Tuesday, July 28, 2015

Tiny Cheerleader


It's official.  Lamp is a cheerleader.

But first, a story...

Last week we finally had a backyard campout that we've been promising the girls all summer.  The tent was set up, a fire was lit and they got to stay up way past their bedtimes. And then the cherry on top--the fireflies came out. I ran and got a jar for PSP and I to collect our fireflies in. When we finally had about 5 all together Lamp said, I want to catch some fireflies too! I want to catch some fireflies too! 

My mom heart gave a pause as I wasn't sure Lamp would be able to catch any fireflies. But of course I wasn't going to discourage her, so I got her down from the swing set and put her in her chair and away she went in search of her first victim(hehe). PSP and I went to the jar to release our glowing captors when suddenly I heard, "I CAUGHT ONE MOM!  I CAUGHT ONE!"

Sure enough, Lamp had a little firefly in her toes. I thought she squashed the poor guy to death, but when she opened her toes, he was just fine. Good job Lamp! I half laughed in genuine surprise. We put him in our newly empty jar. No sooner had we put him in than I heard again, "MOM I GOT ANOTHER ONE!"  This time, somehow between her arms she caught a little guy. When she opened her arms he stayed put and started crawling around her arm and I snapped this perfect little picture of the glowing bug against her skin.


Before 5 minutes was up she had caught 3 fireflies--2 in her toes, 1 between her arms.

The problem of being born with a typical body is that even after 5 years of a mothering a limb different daughter sometimes I still underestimate her physical abilities. But the benefit of Lamp being born Lamp is that she only sees possibilities and what she can do. It's like she was born with blinders on when it comes to limitations. She can honestly do almost everything other kids typically do. Sometimes this means doing things in her own special way--like when she jumps, she's not actually standing on her feet and jumping off the ground like other kids, but she's jumping in an authentic, Lampy way. And make no mistake to Lamp this is jumping. Other times there is no question of perspective as she's actually doing the the thing everyone else is doing limbs-be-damned! In this instance she's actually catching fireflies. Either way I want you to understand she is doing it--she is doing the things the rest of us are not sure she can do. That is the amazing way her mind works. And oh my gosh what if we could all do this--focus on our abilities first and be mostly blind to our deficits? What if we all took our God-given talents and abilities and did our best in our own unique way, without worrying what we look like or if someone else thinks we can do it, all the while smiling ear to ear because we know that we are doing our best and that is enough? We could move mountains.
*****

As Lamp has watched PSP go to dance, start violin lessons, go to day camp and so forth she has longed to have an activity all her own. And then cheerleading presented itself as a possibility. As a former (birkenstock wearing, hippy-ish) high school cheerleader myself--a paradox that has always felt strangely appropriate for me--cheerleading was not what I was planning on as Lamp's foray into extracurricular activities, but with the encouragement of her therapists and the cheer coaches themselves we decided to go for it. Lamp has been really, really excited.

Her father and I have been really, really nervous.

Again we're not nervous about her limitations or what she can or can't do. When it comes to Lamp our nervousness and fears almost always apply other people--will they accept her, will they be kind, will they teach their kids to be accepting and kind? As we walked into her first practice--a 2 hour long cheer camp for K-6--I could see and feel the eyes of a gym full of girls turning to watch Lamp in her power chair as she took her place in the front line. With their collective stares focused on my baby I could practically see thought bubbles above their heads with all sorts of questions and comments. I didn't have to imagine these comments with a few girls as they turned to each other to whisper, grabbing their arms above the elbow. Moments like these are the ones we special needs moms brace ourselves for. As I sat there I tried as hard as I could to absorb all that energy and attention being directed at her like a giant sponge and then filter it back out at Lamp as only positive energy giving her my biggest smiles of encouragement.

I knew if I could just get in front of all these kids, introduce Lamp and quickly run through an explanation, talk about her differences, let them ask a couple questions, that these looks and whispers would all disappear. (And in fact this is usually what we do with a new class and this is what we planned to do with her new cheer squad, just not this day.) In general this is what I wish I could do with the world.  Just walk a few paces ahead of Lamp, say a quick spiel, let people ask her questions and then everyone moves on.  But I can't. At least not like that.

A while ago I realized that if I'm constantly focused on the outside world, trying to reach everyone else before their stares, rude comments or mean behavior affect my girls it will be like trying to bail water out of a sinking boat without taking the time to actually put lifejackets on my kids. Because no matter how fast I scoop the water out, if they don't have lifejackets on they will drown. So I try to focus inward first--give my kids their lifejackets so to speak--and then focus my attention outward on the rising water.

So as Lamp sat with her power chair in the front row, following instructions, yelling out cheers I smiled and clapped and showed her an encouraging thumbs up each time she looked over at me. Next to that God-given inner voice that only sees possibility, her family's voice is the one that counts the most. This is one way I can giver her a life jacket. And while I can't stand in front of the world shouting out awareness as we go, this is exactly why I write this blog. This is how I spread awareness, this is how I hope to impact the world around Lamp for the better. This is how I bail out the water.

To be honest I don't think I'll ever settle into a super comfortable place with this cheerleading gig. Yes her squad and the parents will come to know and accept her, but each week as she cheers for a local pee-wee league football team we will be be playing a new team each time.  New kids, new parents and every time B, PSP and I will be there to help absorbs those inevitable stares and whispers and give it back to her in smiles and cheers of our own.

It helps to take a cue from Lamp and remember her confidence as we were driving to her first practice.

"Mom there might be some moves I won't be able to do that well..."
"Lamp, you just do them the best way you can."
"Yeah. I'll probably be able to do them all."
I smiled, "Yep, you probably will."

That's my little cheerleader...the bravest girl I know.


10 comments:

  1. What a touching and lovely post!

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  2. Miggy, you are the very best. ❤️❤️❤️

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  3. I love the life jacket/bailing water analogy. Thanks for another thoughtful and powerful post!

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  4. I always look forward to your posts about your girls and find them so genuine and thought provoking. They always help me in my adventures in parenting or just inspire me to do better and work harder at being a better person. I recently saw an article about a pvc pipe wheelchair for kids in the BYU Magazine and thought about you and how it might be an amazing resource for special needs parents. The plans for it are offered online for free which is incredible. It can be found at openwheelchair.org

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  5. Anonymous6:32 AM

    I really admire your perspective, Miggy. Not to mention your writing and how you so eloquently express yourself. I enjoy your optimism that isn't hitting-us-over-the-head-with-rose-colored-glasses. And Lamp, boy is that girl who I want to be when I grow up (okay, I'm 48). When I was young, I so badly wanted to be a cheerleader and while I have all four limbs, it was my mind that held me back. Any team is lucky to have Lamp cheering them on!

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  6. Anonymous9:44 AM

    Yeah Lamp, you both really amaze me!!!! marsha@tubbslanefarm.com

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  7. Anonymous10:59 AM

    This might just be the best post you have ever written and you have written lots of best posts. I love your thought process. My child (a former special needs spotlight) is also in a wheel chair and I also want to walk ahead of her to explain things but instead I walk with her. You are such an amazing person I just wish I could meet you in person. Christina Wooley Alicen Jane Wooley's momma

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  8. Anonymous9:57 AM

    At five Lamp has so much figured out about life. I hope I can be like her when I grow up.
    I think you're both throwing out the water and putting life jackets on your children effectively.

    Liseli

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