I loved this book. The writing is excellent and the story is sad. To think that generations of the same family are so riddled with the same disease. The women are the carriers, and the men get it. Well worth the read, especially if you like true stories.
This is a sad but courageous story of one family that has been cursed by Muscular Dystrophy for years and years. Christine Kehl O'Hagan's family carried the gene for the disease, which strikes boys only. She had two uncles who died from the disease that she never even knew about, until she found their pictures hidden deep in the back of her Grandmother's closet. Christine's brother, Richie, was struck with the disease when he was very young. Almost as soon as he started walking, they noticed a problem. Richie lived to be 22 years old, when most DMD patients are only given until they are in their teens.
When Christine and her husband Patrick had children, they were blessed with two boys. The eldest, Patrick Jr, and Jamie....Jamie, who had unfortunately been passed the DMD gene. Christine stayed in denial as long as she possibly could, but poor Jamie could not even climb the steps to the school bus. Once they had a confirmed diagnosis, their lives took a dramatic turn.
This gritty, honest memoir was tough to read, but at the same time, very uplifting. Jamie knew that his life would not be long and accomplished so much in the short time that he was here. He passed away at the age of 24.
~"I don't know what I'll do if anything happens to you," I told Jamie some months before he died, a couple of pneumonias into the year. When he'd ask me how long I thought he would live, the same question that my brother had asked all of those years before, I'd simply told him that he wouldn't live to be old, that he shouldn't worry about long but instead, how deep.
"You'll be alright,", he said, staring into my eyes until I looked away, a conversation I remembered about a year later, on a Sunday afternoon, when Patrick called me into the living room to see a football play, and I came out of the bedroom to read him a poem. I hate football. He hates poetry. I don't know why it is that miracles come into our lives wearing toe shoes, yet the disasters show up in construction boots - but Jamie was right. We're alright.
When Christine and her husband Patrick had children, they were blessed with two boys. The eldest, Patrick Jr, and Jamie....Jamie, who had unfortunately been passed the DMD gene. Christine stayed in denial as long as she possibly could, but poor Jamie could not even climb the steps to the school bus. Once they had a confirmed diagnosis, their lives took a dramatic turn.
This gritty, honest memoir was tough to read, but at the same time, very uplifting. Jamie knew that his life would not be long and accomplished so much in the short time that he was here. He passed away at the age of 24.
~"I don't know what I'll do if anything happens to you," I told Jamie some months before he died, a couple of pneumonias into the year. When he'd ask me how long I thought he would live, the same question that my brother had asked all of those years before, I'd simply told him that he wouldn't live to be old, that he shouldn't worry about long but instead, how deep.
"You'll be alright,", he said, staring into my eyes until I looked away, a conversation I remembered about a year later, on a Sunday afternoon, when Patrick called me into the living room to see a football play, and I came out of the bedroom to read him a poem. I hate football. He hates poetry. I don't know why it is that miracles come into our lives wearing toe shoes, yet the disasters show up in construction boots - but Jamie was right. We're alright.
