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31 for 21: Day 15: new

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Go:

“Please, please, please can we go on the kid rides now?” Zuzu pulls at my sleeve as I push the stroller down the crowded street. Lovey warned me not to mention the option of the festival rides before we actually decided if they were ready to try this new thing. This was the sixth time she had brought it up if it were the hundredth. I suggested that we split up and I take the two older girls over to the rides to see how much they cost. I grabbed two sheets of the tickets and we headed over.
 

As the ferris wheel turned in front of me I grinned up suggesting we all go on it together. “No.” came the uniform chorus in response as they both turned in opposite directions heading over to the ride they wanted. The Quail eyeing the carousel, Zuzu eyeing the balloon lift. I looked back to see if the others were close and couldn’t find them in the crowd behind me. Leaning down into the girls’ excited chatter I suggested said that we could ride one while we waited for the others and then we could see if they had more tickets for a second ride. When they settled in agreement to start with the balloon lift I reached over to tap the operator on his broad shoulder. “So- 6 tickets each- do parents have to pay as well?” A curt nod as he slowed the motor told me that if they were to go it would be without me for their first ever fair-ride. I started to suggest that we wait for Daddy to bring more tickets just as he opened the gate to release the over 36 inches tall group of independent boys and girls ahead of us. Zuzu grabbed the Quail’s arm and they sprinted through the gate as I noted that indeed the Quail met the height measurement to ride alone. Zuzu in all her big-sister-helper-gloriousness shoved at the Quail’s bottom trying to push up onto the too-high bench in the blue and white ballooned bucket. The Quail seeing the actual size of the ride up close kept herself squatted down close to the ground. As the operator came to shut their gate Zuzu scurried in and the Quail looking up at the tall shadow looming over her raised her arms obediently for the official boost.

The ride set to a slow spin and both girls grinned as Sugarplum, Daddy and Cyrena took their spot by the gate to wave and watch. As I took a sip of the beer they had brought over I noticed the operator looking back at us and then across the ride and back to his controls. He stopped the ride and sauntered over to where the girl’s bucket hung in mid-air. The Quail’s screams just reaching us as I realized he had stopped the ride due to the Quail’s protests. As she looked from him to us she clamped her mouth shut. Shook her head and signed more. Her communication- brief and clear. As was his- you scream- I stop the ride. She seemed to sink back and loosen her grip on the pole holding up the plastic balloon as he switched the motor back on. This time as her little hands tightened around the pole we tried to coach Zuzu who remained nonchalant over her sister’s quick terror, to please help her- put your arm around her, comfort her, hug her, something. As the Quail’s pitch hit the high crescendo Zuzu draped one arm on her shoulders, the operator turned to look at me and I just shrugged. A full minute later the buckets lowered back to a smooth circle rhythm and the Quail’s face flipped like a switch as she let herself be pulled out by me. Zuzu ever the adrenalin junkie headed over to a row of bounce houses with a Quail quick on her heals shouting now not in terror, but in affirmation. “Me. Bounce. Me. Ride.” as we sighed, shaking our heads , quickly following behind them.

Stop.

31 for 21: Day 14: talent

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Go:

“Momma- remember my talent show last year?”

“Which one?”

“The one at afterschool- where I did gymnastics and concentration.”

“Mmm-hm.”

“Well next year I’m going to do hula-hooping. I’m really good.”

“You are.  You’ve been practicing. That’ll be cool.”

“Well- next year the Quail will have to participate too. I was thinking about it and I think she should do talking.”

At that I stopped typing and looked up at Zuzu from my computer. “Talking? Why talking?”

Truly I was caught off guard by the suggestion that the Quail’s ability to talk was her talent. Both that it seemed a talent to her sister and the fact that we have spent the last three years absorbed by the lack of her ability and trying to rectify that. By definition- her talking is no talent.

“Because she has Down syndrome and she works hard to learn to talk like I learned to hula-hoop. You and Daddy practice with her every day. You and Daddy will have to come to the talent show and show everyone how she does her bite-bites. No one knows what bite-bites are. I told Makaylah about them when she asked why the Quail doesn’t talk. I told her she does talk but it’s hard for her and you have to know her like I do to understand her. I showed her how to know what the Quail is saying.”

Just as she leans down to zip up her new purple boots the Quail wanders into the office and wraps her sleepy arms around Zuzu, wiggling her head into her stomach as she squeezes her tight. “Come on- Quail- let’s go play school- I’m Ms. Dobson- you go get your backpack to hang by your cubby.”

“Kay.” The Quail lets go of her and runs over to give me a quick explanation signing as she presses the words out with intention from her soft round mouth, “Zuzu. Me. School. Play.”  

As I turn back to the computer, I hear them giggling through the hall back to their daily business at hand leaving me with a new perspective on what real talents live in our home and in these girls. These girls that get to take for granted their hard work and natural inclinations and each other. It’s easy to forget how much of your own beliefs and views your children naturally absorb each day and on the other hand, how much you can learn from them when you pause to listen.

Stop.

31 for 21: Day 13: full

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Zuzu was just about 12 months old the first time it happened. She stood in the carpeted hallway staring unhappily up at me as I answered her request for another cracker with a not right now. As she wasn’t going to stand for it, she oh-so delicately laid her small body down, ensuring not to bump or bruise herself and set to wailing and kicking after a quick glance in my direction. My lips turned up as I turned away to hide my laughter at her first tantrum.

Within a year it was not nearly so cute and the next year after that it was downright infuriating. These days when the fury bursts from her you can feel the floors shake as she stomps her twinkle-toes sneakers back into her bedroom.

But we knew it was normal development emotion-wise and set in for the duration. Like clockwork at her next half-year mark she would set into a new range of developmentally expected behaviors that would ease up as her birthday approached. Convenient isn’t it?  The sudden return to being a sunny little bout of sunshine just in time to ensure a good birthday gift or 12. Downright Darwinian.

Then along came the Quail. We had read and bore witness to a series of offhand comments about “those kids”. You know God’s angels, the sunny, happy-go-lucky carefree children who never get angry? The passive full of light and good cheer children who didn’t know any better than to just grin at you and passers-by? Even though she showed a full range of emotion, these images held enough water to make me think that perhaps the personality trait of cheerfulness itself resided on that 21st chromosome and that our Quail maybe did have a little bit extra. 

That is until about the age of eighteen months. When, one day, the Quail sat happily humming into a plastic microphone in the sun-filled living room. When in skipped Zuzu who also had a song on her lips. Zuzu donned her sweetest “Momma” voice and leaned in to pry the microphone from her sister’s hands. The Quail, she gripped that tiny pink cylinder of plastic firmly with one hand, placed her other little hand square in Zuzu’s face and hollered “STOP!”  Zuzu was crushed as we turned away to hide our giggles and mental high-fives at the Quail’s newfound feistiness.

Enter a year later. And yes, there has been all the typical naughtiness you expect from a pre-schooler, laced with just enough mischievous sparkle in her blue and Brushfield spotted eyes to keep any grown-up from disciplining her too sternly. And then one weekend, perfectly timed with just enough of a snot-filled nose to make us question the origin of her fury; also timed perfectly within a month of her turning 2 and a half; our cheerful little helper, one day out of the blue refuses to pick up her crayons. Not only refuses, she stomps her foot (which we silently applaud since up until the last few weeks her balance wasn’t sturdy enough for her to not topple over in the attempt) and then goes in for the kill. She kicks over the little yellow bucket of crayons she’s been directed to fill. Silence fills the room, as she waits for our response and we wonder briefly at the skill of the kick and the pile of colorful crayons spewed across the black rug. Then she gives her age-old gesture of discontent- a version of flipping us off with her arm and attempts to leave the scene of the crime. I return her to it, with low firm instructions, no longer humming our clean-up song. She plops down, fixes her glare on the rug and growls. This continues for another minute until I’m clear she isn’t going to clean up her mess and so off to time-out she goes as an angry wail fills the house. Finally, shuffling slowly back in, head hung low, bottom lip bird-perched out and her hand sorrying circles on her small heaving chest she bends to pick up first a yellow, than a purple crayon and drops them squarely back in the pail.

Typical pre-schooler right? Shouldn’t have been so surprising. Except we’ve been marveling for months at how much the Quail enjoys helping grown-ups clean-up and this seemed to blow in out of nowhere. Apparently someone forgot to inform her of her abundant cheer that her syndrome relies on. A series of similar versions of the story ensue over the weekend involving, animal puzzle pieces, Cheerios and far-flung cups of kefir. Enough so that by Monday afternoon Lovey declares she’s going to the pediatrician tomorrow. I agree, this behavior is unusual. We know one ear tube came out a month earlier and she’s had a cold for a week and we have entered cold and flu season without the start of last winter’s daily breathing medications. She probably needs to start up her pulmicort and maybe an antibiotic or two.

The next day Lovey calls me at work. “She’s fine.” She’s up to 30 lbs 15 ozs. Her lungs and ears are clear. It’s a cold. That’s all.”

We both sat calmly contemplating what this banal diagnosis really meant. It may very well have been our first visit to a pediatrician that was met with the response of nothing here to see folks.

What it meant was that our ordinary child, was not filled with that magical sparkle that would cheer her all the way through her angelic life. What it meant was that she was developing socially and emotionally on time.

What it meant was we couldn’t be prouder.

What it meant was that we needed to buy a second plastic microphone and keep the bucket of crayons up off the carpet.

Stop

31 for 21: Day 12: lonely

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Go:

“Momma- She wants me to come over. Here’s her phone number- call please- please can I go? We’re not doing anything- please, please, please?”

It’s not the first time. Although it is one of the first. Our family- we don’t separate well or often for recreation. But it’s starting. The calls, the emails and invitations to birthdays and playdates that are for only one of our children. Zuzu. And I understand it. I understand how it is hard to connect to a child who doesn’t easily speak. I understand that it is intimidating to think about inviting a child over to your house that is labeled as having special needs, and not their caregiver. I understand that sisters don’t share everything. I understand that people’s lives are busy. I know ours are.

And yet.

When we meet up with our pals at the zoo, or a park, at their house or ours, when we go out to eat, to a festival or shopping, these are the things that the Quail lights up over. She is up for it. She knows when plans are being made and her little hand rises to her chest in that plaintively voiced question,

“Me?”

She hesitates only briefly waiting for the answer she has come to expect from us in her four and a half years on this planet, “Yes Quail. Yes you can come.”  Before darting down the hall to dig her purple crocs out of her shoe box.

Last year when the question came regularly on early morning weekdays I was able to quell her concerns of being left behind by going over the schedule for the week while I faced her on bended knees. “Not today Quail. Today you go to Ms. Kip’s with Daddy for gymnastics. Tomorrow I’ll take you to Ms. Renee’s for school ok?” Her response a happy. “Kay” as she turns back to her Cheerios and raisins and resumes spooning more into her small, now-smiling mouth.

Then one weekend Zuzu was invited for her first sleepover. She spent the days leading up to it talking incessantly about what she needed to do to prepare, to pack, to be mentally and physically ready. The day of the sleepover her red ladybug sleeping bag and little overnight bag were packed and placed by the backdoor before the sun came up. The Quail, when she came to the kitchen saw it and ran to her room to grab a Dora backpack and quickly started shoving her jammies, her duck-duck lovies and a new pair of Elmo undies in it and raced back to place it by her sister’s. When I turned from the coffee maker and saw it there, a tear welled up knowing that this was going to be the first of a long string of conversations about why she couldn’t go along. Conversations that naturally happen with any group of siblings and friends, but conversations that ring with an extra tinge of sadness in my ears and heart as I wonder when she will have her own turn.

For now, though, we take it one activity at a time. As Zuzu packs up her pink purse to head over to her friend’s house for pizza and a movie Lovey pulls Clifford off of the bookshelf and invites the littles into his lap. When he is ready to run Zuzu to her friends, I move into the living room to ask if anyone wants to watch Barney. The cheers of the girls drown out the closing door and car engine starting up as I wipe my eyes and pick up the Netflix remote.

Stop.

31 for 21: Day 11: five minute friday: ordinary

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…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

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Go:

“Momma- Molly took a picture of the broken crackers on the pantry floor! Why would she do that? Shouldn’t we clean them up?”

…because the common is uncommonly beautiful. Because there is grace in the ordinary details of daily life. Because it is the moments between the moments you are waiting for where life is fully lived. Because our family’s true story lies in the detail of what is always around us that the busy work of life keeps us from noticing. Because when you don’t know what you can expect in life, the ability to do the simple task of eating has a profound effect on how you view the world around you. Because in the blink of an eye your world goes from neat, orderly and in control to being chaotic, out of control, messy and so incredibly full of love and wonder. Because when life threatens to take the ordinary out of your day you pause and weep with gratitude over all of life’s bounty from the precious life that you have been asked to protect to the food on your plate to the shelter over your head. Because sometimes your eyes and mind are so full of what you expect to see around you that it is impossible to pause and see what actually exists in your day. Because family, love and home are art and beauty in its most natural state. Because a single image, a grain of salt on your tongue, a smell from the frying pan in the kitchen can ground you in your day and lose you in your life all in the same moment. Because while that cracker broken on our pantry floor means we need to take the time to care for our home it also shows how very much we already do care for the ones we love, the home we live our lives in and the routines we have in our day. Because years from now when you all are all grown-up with a life separate from this one, you might find yourself racing through the grocery store to pick up milk and bread and soup and crackers with one crying baby in the cart-seat, one dawdling at your heels and one at home with a fever and you’ll lean down to grab the box of saltines off of the bottom shelf and be suddenly overwhelmed by the image on the box and find yourself thrown back into your childhood when you would spend Saturday afternoon snack time with kefir and crackers and freshly peeled clementines before racing out to the swing that hangs on the old oak tree; and you’ll wipe a tear from your eye before the baby swats the box out of your hand propelling you back into matters at hand. Because Molly is an artist whose gift allows us to take what is utterly mundane in the life we live and reflect the love, the light, the beauty in the ordinary, the seemingly  unimportant fractions of a second in the family’s life where their lives are actually lived. Because Momma didn’t see it laying their on the floor while I raced around to hide the broken down cardboard boxes, poopy wrapped up diapers and empty recyclable kefir bottles when Molly pulled into the driveway that afternoon….

…is what I will say when she is older and we can sit together over two steaming mugs of coffee.

Yes love- we should clean them up.

Stop

31 for 21: Day 10: patience

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Go:

“A-gry?” she flashes the sign as she speaks, swiftly reading the tone in my voice and the look that is passing over my tired, morning face. Only seconds earlier I had been joking with her as I helped her out of the yellow-flowered nightgown. I told her the purple pants were too big and she needed to make another choice. Her choice- shorts- on this crisp fall day. Indeed these striped shorts are smaller than the purple pants. But that wasn’t what I meant when I told her to choose again. My impatience grows in proportion to that bird perch of a lip jutting out in rejection of my criticism.  Now as the time to leave grows closer I realize we are no more ready for the day than we were 30 minutes earlier and my temper leaches out of me.

“Yes. Sorry, baby. Momma felt angry. I didn’t mean to raise my voice.” I apologize when life has again gotten the better of me and I snap. Just like I expect them to do the same.  Patience is the key to happiness in this home and family. Yet that key is often just as lost as my house and car keys. Sometimes we apologize because we have wronged another and sometimes it is because we are sorry for the other person’s trouble. How to be kind to one another is an ongoing practice for all of us, not just the children.  The fact that we have more to do than time to do it in a given day, week, month or season will completely and suddenly overwhelm me. The meta-list of to-do lists that pile up and clutter our countertops. Our good intentions re-prioritized on a daily basis. Yet, if we wait to catch up, to move on, we get stuck. These children they understand that our lives are busy. They revel in that most days. They expect it.

The sensitivity and adaptability they display gets me every time. Just as it angers me when they ignore and talk back to me. Each day there is both.  I’m equally delighted and surprised when they truly see what is happening and name it. That quick second of my feelings being heard, and coming from the child that the doctors and experts would all say is not capable, that second of my day- it makes me grateful. Grateful that instead of being wrapped up in the stereotypes and misnomer of who she might be, I get to bear witness to the reality of who she is actually becoming.

We hug and she runs to her room to grab yet another pair of purple pants. Today is her field trip with her class and she is so very excited to take the bus to the firehouse with her pals. Excited enough that she easily forgives me and pulls out another pair of purple pants and patiently waits for me to work the stretchy fabric over her heel.

The spot where she gets stuck each day. Where often we both get stuck.

She stands and places her small hands on my shoulder while balancing her tiny foot so I can pull up the legging for her. She helping me as I help her. Once they are up she leans down into my face softly chanting, “My momma.” and hugs my neck. Eager for just a bit more of love before heading out into the day I ask, “Kiss?” “Ki” she confirms smacking her lips on mine and turning to run top speed down the hall after Zuzu.

Stop

31 for 21: Day 9: corner view: before & after

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Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

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Go:

“Which book do you want to read?” I ask thumbing through the shelf of colorful children’s books in the girl’s room. The two older girls, used to the routine shout out approximations of titles as they push past me to grab the latest Junie B. Jones and seasonal antics of Clifford and George. The baby teeters on the edge of the bed railing, surely tempting fate as she grins at our far-from-soothing bedtime routine. Lovey comes in and we settle ourselves into the bed for a few minutes of minding our storytime manners. I hear of families that read for an hour or more to lull their loves into slumber and that is not us. Not our lot in life. As difficult as that may be to bear for a bookaholic and aging philosopher. These children barely sit still long enough to turn the page in a chapter book. To make it to the Good Nighting of the moon is the equivalent of a Kilimanjaro climb most nights.

When Zuzu was a wee nursling in my arms I tried to do what the “good parent” books prescribed. I would find a sleepy Sandra Boynton rhyme to read to her as she settled into my arms. Her tiny fists grabbed those board books and whipped them away from us before Little Pookie could tell us what was wrong. Later as I would settle her at a safe arms distance in front of me I’d let the swing rock her to the sound of my voice. As soon as she was old enough to make her protests understood she would take the book back from me and insist on “reading” it herself. Storytime at the library, one of my most treasured childhood memories was a flaming disaster. As other children were rapt with the Librarian’s multitude of voices, I chased Zuzu, angling my body so she could see the stern look on my face as I retaped the decorations back to the wall, alternating that sternness with apologetic glances to the other mothers. Eventually I gave in. It was too much and frankly wrecking my nerves right along with my happy childhood memories. So instead we went to the park, to gymnastics, to the bouncehouses and we let Zuzu be the one to “read” to her babydolls instead.

When the Quail came along though, it was a different story. Oh how she loved to be read to! Her small voice would answer with a tiny moo to Ms. Boynton’s question of what a cow says. Once the words on the page formed a pattern for Zuzu, she would take it upon herself to slowly work her way through pieces of our treasury letting the Quail fill in when she could.

Along came Sugarplum. Once you sat down on the floor, she would back herself into your lap and reach to turn the pages along with you. As long as you were reading only to her. Her protests of little No’s rising up over our rhyming as her sisters would now come running to the parent parked at eye level. Come bedtime,  she’s the first to dogpile her sisters as they line up their loveys and blankies for the night’s rest. “Storytime Manners” is the code word reminding everyone to pause. To listen. As one by one we share our part of the story. The read to becomes the reader. The baby becomes the school-age child. The childhood dream reshapes itself into the present day.

We try a little harder to pause a bit longer as the newly-minted seven-year old stumbles through a page of Junie B, holding out the picture to her sister  who in turn, press her hand to her own chest. “My turn.” Insists the Quail as her parents yawn and suggest only 2 more pages. The Quail practices her site words as they float up from the Boynton books. “Red hat. Green hat. Blue hat. Oops.” Her ‘s’ sound magnified in her effort to enunciate each sound she sees. The baby claps along with us in praise of her sister’s accomplishment before lunging over the side of the bed railing yet again, caught up by her ankle at the last possible second before we insist it is time to rest one last time.

Stop.

31 for 21: Day 8: will

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Go:

“Kk. Kk. Boo-K. Baby. Momma. Kk. Sssss.shhhh”

From the other side of the door I hear the Quail out in the hall running through her own version of speech practice by herself before the sun has even come up. Lately she is the first one up. You’ll hear her chattering, then a door open and she pads quietly around whispering her family’s names in the dark, looking to see who is up. Then she sits down and starts practicing sounds. Waiting. Knowing we’ll come out soon.

I roll over and switch off the alarm, squeezing past the sleeping baby wishing I had just stayed up after the 4:30 nursing session. The baby, she’s teething those cuspids and they are keeping more than just her awake despite our Motrin pre-attacks.

“Momma- my momma!” she cheers as I flip on the hall light, quickly shushing her.

“Baby sleep?” I nod and ask if she’s gone potty yet. She confidently tells me “Yeah” even as she looks away and I note the still closed bathroom door.  I settle on the carpet beside her and she climbs into my lap putting her two small hands up to my cheeks and leaning in close while she whispers with a barely contained puppy-like wiggle- “Momma, momma, my momma.”  We sit together her pleased, me exhausted while I weigh the pros and cons of the parenting books advice. Enjoy the moment or be consistent and send the rule-breaker back to bed for the next 15 minutes until the appointed 6am wake-up compromise.

Lovey enters the hall with us and asks if I’ve showered yet. I shake my head and start to rise.

“No.”

Her tone is sharp. We go through versions of this tug-of-will daily now. What we have to do each day goes in to battle with each of our strong-minded children’s sense of free will. “Come on- it’s time for bite-bites. Go with Daddy. Momma did them last night. If you hurry I can get your toys out for you.”

“No. Play! Donuts!” She stands up stomping her feet ready to plant herself separate from us.

This is what we’ve worked for. What she’s worked for. The ability to tell us what she thinks. When she thinks it.

Most days she resists initially. She’s busy. She has sisters to boss. Kitchenware to cook with. Books to read and babydolls to shush. Eventually she sits down, enjoying the chewing motion on the pliable colored tools that have built her strength and confidence daily for years now. She blows into the whistle saying with her hands what she whispers, “Down” and the tone comes out low. “Loud!” as she grins and blows as hard as she can for the next round. I finish my shower and come back out to wake her sister and notice her flopping down. It’s going to be one of those days. One of those days where her will wins out over ours. And then we’ll try again the next day. Before the sun comes up, hopefully after 6am.

Stop.

31 for 21: Day 7: perspective

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Go:

She giggles as she steps out from the corner, newly able to make her way quietly on tip-toe up to her Dad who stands at the Keurig making a morning dose of energy. She looks back at me crouched in the hall urging her forward. I reach my hands out miming a tickle and she covers her smile with her small hand before rounding the wooden kitchen table at top speed and colliding into his knees.

“BOOO!” she shouts and he mocks a big startle as she collapses in a fit of laughter at his feet.

Ever since she was little she’s been locking eyes with the joke that is to be had. From pretending to drink the tubby water from the small plastic rainbow of dolphin she herds each evening, to reaching slyly into the therapists bag to remove the game she hopes to hide from them before they look for it, to bird-perching her bottom lip out when she catches the sympathetic eye of the daycare worker before running through the sand out of reach from them.

She gets it. She really does. I forget that and I know her. I underestimate her ability to understand what goes on around her and truly and meaningfully be a part of it 100 times a day if I do it once. That’s what happens when people tell you who your child will be before you’ve even had the opportunity to get to know them. She amazes me and her family and her friends and her therapists and her teachers regularly these days by how much she knows that we haven’t already explained to her. This thing called Down syndrome- it isn’t what the experts thought and have tried to explain. It isn’t what I expected. It isn’t what holds her back.

My understanding of it, the understanding of all of us around her- this is what holds her back. Our expectations. Our lack of understanding, our preconceived notions and our prejudices.

Fortunately, from her perspective, that’s ok- she’ll let us try again.

Later that evening as we are sitting down at the kitchen table to dinner, her dad reaches behind him to turn on Pandora and her giggle rises up quietly at first. “Daddy- Look!” she points to a far point in the corner of the room.  He grins as she starts up the game he has taught each of our girls, and dutifully turns his head away from her small body to the direction she is pointing while imperceptibly leaning his cheek a little closer to her. She throws her arms around his neck and smooches his cheek loudly while he startles again. She sits back satisfied. “Heyyyy- you tricked me!!!” he cheerfully bellows as we all crack up.

She tricked him.

He didn’t see it coming.

None of us did.

Stop.

31 for 21: Day 6: me

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Go:

“Me?” The sweet rise at the end of the question mirrors the tilt in her head and the smile that runs from her bow of a mouth up into the twinkling blue of her eyes.

“Yes you. You can come.” At the end of those five little words that she’s come to expect in response to her requests she lets out a whoop, pumps the air with both fists and dances down the hallway to grab her purple crocs out of her shoe-box. My mother loves to tell that story.  While they were visiting this summer and we were making our plans for the day this little exchange between us tumbled out and the course of it brought my own mother’s hand up to her heart in reflection. Her newly animated ability to ask this little word with such emotion over the smallest detail in our day that I’ve told her to expect and made sure she knew she was included in. It means as much to us as it obviously does to her judging from her response. From her ability to ask it in the first place after months of apraxia skill kit work on the blue plastic square that brought the “m” sound out of her to us, to the countless hours of work with various therapists, teachers and students to help her understand variations on first this, than that. Daily hand over hand prompts and reminders and practices of what to do next until one day she flies in the kitchen and is able all on her own to ask a question that she wants answered, when she wants it answered. Because she knows. She asks in such a way that you can’t help but grin back and make promises.  And my mind and heart and eyes ever so briefly fill with worry that she has felt the questions, the odd looks, the whispers that trail her when we go out.

That worry, that worry though is all me.

It’s not hers.

Not for now at least.

Whether that’s because of the difference in our age or our experience I hope I never come to know. I hope it stays quietly mine. Not hers. I hope that when her eyes fill with delight at what lies in front of her that the answer to her request will always be “Yes.” And when it can’t be yes. I hope there is a reason for it. A reason that isn’t, “Because she has Down syndrome she can’t….”

The feeling between us in that one word as her hand rises with the question of  me to her chest in an unconscious homage to the early necessity of sign language, is matched by the feeling that fills my heart and head as I bend down to acquiesce to her requests again and again. As I bend down I’m met with arms around my neck, hugging me so tightly, reminding me how much she wants in this world and that I was put here to clear that path for her so that she can go on her very own way.

Stop.