It feels like I don't belong where I always have belonged. I'm not the same, life changed me and it didn't change the world around me. Motherhood was the goal and motherhood hurt. One day, one doctor blew apart my carefully planned life. It's not his fault, it's not mine, it just is.
They tell me to enjoy what I have. They find obscure bright sides I should look at. They tell me to hope but they don't tell me how. They find inspiration in my carrying on, my smile, Robbie's strength. They find a flaw in every decision we make, and we can't be mad at them. They don't know what we know they aren't carrying around this particular baggage.
It's 3 am and I know I should be asleep but I'm worried. I worry all the time but at night its quiet and the worry can take control of every thought. Everyone I know thinks I am dumb, that I am lucky to have Shelby, that I am weak. Most the time I can pretend it doesn't matter but not at 3 am. At 3am, I worry everyone is right and I wonder how the hell will I get through all the things Duchenne brings? How will I know the right questions to ask? What business do I have advocating for him, when the deli counter at the grocery store gives me so much anxiety. Why in the world would this happen to my son when I am so painfully inadequate when it comes to speaking up? Am I too selfish to give him what he needs, what any of my kids need?
Then it's 4am and my husband notices I am throwing myself all over the bed. "Come here," he says and he tucks me into that space he has reserved for me. My head on his chest his arms holding me tight. "Tell me." he says. I start crying. "It's just so unfair," I tell him. "I know it is baby," he says softly. and we lay alone in the dark clutching to the only other person in the world who knows what we mean.
I try so hard to find joy every day but I refuse to push the bad feelings away. I am not going to pretend I'm okay when I am not and won't demand my children do that either. I won't pretend that moments of joy are only joy because they are also intense moments of grief, living with the knowledge of eventual loss is heavy. We get up every day and we carry on. We are warriors all day, every day, but we are not immune to bad feelings. We just acknowledge their existence. We cry we yell, we hold on to each other at 4am and wake up at 6 am and do the best that we can.
My children are the bravest most amazing people I have ever met and I know I am lucky to be the one they call mom. I also know that I will likely lose one of them way too soon. That first he will lose his ability to walk, and then hug me, and then I refuse to write the rest. We try so hard to not dwell on what is, for now, inevitable but that doesn't mean we pretend it isn't there.
Maybe that's why I don't fit anymore. I used to be bright and sunny. Clouds moved into my life and I can't pretend it's still sunny. it's just partly cloudy now.
