It’s hard to believe it’s been nearly a month since I last posted my “weekly” newsletter.
The best laid plans… right?
Life has taken us on a wild ride the last few weeks. In short, we (meaning my family) have gone from a phase of complete darkness to a phase of extremes. I’m happy to be out of the darkness, but I am rattled while adjusting to a life of extremes… again.
What is it like living in extremes?
Well, we’ve always called it high highs and low lows.
The high highs? They’re amazing. Over the last six weeks I have felt happiness and joy that I truly wasn’t sure I’d ever experience again. We’ve opened the curtains and let our house fill with sunshine. We went to the beach. We’ve gone shopping in stores. We’ve visited playgrounds and friend’s houses. We’re making plans for the future.
In my past life, before Dravet syndrome, I wouldn’t have recognized these moments as special. They would have been ordinary and maybe even a little depressing (because they still don’t look “normal” by any stretch). But this appreciation for all the little things we’ve missed… THIS part of the journey is what we live for.
The low lows? They’re devastating. Soul-crushing. Hope-dashing. They come at unexpected times, last for unexpected lengths, and require all of our attention without consideration for our mental capacity or plans. The require us to make constant big decisions, day in and day out. Give this medication? Call EMS? Go to the ER? See a new specialist? Tell her what is coming or wait until the needle is about to go into her arm? (Pro tip: Always wait, unless they ask.)
The low lows mess with us, too. They get our adrenaline pumping and ruin our sleep. They cause stress on our bodies and minds that affects us physically and mentally. They keep us away from fun and friends and make us angry and resentful.
Scariest of all, the low lows take up so much space in our brains that they threaten to wipe out the high highs completely. And I’m sad to say, after eight years, that sometimes they DO wipe out the high highs completely. My husband and I often fumble our way through conversations with friends about events we can’t remember, or we’ll see pictures from when our daughter was a baby that neither of us can place.
Even with the low lows, I am so glad to be out of the darkness and to be experiencing joy again. Our whole family feels lighter and our kids are so much happier. And the happy bonus is that I’ve written some of my favorite stories in the last few weeks! Hopefully someday they’ll provide mirrors and windows for the world to know what Dravet joy looks and feels like, but at the very least these stories catalogue a few special simple moments for our family.
So we can always remember. Low lows be damned.