corner view: close by

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!

Sadly, our family is not. But this past week, Lovey’s parents flew in and paid us a visit and it was so very sweet to watch our girls spend time with their Nana & Bapa…there was cookie baking, swinging, painting, park time, day trips, meals out and in the hotel and in the home, storytime, picnicing, rascalling, laughing and much love.

 

 

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.

corner view: from a distance

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!

As the years pass, my role vascilates up close and watching from a distance with these three little dear hearts. I admit I take great joy and experience great anxiety from both proximities.

scouting

About a year and a half ago I asked Zuzu if she would like to be a Girl Scout. There was an informational meeting scheduled for that weekend.

“Yeah!!! Let’s be Girl Scouts!!! Let’s beat those Boy Scouts!!!”

Um, no. Not the point of Girl Scouts, and in fact a very good reason to become a Girl Scout. So we put our name in the hat and waited. And waited. And finally we got the good word- we had a troop and even better the new troop leader goes to the same daycare/preschool we use and could take Zuzu with her to the meetings, which were scheduled during my work hours and the Quail’s weekly occupational and physical therapy. Really, it couldn’t have been better planned. Zuzu has been known to come home all mopey on Mondays because her sister gets picked up from after-school care and she doesn’t get to play with her. And this group of girls, or at least those signed up for it, are some of our favorite little buddies in our community.

Zuzu in all her fervor and excitement then proceeded to go invite a series of other little buddies to join, and a number of them did. All told there are about a dozen newly designated sunny little Daisy Scouts in our town. From the moment Zuzu got word that her troop was forming and that Ms. Debbie was going to be the leader, she started seeking her out with questions:

“Ms. Debbie- will we sell cookies?”

“Ms. Debbie- how much will the cookies cost?”

“Ms. Debbie- if they cost $3.50 how about we charge $5 so we can make more money!”

“Ms. Debbie- I gave the other little girls homework so we would be ready for the meeting.”

And so on and so forth. One day when I picked her up she told me she wasn’t ready to go home yet because she was making notebooks and buttons for each of her fellow Daisy Scouts. And sure enough- stuffed in her backpack were bits of torn and stapled cut up papers and markered circles with the names of her friends.

This girl was born to be a leader. When she was young we had her in dance class. Our little daycare/private school took her each Wednesday. She enjoyed it, but didn’t really seem to burst with the enthusiasm she was known for. By the third year of class though her teacher recommended we move her to a new group because she was essentially using her as a little dance assistant by that time in order to get all the kids to their spots. Unfortunately , as a dual-working-out-of-the-house set of parents that wasn’t going to work for us.

So we moved on to gymnastics. It was ok, she is spritely, but with her class there was a LOT of waiting her turn, something that isn’t easy for her high-energy-self. When she was moved into an intermediate class there, she found herself in amongst girls quite a bit older and bigger and our brave girl started to quake. And then to complain. And then to ask to not go. We finished up the session and then told her she didn’t have to sign back up if she didn’t want to. She decided it “might be good to take a little break.”

So for a year we didn’t really have any extra-curricular, until Daisy Scouts was ready for us. The very first night of class we walked in both a little anxious. Zuzu- she’s not like the other girls. She doesn’t sit quietly reading and coloring. She whooshes. She zooms. She full-out runs. And chatters. And asks questions. And directs traffic. I had spent the morning reminding myself that scouting is about building confidence and leadership in young girls, two traits that Zuzu already had in abundance. And this was not about my micro-managing-helicoptoring her. Which would be hard for me, what with my preference towards social niceties. Well when we walked in the room we were greated by a tribe of chattering girls. All full of colorful enthusiasm and energy. Zuzu was not the most boisterous by a long stretch- these were her people.

For the next few weeks she came home bursting with the Girl Scout law and the characteristics and values it was teaching her- sharing, helpfulness, honesty, fairness. She loved the explanations and the little embroidered daisy petal patches that she was growing on her small deep blue vest.

We started our troop partway through the school year and so we got off to a bit of a late start in the age-old tradition of Girl Scout Cookie sales. We were told that in spite of this, the starting goal for each girl would be to sell 100 boxes. We would have one cookie booth that we could take part in to meet that goal, and otherwise we were to attempt individual sales. I have to say- this is the part of scouting that I have been least interested in. I don’t like going and asking someone to buy something or to donate something. Of course, the goal wasn’t for me to sell 100 boxes (even though when Zuzu joined I proudly paid my own dues and renewed my childhood membership to the Girl Scouts of America), it was for her to. But nowadays- people don’t really go door-to-door. At least not when you don’t know most of your neighbors. Our first attempt at sales was the first cookie booth. Zuzu was so excited the morning leading up to it. On her own initiative she made 3 different signs letting people know when and where she would be selling cookies and begged us to walk her around the neighborhood hanging her sign. I went ahead a snapped a picture and put it on Facebook. And lo and behold….people bought cookies! Next she decided to make a “commericial” to sell her cookies- so I put it up on Facebook and again- people bought cookies!

That afternoon we joined two of her troop-mates outside of our resident Lowe’s and the spirited little girls accosted, I mean asked passers-by to buy their cookies. The girls had lots to learn in this experience about customer service, money management, and being careful with the cookies. I was only at the table for 45 minutes, but I was beat by the time we headed home. That day we sold enough boxes and each girl got credit for 11. The next day she started calling our relatives. Unfortunately most of them don’t live near by. One thing the Girl Scouts do though is participate in a “Cookie Share”. When people pay for cookies,  instead of getting the cookies- the cookies are then wrapped up and shipped to soldiers overseas. This seemed like a wonderful opportunity to do service for those doing service for us. We managed to sell 29 of these donations.

The next week we talked during school drop-off and pick-up about people that she knows that might like to buy, her friends, her teachers, her after-school care staff, previous teachers. Each morning she would tell me no- that she was too shy to ask, and then 3-4 afternoons a week she would surprise me with a new order. A few were pipe-dream orders- little friends with cookies in their eyes. I was careful to check with their parents before placing the orders. Then on the last night to sell cookies Zuzu realized she hadn’t called her Nana and Bapa about cookie sales yet and they were coming to visit soon. So she called and sure enough they bought. When she went back to write down their orders she realized she was only 4 boxes short of her goal and went back to proudly tell them. They of course, being sweet grandparents, happily bought 4 more boxes for the soldiers and Zuzu met her goal!

I hadn’t asked anyone at my work directly to buy cookies. Lovey hadn’t either, we shared her commercial and talked about her efforts on Facebook and during the last few days of the sale I reminded her that if she wanted I would happily hang a sign-up sheet at work to buy cookies. She made it. I hung it. We got more cookie orders. A number of folks commented that when the child asks, they will donate. I’m glad she worked so hard on this in her own way. She sold in total 115 boxes in three weeks.

I’m so proud of her work, her attention to detail and her enthusiasm for the Girl Scouts. She seems to have found her calling.

corner view: travel

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!

 

Life has been barreling by me these days friends. I haven’t been able to post our adventures and accomplishments, let alone the beauty of our ordinary days. That said, the pictures all live in my computer and one day I’ll come back to them and smile through the editing remembering.

About a month ago we traveled up into the mountains again to visit with friends. We did this last year and what a treat it was- friends that have known more about my daily life and thoughts for about 8 years from having met on a message board have now become IRL friends. Our kiddos had a great time playing together and we’re lucky to live within a few hours of each other so that we can get together. It’s a funny thing how a group can be so cohesive and yet so diverse. But the thing about having met on-line and knowing each other so intimately for so long- well there’s an acceptance there that is hard to come by in real life and time. Later this summer we hope to have a big meet-up where more of us can get together. But for now, I’ll take my mini-meet-ups…