Once upon a time, I was panicked almost every minute of every day. So much was unknown and KayTar was not thriving, and it felt like I couldn't breathe under the weight of it all. Things felt critical. As we have gleaned information from tests we've been through, and as KayTar has begun to thrive in the midst of it all, the panic has receeded. Of course, I still want substantial answers, but it doesn't feel like a critical situation. I don't worry that she has a tumor taking over her brain, or that her brain is slowly dying. As much as I want answers, we have the time to wait on them. I feel comfortable in the waiting. We've ruled out the really terrible possibilities. We have an idea of what is happening, even if it isn't a complete picture. Things are okay. We are okay.
We don't know if she has had a seizure. We don't know exactly what causes the episodes. We don't know if the episodes are a thing of the past. We don't know why her eyes are behaving oddly. We don't know what has caused this change in what had become the norm. We don't know what exactly caused the lesions and the hearing loss. But we know she is thriving. We know she has an amazing pediatrician and team of specialists looking after her. We know that her MRI did not change. We know she hasn't needed a Pediasure in almost a month. We know she is eating well, so well that I have been slacking on my caloric Excel spreadsheeting. We know she is walking, talking, and signing. We know she is friendly and happy and silly.
So while we have unanswered questions, the most important questions have answers, and by and large, they are good answers. We are pleased and secure in the fact that she is doing so well in spite of the unknowns, and it makes it that much easier to wait for the rest to be answered. And KayTar can't be discounted...she can never be discounted. In her own little way, she is providing more clues and as we encounter odd moments, it just adds more pieces to the puzzle...one day we will have the whole puzzle in front of us. Then it will just be a matter of putting it all together. We will get there one day, hopefully soon, but in the meantime we are okay with waiting a while longer.
16 comments:
You are so wise, with such a wonderful perspective. She is precious, so adorable. :)
Don't forget the fact that she is so darned cute.
So good to hear you can see the light, even when you are left waiting for more answers.
Okay Persistence is in my lap. She has a few words about KayTar's photo, which she was very excited to see.
Who dat dirl?
(I say her name. She repeats it several times.)
She dot lellow hair doo. (Her way of saying blonde.)
Smiling, Mama, she happy dirl.
Oh lear lobe! (Persistence is fascinated by ear lobes and apparently approves mightily of KayTar's ear lobes. This is a high compliment.)
I yike dat dirl, yike her lear lobes!
So tell KayTar Persistence says hello. ;)
You're awesome...you have such an awesome outlook.
Look at that bright girl you've got there...great pic.
I agree with Julie-- you are so wise about all this. Kaytar is beautiful and perfect.
That is a beautiful picture.
And you are one strong and smart lady.
Kyla, you're so wise and patient and loving and all that great stuff. KayTar is doing so well and she's blessed to have an entire family that treasures her so much.
By the way, the comment from julie pippert is hilarious! Persistence sounds like a doll herself!
Look at that girl of yours - so beautiful!
We haven't been through the same situation as you guys (not even close) but I spent so much of last summer terrified for The Baby that I empathize SO much with you write now. I'm glad that the worries are more manageable, that they aren't eating up your life.
Yes. I see where you're coming from with this. She is so wonderful and perfect right now that all the "despites" don't add up to panic in the way they once did. It's all about the perspective you've finally been afforded after so many hard months.
YEs... you are wise and you are patient... and I try to follow your lead :)
Nothing to add except what a wonderful post and picture : )
I am sure it is hard. I admire you and your parenting.
I remember something about darkness...that you need to know what it is to see the light. I also remember wanting to slap the person that said that to me.
I am so glad you're living in the sun.
This is why she's so lucky to have you.
kyla: i've tagged you for an unusual meta-blogging meme. come by my site to see what it's all about. thanks.
I couldn't stop scrolling down to the photo - she is so full of life and she is so DARN CUTE! Obviously it's all the love that makes her that way.
I completely look up to you as a mom Kyla - seriously, I do.
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