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.
by, Ivy Scherbarth
The Anniversary. You know what I mean. It rolls around each year, reminding you of that day, that moment. The moment you first heard that your son has Muscular Dystrophy. It's funny what you remember about that day. And that first year. That first return of the date that sticks in your throat and in your memory forever. Ours is June 25th.
I remember that we had been going through our son's health crisis for about two months already. We were finally leaving the state of denial which had consumed us for his entire first year. We were finally taking him on the rounds of doctors that we hoped could save our little boy's life. He was starving. At 14 months he still couldn't eat any food and my milk alone couldn't sustain his trying-to-grow body anymore. We thought it was food allergies, maybe Celiac like my grandfather. But after a month of tests, hospitalization, a special diet for the whole family, feeding therapy, anti-constipation measures…The blood test came back showing a liver problem. Only it wasn't a liver problem. It was a muscle problem. Where the CPK number should have been in the 100s it was in the 10,000s. The pediatric gastroenterologist phoned us the minute we got home from the office visit we had just driven two hours each way to get to with him. He told me that our son has muscular dystrophy. He told us to go back to Children's Hospital on Friday morning for the Muscle Clinic. Then he said that he had to go to Montana for six weeks. Goodbye. It took me two years before I realized that he wasn't abandoning us to go fishing, but that he generously spends his time up north for a few weeks each year so that folks there won't have to make the two day drive down to Denver or Salt Lake City to see a peds GI specialist. I still harbor a secret, tiny kernel of blame in my heart for him just because he delivered the news.
Heart pounding, trying not to panic, not understanding one iota what those words meant, I went to tell the rest of the family. And look it up online to grope for some definitions. I stared uncomprehendingly at the screen and burst into wailing sobs. I called my sister-in-law and asked her and her partner to come over immediately. Since I still had not heard the word "Duchenne" I grasped onto some of the other dystrophies that it could be. Hey, some of those seemed milder…hey, maybe this is really all a mistake anyway. But deep inside I knew that there was no mistake. Deep inside, I knew that this was the all-encompassing, omnipotent Duchenne muscular dystrophy.
I remember walking out to the pumpkin patch. We were so consumed with this health crisis that we hadn't planted a garden at all but had just set out pumpkin seeds on the 21st. There were the first little sprouts in amongst the bindweed.
I remember being glad that we no longer needed to worry about food allergies and we could eat whatever we wanted again. We ate chocolate milkshakes and french fries. Lots of french fries. With ketchup. There's nothing like fried potatoes to calm a crisis. Gotta have potatoes.
When we got to our first muscle clinic, children still in pajamas after our long drive, I remember my pages of notes. I had two pages, both sides, of questions to ask. I remember the kind, patient, unhurried competence displayed by each member of the Clinic team. I remember asking if this diagnosis meant that we should plan to retire to the beach when Rain's breathing became compromised, since we live at high altitude in a dry climate where many people without health problems have a hard time breathing. I remember the neurologist's smile at that question.
I remember the grief, the panic, the persistent hope that maybe he had been misdiagnosed. I remember the guilt when I learned that I am a carrier. I remember the rage when I had to doctor shop before I could find someone who would let me test my daughter. I remember the sinking sensation when we found out that she is a carrier too.
We threw an enormous party for all of our friends, with a special "coming of age" ceremony at the center of it. Everyone listened to our story. Everyone gave their blessings to our family. Why have a pity party all alone when you can invite all of your friends to be part of it with you? Gotta have a party.
I remember that we were given a red backpack with all kinds of information from PPMD. I remember asking for the contact information of the woman who put it together so that we could send her a thank you card. I remember watching every single minute of every one of those informational DVDs. I read blogs and websites. I read a lot about Duchenne. I listened for stories of people coping well. I remember the burgeoning sense of community with a "secret club" when my mother and my sister found out that they are carriers too. I remember that that was the very best year we've ever had for pumpkins.
I started writing a blog about our experience. Writing helps me. Getting it all out, sorting it all out, helps me. And the sense that my story might be helpful to someone else out there, trying to find stories about coping with Duchenne; that my life can somehow enrich the research; that I can create a purpose and a reason for having this happen to my family.
We spent our first Anniversary at the PPMD conference. We drank three bottles of champagne at the end of it (we shared).
We went to every kind of therapy that we could think of. We pared the therapies down to a manageable set that seemed to provide the most benefit. We delegated chores and we asked for help.
We cried. A lot. We talked even more. We renewed our commitments to each other, to ourselves. We decided to be positive and to take action. We decided to make this the very best life that we can.
We just passed our third Anniversary. Since that first day, we've assembled a great team of doctors, therapists, and helpers. We've graduated from therapies, we've acquired assistive tech devices and discarded assistive tech devices. We've built an accessible house and moved in. We've had more parties and been to more conferences. We've become friends with other families with Duchenne. We've raised money and we've raised awareness. We've planted gardens and harvested from them. We've eaten a lot of french fries. We've drunk more champagne.
We've become completely different people than we were. Better people. People who live with more passion, more optimism, more determination, and more closeness. We've decided to live the best life we can, and in so many ways we are living the good life. We are living the good life with Duchenne.
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.
by, Pat Furlong
I will remember that day in June when the word Duchenne entered our lives. Duchenne prefaced and ended every sentence. I remember that day in 3-D: what we were wearing and how we seemed to move in slow motion. I remember the smell of lilacs. I remember the tears, the nonstop tears. I remember wishing for magic, wishing someone, anyone, could wave a magic wand and send me back to the life we had before that day. I wanted ordinary back, the slow days of summer, the picnics outside, the tea parties. I wanted my own private Tinkerbell to sprinkle fairy dust. I wanted the word Duchenne to be a lie, a bad dream.
I remember praying. I tried to make deals with God. I spent a lot of time on the concept of this deal, offering exchanges and making promises. I prayed for a miracle.
I remember asking my neighbors not to start sentences with “at least.” I knew they were trying to make me feel better, but the “at least you have…” sounded hollow, because I had Duchenne and that seemed to leave little room for anything else.
I remember the doctor’s office, the look on his face, how he spoke to his shoes when saying the word Duchenne. I remember the photos on his desk, his smiling family. I remember thinking how lucky he was.
I remember the sun was shining when we left the doctor’s office. I remember wondering why the sun was shining when it felt like the world was ending.
I remember telling my parents. They said I was strong. I remember getting angry when anyone said I was strong. I wasn’t and that was that. I was falling apart.
I remember words from well-meaning people telling me, “God gives the toughest battles to those he loves the most” or “God does not give you more than you could handle”. I remember wishing heaven had telephones.
And somewhere along the line, I realized that life is magic and that every minute counts and I resolved to make the most of every single moment.
And I found joy.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.