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.