love, jess

*

*

We went to an artist’s gala last night. You see, we travel in those sorts of circles – where gallery openings are nearly passe. Of course, we know the artist, so we had the inside track. That’s the way we roll.

The artist’s work was on display as part of a temporary installation at our town’s integrated preschool entitled, ‘Such and Such Elementary School’s 1st Graders’ Pop-up Bugs.’ It was nothing less than stunning work, as you can surely see above.

We were excited to go to the preschool, not just to admire Brooke’s multi-media extravaganza (seriously, how good is that painting?) but also because it gave us an excuse to visit her old stomping grounds. The preschool was the first place that understood her. The first place that TAUGHT her. The first place that reached out and taught US. It holds – and will forever hold- a very special place in our hearts.

As soon as we walked in the door, Brooke made a bee-line for her old classroom. The one that she stayed in for nearly two years. The one where she learned to approach other kids. The one where she learned to play with dolls and dress up like a princess. The one where she learned to jump. The one where they awarded her The Most Caring Friend Award. The one where they loved her and cared for her and most of all SAW her. The one I start to cry just writing about.

Katie touched my hand as we walked into the room. “Mama, you OK?” she asked. I nodded quietly.

I looked around the room and it all rushed back. The uncertainty, the doubt, the fear. I swear I could still smell the fear.

Brooke began to name the kids that had been in her class as she paced around the rug, walking from one child’s place marker to the next. She stopped on a red one. “What color is my name?” she asked.

“Your name’s not here anymore, sweetheart,” Luau said.

She bolted outside into the hallway. “Where’s my cubby?” she asked.

“You don’t have a cubby here now, honey,” I said. “You have a locker at your new school.”

She went back into the room and wandered around.

I looked at the wall of pictures, remembering that each child had a laminated photo that they used throughout the day. Brooke’s aide used to carry hers around to each station in the room and stick it by its velcro to the wall. Her day was narrated by this avatar of sorts, helping to create visual structure for her – helping her to understand where she was and where she needed to be.

I stared at the sea of beautiful little faces on the wall. I knew that by definition, more than half of them had special needs. That’s the makeup of the class. I tried to pick them out.

At first glance, there wasn’t much to see. To the untrained eye it were just a group of fresh-faced, wide-eyed little does. But we know what to look for, don’t we? Closer inspection revealed the nuances – the slight and not so slight differences. One little girl was smiling brightly for the camera while the next looked straight through its lens. One little boy was obviously stifling a giggle while the next wore a vacant and nearly melancholy expression. One girl mugged for the camera, scrunching up her nose while the next had a gentle sway to her slack lower lip.

Which parents, I wondered, come in here every day and drop their heart off at the door? Which parents wonder if their child will ever speak, ever play, ever laugh like the ones in those other pictures? Which parents want to shake the teachers every morning and say, ‘DO SOMETHING! PLEASE, FOR THE LOVE OF GOD, DO SOMETHING. HELP US.’? Which parents wake up in the middle of the night in a cold sweat wondering what the future holds?

I was one of those parents. I know.

My little girl wore the same distant expression as the little boy in the picture. I remember her photo. The one on the wall back then. She looked so small in it. So far away. Pictures were hard then.

We found markers and let Brooke leave a note for the class on the white board. She wrote,

“HI EVRYONE. LOVE, BROOKE.”

I wanted to leave a note too. To tell the parents of those kids, “It will be OK. It’s not always easy. But it’s OK.”

I wanted to tell them that there are people who have walked the path ahead of them and not just survived, but flourished. I wanted them to see the comment that I got yesterday – the one that wrapped hope in understanding and made my heart feel lighter.

She’ll be all right and so will you. My son used to come out with random, yet deeply thought statements like your daughter’s all the time. Drove me crazy – I knew there was fullness of thought, of feeling – so much going on in that brain of his- but I didn’t know how to access it, how to get him to communicate it, could never find the key.

But over the years a beautiful mind has unfolded, and you know what – it’s all right. Hang in there.

I wanted to tell them my little girl can read. That she can dress herself. That she has playdates. That she’s talking. And talking and talking and talking. That she’s starting to overcome fears and find words for emotions. That she’s OK. That we’re OK. That we’re getting the hang of it. That they will too.

Maybe I’ll go back and leave something on the white board.

“HI EVRYONE. LOVE, JESS.”

round and round

**

A circle is the reflection of eternity. It has no beginning and it has no end – and if you put several circles over each other, then you get a spiral.

~ Maynard James Keenan

You spin me right round baby right round like a record baby right round round round.

~ Dead or Alive, You spin me round (like a record)

**

The four of us sat in the grass at the Farmer’s Festival, waiting for our turn on the Hay Ride. Brooke was perched in the nest of my crossed legs, looking out into the distance. She looked very serious.

“She was crying,” she said out of nowhere. Her little brow was wrinkled into her go-to expression of nearly cartoonish concern. “And she fell out of the bed!”

“Who was crying, honey?” I asked.

“The girl,” she said. “She was crying.”

“Oh, OK, baby. Why was she crying?”

“She fell out of the bed.”

I searched my brain for a script that would offer some context, but I came up dry. This ‘conversation’ appeared to be novel; or at least it was new to me.

“Who fell out of the bed, honey?” I asked.

“The girl did.”

“Oh, yes. I see. Who is the girl honey? What’s her name?”

I looked around the festival grounds, wondering if I might be missing something right in front of me.

“She.”

“Ah, yes, of course. She.”

We sat quietly for a moment. I closed my eyes and kissed the top of her head lightly. If only I could crawl inside there.

“She was crying,” she said again, perhaps hoping this time I might understand. “And she fell out of the bed.”

For the life of me I didn’t know what response she was looking for.

I pressed on.

“Was she crying so hard that she fell out of the bed, honey? Or did she START to cry BECAUSE she fell out of the bed?”

I knew I’d used too many words. I knew the concept was confusing. But to my delight, she answered anyway.

“She cried so hard that she fell out of the bed.”

A glimmer of hope!

“Oh! OK. So WHY was she crying so hard, honey?” I asked. “What MADE her cry?”

“BECAUSE she fell out of the bed.”

Painted into yet another corner, I sighed quietly and nuzzled my nose into her hair. I wrapped my arms around her and gently squeezed.

“Well, I hope she’ll be all right, sweetheart,” I said wistfully. “I hope she’ll be all right.”

**

setting the pace

**

Luau talks a lot about pacing in running. That’s because he talks a LOT about running in general, but I digress. In his world, the art of energy conservation is vital in order to be able to, in runner’s parlance, ‘put the hammer down’ at the end of a race. In long runs, if you start too fast out of the gate, you may well be hitting a brick wall of frozen quads somewhere around mile 18. Just ask him about Manchester some time.

**

On Saturday night, I went out on a date with my husband. It wasn’t a particularly glamorous date, but it was a date nonetheless. It was time alone – off the clock, so to speak. We bought tickets online to a mindless, big budget, beautiful people, shoot-em up, see the twist coming from a mile away but couldn’t care less kind of movie. I wanted to go – at least in concept.

As soon as Julie arrived, I tagged out. I was spent. It had been a long day in a long week in an even longer month. I let my brain shut down. I followed my feet as they plodded heavily up the stairs. I knew exactly where they’d take me.

They weren’t headed toward the shower where I really needed to go to freshen up. They weren’t headed to the closet to pick out something to wear to go out. They weren’t headed toward anything even remotely productive. But they were headed where I needed to go.

I walked straight to my bed, laid down, nuzzled my cheek into my soft pillow and instinctively curled into the fetal position.

Luau came up the stairs just a few minutes behind me. I heard him check the bathroom first, then the dressing room, then finally make his way into the bedroom where I was all but hiding.

‘Hey, babe,” he said. “you want to get into the shower now so you’re not racing around when it’s time to go?’ A perfectly reasonable question.

I thought of the phrase that Brooke used for a while when she didn’t want to do something – “I’m doing what I’m doing.”

I shook my head as well as one can when it’s nuzzled into a pillow. “Nope. I want to do THIS. I know I should shower; but I need to do THIS. So if I can only pick one of those two options, THIS is what I’m picking.”

After some conversation about whether or not I still wanted to go out at all, Luau hopped into the shower in my stead. At least one of us would be fresh and smell good. Me? I needed – desperately needed – to lay there and do NOTHING, if only for twenty-five minutes. So I did.

As he got out of the shower, I got dressed. I didn’t manage to change my jeans, but I did unroll the cuffs and slip into a pair of decidedly grown-up heels. I added some dangly earrings to the mix, changed my shirt and sprayed a shot of perfume on my neck. I looked quickly in the mirror and willed myself to be satisfied with what I saw. If we left in five minutes we’d only be ten behind schedule. These days I call that a win.

I went downstairs to say goodbye to the girls.

Brooke looked up at me with big, dewy eyes. She was exhausted. As much as we had all had a rough week, it had come nowhere close to what she had been through. “I don’t WANT you to go,” she said, the sentence cresting on the WANT with an emphatic lilt.

I nearly lost my conviction. I looked at my girl – my brave, struggling girl – and all I could think was, “She needs me. What business do I have walking away when she needs me?”

I glanced at Julie. Julie, who knows my kids as well as anyone. Julie, who can handle anything we throw at her. Julie, who I knew damn well would take perfectly good care of them.

My baby girl was still looking up at me, her face and hands covered in pizza grease. I knew Julie would give her a shower after we left. And let her play in the water as long as she wanted. And that she’d be happy as a clam splashing around and lining up her Yo Gabba Gabba bath toys on the wall.

But still I struggled to move.

She needs me.

Something started to shift as I reached out with my hand and cupped her greasy little chin. Someone grabbed my internal microphone, tapped it for sound and began to speak.

BOTH of my girls need me. They need me to be rested. And calm. And happy. And patient. They need me to show them by my example that they should matter to themselves – that someday they can and SHOULD value time for themselves – as wives, as mothers, as women. They need me to find ways to recharge. To breathe. To nurture my marriage. To unwind the knots and tangles that threaten my sanity. They need me to be healthy. To be around to care for them for as long as I possibly can.

Yes, they NEED me.

I kissed and hugged both of my girls and walked out the door.

I spent the next couple of hours in a darkened movie theater holding the hand of the man that I love and letting myself breathe.

I’m setting the pace.

Because they need me.

How about you? What are you doing for YOU?

act now!

*

*

Missing old behaviors?

Pining away for every script your child ever perseverated on for hours on end?

Sick to death of all that pesky PROGRESS?

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Never again will you ask yourself, ‘How in the world can I get my little Johnny to stomp his feet and shriek loudly enough to break the windows?’.

With our patented two-step process* (plus added bonus steps for ULTRA performance!), you will be well on your way to reviving the very best that regression has to offer. Scripting, yelling, stomping, shouting, crying, hooting, fits of decontextual laughter AND tears and even – get this! – AT TIMES A COMPLETE AND TOTAL LACK OF LANGUAGE – will no longer be things of the past.

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We here at Diary know that money is scarce these days so FOR A SHORT TIME ONLY we are offering the secrets of this groundbreaking patented two-step process* for the low, low price of YOUR BLOOD, SWEAT AND TEARS!

That’s right folks, ACT NOW and you get ALL OF THIS REGRESSION for the ridiculously low price of HEARTBREAK. Can’t afford it all upfront? Fear not, my friends. You get to pay ALL THE WAY THROUGH the period of regression AND BEYOND! That’s right; we have an INSTALLMENT PLAN.

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*

* Step one – Take a week off from school for spring break.

* Step Two – Get a dog.

*

[Updated to add]

Editor’s note ~ After reading some of your initial comments, I am compelled to add the following …

I wrote this post on Saturday after something of a hellish morning. It made me laugh when I desperately needed to laugh.

Although it was a tough week, not all of it was dog related. A week off from school and out of the routine is always difficult for Brooke. A week off with a new dog, a stressed out mom and a sister with a nagging cough is REALLY difficult.

Brooke has made HUGE strides with Winston.

HUGE!

I will write about them soon.

But in the meantime, please understand that this was written from a moment in time and there’s a much bigger picture that surrounds it.

Thank you for your support!!

paddling like the devil

*

Always behave like a duck. Keep calm and unruffled on the surface but paddle like the devil underneath.

~ Jacob Braude

After meeting Winston, we took Miss A out to lunch with us. It had been a wonderful but stressful day, and Brooke was taxed. She was mostly quiet as we drove to the restaurant, happily ensconced in Brooke-land.

As we pulled up to the restaurant (yeah, I’m going to keep calling it a ‘restaurant’ because I refuse to admit that I took my kids to Taco Bell for lunch and you can’t make me), Brooke screamed.

“MY EYE!!!!”

I unbuckled my seat belt and turned around to see what had happened. Miss A confirmed that a bug or some other flying object had apparently come through Brooke’s open window and landed right in her eye.

Perfect.

As Luau stopped the car, I hopped out as fast as I could, unbuckled my crying girl and lifted her onto the sidewalk. I asked Luau to grab a bottle of water to try to flush out her eye.

As we walked into Taco Be – er – the restaurant - I took the girls straight into the ladies’ room. Brooke was still crying. She didn’t want to go to the bathroom, but I knew she had to. She continued to cry as she relieved herself.

As she finished up, I washed her eye one more time as gently as I could. She was understandably on edge. Scratch that, she was understandably well over the edge.

A baby cried out from the other side of the closed door. Brooke screamed in response. The day had just been too much.

Kneeling down next to her, I did what I could to calm her down. Her breathing finally slowed a bit. She sniffled in the last of the sobs. Home stretch.

Katie began to cry.

OK, seriously .. NOW? RIGHT now?

I looked over at her. I hadn’t said a word, but my frustration was obviously telegraphed on my face.

“Mama,” Katie said through tears, “I just feel like Brooke gets way more of your attention.”

Oh for God’s sake. Now? In the effing bathroom at a restaurant – er – um – oh, Hell, whatever, yeah, it was Taco Bell. I took my kids to Taco Bell. Sue me. But NOW? Here? How many times do we have to have this conversation? How many different ways can I say the SAME GOD DAMNED THING? I get it. I do. I feel for her. We talk about it. A lot. I write about it. I think about it constantly. I do everything I can to make it better. I spend as much time alone with her as I possibly can.

But I can’t do it ALL THE TIME.

I swallowed the words that were threatening to escape. I found others.

“Yes, Katie. Sometimes she does. Even a lot of times. And sure as heck at times like this.”

She sniffled dramatically. Brooke let out a shriek.

“She’s scared, Katie. And confused. She’s had a long, hard day to begin with and now we’re in a place that’s difficult for her at best. Her eye hurts and she has no idea what the hell happened in the car ..”

“Mama!” Katie said, aghast. “You just said a bad word!”

“Yes, I did.”

“But ..”

I was struggling.

“Katie, this isn’t the time. We’re a team.” And I’m a broken record. “When one of us needs help, they get it. Brooke needs my help right now. And I’m going to give it to her.”

“Brooke,” I said, “I’m going to flush the toilet now.”

She pressed one ear into my thigh and dug the heel of her hand into the other.

We washed our hands and walked out together, both girls now sniffling and their mother feeling like a walking yard sale. As I walked to the counter to order, Miss A joined me. She leaned over and said the very last thing I would have expected to hear at that moment.

“You amaze me,” she said. “You stay so calm.”

Me?

Calm?

I nearly turned to look behind me.

She couldn’t be talking to me. I was NOT calm.

I’ve thought a lot about what Miss A said that day.

Of all the words in the English language, she’d chosen ‘calm’.”

The more I chewed on them, the more pride I took in Miss A’s words. Three years ago, two years ago – hell, maybe last year – no one would have called me calm. These situations used to do me in.

Early in this journey I’d have gone straight down the rabbit hole in that bathroom. But over time I’ve retrained myself. Necessity has taught me to deny every natural instinct I have when my girl ramps up. I’ve learned the hard way that the worst possible thing that I can do when Brooke escalates is to follow her. I’ve no choice but to stay rooted firmly to the ground if I have any hope of helping her find her way back to it.

And so it is that we work in direct opposition to one another. As she ramps up, I slow down.

But as much as I felt good about Miss A’s words, they also made me realize why I am so profoundly tired. Not tired – TIRED. It all suddenly made sense … Why the tension percolates so close to the surface. Why I cry. Why I all but lose it when the noise finally goes quiet and I know the storm has passed. Why I sometimes need to get up and walk away. Why I don’t sleep. Why I write.

Because ‘calm’ takes WORK. When my baby’s scared, when she’s confused, when something is hurting her – every bit of my physiology is designed to respond. It is in my DNA. And I don’t. At least most of the time.

Paddling like the devil is tiring.

But it’s EXHAUSTING when it’s all under the surface.

normal

**

*

The following should be mandatory reading for every parent of every child in the nation.

http://roostercalls.blogspot.com/2010/04/walking-plank.html

Please read it.

Please leave a comment for G.

Let her know that we ALL walk that schoolyard with her boy, with her husband, with HER.

They MUST know that they are not alone in their pain.

**

Words leave damage in their wake.

Ignorance HURTS.

**

Please read it.

http://roostercalls.blogspot.com/2010/04/walking-plank.html

And then pass it on.

Because G is absolutely right.

This is all too normal.

winston

**

**

The Friday before last, Brooke’s former dance teacher, ‘A’ sent me a message. She asked if we were still looking for a Cavalier King Charles. She told me that a young woman had come to her mom with a one year old little Cavie. She was going to grad school, she said and she couldn’t bring him with her. She had asked A’s mom, Miss K to find a home for him.

I was confused. Why would someone randomly ask A’s mom to find a home for a dog? And why would it just happen to be the kind of dog we were looking for? A then told me that her family owns a pet center. They have a vet, a kennel and a pet supply store. At least the first question had a logical answer.

Miss K was tempted to keep him, but A convinced her to meet us. We spent a magical day at her house.

Winston is sweet and loving and gentle.

Brooke got closer to him than she has with any other dog. Katie fell in love. Luau fell in love. Even I was infatuated.

As we got into the car, Brooke said she wanted him to come live with us.

It was obvious, even to Miss K.

Winston is our Charlie.

**

“There are FIVE people in our family now,” Brooke declares as we walk home from school with Winston.

Luau and I picked him up two hours ago. This is the first time the girls are seeing him since we met for the first time four days before.

We are following the steps of a carefully orchestrated dance. I picked up the girls at school while Luau waited around the corner with Winston. Brooke’s beloved behaviorist will walk us home – be there to help guide us.

We met up down the street, away from the schoolyard where the excitement of the crowd would have been too much to handle. The six of us now move toward home in a somewhat awkward clump.

Katie takes the leash. She walks him like a proud peacock. Neighbors and teachers stop to chat as they pass. She beams.

Brooke collects dandelions as we walk. Not a single one escapes her notice. She fills her backpack. There must be forty of them in there.

Katie says, “Mama, does she know those are just weeds?”

I smile. “It’s all a matter of perspective, isn’t it Katie?”

**

Her nails dig into the soft flesh of my neck as she scrambles her way up my torso. Adrenaline has taken over, effectively eviscerating any hope of reason or logic getting through.

She’s terrified. It’s plain, simple and visceral.

She wraps her legs around my waist – anything to keep her feet off the floor. Every atom of her being is tense – ready for fight or flight.

“NOOOO WIIIINNNNNNSSSSSSTTTTTTONNNNNN NOOOOOOOOO!” she yells. “WINSTON! WINSTON! WINSTON! NOOOOOOOOO!” She has no idea that by yelling his name she’s actually calling him to her. Thank God he’s confused enough by this odd little person that he does nothing but stand stock still. But he’s on high alert. It’s an odd, awkward show-down.

Her feet have not touched the floor on the first floor of our house since he arrived. She has walked on furniture, jumped from chair to sofa and back and scrambled up the side of any human being big enough to hold her.

**

As we lie together in bed I ask her, “Brooke, what do you think about having Winston here?”

I know it’s abstract, but I don’t want to put words in her mouth. I need to find a way to hear it from her. Have we pushed her too far? Does she still want this? Can it work? For three days now it’s been hard.

HARD.

She answers quietly, “He loves us.”

“Yes, baby, I think he does. But what about you? Do you like having him here in our house – living with us?”

“Yup,” she answers softly.

“Brooke, do you want Winston to stay with us?”

“I do,” she says.

We lie together in the dark. I can hear her breathe and feel her little heart beat.

She adds one more thought.

“We love him too.”

**

Katie and Winston

April 2010

run luau run

***

***

You’ve prepared for this.

You’ve got this.

Know yourself.

Listen to your body.

Trust yourself.

Have faith.

We’re with you at every step.

Game on baby.

Run.

~ The note that Luau will read just before the starting gun of the 114th Boston Marathon this morning.

***

I don’t run. I’ve tried and failed to become a runner – for now. I’ll try again.

But it matters not.

I know a thing or two about endurance.

And persistence.

And exhaustion.

And will.

(And love.)

I sealed the note with an autism awareness pin. Because when I’m scraping the bottom – when I need to dig deep within myself and find a way to keep moving – I think of our little girl. I think of what she does EVERY SINGLE DAY.

If Brooke can make it through HER marathon, Luau can sure as hell make it through this one in three hours and twenty minutes.

You got this, babe.

Run Luau Run.

* The hat Katie will be wearing as she cheers Daddy in today

*****

***

**UPDATE**

Luau finished the marathon in 3:32:24. Unfortunately, he missed his goal of 3:20 (which would have qualified him for next year’s marathon) but he scorched the course, looked strong as he ran by Katie and me on Heartbreak Hill and did all of us (and hopefully himself!!) incredibly proud.

I ran beside him for two blocks – and truth be told I don’t know that I could have made it to three at his pace.

He rocked it.

You go babe!

* Katie actually IN the hat, cheering for the runners.

** Note to self .. must exact revenge on man selling plastic horns. Positively the worst $5 ever spent in the history of the modern world.

not today (hopeful parents)

.

.

.

I’m at Hopeful Parents today.

Well, sort of.

Come on by.

as if

**

My husband wrote a post on his running blog the other day called Act As If. The title came from the philosophy of famed Harvard Women’s basketball coach, Kathy Delaney-Smith. As Luau tells it, Delaney-Smith led her team to “one of the greatest upsets in college basketball history.” Apparently they are the only sixteenth-seeded team in NCAA history ever to beat a number one seed in the championship tournament.

.

Luau explains that Delaney-Smith preached a simple philosophy. She taught her athletes to ‘Act as if…’

.

To act as if they’re not tired.

.

To act as if they’re confident.

.

To act as if they’re not hurt.

.

As Luau heads into the Boston Marathon this coming Monday, he’s relying on the Act As If philosophy to reach his goal – a qualifying time under three hours and twenty minutes.

.

I’m not running the Boston Marathon. Hell, I’m not even running to the mailbox these days. But those words make sense to me.

.

I’m acting as if.

.

Acting as if I’m not scared to death.

.

Acting as if I trust my instincts.

.

Acting as if I know what the hell I’m doing.

.

Acting as if I am calm in the middle of the storm.

.

Acting as if I don’t need all the answers.

.

Acting as if I know we will be OK.

.

Acting as if my love is stronger than the demons that haunt my baby girl.

.

Acting as if that’s enough.