Shades of grey

The sun was shining yesterday, and today in the morning. I have been holding out for sunshine so much that I bundled up and sat freezing out on my deck yesterday doing homework in hopes it might save me. I'm not just using "save me" as a metaphor, I have been drowning in shades of grey. There has been no blue, no warmth, just cold grey. This has been a rough winter, rougher than the previous one. Possibly I felt last winter that it was okay to still be sad, or feel depressed because I was still new at this cardiomyopathy stuff. After such a good summer, fall and early winter I was doing great, enjoying school and spending time with the kids, noticing things that I was doing that I hadn't since Charlottes diagnosis. Granted there are always bumps on my emotional road, but nothing like lately. I'm not sure why I've been led off the road and down this path to where I've been, but it has felt LONG, with a lake that tangles you in the branches that line it and push you down. There have been hikers to try and "save me" but this has required grabbing branches to try and climb back up on my own, and it has been unlike any sadness, or anger I've experienced before. It has faded some with color returning occasionally with a night out here with friends, a conversation that intrigues me or the daily routine of having Jason, Brandon and the kids with me, but as soon as they left me in silence I was alone and it's return would take over and I'd allow it to swallow me.

I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.

This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.

Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)

Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.

So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.

I will also call someone bigger than myself to help:)

Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney