Here we are, though, 365 later...and today has been perfectly normal. Okay, maybe not TOTALLY normal, because the van wouldn't start this morning, but mostly normal. KayTar went to camp, BubTar and I went to the bookstore then to KayTar's recital. She had fun, she was happy, healthy, episode-free...just like the previous 364 days. Perfection.
In all of the medical and developmental drama in KayTar's life, those damn episodes were the absolute worst of it. There is NOTHING that I have ever experienced that is as terrible as seeing your child in uncontrollable pain...watching your child slip away from you and turn into a non-responsive tiny little ball of writhing and retching that you are helpless to soothe...for hours on end. Combine that with moments like:
Dragging your healthy son out of the Children's Museum on his BIRTHDAY because of his sick sister.
Turning around and coming home from your daughter's very special trip to see the butterflies before she ever got to see a single butterfly.
Being frozen in indecision in an airport parking lot with a tiny kid having one of these damn episodes, wondering if you should go through the trouble of checking in because she may or may not come out of it in time.
Having to switch flights at the last minute (on a totally different occasion) because she is just too sick and you have to rush home...and deciding to send your son ahead with your mom so he doesn't have to miss out.
And so on and so forth...
And you can see how it might be a heartbreaking condition. It was horrible for her. It was horrible for us. We still live in fear of it. KayTar had a run of the mill headache a couple of weeks ago and my heart nearly stopped beating when she said, "My eyes feel funny...kind of hurting." Adrenaline was coursing through my veins and my heart was practically beating out of my chest instantly. In that moment, it didn't matter how many days it had been...the fear of it was the same as if her last one had been yesterday. I don't know if the ghost of these episodes or that visceral fear will ever really go away. I do know that I am thankful for every day she has without the burden of these awful things, and today I'm 365 days worth of thankful.