I’ve been thinking a lot about gratitude and loss, loss and gratitude. So much of my life is defined by the rare disease that has wound its way into the every day conversation of our lives.
I wake in the morning and wonder if it will be a good day for Z. If today will be a day that he’s well enough and gets some things done on his tick list: things like seeing friends and going to school, riding his bike and eating dinner with family. It seems like so little to ask of a day. Or if today will be counting the moments for when he can balance the nausea against his hunger. When we hope that the headaches don’t come. When he misses his friends and we cancel our plans.
Whether things are going well or things are going poorly there are always the conversations wondering if it was this variable or that one that turned the tide. Could we repeat the pattern that worked? Is there a pattern that made it worse? Do we have any control over any of it? It’s all encompassing. It’s what I do. It has become who I am.
It is sometimes hard to feel gratitude in these times when I want what everyone else has – the normal days with the normal milestones – school, athletics, the everyday minutia of without the constant grind of uncertainty.
I try to remember the days before, when I had other things on my mind. Don’t get me wrong, of course I think of other things – friends, family, what’s for dinner, what’s going on at work – although now work is rare disease related as well. But the undercurrent is always the same. I have a background hum that sometimes is a shriek that can never go quiet; that is always there. And oddly enough, in that background hum, amazingly, I can find my gratitude.
Ridiculous. I know.
I’m looking at my kids right now as I write this. And I know that despite what this disease has given us, our family has received gifts from it. I don’t know what we’d be without it – I’ll never know that – but I do know that my kids value each other in a way that is different than would otherwise be. They bicker; they get on each other’s nerves – who doesn’t? But they see each other in a special light because of the stress that rare disease has imposed on our life. They are a unit in a way that typical siblings just aren’t. I see them out there, brother and sister, taking on the world. I know they have each other’s back.
Our little nuclear family has seen hard times and sometimes I honestly feel like the stuffing is knocked out of me. But my kids and my husband and my ridiculously cute and stupid dog remind me that laughter is the cornerstone of resilience and hope. And we’ve gotten through all of it so far; so likely we’ll get through the next bit too.
I’m stronger than I would have been because of this and I guess that’s a gift. It’s a gift I’d prefer not to get on my kids’ backs, but as long as they’re getting that same gift of resilience, I’ll take it as well.
Do I wish things were easier? Of course I do. Does my family spend a lot of time laughing in the despite the adversity? Often. Do I need to keep learning that lesson? Apparently. Gratitude and loss. This isn’t the life I imagined, but it is a beautiful one. I am so grateful for the beauty my family shows me. For the laughter they give me. The joy we have is so heightened sometimes I feel like I just almost can’t stand it.