Monday, March 27, 2006

I have completely lost the ability to track time, but I know that one day, recently, it was 80 degrees. Then it went and turned spring, and turned cold. OK, not like frigid, but the lows have hit freezing, or close to it, on a couple of nights since that beautifully warm day. Today the high was something like 45. It wasn't too bad, as long as the wind didn't blow. But there were some pretty good gusts going on out there - and they cut right into you.

The good news is that they're calling for nice warm 70's and 80's at the end of the week. Now that's what I'm talkin' 'bout. I need it. Winter depresses me, the last 5 weeks of watching Nova fight for his life have sapped me, the news about Randy and how much I know Scott is hurting right now has really just been all I can take. I need something to feel good about - even if it is just the sun on my face.

I miss being happy.

The nurses, doctors and patient reps up at the hospital love us. We're always friendly, upbeat, smiling and laughing. It's starting to be work to keep all that up, you know. Oh the Easy Button is funny, hell, we had a blast with it - but it's just a distraction. You know how it is, when life gives you lemons, make lemonade, chin up, think positive...

I don't want to anymore. I just fucking want my son, whole and healthy and home.

I've been thinking a lot about Alexis lately. I try not to dwell, but christ, it's all right there. The bells and alarms, the smells... They tried to have us wait the other day in the waiting room around the corner from CVRU, where I held her after she died. You know, she'd be starting Kindergarten this fall. I can't believe it's been nearly 5 years.

When Nova went in to the hospital, I told myself that I wouldn't be paranoid because of Alexis' death - that I had to believe that he'd make it. I don't know if I did - especially that first day, maybe the first several. But once he made it through the first 48 hours, and as time has gone on, I think I've swung to the other end of the spectrum. With all the things that have gone wrong, I've found myself minimizing them in my mind. When I feel good, I question whether he's really doing ok, or if I'm just in denial. I'm afraid he's sicker than I'm willing to admit to myself.

Look at him, he looks like hell, he's been through hell, and we have a long way to go. I hold my breath wondering what the next complication is going to be, wishing the swelling would subside, the infection would clear, that he'd open his eyes and see us. The whole time we're up there I'm laughing and joking with the nurses, and somewhere in the periphery is this 'something' that I try to ignore.

I can't figure out if it's fear, or truth.


posted by Erin @ 2:17 AM   1 comments



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Name:
Donovan "Nova" LeClair
Location:

Monroe, North Carolina
Bio:
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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