Tuesday, July 22, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.

We watched the World Cup. Well, not every single game, but most of them. Normally, this is a life experience that wouldn't warrant a % Because of Duchenne rating at all, but this year Rain used many of the games as a good opportunity to get used to his new stretching boots.

Fun level: 50%
Because of Duchenne level: 5%

Monday, July 21, 2014

We Never Do Anything Fun Around Here

As you read in Hazel's and Rain's interviews last week, We NEVER Do Anything Fun Around Here. And none of it is ever related to or inspired by Duchenne or my feelings about Duchenne. I'm sure you believe them. We will explore this theme through photography over the coming days to illustrate their point.

Exhibit A

Exhibit A shows Rain and Hazel eating ice cream on a lovely summer afternoon in Fort Collins. What is not shown is the fact that the ice cream was paid for by our pediatrician's office as a post-vaccination reward program. We also went to the toy store because that had been my planned post-vaccination treat before I knew about the new ice cream program. 

Experience Rating (Parental Perspective) --

Fun level: 85%
Because of Duchenne level: 75%

Friday, July 18, 2014

Friday Photo

Friday Photo

A single photo, every Friday. No words required.

Wednesday, July 16, 2014

An Interview with Hazel

An Interview with Hazel, age 9

Interviewer: Do you think about Duchenne every day?

Hazel: No, not a lot.

I: When do you think about it?
H:  I think about it whenever we're at the hospital. And whenever we're swimming.

I: Why when we're swimming?
H: Because Rain always needs help.

I: But he's a pretty good swimmer.
H: I know that he's a pretty good swimmer but he always need extra help getting in. And the way he gets in is different from most people.

I: Do you feel like Duchenne is intrusive in our family life?
H: What does intrusive mean?

I: It means like it gets in the way. It intrudes. It butts in.
H: Somewhat.

H: It kind of makes it hard for us to do the things that I want to do because of Rain.

I: What do you want to do?
H: I knew you'd ask that question! Well, I want to go ice skating more often and I want to learn how to roller skate. I also want to bike without having too much effort into getting ready. Like to just hop on, do your things and go, not waste so much time with getting a trailer ready.

I: Do you feel like we have ever had a chance to do something really fun or special because of Duchenne?
H: I've got to ride in when we were skiing I got to ride in Rain's ski contraption cause I was really tired.

I: Anything else?
H: No. Wait there is something. I've got to ride in Rain's bike trailer/walking trailer when I was really tired on the trail.

I: So those are the only special things we've ever gotten to do?
H: Those are the ones that I've gotten to do.

I: What about our whole family? Do we do anything special because of Duchenne?
H: We go down to Denver a lot. That isn't really something special.

I: If we could do anything this summer what would you want to do?
H: Like for real? Or just for imagining?

I: Both.
H: Well I'd like to go on a ride on horses to a lake and spend the day. Or somewhere in the wilderness.

I: That would be awesome!
H: It's kind of imaginary and real at the same time.

I: If you could do anything you wanted to, all by yourself without your family, what would you want to do?
H: I want to go to Teton Science School and stay with Grandma and Grandpa all by myself.

I: Could we join you after your week at TSS? And all go to Yellowstone together?
H: Yeah. That would be fun.

I: Wanna go camping? with bears??
H: nods head for camping. giggles and shouts No! with bears. Or ginormous freaky squirrels.

Monday, July 14, 2014

An Interview with Rain

An interview with Rain, age 7

Interviewer: Do you think about Duchenne every day?
Rain: Sometimes I forget but mostly I think about it every day.

I: Do you think that Duchenne is important?
R: No.

I: Why not?
R: Because it's just something that some people have.

I: What is the best part of summer vacation?
R: You get to do whatever you want if your parents say you can.

I: Like what?
R: Like at a fair. Or when your parents want the children to grow up doing like a lot of stuff.

I: Fun stuff?
R: Yeah. Fun stuff.

I: Like what?
R: Like coming back with a few things?

I: Are you thinking about Charlotte's Web?
R: No, I'm thinking about the Renaissance Festival.

I: Do you think that your parents try to get you to do a lot of fun stuff?
R: Yes and no. When you're at somewhere exciting then your parents let you but if you're at your house or somewhere that you have to be patient, your parents might not let you.

I: What would you do if you could do anything without your parents?
R: You could play as much as you would like and you would do whatever you wanted to.

I: What would you want to do?
R: Anything.

I: Do you feel like our family tries to do too much stuff?
R: Yes.

I: Do you think that is because of Duchenne?
R: Yes and no. Sometimes yes, you would be going to the hospital a lot. And whenever it's not time to go down to Denver, not that much.

I: Do you feel like you've ever gotten to do something really special because of Duchenne?
R: After doing something exciting.

I: Then you feel like it was because of Duchenne?
R: Kind of.

Monday, July 7, 2014

On My Bedside Table

This is my bedside table.

Been a while, hasn't it?

It is always full of stuff I am going to read soon, stuff I just read and haven't put away yet, and stuff that I am reading right now. I thought that since writers read, and you read what I write, you might like me to write about what I read. What's on your bedside table?

Top Shelf: What I'm Reading Now

:: Essays of E.B. White by E.B. White

I'm not sure how I managed to get this far in life without ever having read any of the primary genre of one of my favorite authors. Of course I had read Stuart Little, Charlotte's Web, and my favorite, The Trumpet of the Swan as a child. As an adult and an essayist myself, I have so much appreciation for these wonderful essays now. Who wouldn't love to read something so fun, so amusing, so erudite, and so humane? Dear Mr. E.B. White, you are my hero. I will read your stories about funny ducks and grumpy dogs and wood burning stoves and eccentric old men any time.

:: Colorado Review various issues, published by Colorado State University

I have managed to secure myself an internship at a literary magazine! My boss/professor has leant me a whole stack of back issues to study so that I can familiarize myself with the style of writing that I'll be working with over the coming year. Culturally interesting, though not always actually interesting, stuff. I'm simultaneously wondering what on earth I've gotten myself into while hoping that I'll be sucked in deeper-- deep enough to be fascinated and moved. This issue didn't thrill me, though subsequent offerings were better. I'm not sure what's with the academic obsession with trauma/perversion. I can't tell whether I hope that I write like that or not. I guess that's ok at the beginning of an education.

:: Creative Nonfiction issue 51

Ugh. It is rare that an entire book or magazine is so revolting in subject matter and tone that I am willing to get rid of it. This issue kept me up late one night caught in a nauseating involuntary mental-replay loop of disgust, horror, anger, and pointless spite. Even after chucking it into the recycling bin with unusual ferocity, I needed another hour of uplifting literature and aroma therapy before I could even think about going to bed, let alone sleep. I picked this up as a trade magazine to give myself a little boost toward starting my Creative Nonfiction Master's degree program in the fall. The latest issue just arrived in my mailbox last week but I've been too afraid to open it. Isn't there a place for interesting, true stories that have some iota of uplift or humor?

Bottom Shelf: What I'm Transitioning

I've really got my summer reading cut out for me!

:: Issa's Best: A Translator's Selection of Master Haiku by Kobayashi Issa translated by David G. Lanoue

"Spring rain--
a child gives a dance lesson
to the cat" 

What's not to love?

:: A Room with a View by E.M. Forster

If I am going to severely limit my fiction reading, I'd better make it count! A Room with a View is the antidote to all things unfunny and inhumane. I even love Cecil Vyse a little bit I think.

As for the rest of it-- things I think I should have read by now. Things I think might give me more perspective on writing nonfiction well. Things my sister gave me that she thought I might like to read. I'm looking forward to sinking my teeth into these soon, too. Summer reading and yoga: healthy life.

Friday, July 4, 2014

The Good Life ... with Duchenne: Independence


Right now I am sitting at my computer, catching five minutes to put a few sentences on a page while I wait until it is time for me to start work at my new job. I love the work I get to do, the hours are fine, the commute is perfect. I have just begun working as an In-Home Support Services Health Maintenance Attendant (IHSS-HMA) for the best client ever: my son Rain. 

My duties are fairly simple, but time consuming. I help Rain get into and out of bed. I help him with his oxygen. I take off and put on his AFOs, which he uses for passive stretching overnight. I help him with brushing his teeth, since he has a hard time with repetitive-motion fine-motor skills. I help him take his medicine and rinse his sinuses, since trial-and-error has shown that he needs adult supervision and assistance. I help him take a bath. I help him do an array of stretches, both specifically-recommended-for-Duchenne and some gentle yoga-based stretches.

Rain knows that he is the client, the man in charge. He must properly manage and evaluate his health care workers. He has the power to hire and fire specific HMAs through the agency from which he receives care. I am just lucky enough to be employed by the same agency, which makes me available as a potential HMA to Rain. He takes great pride in monitoring my professionalism, making sure that I am wearing my badge, washing my hands, and treating him with the respect and propriety which is his due. He is more scrupulous than I am, remembering the rules and limits far better than I do. "Mom! A healthcare worker should never kiss me! No tickles! You're supposed to be a professional right now; you're wearing your badge!" 

I am so proud of him.

A young man with Duchenne has a destiny to fulfill. Rain knows that it is likely, virtually guaranteed, that someday he will find his body too heavy to move. Someday, when he's a man, he knows, he will need to ask for help with almost every physical function. He knows that he is in training now, preparing for the day when his healthcare workers will, at least occasionally, be people other than mom and dad. 

Learning how to manage the team that provides his care is our way of teaching Rain independence. A man or woman whose body does not move can still be a fully independent person by using the skilled power of his or her mind and voice. He or she may be a person with a full-time staff, an entourage even, but his/her independence comes from the way in which he/she directs his/her employees. A king, president, CEO, movie or sports star may do very little practical work for him/herself too. Imagine a king preparing his own breakfast. Imagine a CEO doing her own housecleaning. Imagine a sports star doing her own laundry or a movie star doing his own dishes. Rain is just going to have to learn how to be independent by directing his staff to do his laundry, cooking, cleaning, as well as scratching his nose and brushing his teeth and settling his legs into the right place. But his mind and his voice, his spirit, will be as free and as forceful as he chooses them to be.

Independence is not without responsibility. It is liberty, not license. An independent person will interact with the people around him/her in a self-assured but polite way. He or she will need to be a clear thinker and a careful communicator. She will need to know and advocate for her rights. He will need to speak his mind with kindness and respect. It isn't always going to be easy, yet habits formed in childhood have a way of sticking with a person. 

Independence is a spiritual and moral practice, one which can be made into a habit. It is a state of being which cannot be eroded or taken away by a change in circumstances, no matter how drastic. Think of Martin Luther King, Jr. Gandhi. Nelson Mandela. Steven Hawking. Like fortitude and courage, independence is an inner quality which may be nurtured but can never be forced or stolen.

Duchenne forces us to see the world from a different perspective. I hope that I am teaching my son that independence is the manifest destiny of every adult. I have perfect confidence in Rain's ability to achieve a satisfying, productive, well-cared-for and safe adulthood. I intend to do everything I can for him as a parent to nurture his inalienable right to his own independence.