Saturday, July 15, 2006

Michael, Sophia's daddy, at Wisdom Heart, posted today about the experience of having a heart baby. I have found that, for the most part, parents of children born with a congenital heart defect feel as he does, blessed, enriched, and maybe a bit wiser.

Despite the fact that my babies didn't survive their defects, I agree with him. Alexis' death changed me, not necessarily for the better. I did exactly what he warns a person not to do -I fell into the Why Me trap, and stayed there. Eventually I moved forward enough to allow myself to be changed by her death, but her life was so short that I don't think I allowed myself to learn from it. Rather, with her, I learned from my grief. With Nova though, he lived, he came home, and he was mine - and I am a better person for having allowed myself to learn certain lessons from the trials that he experienced.

I appreciate life more, I know to remind myself daily that life is a fleeting priveledge that might end at any time for any of us, and I have learned that tomorrow is not promised, so if there are things I want to accomplish in life, I'd better do it, now, and like I mean it.

I've also learned to let myself be touched by things that I'd closed myself off from after Alexis died. He used the words "spiritual nakedness" in his post, and it was a phrase I so completely related to - I have learned to be spiritually naked, or rather, I've learned to revel in my spiritual nudity. I want to embrace life and love and I've come to understand that the negative bits of life can be just as enriching as the positive. Sometimes moreso.

He also said, "Having to accept the mortality of my child has laid my awareness wide open." It's like he's reading my mind and doing a much better job of expressing my thoughts. I am so much more aware of everything now than I have ever been in my life. When Nova was alive, I hoped that he'd have surgery, and come home and be perfectly normal. I know that probably would not have been the case. Now, I am sorry that I didn't have the pleasure and honor of being by his side with him through the trials and tribulations that I know he'd have gone through in life if he'd survived.

I did not only lose my child, I lost a life-long teacher, and though I wish he were still here with me, I am thankful to have had him for those 4 months, and to have learned the lessons he did teach me. They are lessons that have and will continue to shape me as a person, and will forever change how I live, how I love, and what I feel.

People think I have suffered. I have. But I also believe that I have been far more blessed through Nova's short life than most people ever will be. I am almost sorry for people who have not had the opportunity to learn the lessons that I have, because I believe that my perception of the world is different than theirs, more open, more, as Michael would say, more "aware."

Early on, I felt guilty that I could feel good in any way right now - I thought I was crazy to be able to find reasons to feel blessed - I felt so selfish to think that there was something positive about my experiences, considering that they have ended as they have. So, thanks Michael, for sharing your thoughts and feelings, and for letting me know that I'm not alone with this thought process.

posted by Erin @ 9:56 PM   3 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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