Life Sentence

Amazing Story One: How I Became a Super Hero

By Sweetie

At first I was a scientist making a stress ball with rubber from space. (I did not know that when you squeeze it, it explodes.) The stress ball gave you super powers when you squeezed it, and when you squeeze it again, your super powers go away.


Then a whole entire week later I finally finished it. I tested it to see if it worked. When I squeezed it, it did give me super powers... but then it exploded. Now I am, and will be a superhero for the rest of my life.

The End. 

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Hi there. My name is Amy and I am an over-dramaticist. I look for meaning in everything, especially when none is implied. It is a sickness. Please help me...

(Is probably why I love(d) studying literature so much. Once those academic types make you understand that Mr. Rochester's name sounds like a harsh, stoic, stone-like name - thus indicating the very character of Jane Eyre's love interest - well, there's just no turning back. You see it everywhere.) 

Hubby and I met last week with Sweetie's teacher, guidance counselor and school nurse to establish a 504 Plan for her. This was at the suggestion of the school nurse, as she anticipated with Sweetie's chronic Lyme Disease diagnosis that there may be times when Sweetie feels ill and may miss several days of school in a row. With the 504 Plan, we would ensure that she'd not be penalized for days missed and would get extra time given to her for assignments due, if need be.

Basically, we signed off on what any reasonable parent should do anyway - get their kid's school work from the school if the kid misses more than 2 days in a row from class, to be done at home. Hubby and I don't feel, at this point, that Sweetie will ever really need this plan, but, you know... it's there if she does. They're looking out for her, which is nice.

Anyway. 

While I was reading over the 504 contract, Sweetie's teacher randomly pipes in with, "(Sweetie) says that she'll have Lyme Disease for the rest of her life." To which Hubby and I kind of looked at her like, "Well, yeah. Pretty much. No one really knows, but, yeah..."

I just thought it was a really random thing to blurt out while we were all otherwise being silent and trying to read the paperwork.

Her teacher did go on to say that, at the same time, Sweetie is not stating this in any sort of depressed or saddened way. She's stating it plainly, as breezily as someone would state that they have curly hair. To which Hubby and I looked at her like, "Well, yeah. That's Sweetie. Doesn't let anything get her down. Great all the time, and all that."

At any rate, that was pretty much the end of that exchange, other than the fact that we did express that, really, it depends on who you talk to to know if Lyme is truly chronic or not, or just how long a person will feel the effects of it. With Sweetie's treatment, we are hoping to get her to a state of prolonged remission, if not complete recovery. But, yes, we haven't shied away from telling her what we know about late stage Lyme.  It could be that she does have to deal with this for the rest of her life. 

But, me being me, I kept thinking about this for the rest of the day. Wondering if Sweetie was truly worrying about suffering from this disease for the rest of her life.

That night, at the dinner table, I tried to make what we know about Lyme more clear to Sweetie, telling her that no one really knows if you can get rid of Lyme once it's in the late stage phase. It may very well be possible, and that's why we need to treat you with so much medicine for a long time now. You could also get to a point, we told her, where you technically do still have it, but you aren't bothered by it anymore, or as much. But as far as we know, it's also not very probable that you'll ever be completely rid of it. Sweetie said she didn't realize all this and seemed comfortable with my hopefully better explanation of things.

Then, some days later, she brings home the above Super Hero story. A story, we found out upon questioning her, that was not assigned at school. She just felt like writing it one day while at The Boys & Girls Club.

It's a great story, isn't it?! I LOVE it! But - again, me being me - there's one phrase in there that particularly catches my attention... the fact that she'll now be a super hero "for the rest of my life."

Just like how her teacher said Sweetie described her situation with Lyme - a condition she'll have for the rest of her life. Here, she's written a story where she accidentally finds herself having to be a super hero for the rest of her life (after squeezing a stress ball, no less. Oh the field day I could have with that if I let myself!) A super hero able to fight all the evil in the world, one can assume. Hmmm... interesting...

"The rest of my life" - it's just not a turn of phrase I've ever heard Sweetie express before. Sweetie is a very "live for the moment" kind of girl. You ask her if she's excited for a friend's upcoming birthday party and she barely remembers that it's even on the horizon. But once that party is here, boy, she lives it up and has a grand ol' time. She gets deeply involved in her imaginative play and upset when our plans have to take her away from it for awhile - not understanding that it won't be all that long before we're back and she can continue on as she wishes with her creative story building and playing. She's just a "now" kind of kid. And so for her to be pondering at all the concept of something being for the rest of her life - and not the best of things, either - well, I just take notice of that and wonder what's really going on in that head of hers.

You know, all this time over the last several months that we've taken her to the doctor, changed her diet, and had to have her X-rays and blood draws taken, we've always told her we have to do all this not fun stuff so that we can get some answers and help her feel better. To which she always has simply said, "I know." But, as I described in my last post, if we ever directly ask her at any given time how she is, how she's feeling, the answer is alway, always, "Great!" 

Funny - to me, anyway - that she has never denied feeling bad when we tell her we're looking to make her feel better. But then she never outright states that she's feeling anything but great. Weird. Another thing for me to wonder, what exactly is she thinking or feeling.

Like I said, though, Sweetie really is a "live for the moment" kid. A very go with the flow, no worries sort. (Ha! That strikes me as extremely funny right now when I sit back and remember just how rigidly stubborn and "follow-the-rules"-like she used to be as a toddler and Kindergartener.) She plays her games, creates her universes, and has a wonderful little care-free life. 

Maybe, now that she has the Lyme diagnosis, it's just that she's beginning to realize how little hiccups and issues can creep in to make her world that much less care-free. 

Knowing Sweetie, though, she'll (super) power through, pass the bad thoughts by, and keep on living her life just the way she's always wanted, and will - for the rest of her great life!