Thursday, June 08, 2006

When I started this blog, it was to keep track of all the things we experienced during the pregnancy and early period of Nova's life. They were things that I have forgotten with Alexis, and I didn't want to forget with Nova. I started this with the intention of looking back on it, Nova on my knee, in order to tell him about it when he got older, and for us to have a detailed list of diagnoses, medications, and procedures - we assumed there would be things that we recorded here that we'd need to know for his future treatments, and I've learned not to depend on my memory.

When Nova died, I continued blogging partially because this was his blog, and as such, it was a way to hold on to him, because I didn't want to let go... I couldn't bear it.

As I began to deal with his death, to accept it, and begin to mourn, my motivation, again, shifted. I continued to blog because I remember how isolated I was with my grief for Alexis. The grief and mourning I experienced with her death was the messiest most disfunctional period of my life. Every thing and everyone I talked to and dealt with made me feel wrong. I also assumed that everyone grieved that way, and that I would do it that way again as well. I didn't want to be alone with it again, and I thought if I put it here, all of the emotional chaos and confusion and anger and despair - and just one other mother in the middle of that came here and read it and felt less alone, then it was worth it to have helped that one person. And so I kept pouring myself out here, as much for that one imaginary parent as for my own release. I hoped that it would help me feel more connected somehow, and I hoped that it would do the same for someone else.

I'd be lying if I said there wasn't still an element of each still in my motivation for blogging here. I do want to record all of it, his life, his death, my grief, so I can look back on it when I'm less immersed in it. I do still want to hold on to him, because part of me still cannot accept that he's really just gone. I do keep writing because I need to release it, and need desperately to know that others are reading and care. And I do still hope that it benefits even one other mother.

I've gotten a lot of compliments about how "strong" or "inspirational" I am. I have resisted those sentiments. I've said that I don't see them in myself. I have never been very good at accepting compliments anyway, but I just don't see those things in myself. I still don't, but it's caused me to think a lot about it, to re-evaluate myself and my experiences, and my reactions. I have had to admit to myself that from out there, just reading these entries - without the benefit of being inside my head when I start typing, I can understand why those comments would be so abundant. Truth is, I may very well feel the same way, if I were one of you reading all of this.

The thing is, when I was grieving Alexis, I needed to read about the parents who, like me, couldn't go on. I didn't go one for a good year or more. I couldn't have accepted that someone who'd lost a child could somehow be "strong and inspirational" right after their child's death. I don't want to be the story that makes some other mother feel wrong or dysfunctional or isolated.

The truth is, I am still completely lost, I still wake up feeling like I can't breathe. I still have a hard time seeing other babies, the word Nova makes my throat close up (I thought I'd suffocate when that show Nova came on the discovery channel the other night.) I'm not always convinced that I'm going to survive, and not always convinced that I really want to. I've gone through twice as many pairs of disposable contacts as usual, because of protein deposits from crying. I fell apart yesterday because I saw one of his bottles that is still, somehow, in the kitchen cabinet (but I couldn't throw it away either, because that felt like throwing him away, getting rid of him...)

I do my research about financial aid, I raise funds for the heart walk, and I blog, because these things are my only hold on sanity sometimes, and they are the legacy of a child that I cannot let go of yet.

I don't sleep for crying, or trying not to. I wake up from dreams of the way his body continued to twitch after his heart stopped, and how bloated he was, and how quickly his body stated to get stiff, and how he weighed at least twice what he should have because of the fluid he'd retained, or the way I could feel his skin get cooler and cooler.

I sneak into the bedroom and pull out this one little sleeper, one that hasn't been washed since he wore it last, and I bury my face in it because it smells like him. I go to the hospital so I can be where he was. I hope to see Dr. Watts when I'm there, and shake his hand, because that hand actually touched Nova's heart.

So if I seem strong and inspirational, well sometimes maybe I am. And in those times, I carry on his name and I accomplish something because of him and I ensure that he is not defined by his death, but by his life, and I touch people for him because he no longer can. But in between all of that, I lose my mind a little, and I fall apart, and I wish him home, and I cry, and I get angry, and I forget he's gone, and I sleep with his bear, and I use up package after package of Kleenex, and roll after roll of toilet paper blowing my nose and drying my eyes.

And I never know how I'm going to feel from one minute to the next, and sometimes, like tonight, I have to stop what I'm doing and fall apart and go hysterical so it takes me an hour to type 15 minutes of text. It's just that you can't see the other 45 minutes of that hour.

posted by Erin @ 2:43 AM   4 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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