Tuesday, September 19, 2006

I wrote this the other day when I realized that a local website I recently joined accepts articles from its members. They ask that the articles broach a subject that has some impact on women. I'm unhappy with the abrupt ending, but if it's accepted it will be read by women all over the US. I suppose I should have edited and revised a bit more before submitting it, but I think it will at least get through to some of them if it's accepted. I'll let you know when I find out.

Learning Life's Lessons
through Repetition
by Erin Monahan

As little girls, most of us dreamed about the big wedding and the flowing white gown. We fantasized about our perfect man, the knight in shining armor, or gallant prince that would sweep us off our feet. Then, most of us moved on to thoughts of motherhood. I personally had my first child’s name picked out by the time I was twelve. It was going to be a girl, and her name would be Micaela Elizabeth. Her father would be rich and handsome and we’d be the perfect family and live happily ever after. "Micaela Elizabeth" was born when I was seventeen, just 6 ½ months after a rushed wedding. His name turned out to be Shane Thomas, and I divorced his (mean-spirited and financially destitute) father when he was three. Those were some of the earliest lessons I’d learn as a woman, a wife and a mother.

The next was when, in 2001, I gave birth to my fifth child - a little girl named Alexis Jade, all pink and perfect with big blue eyes and a head full of black hair - and buried her twelve days later because of a heart defect that required open heart surgery to redirect the flow of blood through her heart. That was when I learned that motherhood was not a guarantee. It was also when I decided to emotionally close up shop. One of the sad realities of womanhood is, unfortunately, that babies can and do die. I shut myself up in a dark place with that knowledge. But, as cruel as it sounds, life goes on. And it did for me after Alexis died… eventually. After a while I went back to work, I cared for the other children, and went through the motions. I tried to be a good wife, and I had another baby. It was another girl, our daughter Terra, with a healthy, perfectly formed heart. I was so grateful that she was healthy! But Alexis’ death still colored everything I did with Terra. I still missed Alexis, and was terrified that somehow, I’d lose Terra too.

Two years later, shortly before I was due to deliver my seventh child, we learned that we’d be having a boy, and that he’d be born with a heart defect too. His heart was almost exactly like Alexis’ and would require life saving open heart surgery to live. We named him Donovan Zane, we called him Nova, because he was our little star. After he was born, we took him home for three months. We worried, we ran back and forth from doctor appointment to doctor appointment. We valued every second and spent every moment loving him. Oh how we loved him. And when we took him to have the surgery, for all the things we didn’t know, we were absolutely sure that he knew he was loved. Nova died after six weeks in the hospital. I held him close to me and told him again and again that I loved him. He couldn’t hear me then, but he knew.

In the 4 months he lived, Nova taught me more than I’d learned my whole life. Through him I learned that congenital heart defects (CHD) are the most common birth defect, affecting 1 in every 100 babies born, that nearly 40,000 children each year are born with some form of CHD, and that in most cases, doctors don’t know why. But more importantly, he taught me about bravery and strength and perseverance. From an infant who never spoke, I learned about purpose, and about making bonds. After his death, unlike after Alexis’ death, I reached out, I opened up, and I looked for positive things to do to allow Nova live on and continue to teach his lessons. I knew that I was not the only mother who’d lost a child, or the only woman who needed someone who understood. I knew from experience that there were women lost in grief. So I went out, being one of those women, trying to find those women like me.

That search landed me in an online grief support group called Grieving Hearts, it also led me to participate in a fundraiser through the American Heart Association - but most importantly, it led me to a stage where I told my story to thousands of people. It put me in contact with reporters who put Nova’s life and message into the newspaper and on the television, and I’ve used those opportunities to reach out to other grieving mothers and to offer them a brighter path. There are support groups for grieving mothers, and there are more and more support groups specifically designed for women whose lives have been affected by CHD. There are organizations out there to help fund research so that we, and future mothers, can have healthy babies without fear of losing them to heart defects, many of which have been founded by mothers of heart babies who need a positive outlet for their frustration, fear, pain and grief.

The lessons that Nova taught me about the fragility and impermanence of life enabled me to spread the word that we, as women, as mothers who‘ve lost children, are not alone, and we are not powerless. We’re a force to be reckoned with, and together, we can change almost anything!

posted by Erin @ 7:41 PM   1 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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