Girl On Fire

by Alysia, Try Defying Gravity

I pull into the space in the parking lot and sit for a moment.

It’s snowing lightly. I start to curse the weather for a moment (not MORE SNOW!) but the flakes look so pretty as they land on the windshield.  It is February in New England after all.

“Girl On Fire” by Alicia Keys stops abruptly as I turn the car off.

I quickly walk through the snowy hospital parking lot, shielding my face from the brusk wind.  A few people walk by but we don’t make eye contact.  Everyone is there for a reason – good and bad – but it’s none of my business or theirs what that reason is.

The automatic doors slide open and I push the number 4 on the elevator.

Woman’s Pavilion.

I called to make the mammogram appointment last week, expecting to wait a while before they had an opening.  There was a cancellation for today at 12:30 so I jumped at it.  During pre-registration, the nurse tells me that it has been three years since my last mammogram.

Well, you know how it goes.  Life gets in the way.

My family history reminds me that this is two years too long.

The elevator doors open and I walk in alone.

I take a deep breath.  I think of the incredible women in my life who have made this same elevator trip for the same test and got the scary news.  I think about my genes and about the statistics.  I think of my dad and the pancreatic cancer that took him and how I wished there was such a test for that.

The doors open and I walk into the imaging center at the Woman’s Pavilion.

The technician takes my insurance card and my license.  She notes that my license has expired back in January on my birthday. You know how it goes.  Life gets in the way.

I start to tell her how many times I picked up the phone to cancel this appointment but think better of it.

I sit for a moment and scan the outdated magazines.  I wonder how many other woman have sat in this very seat waiting for their turn.  Hundreds?  Thousands?  What were their stories?  Their fates?

She calls me back to change into a robe from the waist up.  “Tie it in the back,” she reminds me.

I change out of my top and bra and struggle with the motor skills needed to tie the strings behind me.

I think of my family and dear friends who have been right here in this exact spot.  The women I love who got the cancer diagnosis.

The women I love who made some incredibly hard decisions.

The women who came out alive on the other side.

I get the robe tied and enter the imaging room.

“It’s a new machine,” she says to me.  “People say it doesn’t hurt as much and it’s much quicker.”

We make the usual small talk as she maneuvers me into the machine.

“Hold on here.  Relax your shoulders.  How old are your boys? Wow, you have your hands full.  Now hold your breath.”

I stop breathing for a moment as 30 pounds of pressure collapse down on my chest.

The truth is it isn’t life getting in the way.

It’s the fear that something is wrong.  The fear that I won’t be around to see my children grow up. Realities that I don’t want to face.

Ten minutes later, I was done.

She tells me my pictures looked perfect but I would hear by Tuesday if there was anything they needed to tell me.  If I didn’t get a call, I would get a letter in 7-10 days.

She makes me my next appointment.  February 23, 2014 at 10:30.

“So you don’t forget this time.”

I leave the office and head back down alone in the elevator.  I start to shake.

Only ten minutes.

Ten minutes for peace of mind.

Ten minutes for these guys.

Ten minutes for me.

Because in order for life to keep getting in the way, I need to be around for that to happen.

This mammogram appointment is dedicated to the women I love who through their strength and grace have taught me that life is too precious to put off a test like this.

I want them to know that I am grateful for the push to make the call.

“She’s just a girl and she’s on fire
Hotter than a fantasy, lonely like a highway
She’s living in a world and it’s on fire
Filled with catastrophe, but she knows she can fly away

Ohhhh oh oh oh oh
She got both feet on the ground
And she’s burning it down
Ohhhh oh oh oh oh
She got her head in the clouds
And she’s not backing down

This girl is on fire…
This girl is on fire…
She’s walking on fire…
This girl is on fire…” – Girl On Fire by Alicia Keys

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Alysia is a stay-at-home mom living in Massachusetts with her husband and three boys, ages ten, six and four. Her middle son has sensory processing disorder and was diagnosed with autism spectrum disorder in December 2009 at age 3 ½. She currently writes at Try Defying Gravity, her personal blog recounting the joys and challenges of raising three boys. She is also the managing editor at the SPD Blogger Network and the co-founder of this blog, The Oxygen Mask Project.

This post was originally published HERE and used with permission.

Air, Autism and Advocacy

by Shannon, Well Served Tennis Academy

Today someone said to me, “You should take a break from all of your advocacy work. You’re doing too much.”

But I can’t. This is the air that I breathe.

I’ve got a lot going on.  Most of it is self imposed.  I’m an intuitive person and when my son was diagnosed with autism ten years ago, one of my first realizations was that very few people who could help him get services, an appropriate education and medical care actually KNEW what autism was beyond just the word.  I’m talking politicians and policy makers.  The people who could shape the laws that govern my son’s ability to access ALL the wonderful things this country has to offer, knew…almost…nothing.

So with a healthy dose of terror (which incidentally never goes away) and having the faintest of clues as to how to begin, I began. And one step led to another and before I knew it, I was speaking to state representatives and state senators, Congressmen and Senators, advisors and policy makers.  Before I knew it, I was working with other parents to CHANGE the lives of our children.

And I gulped in the air. Again and again.

It is the air that allows me to be an integral part of the solution. It is the air that allows me to be part of making the world my children live in, the best world it can be for them.  It is the air that I need to help policy makers remember that there are REAL people behind the word autism or autistic. It is the air behind the voice I use to speak for my children. It is my oxygen mask. It is not everyone’s, but it is mine.

Think you can’t do this?  You can.

I am a life long tennis player and the great Arthur Ashe is among my favorite tennis champions.  He said this,”Start where you are. Use what you have. Do what you can.”  Start with a call to your legislator. Ask him or her to meet you for coffee. Then breathe.

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Shannon Knall is a founding member of the Hartford, Connecticut chapter of Autism Speaks and the Inaugural Walk Chair.  As a volunteer, she is the State Policy Chair for Autism Speaks in Connecticut.  Shannon is also the Executive Director and Founder of Well Served Tennis Academy, a summer camp that provides children with autism in grades 4-8 an opportunity to learn tennis in a social environment