31 for 21: Day 11

“She’s a beat behind is all. Really that’s all I saw.”

This news came about a year ago from a friend who was subbing for the Quail’s 4k class. I blinked when she told me that. A beat. A pause. A showing of her motor-planning getting the best of her for the moment.

“When it came time for snack and a drink her friends told me that her cup was in the fridge, but when I turned around to get it she was already there opening the door to help herself.” To help herself. She was in her class and helping herself. Following the routine that she knew from the days she had spent there already. When the children danced- she danced. When the children recited both The Pledge of Allegiance and the State of South Carolina Pledge, she put her hand to her heart and turned to the flags. When the children lined up- she lined up.

Or mostly so. She went to the back of the line giggling in an attempt to start a round of hide-and-seek in the classroom. When Mrs. D told us, we were as concerned as she was. Maybe more. A big part of public school is learning to follow the rules- the rules that keep things organized, fun and safe for everyone. This slight deviation from the organized chaos was really only a concern in the event of an emergency if the chaos were to become unorganized. We would have to talk to the Quail about this. She was already familiar with our family’s well-worn mantra, “There’s food time and there’s play time.” We would have to adapt it to there is “There is listen and line up time and there is play time.”

“I’m so glad you pushed against the school’s concerns.” This came in an email from the teacher after having been with the Quail for a good bit of the school year. “The Quail is very popular and has a lot of friends. She is nurturing and takes care of anyone who is sad or hurt. We love that about her.” “ She is doing very well in the classroom. I wish all of the children were doing as well as she is.” Those words let me breathe out. It’s one thing to be philosophically certain of your stance on an issue, such as say- inclusion. It’s another thing to stand back and watch it play out in real time as it wavers between validating and mocking your intent.

But it went well. Put simply- she did fine. I expected less than fine. I expected a bumpy transition. I expected multiple meetings and whispered warnings of this good thing coming to an end. I was prepared with the legalese in the recesses of my brain for any hint that it wasn’t going as it needed to. The Quail- she didn’t need to keep up- that beat, that pause…that was fine. She just had to make progress. That’s what the law requires, what the law allows for and as the previous principal had stated after much scolding and scuffling-in the well-orchestrated dance of an IEP, they will meet her needs individually and legally.

And so they did.

But they did more than that really. They met the Quail with open arms and hearts and brought her into their classroom, now her classroom into her community and welcomed and loved and taught her. She learned so very much last year. The progress- while subtle, was undeniable. Her happiness at getting to go was undeniable. She wanted to be there. She was happy to be there.

I really didn’t have much to say about the school year as it progressed. The weeks went by smoothly with very little back and forth in the adjustment to half days of school, bus rides, lunch ordering and learning to read. In the early spring, we did receive a phone call from the therapists, one day the OT, the next the PT. Both asking for adjustments to the IEP. The Quail- she did not want to leave her class to go with them. Once in the hall, she dallied. She danced. She did everything but walk in an orderly fashion from the class to the therapy room. That first call day she had plopped down on the floor. She wasn’t getting up. She wasn’t moving. And this was a problem. As the therapist detailed the specifics to Lovey over the phone it came out that it had been an issue for a while now, the Quail’s not wanting to leave her class and her friends to go with them. Some days worse than others. The IEP progress update that came home later that month indicated a lack of willingness to not only go to the other room, but to do the work asked of her once in it. Ironically her report card from the regular class had also come home and showed good marks in most everything except the ability to articulate a clear sentence. It seemed she was acing K4 and blowing Special Ed. Later when we met with Mrs. D she talked about the day we had gotten the phone call. That the therapist had been expected 20 minutes earlier and hadn’t shown. That when she did come, the Quail had already had her coat buttoned and was in line, in clear view of the playground- ready for recess. That was what had made her angry. That is why she had plopped down. That was also why therapy is so important- maybe, just maybe if she had been able to articulate what was upsetting her- maybe, it wouldn’t have just come across as bad behavior. Maybe. I don’t really know. The irony is that 2 of the 3 goals on the IEP- well they were playground friendly. The therapist could have worked on those on the playground rather than turning the hallway in to Thunderdome. The update to the IEP helped. They asked permission to move from individual to small group therapy. Once the Quail befriended the little girl, things went back to the typical chaotic calm.

We survived that week. I can’t say that things got tremendously better with the therapists. Notes on later progress reports seemed to center around “working on compliance”. Which I read as therapist speak to explain why little else was getting done. In spite of that nothing peaked or boiled over though. I ran into the district’s behavioral specialist at a gathering at one point and introduced myself. She told me she was aware of us, but fortunately hadn’t had the “pleasure” of being called in to formally meet the Quail. For that we were grateful. Nervously grateful.

In addition to the books, art projects, pictures, songs and dancing the class put on 3 little plays- a Thanksgiving Pilgrim and Indian one, a Christmas Gingerbread one and a Cowboy salute at their mini-graduation. I’m proud to report I cried my little heart out at each and every one. The Quail- her little star shown up on stage as she danced and sang and cheered and bowed. She was all in. And for that super start to her educational career- we remain grateful.

31 for 21: Day 7

 

10455052_10204108154283075_6634118503032178133_n“This is not apraxia. It is still a severe motor planning issue, but not apraxia. She has worked diligently and made tremendous progress in the last two years. If it was apraxia, she wouldn’t be able to talk as well as she does now.”

Lovey and I both heard her say it and it wasn’t what we were expecting. It had been two and a half years since we last had been able to spend time with Sara Rosenfeld Johnson. When you see someone every day, sometimes the subtle changes are hard to recognize. On the drive up to the appointment the Quail had napped in the backseat while we debated how much change had actually occurred since our last visit. Lovey and I had different ideas of how much had changed. Certainly, there were more words the Quail could approximate now. Absolutely we heard examples of two word phrases from her and at times even more when she tacked a name or angry no to what she wanted. But at 5 years old, she still didn’t have the capacity to tell us everything she felt the need to, and for her- that was an incredibly frustrating process.

“No shirt. NOOOOO!”

A version of that phrase was a common morning routine. The Quail, she knows what she wants to wear. And this summer that consisted of what she called her “Frozen” or “Camp High-Five” shirt. The thing is, there are seven days in the week and that is only two shirts. Two shirts that after a single wearing would morph from white to sand and red clay colored with an outline of her lunch of dinosaur noodles with red sauce, the remnants of the purple or brown marker she had used to draw with, the dripped pattern of the purple popsicle, frosted cupcake or juice she had enjoyed during an afternoon snack. In other words, she was limited to a single wearing a week because her parents couldn’t find a few free weeknight hours to spray, rub, soak and wash her beloved shirts back to their original (or something closely approximating) shade of white. That meant 5 days a week of early morning, tired, hungry and grumpy negotiations about what she was to wear that day. Fortunately Zuzu eventually gave up her Camp High-Five shirt to the cause and another family friend had a spare and donated it as well. And yes. All three of those shirts would get worn each and every week. Her sister’s Frozen shirt- well that was off limits. But we all have our limits.

“You wore Camp High-Five on Monday Quail. It’s dirty remember? You had Dinosaurs for lunch that day and it was hot outside. It’s coated in sand and sauce. You can wear it next week.”

Leaning down, I reopen the dresser drawer that the Quail has just slammed shut in frustration. Quickly pulling my fingers back as she reaches to push it closed again I see her face twist in anger.

“Are you angry honey?”

“Ye-ah” Her face crumples as she sits criss-cross applesauce in front of the dresser. What she wears should be her choice. And for the most part it is. Zuzu runs over and pulls her own Frozen shirt from her drawer and the site of it stirs the Quail’s cooling anger again. “NO Zuzu! No! My Frozen. Mine!” Her little hand curls into her chest as she pushes herself up from the ground about to launch her small but stout self after her twiggy sister who dances just out of reach from her. Zuzu opens her mouth to tattle that the Quail is being mean even though I’m sitting there witnessing it in real time. I intervene, suggesting Zuzu dress in the bathroom and push aside the dozen shirts that continue to go unworn in the months since they were last washed. “How about this one. You like purple- it has purple stripes.”

“NO MOMMA. NO. Dah-rk puu-ple.”

Ah- dark purple- this I can do. Lifting up the tangled mass of patterned and striped yellow, red, blue, pink and white shirts I find one of two dark purple shirts that she favors at the bottom of the drawer. “This one?”

“YES!!!!” She squeals leaning in to do a little dance of happiness as her small soft hands unfurl to clasp my cheeks and she presses her nose to mine. Yes. That shirt, the dark purple one is the one she wanted to wear. The one that until recently she couldn’t articulate the difference between it and a dozen others in a clear enough speech pattern for me to get it right on the first or the forty-first try. Softly inhaling her morning breath , I smile and pull her down into my lap to help her get the shirt on before moving on to the pants. And the socks. And the shoes. And the hairclip. The things that I know matter to her but that she has to work so very hard to make understood. It’s these little basic, ordinary, everyday choices that we all make without a second thought that urge Lovey and I on to work and work and work on her speech. It’s not because we think she isn’t whole. It’s not because we think she isn’t perfect the way she is. It is not because we think if she doesn’t walk and talk and act like the mainstream she doesn’t deserve her place in it.

Not. At. All.

10409786_10204107563068295_6007311068266698776_nIt’s completely the opposite. Once upon a time, a child with a label of Down syndrome (or a thousand other special needs labels) would not be considered worth medical and educational care. They were seen as less than, incomplete, a mistake, someone not worth affording the opportunities to receive basic care that the rest of us can take for granted that we have a choice to either sign-up for or not. When my older sister was 6 years old she had yet to be able to walk. My mother, she asked her doctor to refer her to physical therapy so that they could learn the exercises that would strengthen her muscles and help them remain pliable so that she wouldn’t end up unable to move by unintentional neglect. But that doctor did what was common in that time. He said no. That it would do no good so he wasn’t going to waste everyone’s time, effort and money. At that time the only way to receive specialized care was to live in a specialized setting. An institution. Ironic isn’t it? In the year that she was seven, after having been at the institution and under the specialized care and therapies that the doctor had sworn would not benefit her she took her first steps.

10288718_10204108094241574_2089307072020858884_nThe Quail, she is still learning to talk. To put together the words that will tell the world who she is, what she knows, what she wants and how she feels in her own words and way. Because those things exist. Her thoughts, her preferences, her opinions they matter. She works hard each and every day to do what the rest of us are blessed to come by easily and take for granted. Our visit with Sara was a heart-warming one. One that said she has progressed and will most likely continue to progress. That the effort and love we put into helping her say the things that matter to her are worth the effort. That she is worth the effort. That just because it isn’t coming easily to her doesn’t mean that we should lower our expectations for her. It’s best to shoot for the moon as Mr. Peale says, even if we miss we’ll land among the stars.

Or in our case, the dark purple shirts and quiet mornings.

31 for 21: Day 4

“What is this?”

I’m emptying the Quail’s backpack out in our nightly papers-home-from-school de-cluttering routine. At the very bottom is a small bag of three large marble sized balls.

“They balls Momma.” Sugarplum explains as she stuffs her peanut butter and apple jelly sandwich into her sticky mouth.

“They’re a choking hazard.” I retort under my breath.

“NO! They MY choking hazard.” The two-year old declares as the Quail dances in to the kitchen as naked as the day is long. “NO! MINE!” she yells trying to grab them from me. Tucking them into my pocket I scold her back to her room for undies and jammies. “I said to go get your clothes Quail. Now.”

Now.

Now that the children outnumber us, our zone defense is our best attack. And by best I don’t mean effective. I mean some balls get dropped and hopefully those that might be choking hazards are quickly tucked away.

The Quail raises her overly therapized voice and with a hand pressed to her still tubby wet chest hollers at me, “No Momma! My ball. My prize. My star!!! Mine!!”   She worked hard for that little prize this week. She works hard every week. Hard enough that her small head drifts to her chest each night in the car ride home from our work and school daze.

The week before school started, we met with our new kindergarten teacher to talk about the Quail and learn what we could expect as well as foreshadow a bit of what they might see.

“These first couple of weeks will be hard for them as they learn the new routine. You can expect her to lose her star quite a bit. It helps if we are consistent with our expectations right from the start. But, don’t worry- it doesn’t mean she will have trouble all year long. She’ll learn the routine and what’s expected of her. All the children do.” Her teacher looked on to our worried faces as we nodded in understanding. This was what we wanted. What we have always wanted for the Quail. A typical classroom with typical expectations and challenges. For her to come to the same neighborhood school as her sister and sit with her friends and sing songs and learn her letters and numbers and what to expect during the day. And this is what we got. She surprised us, not surprisingly. By keeping to the classroom routine each day and earning her star for two plus weeks straight. Even helping out another little boy who was struggling with the routine and making a new friend or two. The second week, I opened her backpack to find a sweet markered picture labeled as her and her new friend Laurel, that showed them out on a sunny patch of grass standing side-by-side with hearts in the air. Her teacher told us how this little girl worked lovingly on the portrait all day coming back and forth from her table to tell her how she was making this special for the Quail. It was enough to fill my momma-heart and stop berating myself for all that I hadn’t accomplished that day.

And then, came week three. A bit of the newness obviously rubbing the shine off. A tired bird grumpy by the requirements to get herself out of the tall car each morning with her too large backpack and sister and friend urging her to keep up as they run to the cafeteria waiting to go to class. I’d been firm with the sisters that morning. I was frustrated by the drop-off line that wasn’t yet routine enough to not make me have to rush off to work without worried rearview mirror glances to make sure the trio actually entered the school building rather than loitering on the sidewalk. I was firm with my expectation that no matter how much Zuzu liked taking her sister directly to her classroom, it was important that the Quail learn to do it independently and not rely on Zuzu to get her there. Neither were happy with my expectations and both had been avoiding my eyes during my daily reiteration of the instructions that the Quail was to line up when the teacher called for the kindergarteners and if she didn’t go, Zuzu was to tell the teacher her sister needed to be in that line, rather than waiting and walking her to class herself. For two weeks, they had managed to give me vague replies about what happened once I drove off. I felt firm in my stance that teaching the Quail how to get to class needed to come from the school, both so they were aware of the issue and also to knock off one more mixed message that Zuzu was receiving whether to mother her sister or not.

That night when I opened the Quail’s boomerang folder, I saw that her star was gone and there was a long explanation detailing her stubborn responses to the routines she had been acing the weeks before. The next day more of the same. Her teacher had emailed providing more details surrounding this and expressing concern over the Quail’s new attitude that had been building. As we corresponded back and forth though, instead of feeling frustrated I felt so very appreciative of this new teacher who obviously had taken the time to get to know the Quail and all of her capacity. She told us about the Quail’s helpfulness to another student. How the Quail went from her square to her center to the therapists with few hitches. She told us how she has gotten to know the Quail’s body language. How when she is being stubborn, she looks down. When she is honestly confused and unsure of what to do she looks you in the eye and raises her arms to form a question. She told me that while the Quail does continue to get distracted by her interest in her classmates and what they are doing, they’ve found a way to accommodate that by having her at the teacher’s table with only a couple of other kids during independent work time so that they can redirect her back to her own work.

Her own work. And there is so very much of it. When Zuzu was in kindergarten I was overwhelmed by the amount of daily work she produced. Their kindergarten made my childhood kindergarten look seem like nursery school. The worksheets helping them to think about numbers and letters and not just rotely copy them down. They see the letters and circle the letters, and color and draw the letters and words that start with them. They copy the numbers and illustrate the sums in quantities of apples and birds and flowers. They sing songs about Ally Alligator and Catina Cat and the girls come home and dance around the kitchen with their movements and songs teaching Sugarplum about what’s to come.

And then, Mom laid down the law. Zuzu acquiesced and the Quail rebelled. I have no idea if this separating of them was in fact the instigation for her terrible, horrible, no good, very bad, day or not. What I do know, is that after two bad days in a row we pulled Zuzu aside and told her to go ahead and do what works best for her and let the Quail know that if she needed Zuzu to walk her to class that it would be ok for a bit longer. And the next day all was right with the world again and the Quail managed to earn her Friday trip to the prize box after earning the next three stars for the week. What I do know, is that I don’t always know what’s best. And that that is ok, sometimes even good to admit. That sometimes I can let others work things out without my propellers rotating. That sometimes others can keep the balls up in the air, while I find a way to dispose of the ones that might just choke us.

 

31 for 21: Day 1: It’s Down syndrome Awareness Month!

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It’s Down syndrome Awareness Month! This is the month where those of us in the community raise awareness and celebrate our loves that happened to be born with a little bit extra. One way I like to do this is to participate in our cyber-buddy Tricia, over at Unringing the Bell‘s creation 31 for 21. Currently this is hosted by Michelle with Big Blueberry Eyes.
Here’s the skinny- and hop over there to sign up if you would like to play along: You post every day, at least once day, for 31 days (each of them in the month of October, which is Down syndrome Awareness Month) on any topic, to raise awareness about Trisomy 21. 31 for 21! (Topics about Down syndrome are not necessary, though it is encouraged that you mention why you are taking part in the challenge at some point during the 31 days.)
I’m taking part again for my sixth year because Disability Awareness and Acceptance has always been a part of my life story. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
Then there was last year. I LOVED participating last year. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I still go back to these photos- they are a gift- each single one. And I reread the narratives and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project. And how they could relate to it .  And then writers that I love shared it with their friends. And then wonderful things happened. I borrowed the cowardly lion’s heart and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. I’ve never been so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely  and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for  a humanitarian award which we won this spring. And just this summer I was informed that the nomination was then passed on to the regional competition and we won that as well. If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to.  This year we’re doing the same fundraising. Our Buddy walk is this Sunday October 5th. The fundraising at work will happen after the event itself, but it will still happen a couple of weeks later.

For those that don’t work with me- there is an opportunity to contribute over here.

Now this year, I am not entirely certain where I want to be by the end of this month. My time to think and blog has dwindled. That sweet little hormonal shift that comes with nursing and relaxes me into a wordy melt up has ebbed as Sugarplum becomes less of a baby and more of a tiny, opinionated rebel commander pre-schooler. As the dishes pile up and the clothes wait impatiently to be folded and homework comes home in now two bursting-at-the-seams folders rather than one, my time is not my own. Life with three little girls is busy. There now is two little girls to dress for school and a third who insists she prepare to come along each and every day at the same early hour. There is carpool and jump-rope team and Brownie meetings,  TOP Soccer  and afternoon therapies. There are bowls of Cheerios and raisins and negotiations of how much milk is allowed to be poured over it to attend to. There are filibusters about the appropriateness of long pants in summer and short shorts in winter. There is hair to be brushed and detangled and pony and piggy-tailed and clipped. There are diapers and nursings and shopping as well as friends to play and eat and celebrate with. There are meals to put on the table, vegetables to be wearily eyed, milk and kefir stains to clean up and ears to be scrubbed before jammies can be carefully pulled over the summer’s band-aided knees. There are Netflix binges to lull Lovey and I off to dreamland each night while we fall in to the couch covered with orphaned socks. There are morning alarms to reset when we decide maybe we’re too tired to take that early morning run and maybe we can just wait and do it at lunch time. And there is yoga to go to at lunch when we realize we really do need to take a minute to just pause and breathe and we can run the  next day.  Life is busier than it has ever been. And while I wouldn’t change a thing about it, it is still a three-ring-circus, albeit my circus, my monkey’s as the meme goes.

That way of writing and relating our days was so cathartic last year. But it also assumes quiet bits of time to notice and reflect on the ordinary moments of our days in order to illuminate and convey the grace in them. And that, my friends is time that is hard to predict will come. And the pressure to share in this way I love and not just randomly is great. It is so great, it’s a great big block, knocking upside my writerly head.

This is just the reality of my now.

And while it flusters and frustrates me, it also just is. I’m only human. They’re only kids and the days we have together fly by in the beat of a heart. The days really are long and the years really are short. I still try to notice the little things in our days. I still feel a deep compulsion to capture them in too many stills so that I can stock my mind and heart with them for quieter days to come.
So once again, I will commit to sharing images of our days. And hopefully a few writings about them. As time permits. And the children sleep, and before my brain nods off. Which it is prone to do without warning these days.

five minute friday: hands

…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:

“Quail- do you want to go see your sister’s end of the year show this morning?” Her face lights up as she hollers yes, jumps twice for good measure and starts to tell the baby what is on the agenda. These sisters- they are there for each other. They don’t think about it they just are.

As we press open the weighted door to the first grade classroom I spy Zuzu sitting criss-cross applesauce by a set of desks close to the door. Our eyes meet and crinkle simultaneously as we slip into the full classroom near her spot. We are headed to a therapy appointment for the Quail within the hour and Zuzu’s teacher generously offered to let Zuzu’s group go first for their Reader’s Theater performance knowing how much it would mean to Zuzu that we are there to bare witness. Her group reads “The Fourth Little Pig” and Zuzu narrates her highlighted sections from her paper script. When they finish she rushes back to the area we are seated in and presses herself as close between the two desks separating us as she can manage so that she can momentarily bridge the gap between her school and home life. As the last group finishes up and I reach to the desk to set the camera down I see the girl’s hands entwined under the desk. The Quail’s small hand gently stroking Zuzu’s skinny fingers as she grips the Quail’s leg. They aren’t looking at each other and don’t appear to be otherwise aware of each other. Except they know. They orbit each other unconsciously. Drawing each other into their days and worlds.

This unconscious grace and acceptance, it has been there since Zuzu was first made a sister. As I sat on my rumpled bedsheets in the afternoon light nursing my newborn Quail, Zuzu crawled up to us all doe-eyed cautiousness not wanting to disrupt the nursing she herself held dear. I invited her in and as she joined us I looked down to see her hand protectively hovering over her new baby sisters, expressing more than she was able to say.

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Stop

3/21: A day in the life

This post is part of the series “A Day in the Life” that is a celebration of World Down syndrome Day – 3/21. For lots of other posts on “A Day in the Life” – or to contribute your own post, please visit Down syndrome Blogs.

 

 

Shortly after I hear one door close another one opens. I turn away from the machine, my coffee steaming as I take a sip and spy her small hand reach around the doorframe. Sleepily she creaks the door further and pads over to where I’m standing. I lean down to kiss her tousled strawberry mop, sinking onto the floor in front of the kitchen sink. As I make a lap she folds herself onto it, hiding her face from the fluorescent light she wasn’t quite ready for.  

“Morning Baby.” I lean in smelling her night’s sleep and carefully place the overflowing coffee away from us as she pushes her hair out of her eyes.

“Momma. Zuzu sleep. 6. 1. 5. me. Shannon. Me sleep done. No potty. Eat cereal.”

It’s Wednesday morning and it is early. 6:16 AM to be precise. Each day I intend to wake early enough to have a quiet cup of coffee by myself and do a little writing. Each actual day I wake a minute before the alarm sounds, turn it off, and roll on my side to listen to the soft snores of the baby before lightly stepping past her into the bathroom. Strangely, now that Sugarplum sleeps through the night, I find myself needing more and more sleep rather than less. I’m not sure if it’s the creak of my slippers down the hall, the flick of the light in the kitchen or the press of the Keurig as I snap my k-cup into place and add the cup of water, but the sounds of my morning starting have been consistently triggering the Quail’s weekday morning starts for a good while now. She seeks out a quiet moment to soak me in before her day starts and really, I don’t mind. I can write later.

“You woke up at 6:15 Quail?”

“Yes.6-1-5 me. Zuzu sleep.”

“Zuzu is still asleep?”

“Yes.” She makes the sign for sleep and grins up at me, the precision of her yes pronunciation drawing out steady and confident. She shares a bed with her sister and while the cry of “She’s on my side of the bed again!!!” and “MOOOOVVVVEEEE!!!!” sound frequently from both of them, it’s what they know. What they expect.

“What day is it?”

“Wednesday! Shannon! Jan. Bobson. Lee. Oriana. Nekaelah”

While a stranger might not know what she is saying, contextually I understand her still garbled day of the week and that she is telling me that she knows she has speech therapy with Shannon before heading in to begin her school day with first Ms. Jan, then on to Ms. Dobson and Ms. Lee. She knows that when the school day is done she will look forward to heading back to her private school for after-school care and playtime with her favorite kiddos, her friends Oriana and Nekaelah. She knows her routine and what to expect.

“Who will you play with at school today?”

“Or-ee-annn-a. Ni-KAY-la.” She carefully sounds out their names again. Names that she has taken great care to learn to pronounce so that no one can be unclear these are her friends. Who she looks forward to seeing and playing with each day. These are friends she has made on her own. Not friends of our family’s, not anyone we know outside of her introduction to them.

Shifting my weight a little she stands up and asks again. “Eat?” her sly smile telling me she already knows the answer. A year ago I would have just told her no, not yet; not expecting any further conversation on the matter, only fury at my denial of her request. Now though, it’s a good chance to engage, to talk, to practice pronouncing our every day vocabulary and thankfully, avoid a tantrum.

“You want to eat? What do you want to eat?”

“Um….” Her little finger goes up to her lips as she raises her eyes in contemplation then starts touching one finger to another as she labels out each item in turn, “cereal, rai-sin, keeee-fir, go-go squeeze! Cake?”

“We’re out of go-go squeezes and cake. We can buy more of the squeezes this weekend though. What do you do before we eat?”

“Potty. Bite-bite. Clothes. No potty. No.”

Still avoiding the fight, I ask, “Do you want me to pick out your clothes while you go potty or do you want to?”

“Me!!!! Purple. New shoes.” At this she turns and runs down the hall, stepping quickly around the tiny shopping cart overflowing with toys. She pauses briefly at the living room door, looking longingly at a neat stack of books on the side-table just waiting to be read and played with before checking back to see if I was coming with her or not before continuing into the bathroom.

“Momma! Sit!”

I lower myself on to the side of the tub finishing my coffee as she tries to undo the snap on her fuzzy, feeted pajamas before letting out a scream of frustration a few inches from my ear.

“No, ma’am. No screaming. Ask for help if you can’t get it undone.” She quickly signs help and then pulls back away to work on the zipper once the snap has been opened. Patting the side of the tub, she signs for me to move closer and leans her head on my knees while she finishes up.

I turn on the light to their room and sing out to Zuzu that it is time to get up and get ready for school as the Quail yanks on her dresser drawers pulling out a half dozen pants looking for a pair with purple on them.

Zuzu used to be our early riser. So early that a rule of not leaving your room before 6 AM on a weekday had to be enforced the previous year solely because of her. Now, she needs to be woken each school day and urged to do the half dozen tasks it takes to get herself ready before we leave by 7:10 to get her to school and me to work on time.

The Quail slams her shirt drawer shut and dives into her sister who has crawled up on my lap. As Zuzu protests at the slight dislodging this causes, the Quail’s voice trails up with hers and I shush them both with a reminder that we want to let Sugarplum sleep.

Lovey comes in fresh from the shower and takes the reins as I sigh at the clock’s having moved too far forward for me to do any writing or manage a second cup of coffee before we need to leave in our manic out-the-door-right-this-very-second-what-did-we-forget-this-time-hurry-up-we’re-going-to-be-late-if-you-don’t-put-your shoes-on-right-now-privileges-will-be-taken-away-I-mean-it-we-have-to-go-hug-your-sister-yes-you-have-to-wear-a-coat-where-is-the-sunscreen-who-took-my-shoes-shit-we’re-late-again daily rush.

I kiss the Quail’s head as she sets down the Ipad and tries to scramble away from Lovey who has gotten out her oral-motor exercises. “HUG!!!” She bellows as I lean in to acquiesce. “Bye-bye. Momma. Work.” Turning away from her I breathe in the fading scent of her sleep and hustle to the door.

That evening I’ll pick her up from after-school care, covered in sand, sunscreen and smiles and she’ll test my tired-out-patience as she darts in and out of the little school’s rooms giggling at the freedom now that the teachers have gone home for the day. “Donald’s?” she’ll ask. I’ll tell her no, reminding her we ate McDonald’s the night before and ask how her day was. She won’t answer- she’ll be too busy chasing Sugarplum and Zuzu.

As we pull out of the parking lot, carseat buckles secured, I’ll ask if they want their windows down or the radio up. “YEAH!!!! Drive fast Momma! Turn on a girl song. Make the windows lower!”

“Yeah!!!!” the Quail will chime in mirroring Zuzu’s enthusiasm for the car ride. As the latest pop song chimes through the windows I find myself surprised to hear not just one, but two voices bubbling along now from the backseat. By the time we’re home though, she will have rested her chin on her chest and be fast asleep. Between her insistently early start to the day, a therapy session, private 4k, public 4k, after-school care and the students we bring in daily to help her practice the activities she learns in therapy, her little self is usually beat.

Getting out of the car at home, I come around to carry her into the house as she snuggles up to me whispering. “Peg. Cat. Eat. Drink” in my ear. I answer with the need for her to empty the sand out of her shoes on the porch and then go potty first and her head jerks up off my shoulder in protest. As we settle into the bathroom for the millionth time of the day I not-so-patiently contemplate how much it would cost to switch our bathroom with our living room so that we could have more space in the room we actually seem to live in.

After tubbies are done, I reach for Sugarplum for a quick nurse before heading into the kitchen to see what Lovey is getting out for dinner. All seems quiet until the Quail peels herself away from PBS to look for us. I hear her questions before I see her, “Eat? Drink?” As she pulls her grinning self up on to the bed next to us she peppers us with questions, “Bread? Kee-fir? Ba-na-na? Pizza? Cake?” as she proceeds to pounce on top of the previously quietly nursing baby. Giggling Sugarplum lets go and engages in the rascaling as I sigh, cover myself up and head back to the kitchen.

Finishing up her dinner with slight disappointment over the lack of cake and pizza. The Quail asks for more to drink and then stomps her anger out of the room as Lovey lets her know she can have another cup of kefir after we do her bite-bites. Finishing up my own dinner I let the baby out of the high-chair and holler for Zuzu to come back and practice for her math quiz while Lovey loads up the dishwasher.

Once we finish up our oral-motor exercises, the Quail climbs back down off the couch. “Drink. Kefir. More. Backpack. 3-1.” I trail after her back into the kitchen to refill her strawcup as she unzips her backpack pulling out her book that came home from public school for us to read together. Gently she turns it over pointing out the number 31 on the back cover. She may not be able to pronounce, “The Elves and the Shoemaker”; but she knows it’s her favorite story from the collection at school and she knows its number 31. And now we do as well. Sitting back at the kitchen table we finish the story and she packs it back away as I rinse out her cup. 

“Up” her little hands reach up to me as she asks me to carry her back to her room. 7:45 pm. A little before bedtime. Lifting her up into my arms with all my good intentions to finish up the evenings chores after the girls have gone down to bed, we head back into the living room to kiss the other’s goodnight and Lovey joins us while we tuck her in alongside her duck lovies, yellow doggy blanket, cabbage-patch kid named Niles and Abby doll. Just as I start to tell her how very much I love her, my words are met with soft snores.

The day is done.

Lovey turns on her dreamlight, I set the sound machine to soft birdcalls and we back out of the room and close the door behind us.

five minute friday: write

…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. I need a pen. I need to write down how well I did on my math test and leave it for Daddy to read when he gets home tonight.”

“Q-u-a-i-l. Good! Good job writing your name! You did it all by yourself!”

“Momma, here’s the list. I asked the Quail who she wants to come to her birthday party and then I wrote it down for you.”

“Me. Yes. Write. Name.  Me. “

They do what they see, right? They learn from what we do. Momma typing on the computer. Daddy writing the grocery list. Their teachers writing on the pro-boards. Their friends coloring in the valentine hearts. And they pick up their pens, and their crayons, and their markers and their chalk and they scribble and turn the paper and write the letters they’ve studied on the refrigerator, on the TV, in the books we read to them, in the books they are learning to read to themselves.

“Momma- let ME make a webpage. Let ME type in the webpage I want. Let ME write the list. Let ME call Gramma by myself. Let me write the story that goes with that picture”

Suddenly they are not the babies I hold, and wipe up and dress and feed. Suddenly they are individuals with opinions, and ways of doing things and rules they want to follow and enforce of their own. Suddenly they are alternate versions of myself writing their own story that I can’t put down.

Stop.

 

31 for 21: day 30: corner view: all the small things

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!

View More: http://mollyflanaganphotography.pass.us/starkey-family-2013

Go:

The delicate lock of strawberry blonde hair that grew swifter than the rest and swirled on top of her sweet newborn head eventually growing to a lengthy thickness that she barely lets me run my fingers through these days. The soft arch of her eyebrows that curve delicately together over the sparkle in her deep blue almond eyes. The petite rounding of her small nose that just now at four and a half has the smallest smattering of freckles skipping across the bridge of it. The big apple cheeks that pull back wide and smooth with each grin that comes from her mouth that is a mirror image of my own. The contagious giggle that the baby has clearly caught and imitates when they are together. The practiced interpretive dance of her starfish hands as they come together in explanation of her tenacious speech approximations. And then their tight grip as they fist around my neck and pull me down to her, with soft, warm palms  as she leans her face in close, nose to nose and cupping my cheeks asks if I’m sad. The fury in her well-articulated “No Mommas” when she hears me say it’s time to brush her hair, do her bite-bites, go potty or turn off Barney. The delight in her questioning tone and gesturing hands that she puts up to her chest in a question of inclusion when I suggest we go to the park, the store, make cookies or read a book. The mischievous turn of her head back over a rounded shoulder as she lets me in on whatever rascally prank she’s gotten away with. The hesitant stomps and claps as she stands behind her sister mimicking her dance and cheer moves. The plaintive tone of her cries for, “My Momma” as she collapses in frustration on the kitchen floor when I leave the house too quickly on a weekday morning without her. The rounding of the consonants and vowels as her sister’s names rolls off her carefully positioned tongue in her seeking of them while they still sleep early each morning. The soft hum of pleasure that she unconsciously sings whenever there is bread or cookies with dinner. The persistent insistence of time for swinging the minute we get out of the car at the park. The persuasive and hopeful tones dancing on her lips as she tries to distract us from nap or bed time with a request for one more book.  The focused myopic daily search through her dresser drawers for a bit of purple to wear with her ensemble. The happy whispers as she pats the pillow next to her at nap time urging me to not just kiss her night-night but actually lay down with her. The cheer of excitement at the suggestion of just about any activity that includes all of her family as she runs to tell her sisters all about it. The firm and confident look she pierces you with as she stands her ground waiting for you to catch up to her intention.

These are all the small things that I think of when I picture her dear face througout my day.

Stop.