(Love of my life, 43 months)
We've been home from the hospital for a week and a half now. And something is different in me. I'm afraid. I'm not sleeping well (even when I have the opportunity to do so) and I'm crying a lot. For the first time I am really seeing things for what they are. Yes, yes, I've always acknowledged that I have a "terminally ill" daughter but honestly it never really, really registers. If I'm with a group of people and the topic of Charlie comes up and someone doesn't know her or about her situation I will explain that she has a "terminal illness"...I honestly keep saying it so that one day I will really hear it and it will sink in. I do this because I think it will help me to 'prepare'. I've come to believe that it's our bodies way of protecting us...we shut such painful things out so we can carry on...who could honestly feel the weight of that on a daily basis and still get the laundry folded? What is changing though is that it is all really, really beginning to sink in...I have a terminally ill daughter.
This last hospital visit was intense and eye opening. At one point Matt and I met with a group of doctors and a hospice nurse and discussed our 'options'. Everyone was gentle yet frank, they really wanted us to have as much information as possible to make informed decisions about where we want to go with Charlie's care. We discussed that if/when Charlie dies it can be pain free and in our arms.
My eyes just welled up typing that.
I can't stop fixating on the fact that in my lifetime my child that I (we) made and dreamed about our whole life and future with, will die in my arms. That is just fuc*ing brutal. I can't believe that I am that woman, that this is my life's path.
It was explained that at anytime, Charlie could get a plug in her throat, start choking and we may be unable to help her. I could be on the seawall, just walking along and this could all go down. I'm terrified of being alone when something horrible happens. I've developed separation anxiety. When Charlie goes to Matt's I get desperate moments to see her. What if the last time I saw her is the last time I ever see her?! But at the same time her care has become so much more demanding that we need the breaks too. Thank god for FaceTime. When we're home alone with Charlie she needs to be constantly watched. When I do the dishes I am continually yelling out to her in the living room, "Charlie say coca cola, Charlie say "Shrek" Charlie say, "momma" if she replies she's not choking, if she doesn't she may be and I need to run in and check that she's OK. This is our normal now.
The progression of Charlie's disease just sort of snuck up on us, like when you look at a picture of your child a year ago and you stare in amazement and really realize how much they've grown. There is no denying that Charlie is not the same kid she was a year ago. Smarter? Yes. Funnier? Yes. Talking up a storm? Yes. More beautiful than ever? Yes. Even sweeter (if that is even possible) YES. But sicker and weaker? Yes. :(
I pray, pray, pray, that our girl keeps fighting and loving life and that Matt and I have the strength to handle whatever comes our way.
I love her, I love her, I love her.