Thursday, July 09, 2009

Disclosure

I have a little confession, I've started thinking of KayTar as a normal-ish kid. Yeah, yeah, I know the list of medical issues. I know that she has physical and processing differences. I know we've completely rearranged our life to facilitate our current level of normalcy. In spite of all of that, I do think of her as normal-ish most of the time. Most days, good days, she appears normal to the outside world, to the people who don't have access to her medical files or are not trained in spotting developmental differences, because of that, we've started to see her in that light, too.

When BubTar started swim team at the YMCA, we let KayTar decide if she wanted to go to the daycare room or watch BubTar swim. She chose the playroom, so we allowed it. We didn't give them any special instructions outside of DO NOT FEED THE KAYTAR, which is non-negotiable due to her propensity for anaphylaxis. We didn't mention her asthma, poor balance and muscle tone, neurological episodes, hearing loss...none of it. We are always on site, available at a moment's notice if anything goes wrong, so we decided to let her try her hand at normalcy for a change and allow her to function in an environment without special considerations. So far, so good, minus the time they fed her a snack. They have noticed she is quite clumsy (walking into things, falling) and my mom mentioned to them that she is deaf in one ear, but she's done a pretty good job holding her own with the neurotypical kids.

KayTar started swimming lessons this week and I decided to take the same position, let her start out as a run of the mill kid and disclose what I had to, when I had to. On the first day, she wasn't responding to their commands, so I had to disclose that she is deaf in one ear and if she doesn't respond they'll need to speak up or move to her right side. Today, they walked to the other side of the pool and I was going to stay in my seat and let her do her own thing with her class. I watched from across the pool and noticed she wasn't opening her eyes and she was fussing. My stomach dropped and I immediately worried she was having an episode. I booked it over to the other side of the pool where she was definitely having a difficult time and I ran through the questions, "Are your eyes sick? Are you spinny?" She said no, but still couldn't open her eyes. I helped her sit down and she put the towel over her head like a tent. Of course, the swim instructors were eying us at this point, so I said, "She has neurological problems and sometimes the sunlight makes her sick." I sat with her while the other kids had their turns and eventually it passed enough that she could take another turn, with her eyes squeezed shut. Once they got back to the regular side of the pool, a more shaded area, she seemed fine, but I was shaken.

These things happen to her, frequently. There are many days she can't tolerate the sun. She has episodes. Asthma attacks. We tube feed her. She falls over. She can't always keep up with kids her age. She might be able to pass for normal frequently, but she isn't REALLY normal...our life isn't REALLY normal, though most days we forget that it isn't. My stomach turned flip-flops the rest of her class, I could not wait to get her out of the sun. I was so afraid an episode was dancing around the edges and by letting her continue her lesson, I was giving it a chance to take over. At the same time I wanted her to complete her lesson, to enjoy herself, to be with the other kids. I did let her finish, while I wondered if we would be headed to the ER today and if my math final could be rescheduled and I kicked myself for not picking up her Imitrex prescription yet. She was okay after the lesson, but when we stepped back outside to walk to the car, she couldn't open her eyes or walk and I scooped her up and carried her, her still body in my arms, her head lying limply on my shoulder. My stomach dropped again. Is it? Isn't it? This was how the episode at the butterfly museum started. It wasn't an episode this time. Once she was out of the sun, she was fine again, but I am still anxious, my stomach in knots worrying over our lake vacation this weekend, worrying about the episode that is due Monday, worrying when if and when it will happen, worrying about the new medication and the trip to the emergency room. I know that this anxiety won't pass until we are safely on the other side of it all, and I am reminded once again that as close as we might seem to it on a good day, none of this is truly normal.

21 comments:

Bon said...

you're right, your "normal" and the rest of the world are not quite in sync, and you must walk such a hard balance with it.

i know that even in my own head around O's very minor asthma issues there exist two conflicting dialogues of "oh i should be a responsible parent and make sure we have x and y and z lined up in case of blah blah blah" and "oh i should be a responsible parent and allow him to find his own limits and not be prelabelled and blah blah blah"...and the societal discourse around helicopter parenting makes me wary to overdo it but...bah. you can't win. and that's even standing firmly within the privileged range of "normal."

all i really got is, i hear you and feel for you, and it's got to be a weight, the pressure to care for her just right without making it too much.

i do know she's extraordinarily lucky to have you...and vice versa.

mommamia said...

This is something I can relate too. I will also tell you that deciding what to disclose and what not too does not get any easier.

I still wrestle with that. My daughter just wants to be a normal college girl. Most days it is possible. Somedays it is not.

Kaytar is very lucky that you are trying so hard to make her life as "normal" as possible.

Karianna said...

Yeah, I am constantly walking that disclosure line - sometimes my hopes for normal work out just fine, other times they don't - but then the prelabelling has had both positive and negative outcomes as well. Hard to know how much to disclose, when, why...

KayTar definitely seems simultaneously "normal" and "extraordinary" as I read about her adventures. She's terrific.

Magpie said...

she's an extraordinary child, with a lot of normal in her. like bon said, she's lucky to have you.

Becca said...

In so much of what you write about her she sounds like an average kid too. It is a testament to you and Josh that she is thriving the way she is. Good for you for letting her start to set her own boundaries. Good luck with the upcoming testing.

The Tutugirl said...

Life feels normal to you sometimes because for you it IS. I think every family has their own "normal," which is really just whatever we adapt to. Its good that you think of her as a normal kid, and she's lucky to have such a great caring mom.

Beck said...

What becomes our "normal" lives can vary SO much from another family's life, really.

natalie said...

I've been sort of teary-eyed today. I'm not sure why. This post pulled those tears right to the surface again. I'm so sorry that your normal isn't the normal so many of us experience. I'm sorry for KayTar that she is limited by the amount of LIGHT she can tolerate. How in the world is THAT fair???

I wish I could hide under the towel tent with KayTar and snuggle her close, take away the normal she knows and let her run and play in the field like other 4 year olds. ARGH.

Now I'm going to get my box of tissues and have a good cry. And no, it's NOT my time of the month, thank you very much.

flutter said...

she is one special little angel who is just so lucky to have you as a mom

Woman in a Window said...

I don't blame you one bit for trying to normal. And as we all know, all normals are different anyway. As long as you've a finger on the pulse of her health, as you've so clearly had, keep aiming for normal because those easy moments in between are enough to feed the more difficult ones.

It strikes me here though that even though you try for normal you are so ready in a moment to go to that other spot. You really are the best mother for Kaytar.

mamatulip said...

You are an amazing person, Kyla, and an amazing mother.

Lisa b said...

"almost normal" is my favourite descriptor for Julia.
it pretty much sums up my life.

Your description of the swimming lesson had me on edge, how stressful for you. I am so glad it didn't turn out to be an episode. Still, it underscores the constant vigilance that is just not required in 'normal' parenting.

tierd said...

You are a fabulous mama, and I hope you all figure out her mysteries very soon.

Lisa b said...

Did I send you this?
http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=8869&isuKy=860&isArt=t&fromfold=
I think Frank does a really nice job of explaining that not even the healthcare providers really 'get' how stressful and difficult it is to care for a complex child.

Corinn said...

If regular sunglasses still let in too much light for KayTar, have you asked her eye doctor about specially-made ones? They are available to... fight? photophobia. (My apologies if you knew that years ago!)

In even more obvious suggestions, she might like starting a nice hat collection; I can't tolerate sunlight very well either, so I have a collection of baseball caps to wear whenever I'm outside during the day.

sheree said...

well if that's not emotionally exhausting!??!

Ugh. I hear ya though...I forget sometimes that I am a "special needs" parent until I'm placed in a situation such as Kaytars swimm lessons and BAM...oh yeah. :(

Hugs.

Laura said...

This may be silly, but is it possible she is allergic to sunlight? Or can't metabolize it?

Julie said...

Gosh what a game of push and pull back. How stressful for you trying to know how much you can let go and what you can't. There is a bunch of stuff in Kaytar's little world that is not "normal" but WOW how far has she come?! Really, I am so impressed with her!

Amelia said...

You are right, it's not "normal" but the fact that you don't always introduce her now with qualifiers just indicates how far she has come. It is my hope (and prayer) that she will continue to improve as radically. But our Kaytar will never be "normal" She is so exceptional. Everyone who meets her, in person, or virtually sees that. :)

CMK said...

I haven't been able to say out loud yet that my DS is "special needs" He's only 15 months and not really ivolved in typical kid activities yet outside of PT. Most of the time, I think of him as a normal kid and don't give it much thought. Until I find myself explaining his neurological issues and "low tone" when good meaning folks ask if he's walking yet and he only barely tummy crawl. We're 2weeks overdue now for an episode and I find myself on edge and unable to relax, waiting for the dreaded attack that I hope never comes.
So here's to feeling normal even if it's only for a moment!

Kyla said...

CMK: I remember the first time I writing "special needs" in regards to KayTar. It felt like a total sucker punch...now I don't even give it a second thought, but it takes time, I think.

That is exactly how I feel about the episodes. I know my anxiety isn't going to help, but I can't seem to step back from the edge when she is due for one of these things. It is nerve wracking. You hope it doesn't happen, but can't truly relax until it does. Ugh.