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The Mailing List
fourteen families, one e-mail at a time · back to the sketchbook
PLATE 8. A map of the United States. Colored pencil.
Fourteen small stars scattered from Washington to Georgia, and a fifteenth, a little bigger, in the corner of Arizona where I live. Dotted lines connect every star to every other star. It took a long time.
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What it is. The list is a group of families who live with Moebius syndrome. When you write to the list, your letter goes to everyone on it, and when anyone else writes, you get theirs. We started in the fall of 1997 with two families. Now there are fourteen, plus me. Some weeks there are thirty letters, some weeks three. In August there were a lot, because school was starting and everybody had a teacher to explain things to.
Who it's for. Parents, grandparents and other family of people with Moebius, and people with Moebius themselves, teenagers and up. It's a small, friendly list and I'd like to keep it that way.
How to join.
- Send an e-mail to me at [email protected] with MOEBIUS LIST in the subject line.
- Tell me a little about yourself: your first name, who in your family has Moebius, how old they are, and what state you're in. That's all.
- I'll write back, usually within a day or two (longer if it's deadline week at the office), and add you to the list. I'll send you the list address and a welcome letter that explains how it works.
- Introduce yourself to everybody. Then brace yourself. People will write back.
Our few rules.
- Be kind. Everybody here is tired some of the time.
- First names only on the list, and no home addresses or phone numbers. If you want to trade those with somebody, do it privately.
- We share experiences, not medical advice. "Here's what our doctor said and here's what happened" is wonderful. "Here's what you should do" goes to your own doctor first.
- What's said on the list stays on the list. Don't forward people's letters without asking them.
- Friday is brag day. Lost teeth, report cards, first words, first dates, all welcome.
Meet the families. Everyone here said yes to being listed. First names, the age of whoever has Moebius, and the state.
Jodie and Jordan, 3 · Arizona
The one who started it all. Jordan is in a preschool program and has more words every week. Jodie is our unofficial librarian; if anybody ever wrote it down, she has a copy. |
Kimberly and Curtis, and Emily, 5 · Ohio
Emily started kindergarten in August, and her whole class came home knowing the word "Moebius." Kimberly wrote her teacher a letter that half the list has since borrowed. |
Lisa and Matthew, 10 · Oregon
Matthew plays the trumpet in the school band. Yes, the trumpet. His speech therapist thinks it's the best exercise he's ever had. |
Christy and Mark, and Katelynn, 1 · Texas
Our newest family, since July. Katelynn has had a hard time with feeding and is gaining ground. Christy writes at three in the morning and somebody always writes back. |
Marcella and Blanca, 13 · New Mexico
Blanca raises rabbits in 4-H and took a blue ribbon at the county fair this summer. She also draws, and has asked me for lessons, so we trade sketches by mail. |
Milton and Sheila, and Ashley, 14 · Pennsylvania
Ashley had the smile operation last year, and she's been patiently practicing ever since. She's the one to write to if your family is thinking about it. |
Marvin and Rose, and Justin, 3 · Georgia
Justin has clubfoot along with the Moebius and just got out of his last cast. Rose reports that he now runs everywhere and walks nowhere. |
Herbert, 45 · Michigan
Herbert has Moebius himself, like me, and we were born the same year. He's a postal clerk and the funniest writer on the list. When the parents want to know what it's like to grow up with it, Herbert and I take turns. |
Dale and Valerie, 8 · Washington
Dale is raising Valerie on his own and is the reason the list has a dads' corner. Valerie is a Brownie and an excellent speller. |
Rufus and Jason, 5 · Alabama
Jason's eye doctor is a wizard, and Rufus has passed along everything she taught them about keeping eyes from drying out. Ask him. |
Allan and Brittney, 9 · Iowa
Brittney tells terrible jokes on purpose. She sends one to the list every Friday. Some of them are good. Most of them are terrible. All of them get answered. |
Kristine, 18 · California
Kristine has Moebius and just started college. She joined to "help the little kids," and she has. She wrote the list's best letter so far, about her first day of high school, and we've read it to more than one nervous child. |
Clayton and Maribel, 4 · Colorado
Clayton and I wrote the little talk for Maribel's preschool class that's on my main page. Maribel's speech therapy is going great; her "p" is better than mine. |
Homer and Amber, 13 · Kentucky
Amber sings in her church choir, and Homer says nobody who has heard her has ever once wondered how she feels. He's right. She mailed me a tape. |
That's fourteen. There's room for fifteen, and sixteen, and as many as need us. If you've just found out, and you're scared, and it's late: write. Somebody on this list has been where you are, and they will answer you.
[email protected]
back to the sketchbook
list page last updated August 29, 1999
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