Last night, at the end of anatomy lab, I was sitting with my new friend and helping her review the foot bones one last time when she asked me about KayTar. It wasn't out of the blue, I've mentioned KayTar a handful of times. I've made comments about shuffling her to and fro various places and I've given the short and sweet "She's got some medical and developmental needs." explanation. But last night she said, "So what exactly is going on with your daughter? Is it something genetic? Is she behind her age group?" And so I gave her the shortest version of it I could manage.
I told her no one is sure what is going on. She's delayed, but brilliant at the same time. I told her she can't run or jump or climb stairs, but she pulled one of my novels off the shelf the other night and sat down to read it. I told her she is deaf in one ear, and that she doesn't really eat. Pediasure is our best friend. I told her she didn't walk until she was over two and used to have the cutest red walker. I told her that KayTar's joints are too loose and her muscles are a bit floppy. I told her she has sensory processing problems, that innocuous stimuli is often misinterpreted as dangerous and offensive. I told her she has little lesions in her brain, areas of demyelinated tissue for unknown reasons, maybe a congenital virus. I told her she's had MRIs, CTs, LPs, EEGs, and probably most of the rest of the alphabet, too. I laughed. I told her she is doing well, though, thriving in spite of it all. She's come much farther than we ever thought. She's in therapies and it is making such a difference.
My friend said, "You must have amazing insurance coverage."
And I told her that we used to, but we just lost it. I explained why we couldn't find new coverage and her eyes filled with tears. She said, "You think you have it bad, and then you hear someone else's story..." I tried to make her feel better. I told her we're okay, really. Because we are. I said, things have been worse...at one point we had nasty possibilities on the table for KayTar. We thought it might be a tumor. Once we found the lesions, they thought leukodystrophy was a possibility. She's alive and she's thriving and everything else is gravy, I said. I told her the biggest hit was losing the private therapies...but at over $350 a week, we just can't continue them. But I told her we have some possibilities on the horizon and things might work out to get her back into therapy at low or no cost. She told me, "We just lost our coverage and my kids have asthma, sometimes they have attacks and the bill can be like $300, but it is nothing compared to what you guys are looking at." Her eyes were still red and wet, I think that mentioning the fact that in the early days we thought she might die wasn't as soothing as I thought. She said, "How old are you anyway, 24, right?" I said yes. She said, "I was 25 when I had my first baby and here you are taking care of all of this, and you've been doing it since 21, and even younger with your son? That's a lot." I agreed. It is a lot, but it is normal for me, for us. It just is what it is. The insurance thing sucks. But the rest? It's just life. And she really is thriving. It is amazing. If you met her, you might not even realize anything was different, save for her wee hearing aid. Again, I told her we are fine, because she still had those sad reddened eyes, moist with tears.
And then we reviewed the foot bones once more, because life just goes on.
There is always someone better off and always someone worse off, but our struggles are difficult no matter what they are.
It is hard Kyla and I admire you for the way you handle it all.
Your attitude in dealing with all of this is just amazing to me. As an outsider, it is hard to look on all of that and imagine having the grace to go through all of it, but God gives it to you when you need it, doesn't he?
Damn - you always do it better than I ever imagine I could. You are amazing.
Lisa b is so right...
You do it all amazingly well--and with so much strength and grace.
You're amazing. And can I tell you how gorgeous Kaytar is? Man, I feel like I remember her as a teensy baby with the transitional baby mullet and now she's this grown girl; she's come so far!
You guys are so brave and tough and resiliant.
Hey, email me. I want to talk to you about something.
Life does indeed go on. You and your family are strong and beautiful. You're all lucky to have each other :)
Your grace is so quiet, yet so strong.
I hate that you have to say "you're fine" because, my friend, we all know there is nothing fine about this situation.
I am amazed that when we think we really have it bad, there is always a tougher story. I think if I had been her, I would have cried too...I loved that you tried to make her feel better:)
I'm not surprised to read this. Your situation has certainly brought tears to my eyes lately. You amaze us all sweet Kyla.
You have more people!!! :)
That's awesome that they moved up your appointment with the school - (advice) get an extra copy of the report to send to the U - might as well use their resources and copy machine :)
You don't say how the woman's response made you feel, but it reminded me of a time, shortly after I left cheating ex-husband, that I met a woman who had just left her verbally abusive ex-husband. And both of us reacted like the woman you described: to each of us, what the other person had been through seemed shocking and terrible - far worse than the unfortunate but ordinary demise of our own marriages. Personally, I found it rather validating - like, hey yeah, I really do have it tough, and that means I'm kind of a star!
I hope that's how you felt, because you are, kind of a star.
You are amazing. Most of these things you're going through would make me buckle.
I guess life does just go on, and the foot bones gotta be learned, right?
Kyla, you kill me with the humour and wryness you inject into this post--"i guess telling her how we thought she was going to die wasn't as comforting as i thought"???--I'm howling and then wondering, how is that funny?
But it is; you are. Well done.
I am in awe of you...
"It just is what it is."
Amen. And I'm super happy, you are what you are =)
she is not the first to shed tears over kaytar and bubtars' lack of insurance. oh kyla, your heart is so good and kind.
Running on empty
what i hear in this post, other than the fact that you are wise and gifted with narrative, is you trying to look in on yourself, gain perspective on this life that just is, that is your reality and yet you know makes other people cry.
funny thing, to be that person ...to carry the weight of your reality in addition to the strange power to awe it bestows on others. it must be hard to sort the two, the struggle with what is not really fine and certainly not fair with the grace that makes others look at you like some sort of angel.
just offering up my respect, Kyla. and wishing it were something that could help.
You are such a strong person Kyla - you're an inspiration and I suspect that, more than anything, is what moved your friend to tears.
Oh...what Bon said.
At some point, we all must carry our own lives, yes? And how complimentary and yet awkward can it be for others to perceive our lives as burden to us, and affecting to them. All while being awed at our ability to shoulder said life/burden. KWIM?
Youv'e got a strong back, friend.
Dear Kyla, at 24 I was feeling overwhelmed if I had two essays due on the same day. I generally leave here feeling in complete awe of all you do.
"And then we reviewed the foot bones once more, because life just goes on."
Wow. Just wow.
oh kyla, you never cease to amaze me with you spirit.
You make me cry often - mostly out of anger at the insurance situation. SOmetimes out of how amazingly you manage it all. Take her comments for what they are worth - you are handling a lot, and doing it with more aplomb than most could manage.
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