Embracing badassedness

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For Candice

I have, in my life, been privileged to have met and befriended some pretty amazing and bad ass women.  From writers to ambassadors to grocery store cashiers – these women inspire me to step up – to be more.

…to remember that I have been and can again be a bad ass myself.

I got my first tattoo when I was 25 while living in Mauritius.  I went with my friend Shirley, a bad ass woman who taught me to embrace the beauty of…well…embracing my beauty.

“Eat, Debby,” she said.

And I did as she said.  Because she’s a bad ass.

Through the years I’ve eaten and I’ve not eaten.  Anorexia is a conniving bitch.

I got my second tattoo in early April of this year.

I have new friends now.  Many of whom are bad ass Autism moms.

And believe me, you don’t get much more bad ass than an Autism mom.

Candice is a mom of four.  She has battled breast cancer and, as you would expect, she kicked its ass.  Her youngest child has Autism.  He and EB are in the same class at school.  I knew her before that though, because us Autism moms, we are a small bad-assed army.

She had talked about getting another tattoo for a while.  She asked me to go with her – and I was honored.  It’s a big event, a bonding event, getting a tattoo.

We finally got our bad ass selves on the calendar for an appointment and I was so excited to be with my friend, to be part of this experience.  She had designed a tattoo, a puzzle piece with her and her children’s favorite colors, to commemorate the impact that Autism has had on their lives.

Autism seems such a small thing to focus on, what with all my beloved friend has encountered in her short life.  Sometimes I sit here and think just Autism would be enough – it would be more than enough of a challenge – if that were all we faced.

It’s never just Autism though.  Never.  Four years ago Candice beat breast cancer. She wears a streak of pink in her hair to remember, or perhaps to remind the world, that you can and will be a bad ass.

She fought cancer and Autism at the same time.

And then this January she became a single mom.

Because Autism isn’t enough.

But she found a way to smile, even if she forced it sometimes, and as things crumbled around her she still took the time to check up on me.

“Eat, Debby,” she said.

And I tried.  I really tried.

So in April, we finally got around to getting to the tattoo shop.

A few days before the appointment I thought to myself, it’s time for another tattoo.

But of what?

“Eat, Debby.”  I heard.  The voice growing louder and louder and more and more persistent.

Eating disorders are seldom about weight.  They are about power, control, and a deficit of self-love.

I took an appointment just after Candice.  She got her tattoo on the inside of her wrist.  I hurt for her.  But she’s a bad ass, so she barely winced.

Then I got mine.  It says “Eat, Debby”.  Except it doesn’t, ’cause that would be awkward to explain.  It’s the National Eating Disorder Association symbol.  It’s widely used to represent recovery – or in my case, the life long journey towards it.

I got it on my foot so that it was discreet, but so it was never so far away that I couldn’t find it.

529619_590269134319194_2107253482_nAnd then we went to eat.

Neither one of us had any idea that just over a month later Candice would be admitted to the hospital, her pericardium full of fluid, a large cancerous tumor pushing on her heart, and several other smaller tumors detected as well.

“Don’t be mad.  The cancer is back.” She said to me through Facebook.

But I was mad.  I was so incredibly mad that I cursed Cancer and Autism and being a single parent to four school-aged children.  I cursed everything that made Candice have to be the bad ass that she so amazingly is.

And I cursed the god that I am fairly certain must not exist, for letting this happen, for not taking care of his child.

A friend and I went to see her in the hospital.  I shook as I walked towards the Cardiac Intensive Care Unit.  I didn’t want to be there.  I’d thought of 100 excuses why I shouldn’t be there.  But I knew that Candice didn’t want to be there more than me – so I channeled her amazing strength and I walked in.

And she smiled.

And I thought, how can she smile?

Where does this grace come from?

Maybe from the god I don’t believe in?  Maybe from within?

Maybe from years of kicking ass.  Yes, I do believe it’s mostly that last one.

She’s home now.  Doing outpatient radiation.  What the future holds we don’t know. All of that future stuff is moot right now, because right now all she can focus on is kicking Cancer’s ass – again.

In a moment of lapsed lucidity I signed up to bring dinner for Candice and her family.  Anorexics aren’t big cooks you can imagine.  And while I know how to, I rarely have the ingredients or time or want.

I made spaghetti.  Okay, actually EB’s therapist Cassandra mostly made the spaghetti for me while I had a plan meeting.

I had signed up to bring spaghetti, a salad and garlic bread.  But since it’s never just Autism I only had the spaghetti and my car battery died every few times I stopped the car so I couldn’t get to the grocery store.

I loaded up the spaghetti, held my breath while the car started, and I drove to Hardee’s.

“Um hi, twelve plain biscuits please.” I spoke into the speaker.

“Twelve what?” the voice replied?

“Um…do you sell biscuits?  I need twelve of them.  Like a dozen?  That’s a dozen right?”  My experience with Hardee’s is limited to the knowledge that they have Coke Zero and my cousin worked there after high school.

“Yes we have biscuits.  Pull forward please.”

You wouldn’t believe how long I sat, not turning off my car, waiting for those biscuits.  When they brought them to me in the “park and wait for your convoluted order spot” the employee told me they’d never had anyone ask for twelve biscuits before.

And I thought…of course you haven’t, cause I’m a bad ass Autism Mommy.

I brought the food to my beautiful bad ass friend.  She was smiling.  We sat and talked and her dad rigged my battery with an old beer can he’d found.  We just hung out like old times. Cause cancer can’t change that.

We talked about our next tattoos, our kids, and how we both wish we had time for some wine.

And when I left I apologized for the Hardee’s/spaghetti/saladless meal and Candice said that it looked great.

And I hugged her and I said…

“Go eat, Candice.”

The gift of love

He is seven.

Everybody’s boy is seven today.

Yesterday afternoon was hard.  He was very agitated and impulsive.  Something was wrong and I knew what it was.  I wasn’t sure he could place his finger on it though.

“Peter, is today a tricky day?”

“I am scared to be seven. I do not want to be old.”

Just what I thought it was.

So we talked.  We talked about how it’s my birthday too and that I’m 35 and that thirty-five is 7 times five.  That I am FIVE times older than him.

After that he was not scared anymore.  Of course the conversation sent me spiraling into my own mini mid-life crisis, but I was due for one of those anyway. It had been almost 10 days since the last one.

On Wednesday evening I read a piece as part of the cast of Listen to Your Mother Raleigh-Durham.  It was entitled “Almost Six, and it was a timely reminder of how fast life moves, how precious and universal the loss we mothers feel as our children grow bigger and bigger, more and more independent.

At almost seven, I saw so many times pure empathy and love from my child.

A few weeks ago we went to a local “fun-place”,  The kind where you spend $130 in less than two hours and walk out with another stuffed animal, but notably the most expensive stuffed animal ever.

I’m going to cut that thing open and get the diamonds that must be hiding inside of it out next time he puts it down.

But it was fun.  So fun.  Such a great Mommy and Son day.

When “shopping” with his tickets at the counter he poured over his options for probably twenty minutes.  I cannot mind this trait as I am the most indecisive and -second-guessing shopper ever,  He eventually chose the diamond-packed dinosaur.  You can keep your tickets on account which is what he usually does so I reminded him that we could save up for the iPad he wants, not at all ready to explain that at $130 per visit and an average of 900 tickets won each time.  That iPad would cost over $34,000.

Plus he totally already has an iPad.

Instead of saving for the diamond-encrusted iPad.  He decided to look some more.  Then he asked me what I liked.

“Me?  I don’t know.  I like that Hello Kitty keyboard. But that’s why I am not choosing YOUR prize.”

He chose the Hello Kitty keyboard.

Okay, I thought.  It was a steal at only 900 tickets/$130.

In the car as we headed towards home he asked me who we knew that liked Hello Kitty.

“Hmm…well my friend Emily likes Hello Kitty and I think maybe your friend Morgan does too.  Why?”

“I am just thinking about this Hello Kitty keyboard, Mommy.  Okay?  I am thinking.”

Buyers remorse?

We stopped by grandma and grandpas house.  He ran in the house and whispered – not at all secretively – that he got Mommy’s birthday present and it was a Hello Kitty keyboard.

Here is the part where I tell you that from the moment he “bought” it, I knew.  But it didn’t make it any less special when he rushed home and asked me for wrapping paper and a GREEN bow and then hid away in his room while he conducted his covert operation.

Or when he hid it in his toy box and told me that there was a present there for someone but I could not know because it was a secret.  Or when he told everyone that came into our home over the past two weeks and showed them proudly.

Or when he brought it out and proudly showed his friends, and one of them said when he went back inside to replace it in the toy box.  ”Peter’s Mom, don’t you know that present is for you?  You are sitting right here, you heard him right?”

I grinned at her and said,  ”Oh yes, I do know.  But he doesn’t know that I know so don’t tell him okay?  He wants to surprise me.”

A few days later we were driving again and he said “What are you getting me for my birthday?”

“Dude, I gave you life.”, I joked.

“Life, life, life – every year it’s life.  I want something else this year. I want the gift of love.”

God he’s adorable.

So I got a box.  I put the Mega Man stuffed toy I had purchased for him on Amazon in it…and last night I cut out probably 100 red construction paper hearts.

And I wrote on them, Mommy loves Peter.

This morning Daddy and I woke him up by singing Happy Birthday.

He jumped out of bed.  ”It’s our birthday, Mommy!”

He ran to the toy box.  And presented me with this.

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“The green bow is because green is your favorite color.  Open it, Mommy.  It’s your birthday.”

I was actually surprised at how surprised I was.  I gushed and cried and told him how sneaky he was and how sweet it was of him to think of the perfect gift for me.

I am using it right now; as you would expect.

Then I gave him his gift.

“It’s a Mega Man plush!  Oh I love it, Mommy!  Oh and look at all these hearts!  Mommy, you made these for me?  You gave me the gift of love!  Thank you, Mommy.”

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Actually, my darling son, you gave me the gift of love.

Happy 7th Birthday, Everybody’s Boy.

Cinco de Mayo: Diagnosis Day

2010_01_25_five_candles_5x7A lot can happen in five years.

I can gain and lose the same 50 pounds twice.

I can write 209 blog posts.

A child with no words can become the child talking graphic design with the adults working at the local comic book store.

416 private Occupational Therapy sessions.

454 private Speech Therapy sessions.

3,600 Special Education school hours.
- 160 in-school Speech Therapy sessions
- 180 in-school Occupational Therapy sessions

104 private Behavioral Therapy sessions.

54 weeks of TEACCH, structured teaching.

Specialized gymnastics, social groups, summer camp, music therapy, adaptive swimming, baseball, soccer and basketball.

In case you are wondering, it’s diagnosis day here.  Five years ago today a psychologist told our family that we had a beautiful son who also had Autism.

So we got to work.  Grandma, Grandpa, Mommy, Daddy – but most importantly Peter.

I remember pining for the day I’d hear the word Mommy.

I still have to stop myself from signing “all done” or “thank you” on the odd occasion I have to prompt for those things.

A friend of mine who has an adult son with Autism told me once that it doesn’t get easier, it gets different.

Lots of professionals have told us that our child is profoundly affected  by Autism, despite the fact that he is extremely “high functioning“.

And as much as I didn’t want to believe them, as much as my analytical mind struggled to reconcile the concept, they are right.

He struggles.

We struggle.

But he works hard.  He works harder to quiet his mind and focus on a task for five minutes than most of us do in a whole day.

And he works hard because he wants to.

He wants to learn.  He wants to calm himself.  He wants to be a friend.

If I could change things, make his life easier, I would take his pain in a second.  But I also cannot imagine a world without this Peter.  This eccentric and eager child endears himself to the world effortlessly.  This child will succeed where I have failed.  This child will change the world in ways unimaginable.  This child has fight and spirit and Autism is not his handicap.

Five years ago I sat in this very room at my computer and sobbed because I did not know what the future held for my son.

Today I sit at the computer, still not knowing what the future holds for my son, but with a quiet heart.  Because I know that whatever it is – it will be okay.  Because I know that he won’t stop working and neither will we.

Because I celebrate his uniqueness.  Because he is my super-hero.

Because if he can do this in five years, the next 15 are going to blow you away.

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Looks like we’ve made it…

cheersAutism Awareness month has come to an end and I cannot be happier.  I just wasn’t up to it this year.  I was busy being aware of my own child’s needs.

Sometimes you just can’t champion everything, you know?

Sometimes you just have to step back and say “maybe next time”.

We’re on to May.  My favorite month.  Our shared birthday is in May.  My mom is visiting.  I’m going to be in Listen to Your Mother.

I like May. It makes me smile.

Something else that makes me smile?  Welcoming my second blog.  www.debbytorres.com

Everybody’s Boy is not going anywhere.  I just thought that there were certain posts that needed their own home.  Posts not specific to parenting or Autism, mostly.  So going forward those posts will live at the new blog.  You can follow that blog on Facebook as well.  The Facebook Page is also where I’ll share updates on publications, speaking engagements, press stuff.  So if you want to keep up with my work go here and click “like” (I’ll wait).

Oh hi, you’re back.  Now, I hope you’ll take the time to read today’s post.  It’s one I hold dear to my heart.

I posted tonight about my upcoming birthday.  The big 3-5.  I hope you’ll check out the new place (still needs some touch up paint and a few pictures on the walls but we’ll get there).  Have a seat on the folding chairs in the dining room and grab a slice of cold pizza from on top of the pile of boxes. I’m still unpacking. But it already feels like my second home.