Earlier today I took KayTar to the hospital to get a chemistry panel done. She's still flirting with dehydration and after so many days, her pediatrician wanted to be sure her kidneys were faring well. Long story short, her labs look good! YAY! Of course, there is longer version of the story, a nice little tale about uncooperative lab workers who did their best to avoid collecting KayTar's blood, but I'll spare you. Eventually, they conceded defeat, KayTar got her finger stick, and we went on our merry way. KayTar said, "That wasn't so bad! This is a GREAT DAY!" and cracked my heart just a little, because in the realm of her experience, a little finger stick and subsequent bloodletting equals a great day.
A couple hours after we got home, an episode came and washed her away, just like they always do. As if one moment she is lying on a beach, happy and whole, completely herself, and then the tide begins to come in and pulls pieces of her out to sea, dragging her beneath the water bit by bit. Josh and I stand on the beach staring at her intently, surveying what is left of her there on the sand, not quite able to trust our eyes. We ask each other, "Does she seem to be getting smaller? Does it look like she's being carried out to sea?" We stand and watch as more and more of our girl disappears, until we realize that it really is happening. By the time we see the truth of it, our little girl has been pulled under the waves of the suddenly turbulent sea. Her joyful face was suddenly blank. Her bright, smiling eyes were dark and closed. Her giggles and songs had turned to groans and mumbles. It happens like this every time, and yet, we are still surprised. We still can't quite believe our eyes. We still ask each other, "Is this it? Is she having one?" We volley it back and forth for a while, neither of us eager to be the one who finally confirms it, the one who calls it into being. We already know, of course, we just wish so fervently to be wrong, maybe just once. Even before I'm ready to admit to what is happening, my heart starts to race and my stomach drops. I suck in my breath and collect the medications. I give them. We tuck her in. We clean her vomit. We try to soothe her. And then we wait with our hearts in our throats, because that is all that is left to do.
On nights like tonight, she springs back to life in a few hours. She calls out, "I'm not sick anymore!" from her bed and we race in to see her, happy and whole again, but perhaps a little worse for wear. She says, "Carry me, Mommy. Carry me to my chair." And I do. I smile at her and touch her face and kiss her forehead and say, "I'm so happy you're not sick anymore!" She laughs because I'm smiling and says, "You so silly, Mommy!" and she giggles her sweet, sweet giggle. For a while she continues to spontaneously exclaim, "I'm not sick anymore. I not feel sick anymore!" Maybe she doesn't quite believe it yet, and we don't quite believe it either, really. We watch her diligently for the next few hours, afraid that if we look away she'll disappear again. Soon enough she seems to forget she was ever sick at all. She's laughing and dancing and playing again, telling us, "That wasn't so bad! This is a GREAT DAY!" And regardless of the day we've had, in that moment, watching my golden-haired girl smile and giggle again, I can't help but believe her.
19 comments:
SO glad her labs came back good. Bummer on the episode but what a little trooper kay-tar was today! :)
That must be beyond emotionally exhausting. I am so sorry that all this is happening.
she is an amazing little spirit.
And hopefully you can enjoy an episode-free season ahead . . .
KayTar continues to amaze me with her resilience and strength, that girl - she is a goin' places!
Nothing like a sweet little girl to put it all into perspective.
This is a very moving post, Kyla.
Kyla, is Kaytar on any kind of seizure medication? Just curious.
As long as my kids think today is a great day, then it's also a great day for me. Or at least a better day!
I'm sorry Kyla--but I'm glad her labs came back looking good--that's heartening.
I'm so sorry she had yet another episode. Her statements about it being a great day are such a heartening testament to her cheerful and optimistic little personality. She is so loved and secure in that knowledge and it shines on days like this. So glad those labs at least look good.
I know it is hard on them, but they bounce back so quickly it is only the mothers I worry about now. The premature aging of watching your child suffer and not being able to do anything.
this is beautiful but so heartbreaking Kyla.
The sea analogy was really evocative for me, Kyla. She's lucky to have you two for parents.
I feel like I'm right there with you. I'm not, I know I'm not, but that's the power of this post.
I second what Flutter said.
That KayTar could teach us all a lesson on what a great day is.
She is such a sweetheart.
I am constantly amazed where you get your strength. But then I guess there's no other choice. I keep hoping this one is her last one and from here on out there will only be dancing.
I have checked in here from time to time...I am amazed by your strength and your darling daughter's spirit. I hope today is a good day for all of you.
oh Kyla. I wonder where she goes. i just hate the thought of her, her huge spirit, being submerged.
Kyla, your writing is breathtaking. She's something else, but you convey life with her exquisitely.
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