Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.



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.

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Comment by David on July 20, 2014 at 3:03pm
Here I am wondering who will help me interview, organize, and manage home health workers for my young man who turns 16 next week. It never occurred to me that the answer is he himself.

Thanks Ivy

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