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.

 

The Anniversary
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.


The Anniversary
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.

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Comment by Archana on September 21, 2011 at 11:22am

It was a very nice try .We all are in the same boat.My son was 6 years old when he got diagnosed.In fact that was the time in my life when everything appeared picture perfect .I had my second baby (girl).I thought my family is complete, and I can look forward for a contented life ,But the happiness did not last long .Life came shattering down when My Dr called my husband with positive gene test.I kept on praying for miracle or for a call from the Aethna labs/Dr stating that it was a error.But that never happened.We have been living with this since feb 28th 2007.i still find lonely time to ventilate my frusturations and cry.i really wonder.......why this has happened to my son.. My son is very strong as  he never seems to think about his weaknesses instead he is very positive and he hopes for a cure.

Comment by Liisa Underwood on September 20, 2011 at 8:12pm

I will never forget August 17th, 2007 - the day at Children's in Washington, D.C.  Dr. Leshner listens to our story of trying to understand how we started down the path towards meeting him.  Like Ivy, we too chased down a gut issue. After several, expensive autoimmune tests, a liver biopsy and contrast MRI, there was nothing but elevated liver enzyme levels.  BUT, the GI doc had one more non-liver test to discuss...CK levels were over 12,000. She referred us to Children's Hospital.

Dr. Leshner listened and explained how common this path to diagnosis is very common.  He offered us hope because Connor was 2 and the research studies were advancing very well at the time.  He pointed out during the neurological exam where he saw evidence of Duchenne. He reminded us that this is not necessarily something that general pediatricians know to look for especially when Connor physically seemed barely a "nickle short of a dollar."  We did the blood tests. Connor bravely played with bubbles while the kind nurse took his blood. The CK tests was almost 20,000 and we still had to wait 4 long weeks before the genetic testing returned. That night, we had a planned adult outing with some friends to see a Bruce Springsteen cover band in Falls Church, VA.  My best friend made sure we had a good time - I so love her! 

 

The next morning we go on vacation to visit my family in Colorado and then my husband's family in Seattle, WA.  We spent the next two weeks surrounded by so much love and support.  It was important. But going home was hell!  Pure hell!  Now I'm left to think about the depths of what it would mean for Connor's diagnosis to be official. My husband and I did our best for the kids but together we grieved by ourselves and alone.

 

My work performance deteriorated terribly.  Despite their wonderful attempts to support me, I couldn't cope with work stress.  I was miserable at work.  I felt my personal life had to change. In the DC area, life involved long commutes, dinner in the car for the kids on the way home from day care, barely enough time to enjoy the kids before having to put them to bed, and maybe getting some food in before we collapsed.  THIS WAS NO WAY TO LIVE!!!  I wanted more time with my kids.  I wanted more fun for us.  I wanted to travel.  I wanted to afford all this.  We knew (and still know) that one day we may have to go down to one income.  How the *bleep* were we going to do this????

 

September came.  The diagnosis official. This time Dr. Leshner was not nearly as hopeful as he was the first time we saw him.  We have no clue why but to him, the research was dragging on too long and the process is too laborious. The outlook for a cure or treatment was bleak to him, and it crushed us.  This is not the way we envisioned our future. I hate what was now defined for us as a "new normal."  But we must not drown in this sorrow... but how???  I had no idea how!

 

One day it hit me...my son is NOT dying today.  He is not dying tomorrow.  Why am I living in a hell where I feel like that is happening.  I think I cried the hardest and longest I've ever cried in my whole life.  Then, the next morning, I felt as if a veil had been lifted off my eyes.  I can do this!  I can make this work!  I have to....for Connor's sake!  I have to!

 

Some days are perfectly great.  He's happy and healthy.  We're tackling ADHD, short stature and anger management.  But we're doing it.  We are living!!! He is lucky enough and I am thankful for this, that the progression of Duchenne is slower than normal for him.  His muscle clinic tests are outstanding.  His best friend is amazing and the two of them joined the elementary school's running club.  Last night, 9/19/11, he ran/walked 0.5 miles without complaint and all on his own.  At the finish line he told me, "Mom, I was just like the Little Red Engine!  I kept telling myself, 'I think I can!"  I am so proud of him!!

Comment by Karen O. Burch on September 9, 2011 at 4:14pm

The anniversary for my grandson is June also, eventhough we had our suspicions since March 2010, when Tommy was hospitalized with miositis.  He is the most wonderful little guy, with his impish ways and beautiful smile.  I remember the day my daughter got the confirmation of his diagnosis.  I wasn't in town, I was far away in Alaska on a trip that was planned a year earlier.  Telephone conversations left a very sunken feeling in my heart.   Since then the skies have brighten dispite occassional clouds.  My daughter & son-in-law are ever vigilant and loving parents.  They have my highest regard for their love, learning about DMD, & committment to family. 

Thanks for this blog.  It is good to be reminded of how far we have come.  It reminds me to keep praying and keep  being active to end DMD.

Comment by cheryl cliff on September 9, 2011 at 1:42pm

I too appreciate reading the anniversary stories of others.  So many moms can better explain their feelings and memories, and they match mine.   But as we are coming up to our 4th anniversay this October,  I don't remember the day exactically.  Just some brief snippets of things that happened that day.  

I worked very hard to make myself forget. It is the only way I can stop reliving the horror.  Now October is about homework, halloween and family.  Still looking for more joy tho. 

No parent or child should ever have to live those terrifying moments. 

 

Comment by Veronica E. on September 9, 2011 at 11:52am
Thank you for sharing your stories. I basically found out about Max's diagnosis in an e-mail. The genetic counselor e-mailed, "Did your pediatrician contact you yet about Max's test results?" My heart was beating out of my chest when I saw that she was e-mailing, then after I read that simple question, I was 99% sure it was positive. If it was negative, wouldn't she say that? I called my husband in a panic, asking him to call her. I was home with Max and his big sister, and I frantically called a neighbor to see if she could watch Holly. Her kids were sick, so I put Dora the Explorer on TV for Holly so she wouldn't see my anguish. While my head knew what the diagnosis would be, my heart tried to convince my head that the results were negative. I pictured James bringing home flowers and balloons, and planned out the party we would have if the results were negative. Then my head started to take over, and I asked God to give me strength. James came home from work, and he and Max and I went into the office where I cried for so long. Then, in our family's usual fashion, we went to our favorite Mexican restaurant. I thought I'd never be happy again, but we have had so much happiness in the past three years. Thanks for letting me share. I don't think I've ever writtens this story down ...
Comment by miriam thornton on September 8, 2011 at 6:31pm

thank you ivy and pat ,it brought tears to my eyes.

 

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