Most people dread looking at the back of the fridge, fearful of seeing some lost piece of deflated mystery food. I hate looking in the back of my fridge because sitting there is a tiny bottle of morphine. Our hospice kept it at our house to help my daughter pass away peacefully. My daughter, by some miracle, grace of God or luck, is still alive and kicking. And boy, does she kick hard! But that little villainous bottle still sits there, tucked away, as a grim reminder of how close we came. I avoid venturing too deep in the fridge for fear of seeing it accidentally. All those emotions, pain and uncertainties come rushing back the moment I lay eyes on that small prescription bottle hiding in the shadows.
My daughter graduated hospice care in March of this year. When all this started, her doctors told us to “enjoy each moment” and “treasure every memory.” Code for: “Your child is going to die.” While we did and still cherish every moment we have with our daughter, we’ve reached a level of normal. Well, our normal anyway. God, do I love our normal. I wanted normal more than anything on Earth. The routine of bedtime stories, baths and toys has replaced monitors, oxygen and daily labs. At least for now.
When you almost lose a child, you never forget that feeling. People expect you to get over it because he or she is “better now,” but a small part of you will always be stuck at the bedside of your dying child. You will always play the “what-if” and “could-have-been” games in your head. You feel cheated and angry at times, sad at others.
It’s important people understand this: Not everything is fine just because your child is doing better. There is so much grieving that happens when you have a child with a life-long disorder and that doesn’t just go away. It may get routine, it may get more bearable and it may become (your) normal, but it doesn’t get easier.
Despite this, we have to keep going forward, even if we know the future may not be everything we expected. In the midst of those scariest moments, I didn’t think we would be where we are today. I have no idea what the future will bring and that is OK. We’ll roll with the punches.
I’m getting rid of that little bottle in the back of the fridge. I need to let it go. I need it gone. We all have our own reminders of those uncertain times. I hope many of you can clean your fridges out too, when you’re ready.
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