Here it is… my pause and reflect Christmas post… I wonder if Christmas time will always be clouded by how Cystic Fibrosis has affected our lives… I hope not but for now I am purging some pain yet again. Much of the pain I am feeling lately is the memory of our first Christmas – really, it’s more about the first year of Rowan’s life but I think I remember it as Christmas time the most because that is when everyone wants to see you… and I don’t want to go out. I am paralyzed with fear… it is cold and flu season, we are immunizing for RSV every 3 weeks, oh, and remember that little H1N1 epidemic? Yah, good times.
I feel caged, I feel trapped, I feel terrified, I don’t feel like myself… I feel alone, I feel misunderstood, un-supported, broken and bruised.
This is an excerpt from my journal in December of 2009:
“Well, it has happened, she is sick, just a cold but she has a cough – the first barky wet cough we have heard from her. Brian and I look at each other like “this is it.. this is what we have been waiting for.
I am up almost all night with her.. I am so tired, so stressed. I have always played this little game with myself to help in stressful situations “What’s the worst that could happen?”… I usually find this uplifting as the worst thing that could happen is usually not that bad. It’s not an effective game to play when you fear the worst thing that could happen is your baby girl could die… I cry… the kind of cry where no sound comes out – like a scream – like a hot ball of lead stuck in the back of my throat. I collapse into bed and my whole body hurts, my soul hurts, I am so scared and in so much pain. I can’t do this.. why did she choose me, why did this happen to us? To her? What if she dies? How will I live? How will I function? How. how. how…”
Gawd, that’s hard to read. What makes it especially hard is how hard I was on myself at the time. I think the fear and the darkness of my thoughts was so painful to face that I beat myself up about it.
Here’s what I know now… for sure… You have to let yourself FEEL even if it’s fear, even if it’s dark… You just have to make sure that you don’t attach yourself to these feelings. Here’s what I also know…. for sure… I NEED to process these memories because I need to ask the person I was then for forgiveness… I NEED to validate the things I felt then instead of chastising them, instead of criticizing them. They were real, legitimate things to feel at the time. I need to forgive those that contributed to the judgment. Who made me feel crazy with the hand sanitizer, who hurt me with their comments about not wanting to go out, who didn’t ask questions, who refused to understand. I need to find a place for this big grief and get comfortable with what will always be my grief. Until there is a cure this will always be with us – Cystic Fibrosis is not going away – and thus it is different – there is the big trauma of coming to terms with her diagnosis THIS is what I need to let go of – coupled with the quiet acceptance that this will always be with us. I need to acknowledge all of it – and I need to dig deep and pull out all of the darkness and…
I need to process all that was stuffed down so it can escape once and for all and the hole that is left by this pain can be filled up with all of the magic that having little kid at Christmas time can give. I want to Release all of this – it’s heavy, it’s a burden and I don’t need it – it doesn’t serve me – and it leaves very little room for all that NEEDS to be in my life. Even as I write this I feel lighter, more free I feel more room for what really matters…. what matters to me, what matters to my family. This is all we need: