Having a cry right now as I put up the Christmas stuff around the house…. I like to put up pictures from the previous years and just reflect on how much our family has changed. There are no pictures from last year. You see, last year, I was in the anger phase of the grieving process. I was M – A – D…. MAAAD!!! So mad that my poor little girl had to face this life, so mad for my other little girl who had to worry for her sister, furious at what this meant for our lives, how it was affecting our marriage…. we weren’t communicating very well at the time that’s for sure. I didn’t want to hear my husband when he was trying to tell me I was different – I didn’t have the words to tell him to be more gentle with me, that I was so, so, broken and fragile and scared and vulnerable and FURIOUS! I was feeling hateful to all the people that made me feel misunderstood, or like I was over-reacting, who said thoughtless, careless things. Over the top blind with RAGE – that we didn’t get to have the life we had always envisioned!!
I can barely even remember a year ago – in fact, when I look at pictures from Christmas 2009 my brain automatically thinks that’s from last year. I know I cried a lot, I know I yelled a lot and how do you apologize to 2 little people that, thankfully, cannot understand what it’s like to be PARALYZED by fear. I thought about Rowan dying EVERY SINGLE DAY sometimes several times per day, I thought about watching her battle illness and seeing her struggle to breathe, looking at her attached to machines and feeding tubes. I was like a wild animal backed into a corner fighting to get out. I . know what it’s like to feel caged, like there is no escape…
The grieving process is a funny little beast… you never know when the next stage is going to hit and you rarely know which stage you are in when you are in it… this year I am VERY aware of just how pissed off I was last year and I do cut myself some slack… I had some serious shit on my plate… but that doesn’t alleviate the mommy guilt – not much usually does.
If you’re going through a hard time, please, please, please, listen to your loved ones. Please don’t feel weak. Please don’t judge yourself for having dark thoughts that you can’t escape… we all think them.
So, what have I decided to do with this nasty, yucky, shitty situation? Where have I decided to wrap my paralyzing fear into a neat little ball? I’m going to work this metaphorical ball of crap into something beautiful…. and giving and full of hope. That’s why I fundraise. That’s why I decide to do things like “Wish Upon A Star – Princess Ball” ’cause the big ball of crap gets molded into so much LOVE and HOPE that I need to find a place for it in my life. I need to know that my little girl will not go through this for nothing. That I (we… my wonderful husband does what he can despite his oilfield job and gives me ENDLESS support) have fought as hard as we can to find a cure. That no other mama has to feel the pain of CF. Especially my own kids… I don’t want to worry about my grandbabies and CF.
So, in summary, thank you to all of you that are hopping on the LOVE train. ANYTHING you do to help our cause…. any tiny morsel of SUPPORT or ENCOURAGEMENT or PRAYER… I am forever GRATEFUL and not so angry anymore!