buying the pony

*

You know that little kid who walks through a store and says, “Oooh! Oooh! Mama, can we buy this? Oooh! Oooh! Mama, can I have this? Oooh! Oooh! Mama, I neeeeeeeed this!”?

That kid was never mine. Well, maybe ONE of those kids was mine, but not the other.

While I was never quite sure if Brooke understood the concept of shopping, even if she did, she didn’t have the language to ask for anything. And so, for many years, I had a child who simply didn’t ask.

Now, just shy of seven, my girl is getting the hang of it. The words are exploding. The sentences are flowing. The syntax is coming together. And she knows damn well that her Mama will turn into a big, steaming ball of spineless mush when she asks for something.

All those years of trying to guess what she wanted – of trying to sort through the clues and gauge reactions and hope that maybe, just maybe, she’d actually like something – all add up to a big pile of  ’Oh, sure baby, you want the pony? Of course, let’s go get you fitted for a saddle.”

Judge me if you will. Tell me I should be stronger. Go ahead. I dare you.

You do it.

You say no.

Let’s practice, shall we?

*

*

Yeah, I thought so. The hay is in aisle three.

why

*

We had a meeting at the house last night. A group of parents gathered in our den to talk about our children – to compare notes on their progress in school, to discuss services and strategies and to support one another in our efforts to advocate for our kids.

There was solidarity. There were tears. There so often are tears. There was anger. There was fear. There was understanding. There was frustration.

I was spent long before the meeting ended.

I walked away. I wandered from the den to the office and fussed with something on the desk. I ambled into the kitchen and rinsed a glass that didn’t need rinsing.

It’s so often the same faces at these meetings. The same people who take up the mantle and fight to make things right. They look tired. We’re all tired.

As the last parent left, I trudged up the stairs. My feet were heavy on the steps.

I need to learn to say no. No, I can’t host that meeting. No, I can’t write that letter. No, I can’t speak in front of the school that night. No, I can’t run that panel.

No, I can’t.

Why can’t I say no? It’s just one syllable. “No.” Seems easy enough.

Why can’t I say it?

This week had taken its toll. I was near tears. I couldn’t fathom that it was only Wednesday.

Why do I keep doing this? Why do I keep writing calling organizing hosting finessing praying checking hoping pushing (and pushing and pushing and pushing)?

Why?

I opened Brooke’s door. She opened her eyes ever so slightly as the un-oiled hinge announced my arrival. The room was bathed in the silvery grey haze from the light spilling in from the hallway. A gentle smile spread across her face as I padded quietly over to the bed.

I bent to her and put my cheek on hers. “Mama loves you, baby,” I whispered softly.

“Mama loves you too,” she whispered back. I smoothed her covers and tucked her favorite blanket under her chin.

I stayed longer than I should have. I knelt by the side of her bed and watched her sleep – her little chest moving up and down as her lungs did their work. I was mesmerized by the rhythm of sleep.

I stroked her hair gently, hoping not to break the spell.

I stood up slowly, quietly. I looked down at my baby girl, curled into a tangle of blankets, her slender little fingers wrapped around Prairie Dawn. Dead asleep, she was still smiling.

That’s why, I thought.

That’s why.

dance class – part one of a whole bunch

*

Movement never lies. It is a barometer telling the state of the soul’s weather to all who can read it.

~ Martha Graham

*

I’ve had a lot of false starts lately. My intentions have been good, but my time, energy and attention span have been flagging. Thus my draft box is full with the detritus of half-formed thoughts, meticulously crafted first paragraphs and single-line story reminders that have yet to be fleshed out.

I paged through them this morning – turning them over and inspecting them like bits and pieces of sea glass. Some were junk – dusty and opaque – so I threw them back into the water. Some were jagged shards that I couldn’t pick up without slicing into my flesh. I left them where they were, trusting that time would soften and round their edges.

One – just one – was clear and bright and precious as any gem – a group of pictures of my girl at her dance class. This should be an easy one, I thought. The pictures will speak for themselves. But then I remembered how much there is to tell you about the dance studio. And that’s when the run-on sentences started.

Because I just can’t show you the pictures without telling you about my conversation with the director of the dance academy. No, I have to tell you that when I told her that I’d heard that they had been very welcoming to a friend’s son with special needs she’d said, ‘Of course. ALL children should have the opportunity to dance.” And I have to tell you that when I told her that we’d been searching for a place for Brooke to dance after the last experience ended in heartache she’d said – without a moment’s hesitation – “What if we bring in a second teacher to work with her as an aide? Do you think that would work?” And I have to tell you how I’d barely had words for her generosity.

And I have to tell you how happy my little girl has been to put on her leotard and tights – just like a ballerina - and dance. Actually, I won’t have to tell you that part. I’m guessing you’ll see for yourself.

*

*

*

*

*

*

*

*

*

None of those moves above were actually related to anything the rest of the class was doing. Luau had warned me when I went in that ‘it may be a little tough to watch.’ He’d told me that she ‘tends to just kind of do her own thing’ and that it didn’t seem to have much to do with what was going on in the rest of the room. He knows me. He knows I can have trouble watching my baby desperately out of step.

He was right, she did do her own thing. But for once it wasn’t tough to watch at all.

Brooke dances to a different beat. Sometimes literally. And watching her – arms akimbo and legs flying faster than my little phone camera could focus – was pure joy. The aide will start to rein her in a little bit now – to break down the choreography for her in hopes that she can follow along. But even if she doesn’t learn a single step, it will not have been for naught.

Sitting on the hardwood floor that night, trying desperately to capture the moment, I remembered why we’d pushed so hard to find a place for her to dance. And even in these grainy, out of focus pictures from my phone you can see it, can’t you? It’s like finding the perfect piece of sea glass, isn’t it?

Because when my girl dances, however it may be that she moves, she is HERSELF and she is FREE.

Thank you so much, C. For everything.

ed note ~ Thank you from the bottom of my heart for the incredible comments on yesterday’s post. Your love and support for me and my girl held me up yesterday and you carried me through a day that might have been unbearable otherwise. I was humbled by your words and grateful (as always) for your presence in our lives. A million times – thank you.

sometimes

*

My girl was teased yesterday.

That beautiful, loving little girl in the picture.

Teased is the wrong word really. She was manipulated by others for their amusement. A little girl who she thinks is a friend preyed upon her.

It could have been worse. Much worse. It wasn’t.

Though it never should have been allowed to happen, it was handled well when it did.

I don’t think Brooke had any understanding that she had been set up.

If she did, she didn’t show it.

But these things take time to process.

I called my dad. Forty-five years as a middle school principal offer a perspective I so often need these days. I knew what he’d say. I still needed to hear it.

As soon as I heard his voice, I was done for.

“Jessie, are you OK?”

I pulled over. I sat in the car and cried as the hard rain hammered the roof and drenched the windshield. It seemed fitting.

“It’s the reminder of her vulnerability that hurts the most, Dad.”

“I know,” he said. “I know.”

By the time I finally pulled into the garage, I was spent.

My sweet baby girl ran down the stairs as I came in the house.

Her hair was wet from the shower. She wore her favorite pajamas – the top now two sizes too small. I don’t have the heart to make her retire it yet.

She came to me, so I dropped to the floor and sat down with her right in front of the door.

We looked at each other for a moment – wordless. She searched my face. I searched hers.

“What are you sorry that you did that?” she asked. Her little brow was furrowed into her patented expression for sad or sorry.

I didn’t answer right away.

I knew exactly what she was asking. It’s become a painful script. But there was so much more that I was sorry for.

“About the ballet slippers,” she said. “What are you sorry that you did that about the ballet slippers?”

“I’m sorry that I yelled that day, baby,” I said for the God knows how many-eth time. “I’m sorry that I didn’t understand.”

“You’re sorry that you yelled at me,” she said as she crawled into my lap. “About my ballet slippers. And then I had the white water.”

Four years. It’s been four years since the day that she couldn’t find her ballet slippers. It’s been four years since I yelled because I didn’t understand. Because I didn’t know. Four YEARS.

Will she look at me in four more years and say, “Mama, were those girls making fun of me? Do you think they’re sorry?”

I think of the dinner with my friend John last year when he told me that he felt like Charlie in Flowers for Algernon. I want to scream.

The Inclusion Committee gets back to work next week. Our first order of business for the New Year is planning a panel discussion on how to talk to our children about respecting differences.

Please don’t tell me it’s pointless. Please don’t tell me it’s a drop of water in the ocean. I get it. I do. I’m not naïve.

People will always prey on the weak; it’s human nature. But so too is it in our nature to protect our young. And this Mama has to DO something. I may very well explode if I don’t.

I love this little girl with a ferocity and a tenderness that can only coexist inside a mother’s heart. At moments like this the contradiction leaves me spinning inward, folding in on myself. If I’m not careful I can get lost in the vortex. I have to DO something.

I glanced in the mirror as I washed up before bed. The woman looking back at me looked exhausted. She had mascara streaked down her cheeks and dark circles under her eyes. She looked like she’d been through the wringer. I’ve seen women who have looked like that. I have felt sorry for them.

I tried to give her a reassuring look, but it fell flat.

“It’s OK,” I thought.”Sometimes it’s just too much.”

I crawled into bed, buried myself in the covers and went to sleep before doing anything on the list of things I needed to do before bed.

Yes, sometimes – just sometimes – it’s just too much.

i'm tyler

 

Hey there, gorgeous. It’s good to see you.

Come on in. Get comfortable. This will take a few minutes. Eleven actually. Eleven minutes. So relax, won’t you? Go grab your coffee. On second though, don’t bother. You won’t need it.

I’d like to ask you to watch a video. All eleven minutes of it.

The video features a delightful young man named Tyler. And Tyler has something to say.

It may take him a little extra time to get the words out. Please be patient. Let him slow you down a bit. It’s worth it. I promise. But don’t take my word for it. Let Tyler tell you himself.

Click here to view the video.

thank you to my friend Carrie B for this incredible gift!

ramps, research and facebook status

*

MY wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure, but ACCEPTANCE……..93% of people won’t copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour! They do not want to be “fixed” they want to participate in the world to the best of THEIR ability!

~ The status on a number of my friends’ Facebook profiles this week

*

Tap

Tap

Tap

Excuse me, folks?

Is this thing on?

I … um … may I have … um … excuse me – you in the back, may I have your attention for just a second please?

Folks, I really, really appreciate what you’re trying to do. Really, I do. I don’t doubt that your intentions are pure and that down to the very soles of your feet you mean well by cutting and pasting this into your status. And I really, really don’t want to be that oversensitive shrew who shows up and makes everybody feel like crap about trying to do some good in the world. I swear, I don’t. But I have to be honest, this stuff scares me. As innocuous as it may seem, I think it’s irresponsible at best and downright dangerous at worst.

With all due respect, how on God’s green earth do you know what ‘children with disabilities” want? Have you asked them? ALL of them?

Disabilities are a broad category, folks. When we say disability, what are we throwing in there? Dyslexia? Non verbal learning disorder? Blindness? Deafness? Autism? Cerebral Palsy? Friedreich’s Ataxia? Epilepsy? Mitochondrial Disease? Cystic Fibrosis? SMA?

I know an adult or a child with every one of them, and well – many of them have made it pretty clear that they’d love to be ‘fixed.’ Getting out of a wheelchair? Living past their life expectancy of 26? Swallowing their own saliva without suction? Um, yeah, a cure would be just fine, thanks.

Now I’m not claiming that everyone wants a cure. I can’t speak for everyone which is precisely what I’m hoping we can all take away from this little exercise. The community that I know best – the autism community – is fiercely and in many cases bitterly divided by this concept.

To dramatically over-simplify the debate for those of you in the cheap seats – some fight for a cure for the often crippling challenges of autism while others believe that it is an integral part of who they (or their children) are and that the ‘real fight’ should be to win understanding and acceptance from the community at large. I know someone will get upset with my broad strokes on this, but if I delve much deeper this will no longer be a post; it will be a book, so please save the hate mail.

I have come to rest smack in the middle ground. Over time I have come to a place where I believe that autism is indeed an integral part of who my daughter is. I can no longer wrap my brain around the idea of surgically extracting it from her being without taking away some of the very essence of who she is. At the same time I work constantly to mitigate her challenges and as you well know, it kills me to see her struggle. If given the option of ‘curing’ her now, I have no idea what I would do. None.

But there are plenty of people in the community who know exactly what they would do. They would grab a cure with both hands and never look back. Most are parents who work day and night to find a cure for their children – many of whom struggle with the most basic of human functions. Many don’t speak. Many have no form of communication at all. Many are in constant peril as they wander off or bolt into traffic with no awareness of danger. Many are heartbreakingly vulnerable. How could I possibly make a judgement for them? How could I tell them what they want or don’t want? How could I possibly tell them what they should or should not fight for? And so, while I may not choose a cure for my child, I will stand by my brothers and sisters in the fight for their right to choose one for theirs. Our children deserve the choice.

In many cases, passion has given way to anger and anger to blindness. I’ve seen people say horrible things to one another in the heat of the moment. It’s easy to get swept up in the madness, but I’ll say it until I’m blue in the face – we can’t ask the world to exercise compassion to our kids if we can’t even manage to show it to those within our own community.

Oops, I’ve apparently gone off on a tangent here. Apologies. I’m back now. Shaking it off – back to the Facebook status problem.

When we start to spread the word that ‘children with disabilities are not looking for a cure’ we begin to make it OK to stop looking for one. Why the hell would we spend vast sums on research into answers that according to the status – nobody wants? If the kids with the disabilities don’t want a cure, why would anyone help to fund the studies that are searching for it? It’s a dangerous, dangerous road.

Acceptance – YES. Absolutely, positively. Acceptance is vital. I will never stop fighting for awareness, acceptance, understanding and compassion. My child needs them to survive in a world that is so often hostile to her very being. And whether or not she chooses someday to take a cure, others will certainly make the choice not to.

But working toward acceptance and cure do not have to be mutually exclusive. While we work to get a child out of a wheelchair, we must also work to make the world accessible to him while he’s in it. Ramps and research are equally necessary. Hell, some of the most important research might well be done by those who need a ramp to get into the lab.

So please, stop and think before you post a sweeping generalization. These are thorny, complicated, emotionally charged issues that just don’t lend themselves well to one size fits all pass it on to everyone you know status updates.

But thank you for doing it anyway. Thank you, because I know that you meant well and I love you for it.

*

mama’s here

.

.

sometimes it’s the smallest things

that jar my system

that bring me right back

to a different place and time

that fill my eyes

with recycled emotion

.

i run my fingers along the cover of the tattered book

i open it slowly, carefully

remembering

BEAR ON A BIKE / AS HAPPY AS CAN BE / WHERE ARE YOU GOING BEAR / PLEASE WAIT FOR ME

the old blue nursing chair

sat in the corner of brooke’s room back then

the soft blue chambray on its cushions

already worn and tired

I’M GOING TO A MARKET / WHERE FRUIT AND FLOWERS ARE SOLD / WHERE PEOPLE BUY FRESH ORANGES AND POTS OF MARIGOLD

every night i’d read to her under the soft light of her painted lamp

my heart aches with the memory

not with melancholy

nor nostalgia

no, i don’t really miss those days

at least not much

is that horrible to say?

but i don’t

those days of not knowing

of not understanding

of feeling helpless

all

the

time

brooke, what do you see? i’d ask, pointing at the page

she’d cry out

as though i’d poked her with a branding iron

her entire body tense

and rigid

i was so confused

isn’t this what parents do?

we engage our children in books, right?

we point, we ask, they tell us what they see

right?

right?

i’d point at the blue sky on the page –  she knew her colors

i knew she knew her colors

what color is the sky, baby?

she’d recoil again

i didn’t know what to do

i didn’t know why it was so hard

it’s just a god damned color

you know your colors

why is this so hard?

i’d come to the end the book

defeated

exhausted

if i’d pushed it – if i’d asked just one more question – she’d be in tears

i’d hold her, rock her, try to comfort her

between sobs, she would say, ‘it’s ok, mama’s here. mama’s here, it’s ok.’

yes, SHE would say it

the words she’d heard so many times

in her little lifetime

because they were all i had

all i could give her then

was my love and my presence

i was there

sometimes, it’s still all i have

.

all these years later, as i hold that book in my hands i can hear it

that tiny voice repeating my words over and over again

‘it’s ok, mama’s here. mama’s here, it’s ok.’

.

katie glances down to look at what i’m holding

‘oh, i love that book,’ she says

i muster a smile, but she sees the sadness

‘you ok, mama?’ she asks

i nod

she leans in closer and we read the last page together

BEAR ON A ROCKET SHIP / FLYING THROUGH THE NIGHT / WHEREVER YOU ARE GOING BEAR / GOODBYE / AND GOODNIGHT

.

i reach over to brooke

pull her into a too-tight hug

the kind she likes

and i say

mama’s here

lexicon

*

“Mama, Mama! Look what we got in school today!”

Katie was running toward me, cradling her prize. She held it out to me with both hands, breathlessly offering me a look at this object of wonder. Obviously, this was BIG.

“It’s a dictionary made just for students,” she said, eyes wide and expectant. “It’s FULL of WORDS!”

There’s no denying that my daughter comes by her love of language honestly. We spent a recent car trip in an animated discussion about etymology – the study of word origins and evolution – and how it can be used to decipher meaning. We talked about the common history of the romance languages and how if you know more than one, you can root out meanings in another. We talked about Greek and Latin. We had far too much fun as I gave her some examples and we puzzled through them together.

So it shouldn’t have come as a big surprise that Katie was holding onto her new student’s dictionary as though it were an original copy of the Declaration of Independence. In some ways, it is.

On Monday, she brought it along on our trip to the nail salon. She spent my entire manicure searching for new words. “Mama,” she’d say again and again, “give me another one. Make it one I don’t know. I want to learn something new!”

I wracked my brain for words she would find interesting. She loved DECIPHER. She got a big kick out of FORTITUDE. She struggled with how to use NUANCE in a sentence.

But it was LEXICON that was her favorite. First, it made her laugh that she had looked up a word that essentially meant ‘dictionary’ in the dictionary. But then we dug deeper. We talked about how each of us has our own lexicon – our very own list of words always at our disposal.

We continued the conversation as we got into the car to head home. We talked about the power that comes with expanding one’s lexicon. We talked about how a wider array of words gives you a far greater likelihood of being able to accurately communicate what you see (or hear or smell or feel or want or need) with others.

My voice cracked. I hoped she didn’t hear it. This was hitting home.

“Ok,” I said, shaking it off. “Purple. How many different shades of purple can we name?”

We did our best to think of gradations of purples – lavender, lilac, periwinkle, deep purple, royal purple, violet, magenta.

We must have spent ten minutes on purple.

I was grateful for the distraction.

I explained to Katie how much power there is in the ability to communicate in vivid, living color. There’s strength, capability and security in knowing that you can share with pinpoint accuracy what’s inside your head.

I flashed to a conversation I’d had with Brooke the day before. She’d walked into the bathroom while I was showering. She was clutching Ming Ming the Duckling and looking very serious.

“Ming Ming isn’t yellow anymore,” she’d said with a furrowed brow.

“Oh no,” I’d said, “what happened to her?”

“She’s all red.”

“How did that happen, Brooke?” I’d asked.

“She isn’t yellow anymore. She’s all red now.”

“How did she get red?”

“She’s bleeding,” she’d said – her face a cartoonish exaggeration of ‘sad’.

“She is? How did she get hurt?” I’d asked.

“She got all red.”

Circles. Round and round we go without the right words.

“What happened that made her bleed, honey?” I’d asked slowly, separating each word.

“BECAUSE,” she’d said, emphasizing the ‘because’ even though it wasn’t contextually appropriate, “she needs to go to the doctor.”

“Oh. So did she get a cut?” I’d ask, trying to help a bit.

“She did.”

“How did she get the cut, Brooke?”

“Because she isn’t yellow anymore.”

I chided myself for focusing on such a silly conversation. Of all the difficulty that she has communicating, why hone in on a nonsense interchange? So we go in circles; so what? We’re light years from where we were when her only means of social interaction was to come to us with the first half of a word and wait for us to finish it. We’re nearly unrecognizable from the days – not so long ago – when she’d ask us our names over and over and over, followed by ‘Are you a boy or a girl?’ again and again and again.

Yes, it was a silly conversation to get stuck on. But it still matters. Interaction matters to my girl. Words matter. And they don’t come easily. Understanding them, finding them, using them, stringing them together to make meaning – it’s HARD.

There is immense power in words. They have the power to create, to unite, to motivate. They have the power to soothe and to comfort. They have the power to forge and foster connection. They have the power to make us feel understood. Some even have the power to long outlive their speakers.

But sometimes, it’s their absence that is most powerful of all.

And the most heartbreaking.

welcome to the club revisited

.

.

I’m at Hopeful Parents today recounting the incredible journey of a letter that I wrote to a friend.

Stop by, won’t you?

an angel in the loo

*

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

I could write seventeen more posts about the trip to my dad’s – about Brooke and the dogs. About sadness and about feeling overwhelmed. About my tremendous pride in Katie and about my mixed feelings about asking so much of her. About the incredible swirl of love, strength, grace and humor that is my ninety year-old Grandma. About the profound relief of being in my father’s house. About the bittersweet release of allowing myself to feel small.

But I dare say I might come close to drowning in any one of them. So, in the interest of self-preservation, I’ve decided instead to share a story from our ride down to New York.

On Saturday afternoon, we met my mom and her husband for lunch at a restaurant near their home in Southern Connecticut. We arrived before they did and found the restaurant far more crowded than we would have liked.

As they set up our table, I took the girls to the ladies room. Brooke tensed up as we walked through the crowded dining room. She asked for her iPod, which I assured her she would get just as soon as we got back to the table.

The restaurant’s tile floors did nothing to dull the clang and clatter of plates and silverware, nor the chirping and chattering of diners enjoying one another’s company. The open kitchen only added to the level of chaos in the room.

By the time we got into the bathroom, Brooke was on high alert.

The three of us crowded into a stall together. As Katie relieved herself, Brooke’s hands shot up to her ears. “No flushing!” she yelled. She said it again and again. “No flushing! It won’t flush!”

I assured her that the toilet would not flush until we were ready for it to. I pointed to the manual flusher, explaining that this was not a toilet that ‘knew how to flush itself’. Katie promised her that she could leave the stall when we were all done and that she would stay behind to flush.

“No flushing,” Brooke said again and again as she took her turn on the toilet. She balanced on the edge of the seat, attempting to bury her ears in her arms. “It won’t flush,” she repeated.

As I took my turn, Brooke cowered in the corner as far as she could get from the toilet, her hands planted firmly over her ears. “It won’t flush,” she said for the twentieth odd time. “Katie will flush it LATER.”

As I was finishing up, I heard a voice from behind Brooke. It was coming from the other side of the wall dividing the stalls. “Excuse me,” said the voice, “I was about to flush. Would you like me to wait?”

I could have sworn it was the voice of an angel.

I answered that I’d really appreciate it if she could wait just a moment until I could scoot Brooke out of the stall. Standing where she was, she would have been terrified had another toilet flushed from right behind her head. I hadn’t even thought of it.

Once we were a safe distance from the stall, I called out to Katie and the woman and both toilets flushed. As we made our way to the sinks I stammered, “Thank you so much. I can’t tell you how much I appreciate your thoughtfulness.”

We spoke to each other in the mirror as we washed our hands. She looked to be in her late fifties. Her eyes were warm and kind. She explained that when her daughter was four, she’d gotten locked in a bathroom stall and was subsequently terrified of public restrooms. She may have gotten it from a different angle, but she got it. That was all that mattered.

It was all I could do not to hug her as we bid each other a good day and went our separate ways.

Once in a while, we cross paths with exactly the right person at exactly the right moment. Someone who extends a hand, or a smile, or an offer to wait to flush a damn toilet. I’ve come to see those people as everyday angels. And the more I’ve started to look, the more I’ve noticed that they are everywhere I turn.

Even in the bathroom.