Co-Blog – The following is a co-blog put together by myself and Ivy Scherbarth, a mother from CO and PPMD’s FACES Coordinator for CO/WY. This is a new project we have started where we will both write on similar topics from two different perspectives, but living in the same world of Duchenne.
To Have and Have Not with Duchenne
by, Ivy Scherbarth
It has been said that Duchenne muscular dystrophy turns the "haves" into the "have nots."
In some respects this is obvious. We go from having a healthy child to having a child who is not. We go from having an alive child to having a child who is not. We go from having a preconceived notion of what our life is going to be like to…not.
In some cases becoming a "have not" is more insidious. We go from having "normal" needs to having "special" ones. We go from having the tacit support of our relatives and neighbors to living beyond the scope of their awareness. We go from having a sense of security to an intense sense of fragility. We fear that we have not the courage to live this life.
Sometimes becoming a "have not" is about gear. We have not the means to effectively transport our child. We have not the adaptive stroller, the scooter, the wheelchair. We have not the house with the accessible bathroom and the wide enough doorways. We have not the voice controls on the computer, the automatic door opener, the aide at school. Sometimes we have not the imagination and creativity it takes to find the gear that might solve our particular problem.
Sometimes the sense of "have not" is about the time and energy it takes to live with Duchenne. We have not the time for appointments all over town with the PT, OT, speech therapist, Muscle Clinic, cardiology, pediatrician, dentist, swimming therapy. Heck, we have not the time to clean the house, cook the meals, do the laundry, bathe and dress and feed and stretch and medicate and teach and supervise the kids. We have not the time to take care of ourselves. We have not the time to breathe! We have a constant sense of urgency because we know that we really are running out of time with our sons.
Sometimes, of course, it is financial. I don't think that anyone plans to have the diagnosis of Duchenne. No one has laid aside money for years, thinking that this is the wheelchair fund. So along with the emotional and lifestyle shocks of Duchenne, we get a slow motion financial tsunami. There are the endless co-pays. There is all the medical care that insurance won't pay for. There are the night splints. There are the vitamins. There are the medications. There are the surgeries. There are the days of missed work for appointments, for illnesses, for recoveries. There is the mobility gear. There is the accessible van. There is the special bed. There is the cough assist machine. There are the in-home caregivers. There is the remodeling or the building of the accessible house. How many hundreds of thousands of dollars does that add up to? When does the family that thought it was comfortably middle class sink in its standard of living? When does the family that is used to being the dispenser of charity, become the recipient of charity? When does the family that values its independence turn to public assistance programs? What happens to the family that was financially marginal to start with? What happens to the single teenage mom and her son?
It's an awful lot to trade for the convenience of having that special parking tag.
It's easy to work yourself into a panic.
So what do we have when we've lost everything we thought we had?
Here's what I feel that I have:
I have this life, right now, exactly as it is, to make the most of, to enjoy, to experience. I have a life to live. Yes, it is transfigured by Duchenne. But it is a life and it is mine. The only thing I really have to do is live it.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.
Introducing a ‘Have’
by, Pat Furlong
I’m always intrigued with introductions. Often, they are as simple as a name. X meet Y. Then again, sometimes, words are added… to include where you live, the school you attended, the place you work, a common interest, a favorite city, or maybe something about your family. In one seemingly very long breath, I am often introduced as: ”Pat Furlong, both of her boys died from Duchenne muscular dystrophy.” To this day, the introduction takes me off guard, seems to change the air around me. It’s like reading the last line of the book without knowing the full story, without any understanding of the immensity or intensity of such a statement. It feels like a request for pity. The punch line in this case is a bit awkward and often makes everyone feel a bit tongue-tied. Mouths open and close, searching for the right words, the right response.
Here’s the thing. There is no need for pity. I am blessed to have 4 children. They were and are the most wonderful, the most intelligent, the most beautiful children in my world. They were and are perfect for me, for us, for our family. We loved, laughed, and learned together. We had our share of struggles, but the balance of the equation is tipped toward joy.
When Duchenne entered our lives, the world we knew fell apart. On that day, our view of the world changed and with that change a reevaluation of our plans, our dreams, and our future. For a time we found ourselves listing all of the things we did not have. We spent days and weeks in tears worrying about what will happen in the years to come. With each new piece of information published about care or research, we would make a guess about the impact on the diagnosis and predicted outcome. We would find ourselves guessing and second guessing what the future might look like. I spent hours and days making mathematical tables in my head comparing the age of Chris and Patrick, the potential impact of improvements in care, press reports around research or clinical trials in development, and my expectations in terms of walking, moving their arms, their lifespan. “If this happens on X day, then Chris and Patrick will be X, they will have this degree of function, they will live until…” and on and on and on, recalculating, recalibrating, reworking my algorithm. I drove myself crazy living in some future time when whatever it was would impact their lives and our expectations.
Each time I described this to Chris and Patrick, they would listen and smile and in the next breath, talk about today, dinner, the weekend, a movie they wanted to see, friends, school, football, the latest and most essential video game, the next free day, the next holiday – everything in the present tense. They were not focused on some later time. They loved today. They loved their life. They restored us to ‘have’: Have today, have each other, have family, have friends, have love, have fun, have this minute, this hour, this day.
As a family, we would commit – hear, mind, spirit – to do whatever we could to change the outcome for Duchenne, to advance the field, to accelerate research and treatments. To end Duchenne.
But as a family, we would enjoy every minute together. We would photograph every memory and paint it on the walls of our heart to retrieve, to reclaim at any given moment and for anyone willing to listen. We would love each other, care for each other, and spread joy every minute that we would have together. We stopped looking through our ‘have not’ glasses and found that, even after the diagnosis of Duchenne, we had a life to live.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Pat Furlong, Founding President, CEO
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