RecoveringApril 23, 2010 by Victoria Gwendolyn is doing okay. Apart from worry and insomnia, we are recovering...but it has left us all in a fog. Bill is exhausted.Gwendolyn wants her bipap all the time, which seems more psychological than an actual breathing change. And I start something and completely forget what I am doing. We are trying to get rested and refocused -- we have to -- but it is difficult to simply snap back.I locked Gwendolyn in the car on Monday, which I know is directly related to me being so out of it. Thankfully Gwendolyn remained calm while two sheriffs, one tow truck, three firemen, and Bill (who ran and hitchhiked from work to get to us) tried to get the door open. (It was Bill's swift action and getting to us so quickly with extra keys that saved the day!) We are all still clingy and in need of low energy movie watching, book reading, and snuggles. But, how do you shake off the image of your lifeless child?
We know Gwendolyn is going to die and that is excruciating. It is nothing like the worry of something bad happening -- even the worry of a possible SMA diagnosis. No, the real deal living with SMA and watching my child deteriorate is like someone ripping my insides out (it is a million times more painful than you can imagine). But, I know that the knowing I will lose Gwendolyn pales to the enormity of actually really losing her. And that leaves me paralyzed.I have replayed the incident over and over in my mind, which at first was helpful so I could process it and learn from it. But each time I go over it all again, I am confronted with the image of my sweet little girl in her white ruffled shirt blue... mottled...unresponsive... lifeless. I don't want to go over it anymore. I'm done talking about it. I don't want to imagine all the possible ways she may die, when we will resuscitate and when we may not be able to. I don't want her to hear the conversations about it. I'm done.I'm not a fan of sweeping things under the rug, but I think I need to so that I can move forward.