Wednesday, August 27, 2014


"Research shows that classmates of a handicapped child will often defend the child instead of teasing him if they know what is happening to the handicapped child." 
                -- The Psychology of Duchenne Muscular Dystrophy by Jos Hendriksen, Ruben Hendriksen,
                               Justus Kuijer and Elizabeth Vroom

We've made it a tradition to educate Rain's classmates each year about him and about his Duchenne. They are first graders now, somewhere in between the sweet dreaminess of younger days when they wouldn't have even noticed that Rain is different and the more conscious and curious days of middle childhood when kids left to their own devices can be stunningly irrational and cruel. I am in favor of information and education. I believe that even very young children can have tremendous compassion and dignity when they understand what is going on around them.

And sometimes it just makes sense to strap heavy weights to their arms and legs.

The class gave me about 20 minutes of their time during the first week of school. Here's what I told them:

* Rain has Duchenne Muscular Dystrophy. It is something that he was born with. It is not contagious. It's just part of who Rain is.

* Duchenne means that as Rain's body grows bigger, his muscles grow weaker and weaker. This can make things feel really heavy to Rain and he might get tired more easily.

* Rain uses his wheelchair to get around when he has to go a really long way, like to the lunchroom or recess, because he gets tired on a long walk.

* A person's wheelchair is a little bit like a person's shoes or pants. It's ok to say, "hey, I like your pants." But it would be really weird if you suddenly put on someone else's pants in the middle of the school day! So we don't sit in Rain's wheelchair. If you want to touch Rain's wheelchair, you need to ask him first and he might say yes or he might say no.

* Because of Rain's Duchenne, he has a really big "personal space bubble." We need to make sure that we don't accidentally knock him down or jostle him too much. Especially when he is getting up and down from the floor, Rain needs plenty of space so he doesn't fall down and get hurt.

* Rain is a really fun guy and people should play with him! He's smart and he's funny. He has some special toys that he can bring out to recess if he wants to (bubbles, sidewalk chalk, little toy cars, card games). If you would like to play with him, please do! But remember that you may only play with Rain's toys if you are playing with Rain.

* Sometimes Rain likes to play running games too and that's fine but there's a special way to do it. (This is the part of my presentation that Rain loves because he gets to demonstrate with me.) I ask the kids if they think that I can run faster or Rain can, and of course, they think that I can. I tell them that they are absolutely right and then Rain and I demonstrate by each running as fast as we can as though we are in a race with each other. Then I point out that when I run as fast as I can, I might win the race but oh no! I'm accidentally not really playing with Rain anymore, am I? So then Rain and I demonstrate a race where I'm careful to run as fast as Rain can, not as fast as I can. I ham it up and overplay my "running" and let Rain win but only by a little bit. I point out that when I run as fast as Rain can, we are really playing together and it's a lot of fun. Rain always obliges by giggling uproariously and clearly showing that he thinks this is the funniest game in the world. It's hilarious.

At that point, my remarks to the group were finished and I asked the kids to come visit me one at a time so that they could try on the weights to get an idea of what Duchenne might feel like.

I make a point to speak to each of them while I strap the weights on. I am very careful to remind them that the weights are a tool we use to help our imaginations to understand what Duchenne might feel like. I remind them that only a person who actually has Duchenne can truly know what Duchenne feels like from the inside.

Most of the kids agree that the weights are really heavy. As soon as they feel their arms and legs drooping, they are usually very clear on how it could make a person extremely tired to feel that way all the time. I ask them to walk a little, to try to lift their arms, pick something up off the floor. I ask them to imagine wearing the weights as they walk to the lunchroom, to the library, out to recess. Could you put your backpack up on one of the pegs in the hall? Could you carry one of the big bins of crayons in the art room? What about brushing your teeth?

There always seem to be a couple of boys who feel some kind of compulsion to show off. They declare that the weights are not heavy and that they could do all of their usual things without trouble. I look them in the eye and tell them to imagine the weights doubling, tripling as time goes by. I tell them to imagine having those heavier weights all over their whole bodies, day and night, all the time getting heavier. When I'm patient, there almost always comes a moment when their guards drop and they realize that I am really not kidding-- that this is something in deadly earnest which I am trying very hard to convey to them. 

Rain has never had any trouble with bullying or teasing. Part of that is the wonderful culture of the school he attends, but part of that can only come from inside a person. They're good kids at heart.

Monday, August 25, 2014

Back to School

It's official and it has really started. I have gone back to school to get my Master's Degree in Creative Nonfiction Writing. I've got things (mostly) lined up: classes, internship at the literary magazine, job at the writing center.

My eternal gratitude goes out to my family for supporting me in this wild endeavor. They are troopers and heroes. But you knew that already.

My Study Buddy

And one of them keeps interrupting our tiny study group to spontaneously exclaim, "This math is just so much fun!"

Friday, August 22, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.

Tuesday, August 19, 2014

First Day of School

Over the years, we have developed a tradition for the first day of school.

On the way there, in the car, we play two songs very loudly. They express my feelings about my kids going off into the big, wide world: Hazel's song and Rain's song. Scott says that I am both cheesy and sappy at the same time. I say that if I'm not cheesy and sappy for our kids, who will be?

And then, when we do get to school, the kids always try to escape/ruin the obligatory first day of school pictures. I don't tell them that I think this makes the pictures that much better. They're still young enough that the running and squealing (and laughing) is genuine as well as hilarious.

Action shot

First and Fourth Grades

Happy First Day of School!

Monday, August 11, 2014


Most years we find ourselves on long, long car trips around the United States, going to the PPMD Conference, visiting distant relations, stopping to do a few fun things along the way. This year we didn't do that. We stayed in our home state (entirely within which a person can easily do some long, long car trips), going to PPMD FACES events, letting distant relations come visit us, stopping to do a few fun things along the way.

Down to the Springs area for one busy weekend--

We stayed at our favorite Bed and Breakfast.

We went to the zoo with our FACES group, or as the kids say, our Duchenne friends.

We got outside and saw some iconic Colorado scenery (and some unexpectedly enormous crowds, though we did manage to get a few minutes by ourselves on the trail).

And it wouldn't be a real summer for us if we didn't stop in at the Renaissance Festival. It was on the way home anyway.

Good times.

Friday, August 8, 2014

Accepting Reality is an Essential Part of The Good Life

Dear readers, I am the kind of person who has a lot more enthusiasm than consistency. I don't necessarily see that as a problem. As long as I am facing my reality squarely, I see no reason to hold back from changes that feel natural to me. So for now I am wrapping up my essay series, "The Good Life ... with Duchenne". This by no means represents the abandonment of my ongoing project, to actually live The Good Life ... with Duchenne and to report it faithfully to you. Rather, this is my nod to reality and my attempt to preserve my sanity by accepting that I must refocus my efforts here from deadline-oriented production to more thoughtful, more sporadic offerings-by-whim.

I have just begun my next phase by enrolling in a Master's Degree program for Creative Nonfiction Writing. I look forward to great challenges and great growth. Over the next few years, therefore, I humbly request your patience and sympathy, dear readers. I have never done anything like this before.

Count on to continue to provide updates, original photographs, musings, essays, and information as I am inspired to present them. And thank you, dear readers-- for keeping me company, for bearing with me, for rolling with the changes as they occur.

Friday, August 1, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.