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

Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

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

Go:

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

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

Stop.

 

31 for 21: Day 29: pause

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

Go:

As I sit down on the little red ottoman in the girl’s room to help the Quail put her shoes on, I raise my voice in irritation for Zuzu to just get in here already. We offered to take the girls to the park and have spent the last 30 minutes gathering ourselves for what was intended to be a trip of that same amount of time just to burn off some extra energy.  Zuzu with her selective hearing is bounding through the house gathering the toys to bring along that she already knows we’ll tell her to put back. She’ll push anyways. Making sure that not bringing our inside toys to the park is indeed a rule and not just a guideline we’re likely to waver from given enough chipping away at it on her part.  As she prepares her already lawyerly defense as to why the little ponies have to come with us to the park, I interrupt her to tell her again to just put the toys down and put her shoes on. The Quail, having watched the look on my face and hearing the tone in my voice, turns from her spot on the floor and starts barking “No” to Zuzu. Clear what the rule is herself. Hearing my own gruffness reflected back through her tiny self I feel my cheeks heat up with embarrassment. Looking out over the Quail’s head into the dark hall I see Zuzu finally rummaging through the box for something with velcro just as Sugarplum toddles in to the bedroom, shoes in hand and plops down just about on top of the Quail.

“Shoe.”

The Quail repeats the word, now with as gentle a voice as the look she reads off of my face at the sight of the baby and starts to pull away from me to “help” her as I manage to press her own straps closed. Sugarplum shrieking at the Quail’s advances has apparently forgotten that she chose to sit so close to her oh, so helpful sister. Running away before the baby’s tiny hand can land in protest on her, the older girls start to dance around each other lit up by the twinkling of Zuzu’s fluorescent toes. The Quail starts pulling Zuzu’s arm away from the pile of pony’s to where the coats lay on the ground, urging her to finish getting ready in her own way.

I pull Sugarplum up into my lap and lean in to smell her freshly diapered self. That pause is enough to bring me back down. That warm, compliant, sugar sack weight of a baby on my lap with her little blonde wisps springing out of the tiny plastic heart barrette is enough to deflate my previous irritation. To remind me to look for the intention behind their actions, not just at each action. Last year when I would drop the Quail off at school I would ask how she was doing and hear examples of how she was always trying to tell the other children what to do. She was bothered when someone else wasn’t doing their work or following directions. They would frequently have to remind her to only worry about herself. It was usually told in the form a seemingly good-natured story.  Come the final IEP of the year though, those same tales were told with a decidedly different tone. They were explained to us as examples of her easy distraction, her being too hands-on with the other children. They were seen as problems.  Reasons why she shouldn’t be around the other “typical” children. This year though when I check in with the teacher what I’m told is what a good classmate the Quail is. How she takes care of anyone who is sad or hurt. She’s seen as nurturing and popular with her friends. How they love that about her and wish all the children were adjusting as well as she is.

I reach around and find Sugarplum’s tickle spot as she pulls away from me giggling then leans back in raising her arm imperceptibly for more tickles. Now smiling I repeat the word, “Shoe” waiting for her to parrot it back before strapping it on to her small foot. Setting her down the red shoes squeak with each toddle as she takes off out of the room hollering her sister’s names trying to catch up to them.

Turning off the light I head out to the car. Ready to move on.

Stop.

31 for 21: Day 28: without

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

Go:

As soon as the backdoor clicks shut I hear a wail come up from the end of the hall. Rushing back I see the Quail sitting on the carpet with her shoe box dumped on its side around her. Big, wet tears are making tracks down her cheeks and she’s trying to force a pink and yellow flowered sandal over her jammy-clad  foot. Kneeling down beside her I start to gather the shoes back to the box. I’d spent the better part of the morning sorting and folding the seasonal exchange of children’s clothes that had been landsliding through our home  for the last two weeks. Eyeing the new mess in the hall, I was none-too-pleased.

“Quail, stop. Help me pick these up.” Rather than helping. She starts screaming what sounds like, “Cookie!” to me as she shoves my hands out of the way and continues to try to get her shoe on her foot.

“Quail. Stop. No. No cookies. Clean up.”

We continue misunderstanding each other as her frustration races my irritation to the culmination of her meltdown. Finally I get up and leave the hall. Sometimes I just need to step away. Time-outs, they are wasted on the young in my opinion. She follows me into the kitchen continuing to chant cookie and grabs the plastic pumpkin bucket off of the kitchen table. Shoving it up into my hands she tries again. “Cookie.”  Peering into the pumpkin. I repeat the name for it, “Pumpkin?”

“Yeah. Pump-kin. Daddy. Sug. Zuzu. Me!” She bangs her small hand against her heaving chest gathering the pumpkin up with her shoes and runs to the backdoor.

Not cookie. Not angry. Not out-of-control. Not trying to make a mess. Just not able to articulate in her panic, her desire to be included.

When Lovey got ready to go to market this morning, I had gone up to the attic to find our trick-or-treating buckets because I was fairly certain that we only had two to go between the three girls this coming week. One pumpkin. One Elmo head. Zuzu had dressed Sugarplum in a striped and pumpkined sweater and in all her baby-cuteness I had grabbed her, Elmo and the camera to photograph her quickly in the morning light before strapping her into her carseat. Unbeknownst to me, the Quail had seen the buckets and my camera and had thought they were going trick-or-treating. Without her. The day before she had been sick and the girls and Charlie had gone to the school’s fall festival while she and I stayed home.

“Did you think we were going Trick-or-Treating?”

“Yeah. Boo!!!!” She waggles her fingers scarily at me and we both laugh. I explain that Lovey and the girls were just going to the store. They would be back and we would all go the pumpkin patch later.

“Me. Boo.” Satisfied that she was not being left out. She moves back to the living room to resume her Barney-marathon. That’s the thing these days. I still repeatedly underestimate how much of the commotion around her she is taking in and processing. Whatever her sisters are doing. She wants to be doing. Be it- going to school, to the park, to the market or pumpkin patch. If Zuzu is twirling through the yard in a rock-star costume. The Quail is only a beat behind. If Zuzu gathers her backpack to head out the door. The Quail is making sure hers is packed with her Bookflood Book and folder. If Zuzu grabs her swimsuit to fill up the little plastic pools, the Quail grabs the towels. All for one. One for all. Sometimes it just takes me a while to catch  up to speed.

Putting the last shoe back in the box and returning the plastic pumpkin to the kitchen table I reach into the fridge for the tub of Tollhouse dough. Suddenly I’m exhausted and hungry for cookies.

Stop.

31 for 21: Day 27: Thin Places

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

Go:

Emptying the purple backpack I find a note that the drink we usually send in didn’t make it to class today. They filled her cup with water but wanted to make sure that was ok. A month earlier there had been a similar note regarding the therapeutic straw we send in. It doesn’t happen often but a few times a year our fail-safe plans to keep the Quail from aspirating on thin liquids goes haywire in the morning circus of our weekdays. Grinning I go to the computer to reply to her teacher with our apologies and assurances that what they did was fine.

Once upon a time, it wouldn’t have been. Once upon a time there were frantic phone calls to my cell phone as I continued the morning commute into work and the need to pull over and sort through my options for getting the appropriate drink, cup or straw to the Quail before she finished her morning snack. If Lovey didn’t answer the phone when I called to see if he was at a breaking point in his schedule, I’d start to turn the car around until he called back.

For the most part the Quail has lived a typical life in a typical setting. The little supports that go into keeping her life typical though- they have been manufactured and adjusted regularly as she’s grown. Every six months her early interventionist will review an assessment to see how she’s developing and what concerns we have and what goals we want to focus on for the upcoming set of months.  This miracle worker of ours has guided us from the time the Quail was eight weeks old on up until now, taking the activities that we were blessed to be able to take for granted with Zuzu and measuring them out to the Quail in simpler steps that can be linked together so that months from the onset of a goal she can breeze through an activity alongside her sisters and friends making her efforts look easy-peasy to quote Zuzu. Most of these activities though, were not a matter of her health or safety.

Only the thin liquids were that.

When she was 14 months old we discovered a two-fold cause of her repeated, daily throw-ups- a duodenal stenosis, that could be easily corrected through a surgical removal of the membranous webbing the next month, and a series of swallowing issues that amounted to a neurogenic swallowing disorder that would take years to correct if at all. Every few months we would take her back to a speech therapist for a new swallow study to see if she was doing any better and might be able to drink regular thin liquids. Every other time she alternated improvement with worsening. The therapist finally explained that with every growth spurt, it was like she was gaining a new set of equipment and would have to relearn how to coordinate and control her swallow to prevent the liquids from going into her lungs and making her sick. We could compensate for this by thickening all liquids and only allowing her to drink from a straw-cup.

This past summer though the result of the follow up testing showed that she was controlling all liquids- meaning she could now drink plain, old, regular water, milk or juice. We still needed it to be chilled  and drunk through a straw to assist in her controlling where it went, but she could control it with those supports.

This. Was. Huge.

This meant when the Quail went off to big-kid school this fall, she was no longer at risk of accidentally aspirating if unbeknownst to us, a substitute teacher, therapist or staff member filled in with her snacks and meals. It’s one thing to reiterate to a small staff in a private daycare what they need to do to keep your kid safe from something as innocuous as water, another thing entirely to be sending her off to an elementary school with a population of approximately 800 students.  

Just as I hit send on the email to the teacher the Quail comes running back into the office with her strawcup in hand:

“Momma. Keeee—fir. Me. Drink.”

I reach down to take the cup from her. “Absolutely. Did you have a good day at school?”

“Yeah. Play. Eat. Silly!” She waggles her hands in the sign for silly as she laughs and dances her way to the fridge to pull her beloved kefir out. Easy-peasy.

Stop.

31 for 21: Day 26: breakdown

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

Go:

I hear the bedroom door creak open and jammied feet pad softly down the hall. Looking at the computer screen I note that  it’s after 6 a.m. Technically they can be up now. She pokes her sleepy head into the room rubbing her eyes.

“Momma. Eat? Drink?” Her question makes me chuckle, although I turn from her until I can pull my serious face back together, not wanting to encourage this pattern. Years ago our housecat would wake earlier and earlier to eat. Eventually I learned to switch from morning to nighttime feedings so he wouldn’t wake me earlier and earlier to be fed. That’s not really an option in this scenario, although it sure would be handy.

“No, Quail. Not yet. Potty. Then bite-bites. Then breakfast.” Her face folds up in disgust as she stomps her foot and leaves the room. Only for a minute though, she leans back in to try again.

“Book?” Signing as she says it I sigh and swivel my chair back towards her. The book. We didn’t read the book last night.

In the regular 4k class that we fought so hard to get her into, a daily part of the program is a take-home book that we are to read each night and return to exchange for another one. Last week when I was visiting the school for Zuzu’s field trip we took a brief detour to go down to the Quail’s class and peek in on her. She was tickled to see us and grinned and waved from her square on the carpet as her teacher worked through the cubbies pointing out to the children who had put their things away correctly and who still needed to try again. The first group had their backpacks hung up and their orange folders emptied with the Bookflood books returned to the basket. As she edged towards the Quail’s cubby I notice her purple backpack laying on the bottom of the cubby. Still zipped tight from the morning rush.

“Quail, come back over here let’s try again.” As the Quail hesitated my helicopter’s main rotor blade starts to turn and I stand up, then sit back down, willing my hands to stay still and let the teacher do her job. The Quail walks quietly over and starts to unzip the backpack fumbling over the plush owl attached to the front of it. The teacher looks up at me and comments that her assistant isn’t in today. Usually she helps the Quail get things where they need to go. We both pause, slightly embarrassed, not really sure what to do next. Eventually I stand and go to kneel at the Quail’s cubby as she struggles with the zipper and the teacher steps over to the next cubby. I make a mental note to add having her open and empty her backpack to our evening routine.

Except , our routines are more chaotic piles of need-tos and should-have-done-the-night-or-weekend-befores  rather than orderly-lists-ticked-off-and-put-away-before-bedtime and it’s hard to add even something this simple into our small window of time between pick up from school and drop off to sleep. Still though, the ability to easily open her backpack, take the book out of the orange folder, return the folder to the bag, zip the pack and hang it on the hook next to her coat is a daily expectation in this “regular” class. It’s those little details that in and of themselves are not complicated but added up together and explained and practiced with a 4-year-old with severe motor planning delays that we stumble over until the breakdown of the steps breaks us down.

Little things that we have to know to teach her to be independent with; like climbing into our car and further up into her car seat. Buckling and unbuckling her car seat harness.  Opening the car door to let herself out at drop off.  Buttoning  and unbuttoning her coat and then easing in and out of it. Putting her backpack on and off.  Reaching up to a hook in her cubby and looping the backpack over it. Opening the container her snack is in. Articulating clear enough so that she doesn’t end up angry with the teacher misunderstanding her lunch choice and in turn even angrier when her four-year-old mind insists on not eating the lunch that she didn’t ask for even though her four-year-old body very much needs to. Carrying her lunch tray without spilling. Punching in the code to purchase her lunch, staying in the class line as they walk from one area of the school to another without lagging behind or worse- hiding when the children are called to line up. Pulling her clothes easily on and off when she has to go potty. Hoisting herself up on the potty that, while kid-sized, are still just a bit high for her small frame. Wiping after she goes so that she doesn’t end up in pain with a rash. Climbing onto the swing she loves so dearly and not falling off of it as she wills her legs to pump at recess. It’s those little things that you can’t possibly think to prepare for until you find yourself wholly unprepared. Things that individually are simple and she’s capable of and cumulatively will cause your brain to melt. That is, what’s left of your brain, you know- the portion the children haven’t already taken for themselves.

“Yes, go get your backpack. Let’s read your book.” She runs off to the pantry and tumbles quickly back into my lap with the pack as I set my coffee down and she works her fingers around the small zipper pull. This time the book was too big for the orange folder so she quickly pulls it out of the pack easily and climbs into my lap. She pushes my hand away as I reach for the book, and traces her finger over the title. “O-N-E. She sounds it out and leans back into me with a grin.

“Yes. Good reading.  O-N-E” My finger traces the invisible line hers created connecting the sounds. “One Rainy Day. You like this one right?” She nods and turns the page as we start this story we mostly know by heart now.

Stop.

31 for 21: Day 25: five minute friday: together

…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.

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

Go:

Turning off the shower and stepping out into the steamy bathroom I yawn. It’s too early and there is too much to do and my sinuses are pounding. It’s Friday and I have to be ready to leave for work in 30 minutes. I leave earlier than other weekday mornings so that I can return earlier and have a date with Lovey before daycare shuts down. Before we spend the weekend together as a family. The pain is worth the gain. But I miss the girls on these mornings. I miss driving Zuzu in to school and hearing the thoughts that are forming in her head, her life, her world. I miss being together. It’s these moments where it is just the two of us that I’m most likely to hear what she’s proud of, what she’s afraid of, what she plans to eat, and say, and do that day. It’s 10 minutes together and it tells me more about her then the other 23 hours and 50 minutes combined. 

“Does weather come from God or science Momma?”

“I’m scared that my teacher is getting married Momma.”

“Lucy is my best friend Momma. I’m going to play with her at recess.”

“JW got into purple Momma. He gets into purple more than anyone. I’m going to get into purple today.”

“I’m in the hard reading group now and that means that I get to pick non-fiction books.”

“I’m scared to be in the hard reading group Momma. The books are too hard.”

“Erika & Julia don’t want to play with me Momma.”

“I don’t like Monday afternoons. There’s no one to play with once the Quail goes to therapy.”

“I broke my record yesterday and got all my homework for the week done.”

“Everyone else is going to be lunchbox on the field trip Momma. I’m the only one with a school lunch. Please?”

Pushing a brush through my wet hair I peek through the bathroom door and see Lovey sitting at the computer with the Quail on his lap. She has her arms wrapped around his neck and his eyes are closed. The rest of the house is still.  I smile and quietly close the door shut hoping she won’t see me yet. I know that hug. It goes to who she runs into when she first wakes. When she comes to life and starts to tick off the morning activities on her small fingers. Before her will collides with our need. Before chaos and rush and petulance settles in feathering our best laid intentions.

When I finally leave the bathroom the office is quiet and I hear the sound of the small whistle float from the living room. Lovey and the Quail run through the daily “bite-bites”, the small acts that create big words. I move around the periphery of the house willing the baby and Zuzu to stay asleep and the Quail to cooperate while my coffee pours quickly and I escape back to the computer for a few minutes to be alone, before we are again, together.

Stop.