While at BlogHer, this post came up a few times in conversation, I mentioned more than once that I STILL cannot read it. So, what did I do late last night? I made myself read it. I squirmed and my insides twisted in on themselves, but I read it. The whole thing. And then I got to the comments and had to click away. All of your beautiful, hopeful, kind words, words I read over and over in the days following that post, are too beautiful, hopeful, and kind for me to contemplate in hindsight. One day I'll read them again, I know, thankful for the hearts that beat right alongside my own, because truly, I am so very thankful for every last word we've traded back and forth in these spaces for nearly two years now.
That post, and subsequently this one mark a fairly important milestone in this journey of ours. Those moments mark the point at which I stopped actively looking for an answer. (As an aside, I never realized how far apart those two posts are, in my memory they happened almost back to back; memory is a funny thing) From the moment I read about that condition, I knew it wasn't a logical fit for KayTar, but it didn't matter. It was an answer and it was within reach. The validity of it didn't matter to me. The ANSWER was what we were looking for. The ANSWER was the reason for multiple MRI's and CT's and EEG's...for LP's and ABR's and chromosome microarrays. The ANSWER was what we dreamed about. And we were ready to accept it in whatever form it came to us, regardless of the reasons it didn't quite fit our girl. We wanted it. I wanted it. The reason I still have trouble reading that post is that I don't know if I've ever felt that level of mindblowing excitement in any other capacity. It oozes a sort of blind hopefulness that is unusual for me. I'm hopeful, yes, but factual. I like to hedge my bets in sure things and remain cautiously optimistic for those things that are unsure. With an answer in sight, I completely lost my objectivity. I wanted an answer so badly that it surpassed logic and ripped my firmly planted feet right off the ground. The force with which I plummeted back towards earth was jarring at best, shattering at worst. It was not an experience I'd like to have more than once, thankyouverymuch.
It wasn't about the diagnosis at all, it was about the immediate stock I put in it, the value that I placed on it...and the realization that I had lost perspective about why it was important in the first place. And since that moment, that crash landing back into the land of logic, the siren call of the elusive answer has lost its appeal. I still think about it, of course I do. But I no longer to expect to find it, which is a significant difference. KayTar is KayTar. She just is. She has chronic constipation and asthma and sensory problems and a feeding disorder and a sprinkling of tiny brain lesions and those damn episodes (but, ahem, not for 93 days now) and gross motor delays and an ataxic gait and hypermobile joints and low muscle tone and wonky balance and periodic light sensitivity and unilateral hearing loss and she's gone from having speech delays to reading and speaking fluently and picking up new languages at the drop of a hat. She is who she is, she has certain challenges and certain gifts and we may never know the catalyst for any of it. We may never have a complete picture that allows us to imagine what her future holds. And I think that's okay. Understanding the why has become so much less important than getting to knowing the who. She may never be someone who fits nicely into a diagnostic box. She might never be a totally typical kid. Or she maybe she will be. But she, our girl, lets us know what we need to know, when we need to know it. This journey that has started out as ours, ultimately, will become the journey that is hers alone. As long as she knows where she's headed, I'm just happy to be along for the ride. It sure has been wild so far.
I hadn't read either of those posts... Ohmygosh there are no words.
That KayTar sure does keep you on your toes but one thing is for certain ~ life will never be boring with her in it! :)
I adore you and her and I just hope and pray that these first difficult years are looked back upon with reverence as she is completely happy and healthy.
Your story makes us all stronger.
You're a good mama to her. You really, really are. Thank God that she was born to you, who would fight so hard for her.
however did you get so wise, friend?
This post is wonderful, Kyla. KayTar is KayTar and she is phenomenal in every way.
Beautiful post - I love that you said you start out on the journey together but ultimately it's hers. All mothers should have such perspective.
and she is lovely.
Your acceptance of who she simply is a testimonial to who she will be as she grows.
you and your husband are the sun and the rain and she will just be her. perfect.
Perfect daughter of a perfect mama. You two are just PERFECT for each other. She is amazing...and such a gift to us all, that KayTar. We are so glad to be part of her life! :) What a girl!
life is all about learning to live with the questions, i think
i've been reading but not commenting much while on the road - i hope kaytars record breaking streak continues!
Not knowing what to expect or what you're dealing with is scary- you're such a strong person.
Yes, being lost in that darkness of fear and not knowing. To have any answer to hoist yourself up onto and then use as a catapult...that is enough. That was the starting point, wasn't it? And now look at her! Because she has a mom who cares. Because she has a mom with unlimited determination.
Kyla, I am really happy to hear an acceptance in yuor voice here. I was talking to lisa b. once, who noted that knowing the source of her child's medical concerns did nothing to lessen them. It's a hard lesson to learn, I suppose, that it might not matter why unless there's a cure associated with that, but too often, there is not. There is only acceptance and whatever therapies might help your child live as well and as "normally" as possible, and all of that is exactly what you've been doing anyhow. Still, for your peace of mind, it's good to hear you making peace with the unanswered. It's tough, but you are strong.
I squirm with you on that first one--I know it must be painful to read it now.
We are content with our answers now, even if they are not really answers. But at some point you have to find peace, I suppose, and take it a day at a time.
It sounds like you're in a good place. She's lucky to have a wise, loving mama, like you.
she is beautiful and you Kyla inspire me beyond words.
I was not sure what to comment on that post because it did seem unlike you but who could not hope? What mother could not?
In an attempt to make you feel better, but knowing I may be a complete PITA, I posted today about the kids at the Sotos Conference. Even kids with the same genetic diagnosis have a huge range of abilities.
It never seems enough when the docs and OTs, PTs etc point out progress, but it is all we have.
Maybe I was lucky in that before Julia was born I had a sense that we might never know what her future held. But who does?
Kind of hits home with me. I so want the diagnosis so we can go on our merry way. I am trying to come to terms with the fact that I may never know why my daughter is so wobbly. After recent speculations I am happy to have my daughter and to see her smile and hear her animated conversations. I am happy just to have her with us. I guess there will always be the hope that we could have an answer but to what extent are we willing to go through to find I think we are at it. You are so right at some point this journey will be hers, all I can hope is that we have prepared her enough for it.
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