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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
When autumn darkness falls, what we will remember are the small acts of kindness: a cake, a hug, an invitation to talk, and every single rose. These are all expressions of a nation coming together and caring about its people.
“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.
It’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.
The 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.
“Zuzu- What is this?” I point to the drawing of a stick-figure with a bow kicking a black and white ball.
“It’s soccer Momma!”
“Why does it say that’s your favorite sport?”
“Because it is!”
Fair enough. She’s been saying it’s her favorite sport for years. She’s never asked to play and she doesn’t go anywhere near the net and balls we’ve procured for our yard. We bought those a couple of years ago because of similar drawings and descriptions of her favorite things. Yet, nothing. And after repeated questioning of why not dance or gymnastics or even hula-hooping- all of which she spends and has spent considerable time, money and effort on, she finally asked when we could sign her up for soccer.
But we can’t. Not really. Not realistically. The time just isn’t there in our days. Typically soccer is 2 nights a week and a day on the weekend. Those for us, are booked. And not just because of the Quail’s “special needs”. Certainly therapies cut into our workday schedules and are a priority. And certainly I wish I had more flexibility to be the one to take each of the girls to every idea that crossed their hearts and minds. It’s because in our house sleep and being learning ready are front and center in the weeknight priorities for our house. When the girls were little they were able to spend the mornings with Lovey until 9 or 10 while I headed out to start work at 7:30 am so that I could leave work at 4pm and still have the sun up by the time I was back with the family. When the girls did dance or gymnastics it was on Lovey’s more flexibly banded watch. Even Girl Scouts is made possible due to the awesomeness of our village and our Troop Leader’s willingness to swing by the girl’s after-school care to grab Zuzu on her way to the meeting. Now that the Quail has aged out of the Early Intervention programming our evenings no longer include therapy except for the occasional visit from our beloved EI. Even with that time being freed up and no longer devoting two nights a week to speech and early intervention our time doesn’t feel so plentiful. Because now, now they are school age. Now they come home with backpacks brimming with markered worksheets, weekly newsletters, permission slips, homework assignments, writing journals, library books and the random bits they’ve scavenged off of the playground- you know the half broken purple plastic heart-shaped barrettes, sparkely rainbowed beads from a sadly broken necklace, half-scrubbed and abandoned erasers, Taiwanese dollars, crumpled up hoodies and the extra cereal bar they snuck out when mean old mom told them they could only take one to school for a snack. And then there is Sugarplum- our pre-schooler who seems to have finally acquiesced to the idea of no more home-from-school-I-just-realized-I-was-separated-from-you marathon nursing sessions. She may have acquiesced in that way, but that doesn’t guarantee that you won’t notice her.
Three little girls now noisily make their way from the car to the house in a procession full of protests, announcements and grumpy tears. Usually ones that stemmed from mean-ole-mom telling them in a more than a bit raised voice for the 12th time that they need to stop horsing around, get their backpacks and we. need. to. go. now. after what is typically a 15-20 minute dawdling pick-up from after-school care as they race and hide and seek their way from one end of the building to the other telling about each others day and who has kept a star, who has lost one, who hugged their friend around the neck too tightly, who bit them and who didn’t share. Once we’re home there are tubbies to wiggle around in, clean diapers, jammies and next-day clothes to choose, dinner to eat and left-over homework to squawk through, teeth to brush and voila- it’s bedtime. 7:30. 7:30 is the goal this year. It’s rare we meet it, but it’s good to aim early.
Then a few weeks ago, Lovey and I had a rare weeknight out for a dinner with his co-workers. At that dinner I met a man who had helped us years ago in talking about special education and the local school system. Coach K, as he is referred to, helps to coordinate a local soccer program nationally known as TOP Soccer. Each week, college kids volunteer their time to buddy up with children with special needs to learn how to play soccer. They spend the time doing warm-ups and eventually playing the game. We asked if it was only for children with a diagnosis, since we were pretty certain that if the Quail went to soccer, all hell would break lose when Zuzu heard. Coach K said that absolutely Zuzu was welcome. They meet one night a week at a local field and generally have enough extra buddies that Zuzu could be assigned one as well. Perfect.
Except, for the one thing we didn’t think through. It’s for ages 5 and up. Not, 2 and up. And with us all heading there to watch, a certain someone, was bound to notice that her bigger sisters were going to be running on a sunlit field after a ball with lots of energetic onlookers cheering them on. So we planned ahead. We had water and snacks for all 3 and an extra ball intended to entertain little one who didn’t meet the age requirement off the field. Unfortunately it wasn’t sufficient. We spent the first night chasing her back off the field and attempting to cheer along between hollers at her to get back here as she repeatedly giggled over her shoulder running into the crush at full-speed. Sigh.
And then there were the big girls. The big, need-to-get-their-sillies-out-all-too-clear-their-parents-aren’t-in-charge-and-will-take-a-while-to-get-to-them, girls who realized with buddies that are new to them, they could easily negotiate an evening of free-form running and hollering rather than following the lead of their buddies and team-mates into anything even remotely resembling a soccer game. Lovey and I stilled our helicopter propellers from the sideline while my heart-rate inched it’s way higher and higher as I noticed each week that one-by-one practically every other kid had started to, well, play soccer. You know the activity we were there for? And there was two-thirds of the Sistred running in tandem with a small goal net over their heads while their buddies trailed along after, trying to tow the line between being light-hearted and affirming versus actually making them do what they were there for. Fortunately for the girls, Sugarplum managed to occupy most of our attention with well timed darts that alternated the field and the parking lot so that we couldn’t really helicopter our way over their behavior. But I was frustrated. And that’s a nice word for it. After the first night Zuzu received a stern lecture about the game, teamwork and sportsmanship and maybe a suggestion to lay off trash-talking the kids on the other “team” when they were going in after the ball. After the second week, she was keen enough to see the disapproving looks I was radiating as she managed to goof off just out of my reach. Later that night she told me she didn’t want to go again. The Quail, she shrugged off my frustration and continued to cheer for soccer night the next Wednesday morning. Zuzu, after two lectures told me she really didn’t want to “play”. As I held in my retort that she was yet to even try, I managed to pull up my mama-pants and ask why. She said she just got in trouble and my lectures had taken away all the fun. That’s fair. I’m not very good at masking my frustration when they willfully ignore instructions. And at this point I was more than a bit at a loss at how to remedy this.
Because the thing is, I really like going. The first week, seeing this large group of kids in my community that I had no idea existed all out playing together with this smiling set of good-hearted college kids- it warmed my heart. It was fun and spirited and well, fun. The Quail and Zuzu loved the warm-up Duck, Duck, Goosing., the ball chasing, the new team-t-shirts and the smiling buddies. The Quail, as usual, was following Zuzu’s lead. And Zuzu, was just not willing to join in the team-spirit of the activity. She wasn’t asked to be a coach- and being coached- it’s just not her thing. The third week I was really, really frustrated. By this week the group broke into two games for most of the session and there were our girls, running with a goalie net over their heads laughing to high heaven. Maybe I should have let it go, after all, if the Buddies or Coaches weren’t going to step in, maybe I should have looked away. Zuzu already hadn’t wanted to come back after private lectures, a public one was not likely to endear her to the activity.
I stepped in. I told the girls they had five minutes to follow game and practice instructions from their buddies and if they didn’t I would be taking them home so that buddies could be reassigned to children who actually wanted to learn how to play soccer. They shaped up. They didn’t join a team, but they practiced with the ball. On the way home I was quiet. Which was more alarming to Zuzu then any lecture. On the drive home she announced how much she was looking forward to soccer next week.
I remained quiet.
And still I remain. I’m really not sure what to do. I had already told Zuzu that she didn’t have to sign up again, but that we need to learn to honor our commitments by finishing out this season. But the thing is, this is not the first time we’ve struggled with this issue. And I don’t want her to take over the fun that the Quail has. The Quail would most likely be willing to participate the same as the other kids, if her sister would, or if her sister wasn’t there. I’m the one that wanted to integrate the sport organized for children with special needs. And others were happy to accommodate me. All were welcome. It’s not lost on me though, the irony of the fact that my two“typical” children, well they are the ones requiring more than a bit of redirection and attention.
I don’t know what to do. And I’m sure this won’t be the last time I feel that way. This weekend I brought it up in the most even-keel tone I could manage.
“Zuzu, let’s talk about Wednesday afternoon. What do you want to do- sit in the stands with a book? Or be on the field- you tell me.”
“On the field.” Her solemn eyes looked into mine. A rarity for her. And I looked back, pulled her into a hug and simply said, “Ok.”
Happy Birthday dear Zuzu! Today is your 8th birthday.
Oh dear Zuzu, where have the years gone?! As you like to tell it, you’re practically 10! I have a feeling you are going to love being 8 though. The older you get, the more you come into your own. The stronger you feel the urge to lead, to organize, to understand your world around you. You remain a kind, sensitive, strong, smart and loyal girl. One who watches out for what is expected of her and her peers and tries to help things happen that way. You watch out for your sisters as much as you mother and play with them. They learn so very much from you. You’re enthusiasm for the everyday fills your lungs, your legs, your heart and your brain. You are in second grade now. You are acing this thing called school. You welcomed your little sister in to your community, your school this year and take on such a big responsibility of ensuring that she is ok. You not only asked for this responsibility, but were sad when it was suggested you didn’t have to do that. You take pride in your school, your community and your Girl Scout troop. We love you so baby girl!
Zuzu’s Favorite Things:
Favorite TV Show: My Little Pony
Favorite Movie: Equestria Girls
Favorite Breakfast: pancakes & waffles, or a breakfast sandwich from McDonald’s
Favorite Lunch: corn dog, cheese ravioli or cheeseburgers
Favorite Dinner: Ravioli
Favorite Fruit: strawberries
Favorite Veggie: full size crunchy carrots
Favorite Dessert: any kind of sugar
Favorite Drink: juice, milk & Sprite
Favorite Color: orange & purple & white
Favorite Restaurant: Papa’s & Ring Restaurant (El Jimador)
Favorite Sport: jump-rope team
Favorite Toy: Barbie Dolls & My Little Pony Dolls
Favorite Song: Let it go! Any Katy Perry Songs, But I’m only Human
Favorite Book: Junie B. Jones and Rainbow Magic Books
Best Friends: Sophie, Annie, Micayla, Lucy, Gracie, Averi S (from Kindy), EriKa, Averi S (from first grade) Abby & Emma
Favorite Day of the week: Weekends- I love playing!
Favorite Time of the day: Bedtime- I can snuggle my family
Favorite Season: Fall and Winter- because Fall is when my birthday is and Winter has snow and I love to eat snow and go sledding!
Favorite Outfit: Elsa Dress!
Favorite Family Vacation: Del Mar- whenever I get to see my Birthday Twinnie!
Favorite Family Outing: going swimming
Favorite thing ever:Snuggling my mommy, playing “Where’s Maddie” with my Daddy, painting nails with my sisters, playing with my toys, getting to open birthday presents, watching TV
Favorite day of the year: My birthday!
Favorite place to go: to parties and to my friend’s houses
Favorite Holiday: Halloween & Christmas because you get candy and presents
What’s the thing you are most looking forward to about being 8: Being an even number and getting that much closer to being taller than my mommy
The worst thing ever at this age is: doing chores…..
“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.
To really be able to persuade someone, keep in mind that enthusiasm usually is more effective than facts. ~ Unknown
“Oh Zuzu, I know you’re in there….do you wanna build a snowma-a-a-n?” I hear the soft rumble of Sugarplum’s giggle from my lap as she watches the Quail crack up tossing her head back, eyes full of laughter. We are sitting in the bathroom, me on the side of the tub with Sugarplum and her blankies trailing to the floor. The Quail, hands folded neatly on her lap, trying to go to the bathroom. Zuzu is in the next room over hiding under my Grandmother’s hand-made afghan; refusing to join us at the requested time on a school day morning. Come the weekend will be another story for this lot. But at such a young age they’ve already acquired the weekday sleep-in habits of their teen years to come. It’s 6:20 and I’ve had a quick morning run and come in to get the girls ready for school before getting myself cleaned up for work. Last night was Open House at the girls’ elementary school and homework wasn’t done before we hurried them off to bed later than our typical routine. Zuzu was told that she needed to rise and shine quick like a bunny this morning so she could finish her math game before it was time to go. But she’s tired. And she isn’t feeling the shine part of the equation. I’ve already stopped the nighttime birdsong, turned off the elephant nightlight and turned on the overhead light. I’ve rubbed her back, peeled the covers from her too-warm skin and sang a round of Rise and Shine and still she curls into herself ignoring the morning’s expectations. I’ve used my cheery voice, my practical facts of the day voice and my stern voice. She’s not responding. She’s not alone in her desire to slumber.
The Quail, our best sleeper by far, is now our early bird. She’s a school girl now you see. She has a My Little Pony backpack ready to go with a cereal bar snack, a cup and straw for water, her boomerang folder and a stuffed elephant to share with her classmates for this week’s learning about the letters E and F. Kindergarten began 8 weeks ago and the newness of it has yet to wear off. The Quail gets to go to school just like Zuzu now. Sugarplum on the other hand, is still in pre-school and prefers to not be reminded of that fact, that difference that keeps her from her sisters.
These girls- they watch each other with eagle eyes. Patterning their vocal trills, dance moves, sass and love after one another. Weaving their independent selves in and out of the fabric of their sisterhood. Sugarplum has hit toddlerhood running. Mostly after her sisters. A couple of months ago we finally moved her out of our room and into the practically outgrown crib that operates in more of a toy-chest mode rather than bed. And a couple of weeks ago she got her big-girl bed. Along with comes more freedom than I’m entirely comfortable with. Now when one sister rises, she can be certain that the tiniest Sister-Lou-Who will trail after with her blankies crumbled into her fist. Even though she doesn’t go to school as early as the big girls, Sugarplum rises with them, trotting from room to room quipping tiny adult narratives in her sweet, sweet babygirl voice.
“Oh, where are my shoes Momma?”
“Oh, dere dey are.”
“Oh, I need a diaper. I go potty. I need cream.”
“Where my dess?” I get dessed now.”
“I get the Cheerios. I use small spoon. Where my milk?”
As the Quail, finishes up going potty, I help off with her nightgown. “No momma. Not my jammies. Dere, Dere mine. Bad Momma. Time out. No cake.” She points to the doorknob where; sure enough, her pjs from two nights ago hang. She had been angry the night before, when her tired mom, a little too eager to send her off to sleep, had insisted she wear her sister’s pajamas, after a brief search for her own hadn’t turned any up. “Sorry Quail. You can wear them tonight.” I soothe, pulling her shirt over her head and reaching for her shorts. Just as I turn back to flush the potty I hear a scream and tiny fist flail out as Sugarplum grabs the missing jammies from the doorknob and hightails them out into the dark hall. The Quail is mad now. She starts lecturing her little sister in half articulated, fully emphatic phrases as her brain pushes them out quicker than her mouth can round. And I wonder why we hadn’t been able to locate them the night before. I sigh, turning away from their chaos to the all too still bed of Zuzu. Still laying there, stroking the satin bowtie on her stuffed lovey, tears drip down her face from her red-rimmed eyes.
“Are you crying Zuzu? What’s going on?” My voice fills with concern and I sit down by her pulling her into my chest. She acquiesces, sniffling as she tells me her sisters were just laughing at her and it crumpled her heart. I ask what she means and she says it’s my fault because I was singing again. Staring at her, not processing this slight she took in so very deeply, she explains that I sang the Frozen song and they laughed at her just minutes earlier. Rolling my eyes heavenward I’m about to explain that they weren’t laughing at her, when her clearly wiser sister pushes her way in between our bodies to hug her tight.
“Sorry Zuzu. No cry. Sorry.” The Quail’s eyes are filled with love and I feel tiny feet pound into my back as Sugarplum parrots the Quail, now lying on her back behind me. Somewhat assuaged by their gathering around her, Zuzu wipes her eyes and gets up to begin her day.
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.
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!
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.
Ordinary Afters... 