doing – at the oxygen mask project

-

I”m at The Oxygen Mask Project today.

Join me, won’t you?

Don’t do it for me.

Do it for YOU.

–> CLICK HERE <–

daybreak

-

In the car last night, I said, “You know what, guys? I think my favorite part of this whole day was when we were dancing in the parking lot on the way into Toys ‘R Us.”

Katie said, “Oh, that was awesome, Mama. I forgot about that. I think that was my favorite part too.”

She was quiet for a moment, then added, “That would make a great post, Mama. I think you should write about that.”

She looked at her sister, “Hey, Brooke, let’s tell Mama that it’s OK if she writes about that, OK?”

Brooke must have nodded her assent because Katie followed up with, “Mama, we both think you should make a post about it.”

As we parked the car moments later and stepped out into the cold evening air, I suggested a replay. And once again – for the second time in one day – we beat-boxed, strutted and danced our way down the street, head-back laughing and reveling in the freedom of being exactly who we are.

And I was overcome with joy.

And hope.

-

Diary’s FaceBook status, yesterday afternoon ~

I threw caution to the wind this morning and took the girls out for a girls-only day. As Katie beat-boxed on the way into Toys ‘R’ Us and Brooke and I skipped/danced/marched along to her beat, I had this thought. ‘Wait,’ I thought, ‘I recognize this woman. The one laughing and dancing her way through a parking lot. The one steeped in the joy of a random moment with her children.’ And I realized how long it had been since I’d seen her. And how good it was to have her back.

 

right on time – from hopeful parents

-

Way back in November (is it just me or does November feel like a lifetime ago, seriously?) I wrote the following:

As some of you may remember, I used to write once a month for a site called Hopeful Parents. I loved my time there.  I adore the site and everything that it stands for. The name says it all, really – a community of (special needs) parents who choose to view the world through a lens of hope.

I stopped writing for them a few months back when I realized that I was desperately overcommitted and really (OK, really, really) needed to pull in the reins where I could.

Over time, I plan to repatriate the posts that I wrote there – to bring them home to Diary so that they will be a part of the collection of stories here. My greatest hope is that someday Katie and Brooke and I can look at all of this together. That we can talk about these moments in time and that they can tell me what they were experiencing through each of them. That they can tell me where I got it right and where – inevitably – I got it disastrously wrong. I hope that they will see that even when it all went awry, I loved them more than anything.

And so today begins the process of bringing some of the twenty-seven posts that I wrote on Hopeful Parents back home. I hope you will indulge me on this walk down memory lane. I don’t plan to publish them in any particular order. I will just put them up here and there as they resonate.

I went on to publish a single post that same day and then forget all about it.

Until this morning.

When I remembered one that, to put it mildly, resonated today.

So here it is. Right on time.

Right on Time

Originally posted on Hopeful Parents in May of 2010

-

When I was thirteen, I broke my leg while doing gymnastics. My mom had brought me to practice that night, just as she always did, and my dad was due to come three hours later for pick-up time, just as he always was. I broke my leg right in the middle of practice.

As soon as I felt the flat of my shin crack against the balance beam, I knew. This wasn’t a run-of-the-mill, put some ice on it and quit your belly achin’ injury. Something was really wrong.

As my coach lifted my head, our team trainer created a foam splint and rigged up some support under my leg. As the trainer tried to calm me down, I yelled to the nearest gymnast.

“Darci, go get my dad!’ Everyone looked at me sympathetically. They assumed I was in shock as I obviously wasn’t making sense. It was my coach who spoke.

“Honey, your dad’s not here. He won’t be for a couple of hours. We’re going to try your house and see if we can reach him.”

I understood why they thought I was losing it, but I simply knew I was right.

“Darci, please just go out into the waiting area and get my dad, OK?”

“Just go,” I added emphatically, “He’ll be there.”

Moments later, much to the surprise of everyone but the girl with the broken leg, Darci walked back across the floor with my dad.

He never could explain why he was there. He just was. Love – particularly the love of a parent for a child who is hurting – sometimes defies all reason.

Sometimes, it just shows up when you need it.

***

Last night, we went out to dinner as a family. Or at least we tried. Halfway through our meal, Brooke and I pulled the ripcord. Despite the familiarity of our favorite (and only) haunt, despite the usually soothing music coming through her headphones, despite the presence of our favorite waitress, despite the crayons and a favorite meal, she simply couldn’t handle it.

The restaurant was busier than usual and much to our dismay, was filled with young children. One little boy within spitting distance of our table had a cough. Fight it as she might, Brooke finally couldn’t handle it anymore. I watched her little body tense. I watched her face contort into a pained cry. I watched helplessly as she screamed a blood-curdling shriek. I brought her onto my lap and tried to soothe her. I gave her the long, slow squeezes that sometimes help. I rubbed her back. I stage-whispered in her ear, just loudly enough to be heard through her headphones.

She shrieked again and looked to me for help. “I WANT TO GO WALK!” she yelled loudly enough to be heard three states to the south. And so we walked.

Luau and Katie stayed behind to finish their dinners. Winnie packed up my meal along with Brooke’s and gave them to Luau on their way out. I came home and wrote the following in my Facebook status:

Just as over time the ocean’s waves insidiously claim its shore, so it is that watching one’s child continually struggle slowly erodes the spirit of the parent. Yeah, it’s ludicrously poetic. It’s that or throw something.

***

This afternoon, I found an e-mail from my dad waiting in my inbox. Its tag line read, What Love means to a child. The body of the e-mail explained that what followed were children’s answers to the question, What is love? I read through the quotes and, not surprisingly, got teary at a few, like ..

‘When my grandmother got arthritis, she couldn’t bend over and paint her toenails anymore. So my grandfather does it for her all the time, even when his hands got arthritis too. That’s love.’ ~ Rebecca- age 8

and …

‘Love is what’s in the room with you at Christmas if you stop opening presents and listen.’ ~ Bobby – age 7

I laughed at others, like ..

‘I know my older sister loves me because she gives me all her old clothes and has to go out and buy new ones.’ ~ Lauren – age 4

and ..

‘Love is when my mommy makes coffee for my daddy and she takes a sip before giving it to him, to make sure the taste is OK.’ ~ Danny – age 7

But it was the story at the end of the e-mail that did me in. And oddly enough, it brought me right back to that day at the gym – the day that without knowing why, my dad showed up – almost two hours early and right on time.

The best quote of all came from a four year-old child whose next door neighbor was an elderly gentleman who had recently lost his wife. Upon seeing the man cry, the little boy went into the old gentleman’s yard, climbed onto his lap, and just sat there. When his Mother asked what he had said to the neighbor, the little boy said, ‘Nothing, I just helped him cry.’

***

Love can’t always make things better. Or even different. I can’t fix the world for my little girl any more than my dad could unbreak my leg.

I can’t keep her demons at bay. I can’t find a way to convince her nervous system that she isn’t under attack when a little boy coughs.

And it hurts like hell when I can’t make it right.

But I swear I could hear my dad’s voice in the e-mail. Maybe just because after all these years, I know what he’d say.

You walked with her, Jessie. You held her hand and rubbed her back, You took her AWAY. You were THERE.

You helped her cry.

My dad isn’t on Facebook. He couldn’t have seen my status. I haven’t spoken to him in a few days. He had no way to know.

But he did. He showed up right on time.

He was there.

And simply by being there, he reminded me that sometimes that’s enough.

 

fix it

The emotional effects of anxiety may include “feelings of apprehension or dread, trouble concentrating, feeling tense or jumpy, anticipating the worst, irritability, restlessness, watching (and waiting) for signs (and occurrences) of danger, and, feeling like your mind’s gone blank” as well as “nightmares/bad dreams, obsessions about sensations, deja vu, a trapped in your mind feeling, and feeling like everything is scary. ~ Wikipedia

-

Dear Doctor,

It’s nearly midnight. I really shouldn’t be on the computer.

But hell, I shouldn’t be up sobbing and gasping for air either.

But you see, Doc, that’s what happens when my girl hurts – I hurt.

It’s a fundamental law of parenting, isn’t it?

And that one I can live with.

But isn’t there an even more fundamental law, Doc? The one that says that children shouldn’t hurt?

Not like this.

No one should have to live like this. Especially not a beautiful little girl who didn’t do a blessed thing to deserve it.

What we’re doing isn’t working, Doc.

We weaned her off the one, the first – the one that you said had ‘lost its efficacy’ – official sounding words for ‘It’s not working anymore’.

And we agreed. She seemed so much more anxious – so much more uncomfortable than she’d been in years.

But guess what, Doc. Looking back now, I think it was working.

Oops, huh?

But we did what we all thought we needed to do. We weaned her off the old one. Ever – so – slowly. And we ramped her up onto the other one, the new one, the Great White Hope in a bottle – the one that would make it all OK. And yes, we did it ever – so – slowly.

We followed the plans – the ones we designed together with the intricacy of a majestic ballet – slowly, ever so slowly rising while falling, determined to walk the knife’s edge of chemical balance.

But it’s not working, Doc.

It’s not %@#$ing working.

Because here we are – living in a place where my girl hides in the bathroom and curls up on the tile floor because her father is sauteing some God-damned mushrooms.

In no universe is it OK for a child to live in fear of a %$#@ing saute pan.

Doesn’t that sound absurd?

That’s because it is.

It’s NOT OK.

So fix it, Doc.

Just FIX it.

I never wanted meds to be the answer.

But we’re out of tricks.

This is all we’ve got left.

And my baby deserves better.

FIX IT.

 

the stage is yours

The time has come, my friends. We’re taking this show to Washington.

On January 31st, US Senator Kirsten Gillibrand (and can I just say, Oh my God, I LOVE her) and US Congressman John Larson (whom I don’t know, but since he’s doing this I’m going to say that I love him too) will host a Congressional briefing on Capitol Hill on the challenges faced by military families raising children with autism.

Please – make that PLEASE – make sure YOUR story is heard.

You don’t have to pack a bag. You don’t have to fly to Washington. You don’t even have to leave your house. All you have to do is click on the video below and then follow the instructions for uploading YOUR family’s story and ensuring that our lawmakers – the ones with the power to make things better for our nation’s littlest heroes – hear it.

This briefing is a huge step closer to making H.R. 2288, The Caring For Military Kids with Autism Act a reality. But it won’t happen without YOU. Tell your story. Washington is listening.

You don’t have to be a military family to send a clip. Heaven knows, I’m not about to let my status as a civilian stop me from taking the opportunity to tell my lawmakers why this matters so damn much. You don’t need to wear the uniform to know why it is unconscionable to leave those who do without the ability to provide for their children’s most basic needs. Please tell them that. Congress need to know that there is overwhelming civilian support for this bill.

Please take the time to do this. It’s such a small expenditure of effort to show our heroes that when the time comes, we will be here to fight for them just as they have fought for us.

(Psst. The time has come.)

Thank you from the bottom of my heart to Rachel Kenyon and Karen Driscoll for the unbelievable amounts of work they put into this. They carry their brothers and sisters in arms on their backs and in their hearts. Their burden is heavy, yet they press on day after day to do what it right. They inspire me to be better – to do more.

Thanks to Autism Speaks for picking up the mantle of advocacy for these families and shining their fabulously bright spotlight on their challenges. We are so grateful for their help and guidance.

Thank you to Senator (Oh my God I LOVE her) Gillibrand and Representative Larson for their support and leadership in Congress.

And mostly, to our soldiers – thank YOU. Thank you for making unimaginable sacrifices in the name of your service to this country. Thank you for standing by us, keeping guard and keeping us safe, even when it seemed that your country was not there to do the same for you and your children.

We’ll make it right.

I promise.

-

fighting fires

-

Ed note: In the interest of making this more of a blog post than a book, I’ve cut it down significantly from its original form. Apologies to anybody out there who really likes a whole lot of extra words.

September 2010 ~

I don’t know which of us is more nervous.

OK, that’s crap. Yes I do. My baby girl. By far.

The fire drill is this morning.

We’ve done it all right this time.

We waited until the day before – just enough time, not too much time – the constant balancing and gauging and then rebalancing – and well, I hope it’s just enough time and not too much time. And isn’t this the game we play?

We have the Social Story from last year. From the time that we didn’t have any warning and my girl nearly crawled out of her skin.

We have the story about the nice firefighters and how they aren’t usually at school, but once they were because they were testing the fire alarm. About how they keep us safe. How the fire alarm tells us that we need to leave the building so that the firefighters can turn it off. How when the fire alarm is too loud, I can cover my ears and stay with my teacher. How we’ll walk together and wait for the fire alarm to stop and the firefighters to tell us it’s OK to go back in the building. How if I hear the fire alarm, I can pretend it’s saying, “Get out of the building!” in a funny voice.

The story that we had to write with the BCBA after my girl nearly crawled out of her skin.

The story that didn’t stop her from saying EVERY SINGLE DAY since that fire drill- EVERY SINGLE DAY without fail – “No noises at school today. There will NOT be firefighters at school today.” Every single God damned day.

We have the checklist. She knows what to do. Together we read through the procedure. We practiced how her aide will help her check each item off the list.

When I hear the fire alarm I will cover my hands with my ears.

“What will you cover?”

“My ears.”

I will have a quiet, calm voice and body.

“Will we scream and run?”

“No, we will stay calm.”

Then I will line up with my class and my teachers with my ears covered.

“What will you do next?

“Stay with Miss K.”

My teacher will lead me out of the building and away from the alarm.

“Where will you go?”

“Outside.”

I will wait outside with my teacher until the nice firemen turn off the alarm.

“Who will turn off the alarm?”

“The nice firemen.”

When the nice firemen turn off the alarm, the fire drill is done and I will walk back to my classroom with my class and my teacher.

I’ve told her that she’s different this year. She’s more grown-up. She can handle this. It won’t be the same.

As I walked out of her room last night, my girl’s last words for the day were, “Tomorrow is my fire day.”

I left her at school this morning covering her ears. She didn’t believe me when I told her not to worry, that it wouldn’t happen without her knowing.

She was shaking as I kissed her goodbye. I made the funny voice. “What does the alarm REALLY say?” She laughed as we said, “Get out of the building, get out of the building!”

We’re as ready as we can be. All hands are on deck. She’s going to be OK.

She’s going to be OK.

Tell me she’s going to be OK.

-

*

-

Saturday morning ~ 

Brooke and I bundle up and head out for a walk in the freshly fallen (and still falling) snow. It’s incredible snow – powdery and dry, far more Aspen than New England. She scoops it up in handfuls and tastes it. She stops to tilt her head skyward, opening her mouth wide to try to catch it. Every few feet she drops straight into it to make snow angels.

As we walk, we talk. We follow scripts for the most part. “Mom, you be the dog. You are a bad dog.” I play my part by offering a sad doggy growl in response. The scripts always sound so odd when I type them, but hey, they are what they are. 

We stop to ‘clean’ the trees, then a stone wall, then a neighbor’s bushes, watching the snow cascade down from each in sheets of white. Brooke is enthralled.

After a while, she decides she is done. “I’m so very cold now,” she says. “We will go home and then you can make me some hot cocoa of the water kind.”

The ‘hot cocoa’ will be a glass of water that she will call hot cocoa. Because it’s the idea of it, the convention – the fact that mamas make hot cocoa when kids come in from the snow – that is appealing. When you don’t actually like hot cocoa, you have ‘the water kind.’

As we walk, I veer dramatically off script to ask her a question. “Hey, Brooke, what do you think you want to be when you grow up?”

There was a time that I never would have asked that question, for so many reasons. Now I do. And not because she’s evolved, but because I have. 

Her answer comes quickly, without hesitation. And it’s not at all the answer I expect.

“I will be a fire fighter!” she says.

I try not to stammer. “Really, baby? How come?”

She is silent. I wait, then realize that ‘how come’ is not a phrase that registers. I try again.

“WHY do you want to be a fire fighter, honey?” I ask.

Again, her answer is immediate. And not remotely what I might have thought she’d say.

“So that I can test the fire alarms.”

I’m glad that she’s looking at the snow and not my face. Surely it registers shock.

“Really?” I ask.

I proceed cautiously, unsure of where to go with this.

“I thought you didn’t like the fire alarms,” I say.

“I don’t,” she answers. “But the fire fighters do!”

I laugh. I can’t help it. The logic – while perhaps flawed, is sorta brilliant.

I don’t like fire alarms + Fire fighters do like fire alarms = If I were a fire fighter, then I’d like fire alarms. 

It’s genius really.

Oh, it also turns out that she wants to save animals, which apparently fire fighters do too.

“You’d be a wonderful fire fighter, Brooke,” I say.

“I would?” she asks.

I picture her decked out in fire gear, coming to a school someday to test the fire alarm. I see her walking slowly over to a little one cowering in the corner covering her ears. I hear her saying, ‘It’s all right. I understand.”

“Yes, baby,” I answer, “You really would.”

 

a thousand more nights

Last night, long after putting the girls to bed, I went trolling through Facebook, looking to see what the people in my world were up to.

Many were still celebrating the Patriot’s win. Some were railing against the hypocrisy of Newt Gingrich’s stand on .. well, everything, Some were posting various articles discussing and dissecting the proposed changes to the DSM-V.

And then there was something else entirely.

A friend had posted a link to THIS.

Please click on the link above and read the post before continuing. Nothing that follows has meaning without it. 

I don’t know Susan, though I was honored to be nominated for the Bloganthropy award with her last year – an award that she ultimately, and very deservedly won.

As I read her beautiful, poignant post, tears streaming down my face, a little person came barging into my room. There was an obvious sense of purpose in her stride. She was agitated – on a mission.

I wiped my face clean and looked up at her.

“What’s up, sweetheart?” I asked.

“Betty Lou is lost!” she said, her little brow furrowed with worry. “I need to find her.”

“Well then let’s go, little one,” I said. I picked her up and carried her back to her room. Nearly nine but not yet fifty pounds, I still have the luxury of carrying her.

“I love you so much, my sweet baby,” I whispered in her ear, “So very much.”

And on that short walk across the hall it hit me full force. Just what a blessing – what a privilege it is to be here. To do the stuff that drives me crazy. To search for a lost stuffed animal in the middle of the night. To carry my girl. To tell her that I love her. 

We went into her room and began the Search Protocol. I stripped the bed, one layer at a time. I placed everything on the floor – then searched under, over, on top, on the bottom, from side to side. All the while, Brooke was curled into a ball on her floor. “I feel worried about her,” she said plaintively. “I miss her SO much!” she added for emphasis.

I finally spotted little Betty Lou just far enough under the bed that we’d have to move it. Luau came to the door just in time, wondering what was going on. He picked up the bed, canopy and all, and slid it over just enough so that I could grab the doll. I reached down, retrieved her and handed her to Brooke.

Brooke grabbed her as though she’d been away at war. She hugged her and rocked her and kissed her head. She declared her love for her. She had me hug her too.

I tucked them in together, kissed them both and walked away feeling like I’d won the lottery.

-

Susan, you have inspired so many with your strength, your faith and your love. I wish you no less than a thousand more nights getting your ass out of bed to find a damn stuffed animal.

You are, and will always be, in my prayers. 

dinner time

-

It’s dinner time.

I try to coax her into the kitchen.

She takes a few steps, then bounces off an invisible wall.

Have you ever seen a firefighter repelled by overwhelming heat? It may be invisible; but it’s impenetrable. 

She reels backward into the office.

I offer her my hand again. I promise to show her that the cooking is all done. That it’s OK to walk into the kitchen now. I tell her that we will look at the stove together before we walk all the way in.

“There’s nothing on the stove, baby,” I say. “I promise.”

She looks leery.

“No pan?” She asks.

“No pan,” I say again, “I promise. Let’s go look together. I’ll be right here with you.”

Her body is rigid. She’s not moving.

“No pots?” she asks.

“No pots,” I say.

“There won’t be any noises,” she says.

“No baby, no noises,” I promise. “Let’s go see.”

Together, we take a tiny step forward. I’m hopeful.

Then not.

She drops my hand and bolts in the other direction. She runs in a tight circle – into the hallway, around the corner, into the living room. and back through the office door. She is covering her ears with her hands. She’s no longer talking, but yelling.

“NO NOISES! THERE WON’T BE ANY NOISES!’

God damn it. 

Academic challenges? Bring ‘em on, Bucko. Difficulty with diet? Self care? Social Pragmatics? Transitions? We’ll figure em out. Every one of them.

But this.

I can’t ‘fix’ this.

I can’t make it OK.

I want to scream with her.

I want to know why.

Why my girl.

Why anyone’s girl – anyone’s child needs to hurt like this.

Why?

No, this isn’t an option. Not now. 

Deep breath. 

I tell her again. “The cooking is all done, Brooke. It’s time to eat now. It’s OK. No noises. I promise.”

A broken record.

We’re stuck in a loop. 

I offer to pick her up, to carry her in. “I’ve got you,” I say. “You’re safe,” I tell her.

It’s hollow. I can tell her until I’m blue in the face that she is safe – I can try my damndest to SHOW her – to PROVE to her – that she is safe, but if I can’t make her FEEL safe, it’s all for naught.

That difference is monumental once adrenaline has drowned reason. 

She comes toward me ever so slightly, then stops again.

She’s shaking.

-

Eventually I will coax her past the stove.

We will make it – together – to the table.

We will both feel like we’ve climbed a mountain.

-

Later, I will sit down at the laptop, open it to Diary’s Facebook page, and write.

Please God show me how to take away my baby’s fear. We can get through anything – we can, but damn, it’s the %@&#ing fear that hurts the most.

And I will close my eyes.

And pray.

twelve (or so) more things i learned on my weekend away

Shhh!

1. If I knock over the sign that says ‘Quiet Please’ in the quiet room at the Spa, it will make a really loud noise.

1.a. If I make a really loud noise in the quiet room at the spa, everyone will look at me.

1.b. If I say, “Oh, the irony!” as I pick it up, almost everyone will laugh.

1.c. When almost everyone laughs, the quiet room at the spa will be anything but quiet.

1.d. The very pregnant lady in the corner will not be laughing.

1.e. I’ll feel kinda badly for her, remembering when I was pregnant and sorta hated everything and everyone.

1.f. Three minutes into a hot stone massage, I’ll forget the humorless pregnant lady.

1. g. And my name.

1.h. And that will be good.

-

2. I’ll feel really old when I say, “I don’t get these new-fangled slot machines.”

2.a. Only old people say new-fangled.

2.b. New-fangled is fun to say.

2.c But I really will have no clue how the damn things work.

2.d. And they don’t come with explanations.

2.e. And everyone else apparently gets it or is happy to just feed them money without getting it.

2.f. Whether or not you know what’s happening, slot machines are an extremely efficient way to lose money.

-

3. Blackjack is way more fun.

3.a. Cause at least you lose your money (a little) more slowly.

-

4. When you’re five feet tall on a good day and your travel companion is 5’10 in her bare feet and likes to wear heels, you’ll be glad you brought these.

-

5. Real friends, no matter how tall they are, are priceless.

-

6. I am at the age where if I were single, I’d be a cougar.

6.a. I have no idea when that happened.

6.b. Bar talk at this age is, um, interesting.

6.c. I am not a cougar.

-

7. Most cabana boys do not look like the ones we conjure up in our heads.

7.a. Which is kind of a bummer.

7.b. On the heels of #6, this is kind of uncomfortable.

7.c. Moving on.

-

8. I will mention autism, even in casual conversation.

8.a. But not all the time.

-

9. I will be extremely taken aback when someone says, “Your friend told me that you both have kids with autism. It’s just incredible what you guys do. Truly.”

9.a. It will be his head cocked ever so slightly to the side and the look on his face that will really do me in.

9.b. And the oozy, drippy sympathy will make me, well, angry.

9.c. I will be tempted to say, “If you actually knew anything about what I do, I’d be OK with this. But all you know is that I am my daughter’s mother, and please sir, understand that being my daughter’s mother is the greatest honor on this earth and one for which perhaps I deserve your envy, but sure as hell not your sympathy.

9.d. I won’t.

9.e. And that’s OK.

-

10. When a baby screams at midnight in the room next door, I’ll flash back some five years to a hotel in Buffalo at 3 a.m., Brooke jumping on my head while yelling, “THREE LITTLE MONKEYS JUMPING ON THE BED!” and I’ll be pretty sure the baby is karmic payback.

-

11. Coquis actually exist.

11.a. And not just on Dora.

11.b. Coquis are really loud.

-

12. I am a mom.

12.a. It’s who I am.

12.b. For me, being a mom will always come first.

12.c. It’s how I’m designed.

12.d. But it’s not ALL that I am.

12.e. The rest of me is sorta cool too.

12.f. I need to remember that a little more often.

-

Ed note: I am honored to have guest posted over at the Oxygen Mask Project. Come check it out, won’t you?

12 things i learned on my weekend away

Fred the iguana

-

1. Banana Malibu Coladas are just as yummy as they sound.

1.a And they make for a sort of awesome picture.

-

2. Men make assumptions about women of a certain age (as in my certain age) who are sitting at a bar at a Caribbean resort with a girlfriend.

2.a Men who make assumptions about women of a certain age who are sitting at a bar at a Caribbean resort with a girlfriend tend to be sorely disappointed when said assumptions are way, way … um .. WAY off the mark.

2.b My husband is kinda awesome.

-

3. It’s really nice to read a book that has absolutely, positively nothing to do with autism.

3.a Books that end with the words “To be Continued …” should come with a warning label. Cause that’s crap.

3.b So I will now be buying this in March.

3. c And wondering when on earth I’m going to actually read it.

3.d. And fantasizing about taking another trip just so I can.

-

4. I will miss my kids. A lot.

4. a They will be OK.

4.b Face Time is the best invention ever. Not counting Hot Stone Massages. 

4.c It’s sorta hilarious when I’m on Face Time with Katie and I ask her what time she got to bed at her sleep over the night before and she says, “What, Mama? I think we have a bad connection,” and I can see her just sitting there so she lies down on the floor to hide from the phone and starts giggling.

4.d. Ten is an awesome age.

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5. Hot Stone Massages are better than Face Time.

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6. I need to take care of my body.

6.a. When my friend, a fellow autism mom who has three kids and is in fantastic shape says to me over dinner one night, “Well, we have to live forever right? So I eat well and I work out because I just can’t understand why I’d allow myself health issues that are preventable with diet and exercise,” it will sound so damn unbelievably simple and make so much sense that no matter how many times I’ve heard it or read it or even said it before, something in the universe will shift and for the first time in my life, I will truly take it in and absorb it.

6.b. I will look at food – and everything – differently from that moment on.

6.c. I will be immeasurably grateful to her for saying those words out loud.

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7. The world will not pause because I’m away.

7.a. I may come back to a mountain of crap that I have to deal with.

7.b. Mountains of crap are a lot easier to deal with when I can close my eyes and remember what it felt like to have a Hot Stone Massage.

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8. My husband is kind of awesome.

8.a. Yes, it’s a repeat.

8.b. Without him, this never would have been possible.

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9. My family can function without me.

9. a. That’s a good thing.

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10. Even after two days away from home, I will still not be more interesting to Brooke when I walk through the door than Blue’s Clues.

10.a. That’s not really true, even if that’s the way it appears.

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11. When Katie comes running through the door moments later, she will make me feel like a soldier returning from a year’s deployment.

11.a. Welcome home sign and all.

11.b. She will have gotten me presents.

11.c. When she hands one of them to me, I will be a little taken aback and momentarily wonder what the heck Luau did.

11.d. It will all make sense when she then says, “I wasn’t sure if it was a real diamond or not, but then I remembered I was in Claire’s and so I figured it wasn’t, but I still thought it might be really expensive – ya know, like twenty bucks, and then I found out it was $5.50 and I could afford it and I totally had to get it for you cause it’s a heart! But I’m pretty sure it’s not really a diamond.”

11.e. And then I will melt in a lump and tell her that it’s the most fabulous ring I’ve ever seen and then she will look at Luau and say, “Daddy, you could have saved a lot of money on Mama’s engagement ring. Just sayin’.”

11.f. Ten is an awesome age.

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12. I will be a better mom for doing this.

12.a. This doesn’t have to mean a trip to Puerto Rico.

12.b. This can be as simple as taking a walk, reading that book when it comes, taking a bath.

12.c. Doing this is what fills our tanks for the journey.

12.d. And since we have to live forever, those tanks better be full.

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13. I will be really, really glad I went.

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Thank you, Jersey, for making this happen, and thank you, Luau for making it possible. I love you both. 

Ed Note: For more on The Year of the Oxygen Mask, check out O2, The Oxygen Mask Project - To care for others, you have to take care of yourself as well.