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

…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

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.

31 for 21: Day 5: pressure

 

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Go:

Just as I arrange myself on the ground I hear little footsteps flying up behind me. First one than the other girl lets out a loud whooping roar. “Get her!!!!!!” As is not surprising, these bear-cub girls of mine pile on top of me with abandon. What is surprising is who lands first. The Quail giggles as she feels the full impact of her sister land on her back flattening us both. The wrestle. They rascal. They run together now. That Quail, she pretty much keeps up with her big sister these days, and together they slow their play, their pace when they can manage for their littlest sister who this time, thankfully has stood to the side with her hands entwined behind her back eyeing the pile up. They do this so routinely that I don’t think much of it other than to quip the old stand-bye at this point of how one day we’ll give birth to a sweet little girl.

“She was really sensory seeking today. That’s unusual for her.” Ginger the occupational therapist we’ve come to love tells me about her session. As I feel the hackles go up on my neck, ready to defend the Quail against yet another label, I, instead share back how earlier at lunch she and her sister had taken to imitating each other as they pressed up against Lovey and I throughout our lunchtime in the restaurant booth. I commented how Zuzu is prone to do this with me. That I often think she would still reside in my womb if left to her own devices, this almost seven-year-old of mine. I tell Ginger how it was noticeable that the Quail was imitating her sister with this behavior during lunch since she isn’t usually one to do that and how once Lovey left the booth briefly Zuzu slipped under the table to her sister’s newly vacant side and commenced a round of in-house dog-piling with her always-willing-partner-in-crime.

As we talk, Ginger points to the Quail who by this time has worked a large heavy wooden box across the floor and continues to press it into circles across the sleek, new floor. We pause and then Ginger goes on to say that they went ahead and did a number of sensory based activities in both OT and PT to help her center herself and afterwards she worked for a long time in quiet concentration on her table work.

Later that evening as Zuzu pushes her kitchen chair as close up to mine as she can manage without getting scolded to put it back in its place, I think back to Ginger’s explanation of the good the sensory pressure did for the Quail and find myself wondering over her sister. These sisters- they are so alike in the most unexpected of ways.

Stop.

31 for 21: Day 4: 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:

I pull the tub’s drain cover and wrap the toddling Quail in her towel, just as Zuzu positions herself at the stepstool between us. “H-A-T” she recites pushing the small square of paper over to me. And there it is, in her four-year-old scrawl. She licks the graphite tip of the pencil mildly as I grin over at her.

“Was Daddy helping you write about his hat?”
“No Momma- I did it. I wrote it.”

And just like that, she cartwheeled into the world of big kids. She did it herself. Probably someone unknown to us helped her figure it out- but as far as our parental involvement was concerned her ability to write and spell and read and talk appeared like magic.

“If I make the dots large enough, she knows now to connect them and form the A. She’s getting good at it. These three were hand over hand, but this one here on the end she did on her own!” Our Early Intervention worker handed over the orange construction paper for us to pin to our fridge a few months ago. Since then they have worked diligently on the next letter in her name with a goal of fading back the prompts and her writing her first name independently before her fifth birthday.

Magic versus practical. So different from her sister’s path into big kid-land. And yet, in the end, they are both there. They’ll both learn to write, to read, to speak and to spell. Lucky for us, Zuzu is a big fan of playing the role of the instructor. Lucky us, the Quail idolizes her. Lucky them, we can take either path to get them there.

Stop.

31 for 21: Day 3: careful

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Go:

“Hot Momma.”

Her hand passes over the top of the warm cupcake as she looks up at me making sure she is right. The cupcake is hot. It is fresh from the oven.  She reaches over my hand to grab the bottle of sprinkles and rainbow the top. I pause and ask her to wait.

“Yes baby. Get a bowl please. We’ll put some sprinkles in a bowl for you to use. We need to share the sprinkles.”

She carefully navigates her short legs to the ground and takes the two steps to the drawer where the small collection of child-size bowls are stored. She pulls and then pulls a little harder when the ancient drawer won’t give. She sits down to go through the choices and I hear her quietly muttering the colors as she pulls them out.

“Red”

She makes the sign for bread as she sets it down and reaches for the purple. I smile thinking of how she made her own clever sign for the color red. It rhymed. It made sense to her. She taught it to us. Often her approximations of words have to be mentally sorted out into their meaning given the context of the situation while we stumble into understanding. But this one, this one made me chuckle. She knows what rhyming is. When her early interventionist was over last month I watched amazed as she laid out images paired with simple words and then asked her to figure out which ones sounded alike.

“Pur” she whispers and turns just a shade away from me knowing full well what is coming next. Over the last few months we’ve had to push her to talk. We practice words we know she can say and we d-r-a-w them out for emphasis of each syllable. We push. She pushes back. Sometimes I wish “no” was a little harder for her to say. She answers with a garbled noise and I crouch down, ”You can do it. P-u-r-p-l-e. Try baby” I say in soothing tones and tap the side of the plastic rimmed bowl.

“Purple.”

Clear as a bell she recites it back with a crisp p sound in the middle. She grabs it from the floor and clamors back up into her chair holding it out for me to pour in some sprinkles. As I do she puts her thumb to finger, pinches up a bit of the sparkly colors and douses the cupcake in front of her not hesitating as she reaches to the platter for her next sugary creation.

“Hot Momma.”

“Yes baby. Hot. Be careful.”

And we begin again.

Stop.

31 for 21: Day 2: apron

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Go:

“Cook Momma?” Her voice reaches me as I empty the last of the Fiestaware from the bottom dishwasher rack.

“No baby- Momma has work to finish before bed.”

“Work. No. Momma- cook.” She stands her tiny ground that she needs attention. Now. In the last few months her ability to tell us what she means has become clearer. It still requires patience and prompting. But it is clearer.

She turns and runs to the pantry grabbing one of the set of pint-sized aprons we keep on hand for cooking. She hands it back up to me and turns her back waiting, knowing that I will tie it in a gentle bow and acquiesce to her request. I lean down and kiss her strawberry locks and hand over the rainbow whisk that she loves to “cook” with. There may not be time to make actual muffins. But certainly there is time for the even better make-believe ones. Because I can see it. I can see her mind and many of its facets so much more clearly now than I could a few short years ago. I can see when she is pretending and when she is serious. When she is ready to learn and when she is ready to teach. When she is ready to work and when she is ready to play.

I turn back to the dishwasher to finish emptying the top rack as she starts lining up the metal bowls from the bottom of the baker’s rack with a pattern of clanks onto the hardwood floor. As she whisks her thoughts into something tangible for the rest of us to see, her sister’s come in to the pantry to join her. Together they mix and stack and stir and blend their lives, their time, their make believe and their reality.

Stop.