A Chapter of the Storm

As I sat down to eat lunch today I logged into Facebook.  I clicked on the link that shows me what I posted years prior.  Five years ago today I posted that we learned Rowen also had Duchenne Muscular Dystrophy.

Max had been diagnosed six months earlier when I was pregnant with Charlie.  We waited until Charlie was born to have Rowen tested.  I was scared that if Rowen was tested and diagnosed during my pregnancy, my grief could put my pregnancy at risk so we waited.

I don’t remember the phone call or who I talked to. I do not remember very much about that day.

I remember July 10, 2010.  That was the day Max was diagnosed and I remember every horrible detail.  But when I realized that today was the anniversary of Rowen’s diagnosis I can only remember one thing.

I remember sitting in the hospital cafe and watching my 2 year old son with the biggest brown eyes eating a bowl of ice cream.  Rowen had screamed during the blood draw and I wanted to make his day better, so we had ice cream.

I know the reason I don’t remember the phone call or much at all about that day was because I did not need a test to tell me what I already knew.  The minute we learned that Duchenne was genetic and that our other sons could be at risk if I was a carrier, I knew in my heart the 18 month old baby sitting at home with his grandparents also had Duchenne.

The six months between the the two diagnosises I was in mourning and I was in denial.  I was a crying, begging mess.  I was desperate for it not to be true.  I remember rubbing Rowen’s calves each night until he fell asleep stubbornly praying that I could heal him. Large calf muscles are a symptom of Duchenne and Rowen’s were as big as his brother Max’s.  I desperately wanted to pull the Duchenne out of his body.  I cried many of those nights begging God to take it away.   Many of those nights I begged God that the baby I was carrying would be saved from Duchenne as well.

I spent a lot of time begging and bargaining with God in the 18 months it took for all three boys to be diagnosed.  I desperately wanted God to be wrong.  I wanted to wake up from the nightmare my life was becoming.

By waiting six months to have Rowen tested and another six months to have Charlie tested the only thing I prolonged was having to accept the truth.

That was five years ago.  Our family has come a long way since, we have accepted the truth and we are living our lives the best and happiest way we know how.  We survive the hard days, we celebrate the good days, and we hope for lots of days.

I don’t want today to be a bad day.  The only thing I remember about this day 5 years ago is ice cream.  So I’m going to the store and I’m going to buy a bunch of ice cream and as many toppings as I can find and we are going to have the biggest bowls of ice cream for dessert.


3 thoughts on “A Chapter of the Storm

  1. You are such an inspiration! I am sure God is smiling down at you right now! You have certainly put a smile on my face! Steve and I will have ice cream tonite as well.


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