Friday, July 16, 2010

One Year Later

It has been one year since KayTar's last episode. I thought that when it arrived we'd shoot off fireworks or hire a skywriter or get a tattoo. Hell, I never really thought it would arrive at all!

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.

15 comments:

Karianna said...

Hooray! I'll knock on wood and do a rain dance, and pray she never has another. What a terrific milestone. XO.

Nylonthread said...

HOORAY!! Your post made my day. Thanks for sending it out before I left {my stinky day at} work. I hope you can say this next year and the next... :-D

jo(e) said...

What a milestone. I hope this continues.

KayTar has amazing parents! I can't imagine going through what you've been through.

Gizabeth Shyder said...

Here's to fireworks, tattoos, skywriting, and wonderful anniversaries. As Nylonthread said above - I am hoping for many more anniversaries of this nature.

~aj~ said...

For some reason I've been thinking about KayTar's episodes more lately and what that must have been like for you and Josh during those horrific times. I'm hate that she ever had to experience those. Hate! But isn't it neat how experiencing that now makes every day seem like even more of a blessing?

So happy she's made it to the 1 year mark!

natalie said...

I sat here and cried at this post. I'd forgotten about the two plane incidents and about the museum. Thank God for 365 days of freedom from the burden of episodes.

Hetha said...

I remember your posts about each of these incidents and can't believe a full year has gone by! I still remember the exact date and time of our last apnea episode, so I know what you mean about these things taking their toll on our psyches. Keeping my fingers crossed that it continues to fade further into very distant memories for you ALL.

InTheFastLane said...

Thank goodness for this year! I hope it continues.

Mimi said...

Wow! I can't believe it's been a year. I remember when you were celebrating 40 days between episodes.

I wonder if you're just going to have a big cry or some sort of emotional collapse now, yourself -- just from realizing in retrospect exactly how awful that whole ordeal was, for so long. You know, we're all really good at holding everything together, until it's over.

I'm celebrating for you guys today, and I'll have some Kleenexes ready if you want to freak out in retrospect ...

flutter said...

go little girl, go!

Aliki2006 said...

You know I know how you feel...when T. had her first episode a week ago after nearly TWO years episode-free I could have sat down and cried. Fingers crossed for us that was just an isolated event--fingers crossed for you that KayTar's episodes are a thing of the past FOREVER!

Magpie said...

Wow. A year. Amazing. Here's to many more episode-free years.

Kelly O said...

Hooray! Aw, this made me cry. Hooray!!

Amelia said...

I'm thankful too. What an answer to prayer. I'll continue to pray that next year we'll be celebrating 2 years!

Julie said...

Wonderful!!!!!!! Please keep it up!