We almost had it.
I knew she didn't fit the presentation. I knew it. But I let myself entertain the idea, a little too often, a little too long. But they said a pill could make her better. Just a pill. It is so simple, who can resist latching on to that kind of hope?
This post makes me feel sick. The joy and enthusiasm. The hope. I let it get away from me, this strict control I keep on those things. The reins just slipped away and I floated into the sky on a great big gust of hope. It is a long way to fall when you are so high up and you find that hope has disappeared.
Yesterday, I spent the day falling. I cried, a lot. I cried every time I thought about it. Or thought of having to tell someone. Or thought of thinking of it. Quietly, though. I hate tears. I hate people seeing my tears. I hate days where no matter what I do, they just keep spilling from my eyes. Yesterday was that kind of day for me.
It is ridiculous, though. I really didn't lose anything. I lost the idea of something. I lost the hope that there really might be an answer out there. And here I am, with an anxiety-ridden two year old who won't get dressed in the morning because of where she thinks we might be headed. We can't look anymore. We can't go traipsing through her body to attempt to find the hidden secrets, the keys to this mystery. She deserves a life outside of that. I never thought we would get to a point where we would be satisfied with a non-answer, because not knowing is so hard. You can't plan or expect or even be sure things are okay without an answer. But right now, in this moment, trying to get an answer feels worse than the alternative.
Our window has started to close. She is done and I won't force her past that. No appointments until January. Our insurance ends in February. I have no diagnosis to aid in making sure that she gets the type of coverage she needs. I was waiting to restart the search until after we had this answer. An answer could have provided aid. When we switch insurances, I don't know how much of her needs will be covered. I don't know what it will cost to see her specialists or have a lab run or have her hearing tested or see her therapists. I don't know what we will be able to afford for her in that way. I feel like everywhere I look, the world it covered in thick gray fog and it just KayTar and I huddled here in the tiniest of clearings. How do you choose a path in that sort of fog?
We canceled therapies this week, too. The decision was made for me, mostly. Our Tuesday therapist flaked on us, yesterday KayTar refused to put clothes on and I didn't feel it was worth the struggle, today I am canceling, tomorrow her therapist is out of town. Three week vacation, it is. It means I have three weeks before I have to tell her therapists we're back at square one. My tears will have dried by then, I think.
Oh, I am so sorry! A break sounds good for all of you. Best of luck.
I'm sorry. It was like something tantalizing had been dangled in front of you - always just out of reach - but at one point you could smell it and almost taste it before it was ripped a million miles away again. I don't know what the future holds for sweet Kaytar but I'll pray. I'll always pray.
Kyla. My heart breaks for you. I don't know what else to say. It shouldn't be this way.
I read this and I feel angry. Angry at the doctor that gave you so much false hope. Don't feel like a fool for emotions that anyone would have felt at the time. We all wanted desperately for there to be an easy solution, and they told you there would be.
I am glad you are all taking a break. I am glad Kaytar's holidays will about just being a little girl. I am happy you are able to give her and Bub that. I know it's just a small reprieve but I think it will be good for all of you.
Kyla--I am so sorry--I thought about you yesterday after I read the post. I hope things clear up with this break you are all taking.
I know it must be tremendously annoying to hear me rattle on, from the other side, about how things will get better--and I know T.'s case is different, but really--when she was 2 we were almost where you are--test after test, terrible symptoms, light sensitivity, episodes constantly, fear, anxiety. We latched onto hope after hope, too, and spent lots of money we didn't (and don't ) have. Looking back I don't regret all that because then, in the thick of it all, we felt we had to find some answers.
Don't beat yourself up over hoping for an easy-fix. How could you not hope?
How frustrating for you Kyla, I'm so sorry. It makes you wonder about how much they do not know in medicine, ya know?? It's, like, figure it out already!! I would be livid and sad, too.
Kyla, I'm so sorry. We were excited for you to. And with the hormone stuff you have going on, that adds to the stress.
We have kids with, um, special circumstances? And yes,there are times when we just take breaks. And then we gear back up and get in there and fight again. You will too.
I am so sorry and how frustrating. I have had a couple times where it has taken about 6 months to get a diagnosis but never this long. I don't know how you have stay sane and able to persist.
I think it sounds like a wonderful idea to give everyone a break. I don't know how you can take test after test and have it normal and then look at your child and know that something is obviously not right.
It's just not right.
I'm so sorry, Kyla. I can't help but feel your pain. I remember that hopeful post...we were all so very hopeful right along with you. It was contagious. And now this part is too. I'm sorry.
Enjoy the break and live in those moments, try not to look ahead too much. You all deserve that.
And just to maybe make you smile: my "word verification" to type on this post is "pbppt"...an appropriate sound, I think. :)
That little hand.
It's okay to grieve, you know. Losing the hope of something is a loss, a very real loss.
And, it should not even be a worry that you can get the care for your child that she needs. That really chaps me.
Kyla, I am so, so sorry. (HUGS)
Using My Words
Ah, Sweet. My heart is breaking right now. For you. For her. For your boys. I wish I could come down there and put you on my lap and rock you to sleep and whisper "there, there. Everything will be ok" with all that maternal conviction we force ourselves to mutter.
Oh, Kyla. I'm so, so sorry.
I am so sorry that the answer isn't nice and neat. I'm sorry that you have tears. I'm sorry.
It really shouldn't be happening this way.
And just like that my heart broke in two.
This is so wrong. It shouldn't be. On so many levels.
I'm angry, sad, and mostly, so sorry.
Hi Kyla, A bad day to delurk but I just wanted to say that I am so sad that KayTar's dianosis wasn't what you (and we all here in the blogosphere) hoped it would be. In your previous post you said that 20% of the kids that get the genetic testing don't test positive for the abnormality anyway (I think that's what you said) so is there any possibilty that she is just in the 20%?? I'm sure that you and the doctor's already went over all this but that tidbit of info just seemed to stick out to me. I hope this doesn't come across as ass-y or anything because that is the absolute LAST thing I want it to be. Maybe more like a naive reader still clinging to hope that a simple answer is out their for a sweet little girl.
Karen: That was true only for the gene test. The was a retesting of her spinal fluid. The initial findings that led them to this diagnosis are not present, meaning it was likely a lab artifact of some sort.
I wish, though. I do.
oh Kyla. I am sick sick sick over this.
I don't want you to lose hope or insurance.
I am sending you new hope that KayTar will continue to improve and that after your three week break you will all feel better.
And some more smarties. I wish I could send some medical benefits to go with them.
Oh, I'm sorry, sorry, sorry.
Kyla. This post just kills me. If it's any comfort, I'm crying too.
Thanks for the clarification Kyla. If only it was that 'simple', right? I can't even begin to imagine how much not knowing sucks. As much as *I* wish they could figure out what was going on, I know that it doesn't even scratch the surface of how much *you* guys want to know. I'll keep lurking around (!) and hoping that an answer will be found for your little cutie.
I can only imagine the frustration and sadness that you are feeling.
It seemed like you were so, so close and then to be back to square 1 just sucks. I am so sorry : (
I'm so sorry Kyla.
I'm sorry sweetie. It's hard to hear an answer like, "We don't know." It happens more than you know, not that it's any comfort right now.
It's hard to accept a "broken" kid, not that I think she's broken. I spent years looking for answers with my daughter and found none. Finally, one day, I realized, this is it. This is how she is. It's still hard and she still surprises me. But when all is said and done, I love my daughter, just as she is.
I know how disappointed I feel, but I can't imagine how much more magnified it must be for you. Don't feel bad for letting it all out yesterday...that's a lot of frustration for one person to bear.
Impossible to know what lies ahead for KayTar, but I hope that in the midst of all of it, she will be a happy, content little girl. That's what is truly important in life!
Kyla. Honey. I am so sorry. It is as hard to lose hope as to lose something more tangible, I know. But I know you do and will do what you know to be best for your girl, whether that means pulling back or pressing on. And I hope that you get the support that you need to cover whatever she needs, insurance-wise. Or else? You could always move up here... We'd welcome you with open arms. She same ones sending you hugs now.
Don't beat yourself up for hoping; where we any of us be without it?
Oh Kyla! I'm so sorry. There's absolutely nothing to say. I'm reaching across cyberspace with a hug and a shoulder to cry on! Will continue praying for you.
I am so sorry that there are no answers. I guess sometimes we just don't know. Hugs for you all.
i'm so sorry... i know just how it feels to have a possible diagnosis within reach and then to have ripped from you... willow's problems are less complex than kaytar's but i don't think we'll ever get a diagnosis... and i still find that hard to accept...
I love you, and I am so so sorry. I feel so mad and helpless to make it better for you and yours.
wishing I could help...
Oh Kyla, I just want to come over and give you a big hug. Except I don't know where you live. Also, I have a cold.
Crap on a crap cracker, my friend. Don't be mad at yourself. Anyone would want an easy solution to take away the frustration of all you guys have been though. It would make it so much easier if you just knew that you had done everything you could to make things better for Kaytar but you aren't even given that grace. I can tell you though that you've gone above and beyond what many parents would and while Kaytar has her struggles she also has a beautiful happiness and strength in her and that's something that comes from you and your family. You may not have found the perfect drug to make her all better but you have managed to create the perfect environment to allow her to grow and bloom into a sweet, happy child despite of the hardships that she's faced.
And for that you should be proud not just of her, but also of yourself.
I am so sorry. It would be easier to have a diagnoses. So so so sorry.
Oh, Kyla. I'm so sorry. This is so terribly unfair, to be so close and then to have it all ripped away.
I think you're right about taking a break from the doctors at this point. Step back until the New Year, focus on the insurance crisis (that shouldn't be, d*mn Congress),. and then go from there.
Oh Kyla. I feel your pain so acutely that I'm right back to feeling it myself 3,4 and 5 years ago. It is physically painful to remember that. I am so sorry for your pain. I am so sorry that you didn't get the answer you'd hoped for.
Please don't let go of hope. I believe with everything in me that you WILL have an answer. This just wasn't it. And you're so right, who wouldn't have held onto the hope that this possible diagnosis was a fit, when it could be treated with a pill. What parent of a special needs kiddo wouldn't give the earth to have an answer like that? Again, I'm so sorry this wasn't it Kyla.
Cry your eyes out for as long as you need to. We are thinking about you, every day, and you are in my prayers at night.
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