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I sit for a moment and scan the outdated magazines.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.

167430_4214246881057_1005604546_n

Ten minutes for me.

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

I was away for four days at a blogging conference in New York.

By the time it was over, I was ready to return home to my family.

But what I didn’t realize was how much I wasn’t ready to return to me.

What happens when you’ve had the oxygen mask on…and then you take it off?

I’m at The Oxygen Mask Project today writing about eggs, bacon, and trying to breathe freely.

Click HERE for “Home

So I am stepping WAY WAY WAY out of my comfort zone.

Next week, I’m heading to New York City for the annual BlogHer conference.

It’s a three day conference celebrating all things blogging.  I’m heading down a day early for the pre-conference HealthMinder day, which will have specific special needs panels.

If you don’t know me, you may not know why this is feeling so out of my league.  I’m the one much happier behind a computer screen than in a crowd.  At a party, I’m hanging by the food and drink table or leaning up against a wall in the corner.  I prefer to stay quiet, unnoticed.  I get anxious and nervous at Costco, so giant conferences make me edgy.

But I just had to go to this one.  And I have four reasons why.

Reason #1: In addition to writing here I’m also the managing editor at two other blogging sites.  For over a year now, I’ve been a part of the amazing team at the SPD Blogger Network, a group blog for parents of children with sensory processing disorder.  The site has a special place in my heart.  SPD was Howie’s first diagnosis.  Two years ago, when I started to write my own personal blog here, I connected with Hartley Steiner at her blog.  She encouraged my writing and put my blog on her site.  When she founded the SPDBN, she asked me to be there to help.  And there I’ve stayed.  We’ve created a loving, supportive and understanding community there on the blog site and on our Facebook page.  It’s the place I come to when I’m feeling particularly low or incredibly proud.  Every story is shared with honesty and love.  I understand my son better because of the incredible people who write for us every day.

The SPDBN relies on posts from parents.  Each day we post a new story.  I’m going to BlogHer to meet other parents who share a similar journey and I hope I can convince them to come write for us.

(side note: I’ll be the one with the cute Otto the Octopus.  See photo below.  Made especially for me to take to BlogHer by the incredibly talented SPDBN team Karla from The Itsy Bitsy Spider.  Find Otto, find me.)

She made those other cute guys for my boys. I may snag one of them to take with me as well…

The other site I help manage is The Oxygen Mask Project.  It was started with my friend Shannon as a way for us to reclaim ourselves, reminding us that we need to take care of ourselves if we’re going to take care of our kids.  It started small.  We started tweeting with the #yearoftheoxygenmask, sharing what we had done for ourselves that day.  For me, it was drinking my coffee when it was hot.  And showering.  While to many that sounds stupid, for me just doing that was a challenge.  I was so busy getting people out the door to school/therapy/baseball/piano/therapy that there was never anytime for me.  I hit bottom.  And now we have 880+ Facebook friends and 52 posts from writers from all over the world.  And every day we’re talking about how we’re important too.

There will be a special panel at HealthMinder day called Overcoming Burnout: Replenishing Your Reserves.  I’m going to BlogHer because this is exactly what we’ve been talking about for six months.

Reason #2: Two of my favorite people are being honored at the special Voice of the Year.  I can’t wait to hear my friend Varda as a reader for the “Heart” nominated posts.  I expect there to be very few dry eyes in the house.

And I’m so thrilled that my friend Stimey was nominated as a Voice of the Year for her incredible post Not Even Wrong.  This post changed my life.  That’s not hyperbole.  I read it at a time when we were having tremendous struggles with Howie and school.  Her post about her son Jack changed EVERYTHING about how I viewed Howie’s school life, and made me step back and look at how we needed to teach him.  Because my perspective changed, I was better able to communicate with his team at school and we all turned things around.  I am forever grateful to Stimey for what she wrote.  I’m going to BlogHer to tell her in person.  Again.

Reason #3 goes with Reason #2: I’m going to be with friends.  Including friends I’ve never met.

And, yes, I know that probably only makes sense to the blogging/social media world.

The best example of this is how I met my BlogHer roommate, Kristin.

Last summer, my kids’ school opening was delayed a week due to Hurricane Irene. I was completely stuck for ideas on how to entertain them when they were supposed to be in their classrooms.  I whined about this on my blog’s Facebook page, and this angel named Kristin asked if I wanted to join her and her boys at their swim club.  We had never met, but had a mutual Facebook friend and had become friends that way.  I sent her a message saying simply YES!  We chatted via email and text, and there we were at her swim club for the whole day.  Our boys played and swam – sometimes together, sometimes doing their own thing.  And because we were both autism moms…well the rest is history.

We’ve only seen each other once since that day at the pool.  But when I decided to go to BlogHer, I asked Kristin if she’d go too.  In addition to her amazing blog, she’s also written for the SPDBN and The Oxygen Mask Project.  So now we’re taking the bus together down to the big city, and I’m hoping she’ll help me get out of the corner.

But this is what blogging has done for me.  In addition to the incredible “in real life” friends I had, I’ve connected with a whole group of insanely smart, funny, snarky special needs parents who have taught me so much just through their words.  I’ve been lucky enough to meet some of them before and now count them as my closest friends.

I can’t wait to meet this friend, and this friend, and this friend, and this friend, and this friend.  I’ve been reading their work for so long and now I get to put a face with the words.

And I’m hoping a few other friends will come join me for a drink or two.  Or three..

I’m going to BlogHer to connect with the people who have taught me so much.

Reason #4: I need to get away.

I’m not going to lie.  This has been a long long summer.  I need a little break. In addition to the usual summer things, I’ve started a new project and it’s been a lot of work to get off the ground.  I’m stressed.  And I’m taking it out on the kids.

I need a break to sleep.  And shower.  And pee alone.

I have to get some time to regroup.  To feel better.  To breathe.  I’m going to BlogHer to find myself again.

I’m terrified of the three days away from my family.  I’ve never been gone this long.  But I know Tim and the boys will be fine.  We have an incredible support system around us here who will help if (when?) things get sticky.  I will have a social story ready for the boys so they are prepared too.

And when I come back I will be ready to take it all on again.

I’m stepping out of my comfort zone and going to BlogHer’12.  See you there.

Start spreading the news,
I’m leaving today.
I want to be a part of it –
New York, New York.” – New York, New York by Frank Sinatra

The internet has been abuzz with “The Mommy Wars” – the notion that mothers are in competition with each other over who has the “better” way of parenting.

But I’m involved in a different kind of “Mommy War”.  It’s not about me comparing myself to the mom down the street or across the country.

I’m at The Oxygen Mask Project today, talking about a war that rages inside my own head.

Not the battle of Am I Mom Enough.

But the battle of Am I A Good Enough Mother?

And I have some special friends to thank over there too.

Click HERE for “What Makes You Beautiful”

And if you haven’t yet, read some of the amazing posts over there.  Truly incredible moms and dads sharing what makes them stronger today.  Next post could be from you.

I had a long week.

But I had my first real shower in 5 days today.  And because all my good ideas come to me in the shower, I came up with The Mary Poppins Game.

I wrote it over at The Oxygen Mask Project blog.

What would you do with 24 hours just for you?

I shared what I would do.  And it was definitely not kite-flying.

Come read the post and leave your answer in the comments for everyone to read.

It was an Oxygen Mask trip of a different kind.

My brother and sister-in-law had a brand new baby. They live in Arizona. I wanted to – NEEDED to – visit them.

A much needed getaway for me.

And I took Gerry. A much needed getaway for him too.

Just the two of us.

Pushing aside my maternal guilt and anxiety of leaving the other two with Tim, Gerry and I hopped on a plane last Friday and spent the weekend together.

Just us.

We ate what we wanted.  We watched The Muppet Movie.  We drank too much Sprite and overdosed on Twizzlers.

We talked.

My brother took him to hit golf balls and they played catch.  And they talked.

He smiled more than I have ever seen him smile.

It’s not the answer to everything.  But for one weekend, it was just about us.

Some breathing room for us both.

“I’d fly above the trees
Over the seas in all degrees
To anywhere I please

Oh I want to get away
I want to fly away
Yeah yeah yeah” – Fly Away by Lenny Kravitz

(part two in the Year of the Oxygen Mask series.  I think there may be more coming)

I was sitting in a small restaurant, having lunch with a friend, when everything changed.

It was a rare treat.  A kid free lunch.  My friend lives two hours away and we met in the middle.

She’s an autism mama.  Just like me.

So of course, we talked about our kids.  And how the autism diagnosis has changed our lives.

The things we do now that we never thought we’d do.  And the things we don’t do that we always thought we would.

The big pile of resentment that grows with each year, and the need to just let some things go.

My friend is a tireless advocate for families like mine, and she had recently run for elected office.  I watched her campaign from the sidelines and became emotionally invested in her run, even though I couldn’t actually vote for her.

“I think the reason many of us got so caught up in your campaign was because you were doing something bigger…something more than just about autism.”  The words sounded weird as they came out of my mouth.  Offensive, even.

I tried to clarify.  “I mean, you were talking about the economy, and schools, and taxes and…regular stuff like that.  It was like you had a life outside of all this.”

Those words sounded even harsher.

My friend, being the incredible person that she is, saw through my fumbling words and understood my intent.  She agreed that it was empowering to feel like there was more to her than being her son’s mom.

And then I said it.

“We spend so much time helping the world see past our kids ‘label’.  We want people to see them for who they are and not get stuck on the diagnosis. Right?”

Right.

“Why, then, are we so connected to the label of ‘autism mom’?  If we don’t want our kids to be defined by the label, then why are we so defined by it?”

Silence.  We both just sat there and let those words hang.  And simultaneously, we slumped back in our chairs.

“You’re right,” she said.  “The autism diagnosis has taken over my life completely.  There has to be more than that.”

Our kids need to see us as more than that.

**********

It’s a conversation that I’m still playing back in my head.  I’m a different person since my kids’ spectrum diagnoses.  I had to change.  I had to become a stronger person and better advocate for my kids to get the services they need.  I had to read things I never thought I’d read.  I had to know words that I never knew existed.

My kids needed the autism label to get them the help they needed in school and at home.  It helps describe why they behave the way that they do.  It helps others understand why my boys see the world differently and interact with others in a different way.

The “autism mama” label has introduced me to the most incredible people in the world – people I consider my best friends now.  We share a common bond and life experience.  They understand why I laugh and why I cry.  They are the people I want to be around because they get me.

But there is more to us all.

When Howie is older, I want him to be able to say “Yes, I have autism.  And I’m also a husband, father and I love to fix cars.”

My sons have autism.  It makes them who they are.   It explains them, but doesn’t have to define them.

I am an autism mama.  It explains me.

But it doesn’t have to define me.  I want to say “Yes, my kids have autism.  And I’m also…”

The next step in The Year of the Oxygen Mask is figuring out what that “also” is.

I’m not letting go of the autism mama piece. That’s the most important part of me right now, and probably forever.

But I feel like I’m missing some other parts of my full identity.

Scars are souvenirs you’ll never lose
The past is never far
Did you lose yourself somewhere out there?
Did you get to be a star?
Don’t it make you sad to know that life
Is more than who we are?” – Name by The Goo Goo Dolls

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