wait to worry

When you get what you want in your struggle for self And the world makes you king for a day Just go to the mirror and look at yourself And see what that man has to say. For it isn’t your father, or mother, or wife Whose judgment upon you must pass The fellow whose verdict counts most in your life Is the one staring back from the glass. He’s the fellow to please – never mind all the rest For he’s with you, clear to the end And you’ve passed your most difficult, dangerous test If the man in the glass is your friend. You may fool the whole world down the pathway of years And get pats on the back as you pass But your final reward will be heartache and tears If you’ve cheated the man in the glass ~ Dale Wimbrow

I spent yesterday at a funeral service for a man I adored.

Strike that.

Adore.

Yes, that’s better. Adore still. I have not stopped.

Although people are often elevated in death, my cousin, Bud was everything we said he was yesterday. He was a mensch in the truest sense of the word. He was warmth and love personified. He was joy; he was light; he was generosity. He was compassion. He was an easy smile, a ready laugh and a song, not just in his heart, but there to share in all its off-key, mangled-lyric glory.

He was the one who made each and every one of us feel special. The one who looked at you with eyes that saw straight through to your soul, and reveled in the goodness he found there. He was funny. God, was he funny. And he was a hero. To his wife, to his children, his grandchildren and to the nation who honored his service by seeing him off beneath her stars and stripes.

My cousin, Mike, Bud’s son (the step- having long since become superfluous) told the congregation yesterday that when Bud was diagnosed with the illness that would take his life, he called him. “Are you scared?” he asked.

“No,” Bud had said, “I don’t have time for that.” He was too busy, he explained, writing his own eulogy for Mike to read when the time came.

Tears flowed as Mike read Bud’s words yesterday. But so too, we laughed. Because even in the midst of the grief, there was no way not to laugh. This was Bud, after all.

“I hope it’s not raining,” Bud had written. And added for good measure, “If I ever offended any of you in any way, I hope you’ll accept my apology.”

I would argue that Bud’s eulogy was not written that day. It was written every day for years. Bud built a life around who he was and in so doing, he touched every person who was lucky enough to come through it.

As we drove home yesterday, I tried to process the day – the heartbreak of loss, the joy in the remembering, the closeness of family. I thought a lot about how we live our lives and the stuff that really matters at the end of the journey. Of all that we’d heard and felt yesterday, there was one line that spoke the loudest. And of course, it came straight from the man himself.

A friend of his told us that she and her husband had gone to visit him last week, just days before he passed. His parting words to them that day? “It’s later than you think. Have fun.”

Indeed.

Bud, I know where you are, there is fun. There’s music and joy and the beloved daughter who you missed so much. Heck, there might even be fish. But whether there are or not, it’s gonna be a great trip. Because it never really was about catching anything anyway.

You were loved. You will be missed. You will always be remembered.

i know.

For D. I know. I really, really know.

*

I call Brooke down for dinner. She answers. I can’t make out the words but the tension in her voice is unmistakable.

“Honey,” I call up the steps again, “It’s time to come down. Dinner’s ready.”

“NOOOOOOOO!” she yells in response. There is no rebellion in the word. Instead, there is urgency, anxiety, fear, pain.

“I’m looking for my ballet tights!” she yells. “I’m doing ballet.”

“OK, baby,” I say. My voice is trembling. “It’s OK.”

I’ve been here before. Right on this very spot. At the bottom of these stairs. Helpless. The ballet tights were slippers that day, but the steps were these steps, the wall against my back was that very wall right there.

This moment has just become that one.

I want to scream. I want to run. I can do neither. I sit on the bottom step, not because I want to stay here, but because I can’t go anywhere else.

The air is devoid of oxygen.

I can’t breathe.

Brooke comes down the stairs, now fully dressed for the ballet. She is a vision in pink – leotard, tights, tutu and shoes. I try to hide the tears that roll down my cheeks unbidden.

I steal a hug as she makes her way to the kitchen. She lets me hold her for the briefest moment, but I have her body only. Before I can say anything to her, she’s already gone.

I try to gather the pieces of myself from the steps. I wipe my face and take a deep breath before I follow her into the kitchen for dinner.

Luau is standing at the counter. He looks up. He looks at me, then at Brooke in her ballerina outfit, then back to me. He heard the whole exchange.

“PTSD moment?” he asks. The question is casual. It sounds no different than, “Something to drink with dinner?” It simply is.

I nod. I lean into him and duck my head into his chest. But not too close. I prop myself up on my elbows, keeping us just far enough apart to keep me whole. The distance between us is the duct tape that holds me together; if I surrender – if I get too close, I risk melting into a puddle in the middle of my kitchen. I have to stay whole.

Brooke is circling the table, alternately humming and squealing. She’s OK.

This moment was not the same as the first.

I know now.

It’s all different now.

And yet.

As I dry the last of the tears, I am reminded.

It simply is.

*

For help with PTSD, click HERE

possible

**

“What’s the baby’s name?”

I recognize the words as a script, but the young mom with the ten-month old in the baby pool does not. Why would she? The question is appropriate. And wonderful.

From a few feet away on the pool deck, I try to contain my pride.

This is the child who has never been able to tolerate a baby in any form – their coos and cries an all out assault on her nervous system, they were simply too much to bear. Now here she is, wading her way over to a mom to ask her baby’s name. 

The mom looks at Brooke for just a split second too long before she answers.

Yes, ma’am, my eight year-old is in the baby pool. Yes, we did see the sign that says it’s for ages three and under, but she likes it here. Particularly when she has it all to herself as she did before you came in. You see, it’s quiet and there are toys here. She likes to ‘water the plants’ with the watering can. Really she just waters the pool deck, but there’s something soothing about watching the water darken the concrete. It calms her when the big pool gets chaotic. But all that doesn’t really matter does it? She’s asked you your baby’s name. 

“What’s the baby’s name?” my girl asks again.

Her voice is a little too loud and she’s standing just a little too close. Mom has her guard up, but she smiles.

“This is Lilly,” she says.

Brooke squats down to the baby. They are nearly nose to nose.

I stand up and slowly walk over to within reaching distance. I don’t say a word, but I smile at mom.

It’s OK; I’m here. But please know that I’m not going to intervene unless I have to. I know you don’t know this, ma’am, but my girl is leaping over a huge hurdle right  this very second as you and I watch. We’re witnessing something big. Something really big.

She’s ready for this. I’ll be here, but I’ll be here quietly as long as I can. 

Still on her haunches, barely six inches from little Lilly, Brooke buries her face in her hands. This is new. I wonder if she’s hiding.

She opens her hands in the baby’s face and shouts.

“PEEK-A-BOO!”

My heart is so full. I don’t have to tell you why, do I? You get this, right? I am grinning. I can barely contain myself.

She doesn’t get a satisfying reaction, so she tries another tact.

“Baby, smile!” she says. “Smile, baby!”

Lilly looks a little more confused than amused. She leans into her mom.

Brooke reaches out for her foot. “I will do Little Piggy to her,” she announces.

I stop her before she grabs Lilly’s toes to explain that we can’t touch a baby without asking mom if it’s ok.

Brooke looks at mom. “Is it ok?”

The mom very sweetly says, “Sure it is. Lilly loves ‘This Little Piggy!’” She coos at the baby. “You like that, don’t you, punkin?”

Brooke launches in, gently wiggling one little piggy at a time until she gets to “Wee Wee Wee, all the way home!” She pretends to tickle her and Lilly lets out an adorable baby giggle. Brooke laughs in response.

I smile at the mom – perhaps just a little too broadly – and tell Brooke that it’s time for us to leave Lilly and her mommy to play for a while.

We walk back to where she had been sitting before they arrived. I squat down and tell her how proud I am of her. I tell her she is an incredible kid.

“I am?” she says.

“Yes, baby, you are.”

Without another word, she finds her watering can and takes up her work on the pool deck.

My daughter played with a baby.

EVERYTHING is possible. 

dance

*

And when you get the choice to sit it out or dance
I hope you dance

~ Lee Ann Womack, I Hope You Dance

**

Katie and I are waiting in line to get some dinner before the show. This week’s Mama Katie date night is a special treat. Just two days ago I serendipitously fell into two tickets to Taylor Swift, making for one extremely happy ten year-old.

The evening air is electric as fifty-two thousand people mull around the outdoor stadium, waiting for Taylor to take the stage. In the meantime, James Wesley is crooning his fabulous new single from behind us,

Five hundred channels and there ain’t much on tonight
But reality shows about some folks so-called lives
A pretty girl cries cause she don’t get a rose
But she’ll find love next year on her own show
And they call that real

Real, is the hand you hold for fifty-seven years
Real, is a band of gold trembling with fear
And it’s the first long tear down an old man’s face
Watching his angel slippin’ away
His heart so broke, it ain’t never gonna heal
I call that real

I put my arms around my girl and sway to the music. She looks up at me with a sheepish smile as I sing along with James. As he hits the chorus, the music builds and I hug my girl and swing her in time to the beat.

“Mama,” she asks, “why do you always dance in public?”

My girl is ten. She’s watched some friends decide that moms are insufferably uncool and should serve no purpose beyond doling out cash and food and driving them from one place to the next with as little interaction as possible.

She isn’t there yet. Hopefully there’s no ‘yet’. Shuddup, a mom can dream. For her, while I may not be exactly ‘cool’ anymore, I’m still silly and kinda entertaining and sometimes even funny. Mostly, she clings hard to the idea that Mama can still make things all right. And perhaps because her life at home is a little different than most, this time alone with her Mama still carries a premium above all else.

But she’s still ten. She’s OMG people are like LOOKING at us ten and MAMA, you’re totally embarrassing me ten and even though no one is actually looking at me I feel like every eye in the place is on me because, well, I’m ten.

And so the question.

“Mama, why do you always dance in public?”

I often stop to think before answering her questions. Gun-shy after our first spectacularly failed sex talk many years ago, I often question my initial response, think about possible consequences and measure my words carefully as I proceed. Not this time. I don’t hesitate for a second. This one I got.

“Baby, I dance because I choose joy. I choose to live in each and every moment that I can and I choose to FEEL it – whatever it may be in that moment. If I’m moved to dance I let myself dance. Because I would choose joy every single time over worrying about what other people may be thinking.”

She shrugs and slips an arm around my waist.

We turn and look around the stadium together. It’s still light out, but the air is changing. It will soon be twilight, I tell her – that magical time when the world looks and feels enchanted.

I put my arm around her shoulder and whisper in her ear, “besides, nobody’s really looking anyway.”

She looks around and decides I’m not lying. She smiles at me and sways a little hip into mine. James ramps it up just in time.

Real, like too much rain falling from the sky
Real, like the drought that came around here last July
It’s the damn old weevils and the market and the weeds
The prayer they prayed when they planted the seeds
And the chance they take to bring us our next meal
I call that real

Later in the evening, right in the middle of the concert, my girl will begin to cry. She’ll ask if we can sit down. She’ll crawl into my lap and cling to me for comfort, burying her head in my chest. “Mama,” she’ll finally say, “things have just been so hard lately. I just wish they didn’t have to be so hard.”

And I will say, “I know, baby, I know. I wish I could make it easier.”

She’ll sniffle into my shirt.

I will say, “Ya know what, sweet girl? That’s why we dance.”

She will look confused.

“Honey,” I will tell her, “sometimes life isn’t easy. It doesn’t always work the way we want it to. Things will get better; I promise. But so too, it’ll be rough sometimes. Life works like that – in cycles.”

She nods. At ten, she already knows so much more than she should about life’s ups and downs.

“So when there are moments of joy, we take them. Remember how I said that we have to allow ourselves to feel them?”

She nods into my chest.

I pick up her chin and wipe the tears from her beautiful face.

“We dance, baby, because those moments make these just a little easier.”

She smiles at me. And in the chair, holding onto each other, we sway to the music.

**

of angels and cross blogination

When God wants to speak and deal with us, He does not avail himself of an angel but of parents, or the pastor, or of our neighbor.

~ Martin Luther

*

One of my very favorite things about writing a blog (and yes, there are MANY), is something my friend, M calls cross-blogination. The concept is simple – a blog writer reads a post on another blog, is moved by something s/he finds there and takes it back home to chew on it for a while. Then s/he turns it into a post of their own.

They may choose to dispute or dismantle the original idea or to look at it from an entirely different angle, or maybe, to simply take it, run with it and see where it takes them.

Yesterday, after reading THIS POST, Cera over at LearnLoveLiveLaugh (I know, awesome title for a blog, right?) wrote THIS POST which then prompted me to go back to my archives to find THIS POST and well, the whole chain just feels kinda magical, doesn’t it? At the very least, it is sending me on my way this morning on the lookout for the everyday angels who will cross my path today.

As a matter of fact, I think it’s fair to say that I’ve already found one.

Thank you, Cera!

Ed note: Please click on the words in blue to read the posts to which they refer. Thanks and Happy Friday!

babe bee

Way back in May (seriously, do you even remember May, cause it feels like it was years ago now), I posted the following story about a miraculous interaction that I’d witnessed between Brooke and her school’s custodian.

If you remember the story, skip ahead to the ***, otherwise, please join me in its retelling …

We had arrived at school early for Brooke’s parent-teacher (and aide) conference. But for a few staff members preparing for the open, the halls were deserted.

Luau, Katie and I stood by as Brooke began her morning locker routine. She sat on the floor, opened her backpack and took out her folder. After three years of practice, she can do it all by herself.

Luau and I spotted the school custodian down the hall and both waved. Luau shouted, “Good morning, Mr E!” We were all smiles as he walked by with a friendly hello.

He was five feet past us when I heard the first one. A deep, gravelly, “Babe,” that came out of nowhere. I looked at Luau, wondering if I’d finally lost it, but he had the same look on his face. We shrugged.

With the next one, there was no question. Once again, all he said was, “Babe.” This time Katie chuckled. Luau and I again looked at each other, searching for an explanation. There was no one else in the hallway.

Every five feet or so, he said it again. He was walking down the hall saying, “Babe. Babe. Babe.”

With a laugh, I yelled down to him, “Um, Mr E? You OK over there?”

He didn’t turn around, but yelled over his shoulder, “Listen!”

And then he did it again.”Babe.”

Um, I’m listening, Mr E, I thought. But I’m lost.

As if reading my mind, he said it again. “Listen!”

So I did. And the next time he said, “Babe,” I heard it. The tiny response that had been there each and every time. Into her locker, Brooke had said, “Bee.”

Three or four more times, before finally disappearing around the corner, Mr E said, “Babe.” And each and every time, Brooke said, “Bee.” Apparently, they had a thing.

Luau and I stood in the hallway, slack-jawed. Katie was giggling.

“Brooke, honey,” I asked. “Do you and Mr E do that every time you see each other?”

She never stopped doing what she was doing, but answered my question with a quiet, “Yeah.”

I talk a lot about awareness. I talk about compassion and understanding and inclusion. I talk about seeing people – really stopping and SEEING people. I talk about reaching out and making connections. They are big, overwhelming, life-changing concepts. That sometimes have the simplest execution.

This man has found a way to connect with my girl. A silly little routine. A single word, split in half. A script. Heaven knows how it may have gotten started. It is nonsensical at best. But through its repetition, my girl is seen. With one word, she is told that another adult is there. That school is safe and that she is OK.”

***

Yesterday morning, we presented Mr E with a small gift. We’ve always gotten him a little something at the holidays and again at year-end – tiny tokens of gratitude for his service to the kids. But this year was different. All in all, this year’s gift cost less than any that preceded it, but I’m pretty sure that it means a whole lot more.

I asked Brooke to sign her name to her work, but she refused. “I’m on it,” she said, pointing to her image. It was a hard point to argue.

When Brooke handed it over, Luau told Mr E the story, explaining that it wasn’t signed, but that we were certain that he’d know who it was from. Mr E looked at it, pointed to the picture of Brooke and said, “Of course it’s signed. She’s right there.”

There are precious souls in this world who just get it. No need for explanations, they just get it. And for them, I am eternally grateful.

*

*

“Babe–Bee” by Brooke, 2011

the bag

*

I called home from work yesterday, checking in on the girls. Neither has had an easy time as the school year has wound down.

Brooke has been orbiting the heart of capital A autism land – regressing dramatically at home as the seasons change and the demands of unstructured, end-of-year days take their toll on her.

Katie has been struggling too. Stressed by her sister’s very presence these days, her fuse has shortened at home. More and more time is spent in her room, escaping into her world of books. On top of everything else, she’s been grappling with some serious disappointment. A friendship she valued has fizzled pretty spectacularly in recent days – a victim to the fickle whim of fourth grade girls.

So I was calling to see if everyone was OK.

While Brooke was willing to pick up the phone only to play out a favorite script, her sister was eager to talk about the day. One story stood out above the others.

There is a pre-verbal fifth grader in the girls’ school who Katie has talked about over the years. She’d come home with a story here or there about seeing him out on the playground or exchanging (prompted) greetings in the hallway.

One day she came home nearly jumping out of her skin with excitement. “Mama,” she’d said breathlessly, “Guess what? J said, ‘Hi’ to me to today! It was UNPROMPTED, Mama! No one helped him AT ALL! I mean, his aide was there, but she had NOTHING to do with it! It was so amazing! He totally SAID, ‘Hi!’”

I wasn’t sure if she was more proud at his accomplishment, or amazed that she was the one upon which he had bestowed the honor.

Yesterday, she told me, J’s aide had come to her classroom and called her out of class and into the hall. Once there, she found J standing with his mother. She handed Katie a small brown bag, in which she would later find a pencil decorated with smiley faces, an eraser and a party-favor style game of tic-tac-toe.

She was ecstatic.

“Mama,” she said, “it was the nicest thing EVER. J’s mom gave me the bag and said, ‘We just wanted to thank you for being such a good friend to J.”

“Oh, honey,” I said. “That’s incredible.”

My voice cracked. It took everything I had to hold back tears.

I am so proud of my girl. My girl who gets it. Who understands and celebrates the value in every human being she meets.

But so too, I was simply overwhelmed with empathy for J’s mom.

Never more than this time of year – this time when one child’s report card comes home in a special envelope – every single page bearing the words, “Progress Reports are required to be sent to parents as least as often as parents are informed of their nondisabled children’s progress.” 

This time when IEPs are fine-tuned and our babies’ challenges sit at the fore of our minds.

This time when comparisons are inevitable, assessments are necessary and gaping holes in development are more stark than ever.

This time when kids like mine are sliding down regression’s slippery slope thanks to longer days and routines that evaporate into the wind.

This time when their differences are just so painfully obvious.

As proud as I was of my girl, I just couldn’t get past the image of J’s mom, holding that bag. Handing my girl a trove of small treasures imbued with gratitude – for a little girl who had simply played with her son.

I pictured all of us. You, me, anyone and everyone who loves a child who struggles to connect.

We’re ALL holding that bag.

*

all i have

.

More than anything, I want to find out how the sleep thief does it. How does he steal the anxiety that the daylight so jealously guards?

~ From The Thief in the Night, Diary, June, 2008

**

 

Even sleep is not enough to ward off the demons tonight

She tosses and turns

Pushes

Shoves

Swipes at the air

At what?

Her face – always so peaceful in sleep, is contorted

A mask of frustration

Discomfort

Unease

I can’t chase away autism’s demons tonight

I’d take them on with my bare hands if I could

If they had the courage to show themselves

To stand up and fight

Instead they hide

Cowards that they are

And prey on a child

Bastards

She doesn’t deserve this

No one does

She has a right to peace

At the very least in her sleep

Please, God, just give her some peace

I lie down next to her

I’m here, baby

If nothing else, I’m here

Mama loves you

I’m here

She shoves me away

Then frantically pulls me in

She wraps herself around me

Then pushes off against my arms, my legs

And round and round we go

**

I cup her face in my hand

The tears stream down my cheeks

Cold and wet

**

Mama’s here

Tonight, it’s all I have

she knows – originally posted on hopeful parents, june 2009

*

A young couple sits in a trendy Manhattan eatery. Armani-clad waiters buzz about, working hard to look nonchalant.

Huddled over their small table, the couple focuses only on one another. That’s what they do. It is early yet.

She is driven – proud of her recent promotion to senior vice president just shy of thirty. A hard-won victory.

She speaks with conviction. She feels sure that she is conquering her world. She talks of desk politics, power and money.

He speaks in the language of philosophy. He weaves a tapestry of hopes and dreams and ideals.

They know they will have children, but the idea lives in the vapor of the future.

She watches his eyes dance.

“I’ve figured it out,” he says, nearly breathless.

His entire body is alight with possibility. Close to ten years later, she’ll remember this energy. She’ll remember how he was nearly vibrating in his seat.

“I really think I’ve got it,” he continues. He looks as though he might get up and sprint away from the table.

She listens intently.

“OK, you know how you say that you would never want to give up your career?”

She hasn’t yet learned the dangers of words like ‘never’.

She nods.

“But that you’d never want anyone else raising your kids?”

She sips her wine. Nods again.

“Well, love, you’re an incredibly bright woman; you know that. But I’m not sure you’ve really thought this through, babe.”

She doesn’t like being forced to acknowledge her own folly. She scrunches her nose in response.

She has no idea that her first daughter will inherit this habit – that it will become more hers than her mother’s.

“I never wanted to point out the contradiction because I didn’t have a solution. But I think I do now.”

She drops the fork that she has been using to idly push the food around her plate. She waits.

He looks at her for a long moment. A look she will never forget.

“I know what I want to be when I grow up,” he says, only half in jest.

She will realize later that she has been holding her breath.

“I want to be a Dad.”

The waiter passes by. He apparently thinks the better of interrupting them.

She doesn’t respond. She’s not entirely sure what he means.

“I was meant to be a Dad. It just makes sense.”

He goes on to explain his plan.

He will be a stay-at-home dad while she continues her climb up the corporate ladder. Her mutually exclusive plans are miraculously no longer so.

They don’t know that theirs will be a different kind of parenting than any they could have imagined. They have no idea that they will skip the prerequisites and jump straight into the Advanced Placement Class.

The waiter clears their plates and leaves dessert menus. They don’t open them. Instead, they order two more glasses of wine. They sit for a while. They are in no hurry. There’s no place they have to be.

She watches him.

He doesn’t know that he will be the best father that any child could ever hope to have.

She knows.

She knows it down to her very soul.

She will be wrong about many, many things – more than she could ever count. But not this.

She will be proven perfectly, completely, deliciously right.

[Twelve] years and two incredible little girls later, she is more right than ever.

.

.

Daddy and his girls – Kennebunkport, 2009

With love and gratitude to the only man on earth who could give my own dad a run for his money.

Happy Father’s Day, My Love

to my dad, because .. on hopeful parents

.

.

I’m at Hopeful Parents today honoring the very first man in my life.

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