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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.

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