Monday, March 27, 2006

How I really feel - uncensored

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.


  1. I would think its terror. Nothing worse in this world than watching your baby suffer. I know. My heart and prayers are with you.

  2. Erin, of course the laughter and the joking are just distractions. You have a very sick son. Very sick. The fact that you're able to joke and laugh at all amazes me, but I envy it.

    All that you've said here is valid, real, and painfully exactly what you should be feeling, unless your some sort of unfeeling robot. How could you NOT think of Alexis at a time like this, with Nova struggling and being surrounded with all the memories of her daily?

    I'm glad you're sharing this with us, maybe it'll help make it easier for you, since it's out on the table and not festering underneath your skin.

    Don't give up hope for Nova- I now he's suffering, he's got it hard no doubt, but he's also strong, even zonked you can almost see the life in him- I can't explain it, E, but I feel so optimistic about him, despite the complications. I'm praying that my gut is right.

    And I know you're tired, Mama, tired and tired of trying to hold it all together. You deserve some breakdown time, so have it. Feel sorry, feel sad, but as always, the world will be waiting there, tapping it's watch impatiently for you to come back to your place. I wish I could stop time for you, just for a few days, let you rest. I think it would do you a world of good.

    E, I love you, if you need ANYTHING, don't be afraid to ask, ok? I know you're stubborn like me and don't "take" very well, but dammit, sometimes you have to.

    Love you.

  3. Pat~
    It's definitely terror. I guess I just don't know if it's well-founded, or a by-product of my paranoia. God help me, I hope it's paranoia. Thanks for commenting. I've taken a quick peek at your blog, I'll be back though, I love finding new (errr, new to me anyway poetry blogs.

    Sweety, I don't know what I could ask you for. I'd say I could call and talk, but truthfully, I can't. When I try to talk about it out loud, I just can't do it. It's almost like saying the words out loud would be bad luck or some ridiculous thing. I know, I'm not prone to superstition, but I suppose when it comes to Nova, I'm being extra careful, just in case?

    I don't know. You know I love you for offering, and I promise this isn't pride, it's just that -other than a miracle- I don't really need anything.

  4. E, Nova is a miracle. He's a precious little one that's sharing his light with us everyday since the day he was born, just as you bless us with your words. Your sharing your experience with us is also helping with OUR growth. Be tired, be restless, be scared and then let it go....let it go, hon. There's a greater being watching over all of us. Let the peace he offers us all wash over you. Healing is already taking place. Just believe. I love you. I'll call you later on tonight.