (If I can really actually manage to post these links) is a video by thebegoodtanyas–they know about Lief and his family, and apparently Lief is a big (huge?) fan of theirs. They are playing live in Eugene and are dedicating this song to him. One of the members wrote on his FB page in the section about taking his pills, and that makes the dedication all the more special. All of these are links to YouTube except for the one to About.com.
Train Video #2 — Snow Patrol (Run)
thebegoodtanyas–The Littlest Birds
And last, but not least, Lief, take your pills!
Lots of love and I’m thinking of you,