Tag Archives: Lief





Thank you so much to his donor family, who in their time of grief and loss, gave life to a sweet, remarkable young man.

You have done a beautiful thing. Blessings to you, your family, and your friends.


Revelations and Black Holes

Lewis Carroll Memorial Guildford   Sometimes it feels as if you are revealing parts of yourself, splattering them onto the computer, and they simply disappear into black holes. Emails, blogs, works in progress, comments on forums. All the years it has taken to get enough courage to write to complete strangers in the faith that someone somewhere understands the gibberish you’re speaking through the help of a babel fish or something of the like.

I was going through images looking for something from “Alice Through the Looking Glass,” and found pictures of this sculpture. It is in Guildford, at the last place Lewis Carroll lived, although he didn’t write those books there. It’s a little sinister, I think. I don’t know what it would feel like to see it in person. No comments about Han Solo and carbonite.Memorial from the Front

What makes a person respond to another person, and what makes them ignore the person standing next to the person who’s noticed? It’s all very strange. There’s this thing in autism that’s called the “hidden curriculum”–basically all the little social cues neurotypical people pick up that people with autism don’t. How to take subtle hints when someone wants to leave, reading body language in a conversation, things along those lines. Things that we supposedly learned unconsciously. Sometimes I feel like I didn’t learn all of those things the way I was supposed to, even though I don’t have autism. I was just a sheltered nerd.

This is probably why I like writing so much. I can give my characters the perfect thing to say as a retort in an argument because I have time to think about it, whereas if it were me, what I’d say would be more along the lines of, “Well, wha…I’m rubber and you’re glue and everything you say bounces off and sticks to you. Nyah.” If I could even come up with that. I don’t fight very often with anyone, not even my SO. I don’t like conflict, but there are some things I won’t back down from. I suppose that’s not even entirely true. I was so fed up with work, and tired of dealing with them–no one was on my side, and no one was going to listen to me. It seemed like quitting, while it fit perfectly into what they wanted me to do, was at least something I was doing to them instead of something they were doing to me. Of course, a little over a month later, I’m trying to be optimistic about finding a job that won’t send me into a tailspin again.

Remember Lief, the little boy with autism that I mentioned a while ago? Since then he’s had two open heart surgeries because the machine that keeps his valve pumping keeps clotting, then his blood antigen levels went to 100%–which meant his immune system could fight anything, including the heart transplant that he needs, because no heart would match as his body would fight anything. The doctors decided to try something on the chance it would work after nothing else did–they gave him the treatment that transplant recipients usually receive after they’ve had the transplant, and his blood antigen levels went down to 11%, which meant he was back on the path to being able to get a transplant again. Then the machine for his valve clogged again, and Saturday he had a stroke which affected the left half of his body. It wasn’t a bad stroke, he can still communicate using his keyboard pad, and he doesn’t seem to have suffered any cognitive damage. He’s had his 10th birthday in the hospital. This ten-year-old has been through more than many adults, and he keeps soldiering on. There was talk of palliative care at one point, but he didn’t want it. I called him the Energizer Bunny sometimes when I worked with him, and gods, is he ever. He really hasn’t changed much since he was six, except now he can communicate, which is wonderful. So while I feel a little down, I just keep trying to remind myself, “If Lief can do it, I can do it.” He is one incredibly special little guy, and if everyone who reads this could stop for a second and send him a happy thought, that would be nice. It doesn’t matter where you are, he’ll know.


Life for Lief

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,