It has been a weird summer. Not going to Boston is somehow harder than it sounds. There was stability that came from constantly being measured and observed. There was context as we purposefully made sacrifices so that in years to come, Rett Syndrome can be treatable. But that season has drawn to a close and we have returned back to our normal. Don’t get me wrong, I have so much to be grateful for, and I am. The trouble is that our normal just isn’t.
I didn’t see it coming. I was happy to be looking at camps for Chloe instead of flights and hotel rates. As summer has gone on, I’ve tried to not notice, but the grief has been inescapable. It hit me like a ton of bricks when Facebook reminded me it had been a year since we last flew to Boston. I was flooded with the mix of emotions that came from that day. There was uncertainty and vulnerability paired with hope and strength along with deep fatigue, adrenaline and a lot of coffee.
I used to wonder how it would feel to be able to give Claire something that could help, even if it was the slightest improvement. Now I know. What I haven’t figured out yet is how to go on with that knowledge. Truly, living in normal is the biggest adventure and I don’t feel prepared, you never are.