Bubble wrap,Wheelchairs and Twinkies

Not all babies are cute. Let me just get that one off my chest. OY!

I have personally seen my share of ugly newborns, though I’ve never said as much. I just smile and lie comment about their cute fingers or how incredibly full their hair seems.

But whether they’re pudgy or boney, they are all swaddled and protected against those who may harbor germs or other infectious malice. Shielded by mothers who do believe they are beautiful and will single-handedly save the world. Mothers who protect, love and protect some more.

The tricky part of motherhood, I’ve learned is balancing the amount, frequency and thickness of the protective mental, physical and spiritual bubble wrap that your child is layered in.

“When is it ok to let them watch a PG movie? Are sleepovers safe anymore? Can they really crawl down the stairs on their own? Will she choke on a grape or will I be peeling and quartering till he’s 15? Can I trust her to ride her bike alone without getting kidnapped and held hostage in a backyard shed for 18 years?”

I’ve also gathered in my 9 1/2 years as a parent, that my particular brand of bubble wrap is ever in flux. I can never be prepared for all the cliff-hanger moments as a mother, but I can be ready for how I handle them.

With help.

A double serving please.

With a cherry on top.

A few months ago, I spoke with our amazing principal of the possibility of Katie trying out for the Missoula Children’s Theater production coming to our school. I wanted to make sure it was kosher to encourage her to try out since she’d expressed interest. I made it clear I didn’t want her cast because of her disability, I just never want to be in the position of telling her ,”No. You cannot do that because you have Cerebral Palsy.”

He, being the amazing human being he is, was totally on board and was excited for the possibility of her being in the show.

The morning of try-outs, I made I big hoo-ha to Mary and Katie about behaving like a good sport should one or none of them be cast in the play. I informed them they were welcome to pout and throw a fit in the car but absolutely no theatrics in front of the other sister.

If they did, I would ban them from trying out the next year. Because I’m weird and controlling that way. And I like to flex my mommy muscles every once in a while.

Gratefully, they both made the cut and I had the distinct privilege of being Katie’s handler. Her shadow. Her muse.

And over-all-hover-mother.

You know I despise those types.

And yet, somehow I regress periodically, second-guessing my children and their capability to forge their own path and crack their own noggin. And I want to swaddle them, protect them, and wrap layer upon layer of circular air-cushioned goodness.

Day one of practice arrives and I decided that the threat of Katie falling and getting hurt on stage is too great and she will just use her wheelchair. The directors are more flexible than a 5-year-old’s tooth dangling by a wee thread and are open to whatever. I think if I suggested she needed a pogo stick, they would have smiled and been fine with it.

The following day, I was chatting with Katie’s teacher and she wondered why we were using the wheelchair since they only use it at school for longer distances. Mrs. F. is an AMAZING teacher and I am grateful for being Katie’s greatest advocate by treating her like any other kid. I love her.

And now I love her even more.

I explained why I didn’t feel comfortable having her walk around in case she got fatigued, blah, blah, blah.

She queried if I had asked Katie what she wanted.

Wha? Ask HER? What she wanted to do with her own body?

What a novel idea.

But she got my non-bubble-wrap side thinking that maybe, just possibly I might, possibly, maybe, in a sort of smallish way…be…a teensy bit wrong.

Maybe.

The second day of practice, Mrs. F.  stood by as I apologized to Katie and gave her the option of walking which she grabbed like ice cream on a summer’s day. Her angel teacher even figuratively held my hand as we explained it to the directors who I’m sure were thinking “I bet this poor kid eats Twinkies every night for dinner while watching rated R movies. What a crazy Mom!”.

All along, Mrs. F kept assuring me, “She’ll be fine! She can do it.”

I tried to smile back convincingly, but inside I was terrified.

Terrified she wouldn’t know where to go or what to do and get bumped by the masses of children. Terrified she’d fall and get a concussion (again) or bleed all over the stage and then I’d be paying therapy bills for hundreds of children. Terrified she’d be embarrassed. Terrified she’d ruin the play for everyone else.

Or worse everyone would turn to me and say, “Why did you let her do this? Why is this poor child who struggles to speak and walk in a straight line here? On a stage of all places? Why would you allow her to fall? Where were you? This is YOUR fault you Twinkie-serving-implicit-TV-show-offering mother! You fail! Couldn’t you have made a normal kid? One that wouldn’t have ruined it for everyone else tonight? Huh?”

And that’s when I realized it wasn’t Katie I was worried about being embarrassed. It was me.

Me.

I wasn’t worried about a gym full of people staring at her. I was concerned (as always) about them staring and judging me.

As the week wore on, I was right there with her. Cueing her, walking her to the wings of the stage for every entrance and helping her back to her seat for after every exit.

I saw her confidence growing each practice and by the last day during the performance for the school, she began to push me away wanting to be just like everyone else. And that’s when I slowly began to realize I wasn’t giving her enough credit for being an amazing kid who is handling her disability with grace and joy.

I needed to back off.

Again, her angel-teacher reassured me that she’d be fine if I wasn’t backstage with her for the last performance that night. Mary wasn’t really happy about it and tried to convince me to stay with Katie. She was quite worried she would be in charge of her.

So, I asked Mary, “Who’s in charge of Katie?”

“You are.”

“Nope. Who’s in charge of Katie?”

“The directors.”

“Nope. (And this is when Katie begins to smile) Who?”

Mary shrugs as Katie’s arm begins to raise up—a little excited, empowered hand shouting “I got this! I’m in charge of me!”

I was so proud of her and at the same time trying to tame the freak in my head demanding, “You can’t! You need me! You might fall without me!”

Thankfully, my inner-freak was wrong.

She did beautifully. She glowed and grinned, beamed and bloomed under the stage lights. There were no concussions, blood or threats of therapy bills, in fact, she was endeared by the audience.

I realized then that the school and community really love her. During the school performance, I heard that every time she came on stage the kids whispered, “There’s Katie!”

They don’t think she’s a weird kid with a wheelchair. They know she’s a sweet girl who makes people feel happy and loved. That she has a goofy sense of humor and is really smart. Sure, she’s messy when she eats, but I didn’t give them enough credit to look beyond the braces, the drool, and the struggle to speak.

They love her because she is shining soul. And that’s what we all saw on stage—her awesome, contagious, beautiful smile that was so grateful just to be like every other kid. For just one night.

A few notes for a  few people:

If you know me in real life and are a friend on Facebook, you can see photos of the show.

Again, thank you Mrs. F. for being a true, honest friend and prying my terrified knuckles from Katie’s wheelchair. I needed you to talk me off the ledge and I will always be grateful to you for teaching me a valuable lesson. We are so blessed to have you in Katie’s life!

I just want to say, in case Mary ever reads this when she is older, that she did a marvelous job as a Pleasure Isle Kid. I took just as much please seeing you shine as I did Katie. Her struggles don’t make your successes any less. I love you and if you were the only kid in the show or if you were in the back row and I only saw the top of your head for a split second, I would have gladly watched all night just to see that part. I am so proud of who you are and I hope you know that. I love you!