31 for 21: Day 21: (3) on the 21st: A Blog Hop

photo-11-e1374422584166

 

This monthly blog hop is a community project created by one of my pals Meriah over at With a Little Moxie.

One truth (about Ds/our lives with Ds): The fact that your child has Down syndrome is not a reason in and of itself to not have any more children.

When word got out that I was pregnant with Sugarplum, not all the responses were what one expects to hear in response to a pregnancy announcement. Don’t get me wrong, there certainly were plenty of folks that were thrilled for us, and sent their congratulations. And for the most part, that’s what I remember, the gracious generosity surrounding the welcoming of Sugarplum. But, then came the warnings, from “well-meaning friends”.

“Just so you know, don’t expect everyone to be happy for you. Since you already have a child with special needs, some people think it’s not good that you are having another.”

I probably shouldn’t put that in quotes. Those weren’t the exact words. It was the sum of the message. Behind it were thoughts that we were crazy to have another, because couldn’t we already see- one child was born with a disability. Why would you want to risk that again?  Other’s thought we were selfish- poor Zuzu already can’t possibly get the attention she needs with all of the Quail’s needs, and now you are going to add to that? And what about the Quail- considering all you do for her how could you possibly have time for another child. Surely you’ll quit work to stay home with your children now!

Those statements, those are all speculation, opinions and worry. They aren’t truth, at least not mine.

The truth is we have little spare time in our day. The truth is our days would be jam-packed if the Quail didn’t have Down syndrome- that time spent going to and practicing what we’ve learned in therapy- well we would fill it with something else. Those visits don’t bother the Quail- she enjoys the activities in therapy, the therapists, the time out of her day going somewhere with her Mom & Dad.

The truth is, we worried too- but the fact is- you find the time to do what you need to do- and whatever might be taken up in terms of one on one time from a child when a sibling is added to the mix, is more than made up for in love.

This is our truth- our three girls- they love each other. They play together. When one of them rises in the morning they ask after the others. When one of them is sick and misses a day at school, the others want to know where she is and go straight for her the minute they return home. When one of them has a solo activity, the others pipe up with an eager, “Me too”. This past week we had Zuzu’s first grade parent-teacher conference. Zuzu is, well to put it mildly- “in charge” most everywhere she goes. Sometimes this comes across as leadership, sometimes as a Bossy Bessy doll come to life. But the fact of the matter is, she’s good at taking charge. She’s still working on finessing her approach, but she’s good. And a large part of that comes from being the eldest in her Sistred and having been given the opportunity to help out with her sisters in a variety of ways. No she’s not obligated to do any particular thing for the Quail (or Sugarplum for that matter). But she sees the intrinsic reward in being a helper. Her teacher told us unprompted-

“I’ve seen Zuzu with her sister- she’s so attentive and kind and patient- that carries over into the classroom- it’s what we see with how she is with the other students- she is good with them. If I need help- I know who to ask.”

This isn’t a one time compliment either. Her dance teacher used to praise, “If I can get Zuzu to her mark- the others follow, so I focus on her. She’s my helper.”

And last year in Kindergarten, “I always give the substitute teacher Zuzu’s name, if I’m out she could run the class.”

And in her daycare, “I hope you don’t mind, but I’ve asked Zuzu to help teach him his site words.”

And Zuzu, when she tells me her version of the above examples, it’s with pride, self-confidence and expectation. Like any seven year old- she has her moments where she’d like no one to touch her toys, her clothes, her homework. She has her tantrums, her whines, her complaints. But more and more, that’s not the sum of her, more and more I see that she is showing the world what she is capable of and what she knows about how we treat others.

The impact on Sugarplum is yet to be seen, but to date I can say she’s the most light-hearted of all of us. The one quickest to smile, the most content, the most laid back, equally strong-willed and equally happy to take part in her sister’s antics.

The truth is, all three girls are an integral part of our family.  Our lives are chaotic, crazy busy and we have more to do than time to do it. And I wouldn’t have it any other way. Except, maybe with a few more hours of sleep and a few more home-cooked meals….

 

One tip (information on something related to Ds/raising a child with Ds/or just parenting in general).  That’s not to say that you shouldn’t pay attention to the impact of disability within a sibling group. You should, the truth is that it isn’t a given that it is a bad thing. How each child responds to the fact of disability in their home though- that is something to help them understand and work through if you notice they are struggling. There are a lot of resources out there- but one of the most helpful is the work of Dr. Brian Skotko. Below are also some links to research regarding siblings and Down syndrome.

http://www.down-syndrome.org/research-highlights/2043/

https://www.ndss.org/Resources/Caring-for-Your-Family/

http://www.sheknows.com/parenting/articles/981881/siblings-of-children-with-down-syndrome

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

31 for 21: Day 20: Boundaries

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

Go:

I roll my eyes to the ceiling as I hear the squabble start down the hall.

“Momma!!!!! The Quail spit at me! I wasn’t doin’ ANYTHING!!! And she just spit! MOMMMMMAA!!!!”

Sighing, I pull my flat-iron through my hair once, twice, three times. The sound of feet running in two different directions fills the office.

Just as I see the ruffled edge of the Quail’s nightgown through the cracked bathroom door I hear another door slam and Zuzu scream in frustration. Leaning my head through the door I look the Quail in the eye and raise my finger to my lips. She answers in return with her own raised finger, “Shhhhhhh….” Too late, the baby cries out from our room and we all stand still as statues pretending we weren’t the one to make that last sound that roused her. I want to tell Zuzu to stop storming. I want to tell the Quail to never spit again. I want to tell them both that it isn’t even 7 a.m. yet and I haven’t even finished one cup of coffee. I want to drink three cups of coffee. I want to send them all back to bed and start over.

Instead I reach out and the Quail’s hand locks in mine automatically. “Come on, come say sorry to your sister.” I feel the slight pull as she considers refusing and the release as she decides a stern Momma’s attention is better than none at all and follows me silently back to her room.

When to intervene and when to let them work it out is a riddle to me. I talk too much. I say the wrong words. I say them too loudly. I say them too often. I nag. I coddle. I cajole. I threaten and I warn. I take away privileges. I step in. I turn away.  I say I’m sorry. I instruct them to do the same. I lift them up and I let them go. I mother. I parent. I boss. I love. I’m at a loss.

Zuzu, she’s bossy with her sisters. And she’s loving. Her voice has turned from hard edged to charmingly coaxing when they aren’t following her pied piping these days. She takes the model of her kindergarten and first grade teachers and plays out her own school days in little dioramas of her toy-filled bedroom. The change is noticeable. I’m fairly certain it hasn’t come from my instruction either. She’s learned the power of honey over vinegar and is harnessing it in her own time. Still ever so delicate in heart, she’s not one to be mean. Bossy. Instructive. In charge. Yes. Mean no. When someone takes her toy, calls her a robot, says they don’t want to play My Little Ponies or Barbies, her heart is truly crumpled and she pulls back with a sour look until she can find her way to melt back into your side.

The Quail on the other hand. Is usually the first to follow the teachings of Zuzu. Where Zuzu goes, she goes. What Zuzu does, she does. What Zuzu eats, she eats. What Zuzu dresses up as for Halloween, she dresses up as for Halloween. On the other hand. She’s not one to be told what to do. That decision to take her sister’s lead- that’s all her. Should Zuzu take her toy. She shouts No and takes it back. Should her sister’s turn on the swing go on too long. She stares her down till she “chooses” to give her a turn. Should someone say she can’t come in the sandbox to play , she pulls their pigtail down to the ground and sits on them. Should her sisters include her in what they are doing, her grin cracks wide open lighting up her eyes and the hearts of those around her. She may not always be able to articulate exactly what she wants, but she is crystal clear in what she loves and hates.

And then along came Sugarplum. This sweet and quiet plum of a baby woke up one day this summer and came into her own. What was once a quiet, serene, easy-going little sweetie-pie was no longer willing to give up her toys and books at the whim of an older sister.  Much to everyone’s surprise one day when the Quail sat down on the pink Dora couch next to her and reached over to pluck the book she was looking at from her pudgy hands, her own cheek was met with a small slap and a quick, “No!” The pause in the room was palpable as Zuzu looked up from her Ramona & Beezus chapter book and the Quail let go. Even Sugarplum seemed surprised at the effect of her small might. 

Strong-willed they say. In equal yet different parts. The Venn diagram of what that means in their relationship is still being worked out among them.

For now, we kneel down between this triad and issue reminders that we don’t hit, we don’t spit or bite or sit on our sisters. We are kind and gentle and helpful to our family and friends. That it is ok to be angry, and to be sad and to be scared and frustrated. But it isn’t ok to take it out on each other or to take what’s precious to one another away. We ask for a turn. For now, we hug and sign our apologies and move on with our day. Until the next storm comes, the next squabble erupts; the next rascaling match needs to be broken up and sorted out.

Stop.

31 for 21: Day 19: Thank you.

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

I sit here grinning ear to ear as emails pop up on my work computer screen with a multitude of compliments on how gorgeous our grinning four-year old is from people around the state that I have never met before.

I wasn’t sure I could do it. I wasn’t sure I could or should step out of my comfort zone and ask the state Commissioner for Vocational Rehabilitation to sponsor a statewide fundraiser for the local Buddy Walk. With all of my experience advocating for people with disabilities, my vulnerability rises to the top when it comes to putting myself out there still. It’s one thing to do my job. It’s one thing to step in and facilitate a situation that I see my children needing help in. It’s one thing to donate my own time, money and energy. It’s something else entirely to put yourself in the position of asking others to help you.

Three years ago a co-worker who had just finished coordinating her own Jeans Day Fundraiser at work stopped by my office to ask if I had considered coordinating one related to Down syndrome. She noted that our commissioner and our senior staff were fond of these fundraisers as it was both a great way to boost morale, to come together as an agency and to contribute to our community around us. Everyone enjoys wearing jeans to work and for a mere $5, a person could make a donation to the sponsored charity and together we would as public servants stand with those in need in our community. I smiled and said I would try to put something together. The next year she stopped by again after another successful fundraiser and mentioned it again. Again I smiled and made a note to draft a letter requesting this. As a family we had participated in our local Buddy Walk before. We had made our own donation, just as we had happily donated when friends and family asked us to with other charities. There is a sense of power and benevolence that comes with being the giver- it makes you feel good about yourself and the larger community you are a part of. There is a sense of vulnerability that comes with asking for help. And as the mother to a child with special needs, there isn’t much time for vulnerability in my day or make-up. Last year I managed to put together a blog post and share it on Facebook. I kept it up in the weeks preceding the Buddy Walk and by the time of the walk last October, our friends and family had come together to donate over $600. As a family we were humbled and awed by their love and support. Because as vulnerable as you feel asking, the warm glow that fills you up when you get the note of a new donation outweighs it. Just before last year’s walk I put together my proposal and sent it off to my supervisors who kindly approved it and passed it on to the Commissioner. A few days later I received a phone call from the administrator for the Commissioner exclaiming over the proposal. She told me she was putting it to the top of her list for the coming year and that it was just what the intent behind the program was- to support our family of employees in their communities. I was thrilled.

As the details got worked out and the date grew closer the email announcement of the fundraiser was sent out statewide. Within the first hour I received the first of several emails:

“You don’t know me, but I just have to reply…  Your daughter is beautiful, and I love her happy smile!  I am glad to participate in this one!”

I grinned and sent a quick thank you for her kind words. 30 minutes later came the next one:

“Hi Nicole – I work in Human Resources – I walked in the Buddy Walk here in Columbia a couple of years ago in support of Lily who attends the school my kids go to.   Love to support this organization!!”

This time a tear welled up. As the fundraising day grew closer I received a couple more and quietly grinned at the framed picture of our Quail on my desk. How far this little girl had carried me from being the new staff member fumbling through my back-breaking stack of training manuals  ten years ago to today.

Over the next several weeks the donations arrived and folks stopped by to check in and see how it was going. In total we received $1210 from SCVR. Friends and family also donated an additional $500.

When the donations finally trickled off I put together a thank you email to go back out to the staff. It’s hard to express the deep, heartfelt appreciation that had grown for me over these small acts from individuals that I both knew and didn’t know without it sounding cliché. When the thank you email went out it of course included pictures of our girl- both at the Buddy Walk and my current favorite that to me exudes the light and spirit that makes her up. The email went out at 2:15 pm.

At 2:47 I received:

“Every hair on my body is standing on end as I read your heartfelt comments, Nicole! What a lucky child is darling Abby to have  a mother like YOU!”

At 2:51:

“These are great pictures that really capture her personality.  She is so beautiful.  Thank you for sharing.”

At 2:57:

“She is so obviously devilish.  A real cutie pie. “

At 3:06:

“She’s so pretty! You and Charlie do good work!”

At 3:08:

“Hello.  If those pictures in the Jeans Day email you sent were of your daughter, I just wanted to tell you she is absolutely beautiful.  The picture of her with hands by her face is precious.”

At 3:09:

“Is that your little girl in the pictures? She is like the cutest thing ever! She is so precious!!! ( I have a little girl too, I’m very impartial!) ;)”

At 3:14:

“Abby is beautiful.  I miss your work newsletter—I was able to watch her grow :)”

At 3:22:

 “Absolutely adorable—go Abby!”

The simple act of those words- these people having taken the time to send encouragement, love and kindness to someone they don’t know after having given already of themselves.. .I was floored. It’s not professional to tear up at work. That said, the human kindness in a place of business letting you know that they see you and your family in a time of need- is priceless. Sometimes you have to push past your comfort zone to find an even softer place to land.

I know I did.

I am so very grateful to all those out there that took the time to stop, read about and look at the face of a child, our child, who represents both herself and the larger community.

Each person who sent in $5- together it added up to well over $1000 worth of support that will go to further advocate and encourage awareness on behalf of those with Down syndrome and their families. Not only was money contributed by these efforts but a sense of community grew out of it. As the mother of a spunky four-year old who has Down syndrome I am heartened by all of the generosity, support and kind words of all of you. It’s this awareness, support and inclusion that is changing the world we live in ensuring that individuals like the Quail have every opportunity. The fact that this extends beyond her is a wonderfully synergistic  and reciprical opportunity that benefits both those who gave and those who receive.  It shows our community of people who my work serves on a daily basis the heart of the workers processing their claims as well as putting an actual person to the claims that pass over their desks.

From the bottom of our hearts to the top of yours. Truly, we are humbled. Thank you.

To those that still wish to donate, Abby’s Buddy Page will be staying up year round:

http://www.dsfagreenville.org/buddy_list/abigail_starkey.html

31 for 21: Day 18: five minute friday: laundry

…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:

“Pur-ple.”

“You want to wear purple?”

“Yeah.”

She grabs my finger and starts to drag me from the Keurig, down the darkened hallway and back to her room. The Ikea dresser drawers are pulled open and the rainbow of shirts now sit half in and out. Her sister snores softly from the nest of the bed they share, tangled in the cranberry and cream striped afghan my Grandmother had made decades ago. Continuing to sleep despite the overhead light and company.

Pulling the red canvas stool over to the drawers, I settle in for the conversation. At first glance I see no clean purple shirts to make this morning’s dressing go smoothly. Pulling the reds, yellows, gray and pinks out of the drawer I start to look more closely for a purple star, stripe or polka-dot to appease her before she dives into the dirty laundry pile for yesterday’s  purple Wonder Woman shirt. Last year we would come together daily for this dance over yellow. It got to the point where as her birthday neared, Lovey and I scoured the internet for a pair of yellow sneakers. Something to support her still-learning-to-run-and-jump feet in the favored color that would keep all of our dispositions as equally sunny over the daily request as the color itself. Eventually we settled on pink sneakers with some striping. The best we could do.

Of course, then, they weren’t purple. As summertime rolled around the purple consignment sale Crocs became her daily ware and kept the mornings tantrum free. Until, the back strap broke. And we all cried just a little.

Pushing the shirt drawer closed I suggested we try for purple pants.

“Yeah! Pants. Purple.” reaching over my hands, she grabs the purple shorts on top. As I look up I try to remember what the fall forecast calls for. Here in the south, come October, our mornings are awfully chilly, but by afternoon the shorts would be fine.

As I lean down to stretch them wide for her to slip them on, her still tiny starfish hands press into my shoulders and her forehead bumps up against mine. “Momma. My Momma.” She pauses to wriggle her way into my lap, forgetting the shorts and the pressed time of a weekday morning. This time I stop and pull her up just as Zuzu starts to yawn and stretch.

“Rise and shine, and give God your glory-glory…” The childhood song rises up from my memory and throat with Zuzu’s strawberry blonde head as she crawls out of bed and presses herself grumpily into our circle. The Quail realizes we’ve shifted onto her purple shorts and starts to protest. Zuzu grunting, presses in between the Quail and I harder. Separating them, and myself from my temper; I hug Zuzu and ask what color she wants to wear today. She says it’s too early and she thinks she should just stay home. I agree it is early, but that tomorrow is a home day, today is a spelling test. Surprisingly this redirects her into chatter of her new reading group, the field trip pictures Ms. Jensen showed on the pro-board, last Friday’s flu shots and a pair of striped shorts. The Quail flings her yellow nightgown on the pile of laundry in the hall and runs to the kitchen…

”Dada. Bite-bites. No Momma.”

 Zuzu runs to the living room avoiding my instructions to start brushing her hair and I pick up the scraps of laundry along with myself and head out into the day.

Stop.

31 for 21: Day 17: understand

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

Go:

“Momma- you can’t bring a beard on the field trip tomorrow. Here’s a milk instead.” I was cleaning up the kitchen while Zuzu packed our lunches for our first field trip together with school. She’s been bustling with excitement that I was going to chaperone for a couple of weeks now and this evening had gotten serious with me over the do and don’ts of good parent chaperoning in the audience of her beloved teacher.

“Beards?”

“Yes- beards- you know- what you and Daddy like to drink.”

Ah yes- those. Good thing she thought to mention it, considering the risk of her mother bringing alcohol on her first school field trip with her first grader.

And with that a new entry in the family dictionary was born. You know the family dictionary, the words that your family uses regularly for everyday occurrences, certain that the rest of the world does as well? Ours includes the likes of Sistred, rascaling, story-time manners, monstering, monster-spray, seat-cart, cramera, and now beards. These were brought into our days mostly by a pint-sized Zuzu. The one whose chatter starts before the sun comes up and before she could actually speak. As Sugarplum has now entered the pterodactyl stage of toddlerhood (You don’t refer to 9 months on as that in your home?) she’s taken her sister’s lead and jumped headlong into silly strings of jibberish that can only be described as having been modeled after Brad Pitt’s lilting British Pikey accent from the movie Snatch. Much like when I saw that movie, sub-titles, would be helpful. To date phrases that have been puzzled out like “I don’t know.”  and “It sure does!” in response to my clucking are a wonder to hear in this little person after having adjusted our expectations to the apraxic speech development of the Quail.

While we live with and understand the motor-planning difficulties that the Quail works hard to push her thoughts through into our understanding; we’ve become so accustomed to apraxia’s theft of our child’s words that I find myself still routinely doubting the permanence of the words the Quail and Sugarplum contribute to our days. Early on I breathed in a small circle of words from the Quail’s sweet mouth to my ears, “Ove you Momma.” One time. Over three years ago. As she laid her head on my shoulder while I carried her sweet sugar-sacked body into bed. And still I wait for those words to come again.

I know they will. Eventually.

Eventually she will speak them in the same manner that other non-apraxic 46-chromosomed little ones do. For now though, we create ways for our family to understand each other in less traditional means. With naming and telling of the Sistred’s antics to show them both uniquely and as a whole to ourselves and our community. Through rascaling-bear- cub sister’s antics where half-nelson’s are gentle enough for half-pints. Through story-time manners where there is always a free hand to lasso the chubby leg of our littlest pterodactyl as she trustingly edges her grinning self over the cliff of the bed-rail- again. To tickle-monstering sneak-attacks when a grown-up sits unawares blogging or philosophizing. To gingerbreaded- monster sprays that protect the nights and dreamlands of the biggest sister who is still little enough to be protected by her imagination.  To patience and room for sisters to teach and help each other as one explains how to buckle into her seat-cart when another one insists on doing it themselves after pushing away their frustrated parents hands. With both silly and paused hugs offered up for the stills and stories captured and shared from Momma’s cramera . 

With arms circled tight around my neck as a wriggling four year old, chants with soft pride- “My Momma, My Momma” again and again after months of articulating work with her Daddy on her /m/ sound and is answered with, “I know. I love you too.”

Stop.

31 for 21: Day 16: Corner View: last but not least

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:

“Do you think the Quail understands that you’re having another baby?” The teacher asks doubtfully as she eyes my obviously pregnant belly on my way into pick up the girls after work. She isn’t the first to wonder this and even though we haven’t hidden the coming household changes from her I had to wonder myself what the Quail would think about no longer being the baby of the household. Pondering about these familial shifts while being oh-so hormonally pregnant had never gone well for me. I distinctly remember crying to my own mother over the phone when I was newly pregnant with the Quail over Zuzu’s impending fall from grace- her change from the one and only to the elder. From being the center of all our attention to now being part of a set. Now the Quail would shift her role as our fawned over baby to the middle child. Now we would meet a new little person who while, so very similar to ourselves and our girls would in equal parts be her own little individual self. Her future self unknown to us. The discussion of this upcoming baby was a daily event. Plans were made for what we would call her, where she would sleep, what she would eat, what toys the girls felt willing to share, where she would go to school. Zuzu talked endlessly about her coming baby sister while the Quail listened on to these discussions, unable to actually put words to her own thoughts on the matter. The Quail, she learned quickly to sign and say baby, to pat my belly along with her sister, to whimper and bear witness to her Momma’s morning sickness as it morphed once again into all-day sickness. And then one day, a mere week from my impending induction it occurred to me that more important than the upcoming introduction to this little one was the notice that Momma & Daddy would be gone for a couple of days while Gramma took over. As far as the Quail new, the talk of Gramma’s visit meant an extra person to pour the kefir and read Chicka-Chicka Boom, Boom; not two less.

As we sat on the bathroom floor in the evening light, brushing her teeth I started to say the words that I dreaded, that in a little less than a week, Momma & Daddy would be going to the hospital to get this baby out and bring her home to keep. How Gramma would be staying here with her and her sister just like she did when we went to the hospital to bring her home and again when she had surgery on her belly. The Quail, as I talked, her bottom lip took its signature position pushed out from the top as her eyes welled up and she reached her arms around my neck tight. Then just as quickly she leaned back, patted my belly and signed baby. Finished with our discussion she hurried around me to her room pulling her duck-duck lovies behind her, ready to sleep.

The next week we finished our Easter Bunny cake decorating and went to the living room to start Barney. As we loaded our bags into the car Gramma sat with one girl on each side. Assuring us that all would be fine.

Later that night in the hospital room I laid on my side feeling Sugarplum, kick, kick, kick her way around my belly as the monitors recorded her sweet heart and my contracting middle. I wiped away a tear knowing that this letting go and growing was just part of life. Our life, as a family. That these moments of tears would wipe clean the space where another heart was to live. That our family would be complete with the arrival of dear Sugarplum, at last, but not least.

Stop.

31 for 21: Day 15: new

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

Go:

“Please, please, please can we go on the kid rides now?” Zuzu pulls at my sleeve as I push the stroller down the crowded street. Lovey warned me not to mention the option of the festival rides before we actually decided if they were ready to try this new thing. This was the sixth time she had brought it up if it were the hundredth. I suggested that we split up and I take the two older girls over to the rides to see how much they cost. I grabbed two sheets of the tickets and we headed over.
 

As the ferris wheel turned in front of me I grinned up suggesting we all go on it together. “No.” came the uniform chorus in response as they both turned in opposite directions heading over to the ride they wanted. The Quail eyeing the carousel, Zuzu eyeing the balloon lift. I looked back to see if the others were close and couldn’t find them in the crowd behind me. Leaning down into the girls’ excited chatter I suggested said that we could ride one while we waited for the others and then we could see if they had more tickets for a second ride. When they settled in agreement to start with the balloon lift I reached over to tap the operator on his broad shoulder. “So- 6 tickets each- do parents have to pay as well?” A curt nod as he slowed the motor told me that if they were to go it would be without me for their first ever fair-ride. I started to suggest that we wait for Daddy to bring more tickets just as he opened the gate to release the over 36 inches tall group of independent boys and girls ahead of us. Zuzu grabbed the Quail’s arm and they sprinted through the gate as I noted that indeed the Quail met the height measurement to ride alone. Zuzu in all her big-sister-helper-gloriousness shoved at the Quail’s bottom trying to push up onto the too-high bench in the blue and white ballooned bucket. The Quail seeing the actual size of the ride up close kept herself squatted down close to the ground. As the operator came to shut their gate Zuzu scurried in and the Quail looking up at the tall shadow looming over her raised her arms obediently for the official boost.

The ride set to a slow spin and both girls grinned as Sugarplum, Daddy and Cyrena took their spot by the gate to wave and watch. As I took a sip of the beer they had brought over I noticed the operator looking back at us and then across the ride and back to his controls. He stopped the ride and sauntered over to where the girl’s bucket hung in mid-air. The Quail’s screams just reaching us as I realized he had stopped the ride due to the Quail’s protests. As she looked from him to us she clamped her mouth shut. Shook her head and signed more. Her communication- brief and clear. As was his- you scream- I stop the ride. She seemed to sink back and loosen her grip on the pole holding up the plastic balloon as he switched the motor back on. This time as her little hands tightened around the pole we tried to coach Zuzu who remained nonchalant over her sister’s quick terror, to please help her- put your arm around her, comfort her, hug her, something. As the Quail’s pitch hit the high crescendo Zuzu draped one arm on her shoulders, the operator turned to look at me and I just shrugged. A full minute later the buckets lowered back to a smooth circle rhythm and the Quail’s face flipped like a switch as she let herself be pulled out by me. Zuzu ever the adrenalin junkie headed over to a row of bounce houses with a Quail quick on her heals shouting now not in terror, but in affirmation. “Me. Bounce. Me. Ride.” as we sighed, shaking our heads , quickly following behind them.

Stop.

31 for 21: Day 14: talent

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

Go:

“Momma- remember my talent show last year?”

“Which one?”

“The one at afterschool- where I did gymnastics and concentration.”

“Mmm-hm.”

“Well next year I’m going to do hula-hooping. I’m really good.”

“You are.  You’ve been practicing. That’ll be cool.”

“Well- next year the Quail will have to participate too. I was thinking about it and I think she should do talking.”

At that I stopped typing and looked up at Zuzu from my computer. “Talking? Why talking?”

Truly I was caught off guard by the suggestion that the Quail’s ability to talk was her talent. Both that it seemed a talent to her sister and the fact that we have spent the last three years absorbed by the lack of her ability and trying to rectify that. By definition- her talking is no talent.

“Because she has Down syndrome and she works hard to learn to talk like I learned to hula-hoop. You and Daddy practice with her every day. You and Daddy will have to come to the talent show and show everyone how she does her bite-bites. No one knows what bite-bites are. I told Makaylah about them when she asked why the Quail doesn’t talk. I told her she does talk but it’s hard for her and you have to know her like I do to understand her. I showed her how to know what the Quail is saying.”

Just as she leans down to zip up her new purple boots the Quail wanders into the office and wraps her sleepy arms around Zuzu, wiggling her head into her stomach as she squeezes her tight. “Come on- Quail- let’s go play school- I’m Ms. Dobson- you go get your backpack to hang by your cubby.”

“Kay.” The Quail lets go of her and runs over to give me a quick explanation signing as she presses the words out with intention from her soft round mouth, “Zuzu. Me. School. Play.”  

As I turn back to the computer, I hear them giggling through the hall back to their daily business at hand leaving me with a new perspective on what real talents live in our home and in these girls. These girls that get to take for granted their hard work and natural inclinations and each other. It’s easy to forget how much of your own beliefs and views your children naturally absorb each day and on the other hand, how much you can learn from them when you pause to listen.

Stop.

31 for 21: Day 13: full

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

Zuzu was just about 12 months old the first time it happened. She stood in the carpeted hallway staring unhappily up at me as I answered her request for another cracker with a not right now. As she wasn’t going to stand for it, she oh-so delicately laid her small body down, ensuring not to bump or bruise herself and set to wailing and kicking after a quick glance in my direction. My lips turned up as I turned away to hide my laughter at her first tantrum.

Within a year it was not nearly so cute and the next year after that it was downright infuriating. These days when the fury bursts from her you can feel the floors shake as she stomps her twinkle-toes sneakers back into her bedroom.

But we knew it was normal development emotion-wise and set in for the duration. Like clockwork at her next half-year mark she would set into a new range of developmentally expected behaviors that would ease up as her birthday approached. Convenient isn’t it?  The sudden return to being a sunny little bout of sunshine just in time to ensure a good birthday gift or 12. Downright Darwinian.

Then along came the Quail. We had read and bore witness to a series of offhand comments about “those kids”. You know God’s angels, the sunny, happy-go-lucky carefree children who never get angry? The passive full of light and good cheer children who didn’t know any better than to just grin at you and passers-by? Even though she showed a full range of emotion, these images held enough water to make me think that perhaps the personality trait of cheerfulness itself resided on that 21st chromosome and that our Quail maybe did have a little bit extra. 

That is until about the age of eighteen months. When, one day, the Quail sat happily humming into a plastic microphone in the sun-filled living room. When in skipped Zuzu who also had a song on her lips. Zuzu donned her sweetest “Momma” voice and leaned in to pry the microphone from her sister’s hands. The Quail, she gripped that tiny pink cylinder of plastic firmly with one hand, placed her other little hand square in Zuzu’s face and hollered “STOP!”  Zuzu was crushed as we turned away to hide our giggles and mental high-fives at the Quail’s newfound feistiness.

Enter a year later. And yes, there has been all the typical naughtiness you expect from a pre-schooler, laced with just enough mischievous sparkle in her blue and Brushfield spotted eyes to keep any grown-up from disciplining her too sternly. And then one weekend, perfectly timed with just enough of a snot-filled nose to make us question the origin of her fury; also timed perfectly within a month of her turning 2 and a half; our cheerful little helper, one day out of the blue refuses to pick up her crayons. Not only refuses, she stomps her foot (which we silently applaud since up until the last few weeks her balance wasn’t sturdy enough for her to not topple over in the attempt) and then goes in for the kill. She kicks over the little yellow bucket of crayons she’s been directed to fill. Silence fills the room, as she waits for our response and we wonder briefly at the skill of the kick and the pile of colorful crayons spewed across the black rug. Then she gives her age-old gesture of discontent- a version of flipping us off with her arm and attempts to leave the scene of the crime. I return her to it, with low firm instructions, no longer humming our clean-up song. She plops down, fixes her glare on the rug and growls. This continues for another minute until I’m clear she isn’t going to clean up her mess and so off to time-out she goes as an angry wail fills the house. Finally, shuffling slowly back in, head hung low, bottom lip bird-perched out and her hand sorrying circles on her small heaving chest she bends to pick up first a yellow, than a purple crayon and drops them squarely back in the pail.

Typical pre-schooler right? Shouldn’t have been so surprising. Except we’ve been marveling for months at how much the Quail enjoys helping grown-ups clean-up and this seemed to blow in out of nowhere. Apparently someone forgot to inform her of her abundant cheer that her syndrome relies on. A series of similar versions of the story ensue over the weekend involving, animal puzzle pieces, Cheerios and far-flung cups of kefir. Enough so that by Monday afternoon Lovey declares she’s going to the pediatrician tomorrow. I agree, this behavior is unusual. We know one ear tube came out a month earlier and she’s had a cold for a week and we have entered cold and flu season without the start of last winter’s daily breathing medications. She probably needs to start up her pulmicort and maybe an antibiotic or two.

The next day Lovey calls me at work. “She’s fine.” She’s up to 30 lbs 15 ozs. Her lungs and ears are clear. It’s a cold. That’s all.”

We both sat calmly contemplating what this banal diagnosis really meant. It may very well have been our first visit to a pediatrician that was met with the response of nothing here to see folks.

What it meant was that our ordinary child, was not filled with that magical sparkle that would cheer her all the way through her angelic life. What it meant was that she was developing socially and emotionally on time.

What it meant was we couldn’t be prouder.

What it meant was that we needed to buy a second plastic microphone and keep the bucket of crayons up off the carpet.

Stop

31 for 21: Day 12: lonely

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

Go:

“Momma- She wants me to come over. Here’s her phone number- call please- please can I go? We’re not doing anything- please, please, please?”

It’s not the first time. Although it is one of the first. Our family- we don’t separate well or often for recreation. But it’s starting. The calls, the emails and invitations to birthdays and playdates that are for only one of our children. Zuzu. And I understand it. I understand how it is hard to connect to a child who doesn’t easily speak. I understand that it is intimidating to think about inviting a child over to your house that is labeled as having special needs, and not their caregiver. I understand that sisters don’t share everything. I understand that people’s lives are busy. I know ours are.

And yet.

When we meet up with our pals at the zoo, or a park, at their house or ours, when we go out to eat, to a festival or shopping, these are the things that the Quail lights up over. She is up for it. She knows when plans are being made and her little hand rises to her chest in that plaintively voiced question,

“Me?”

She hesitates only briefly waiting for the answer she has come to expect from us in her four and a half years on this planet, “Yes Quail. Yes you can come.”  Before darting down the hall to dig her purple crocs out of her shoe box.

Last year when the question came regularly on early morning weekdays I was able to quell her concerns of being left behind by going over the schedule for the week while I faced her on bended knees. “Not today Quail. Today you go to Ms. Kip’s with Daddy for gymnastics. Tomorrow I’ll take you to Ms. Renee’s for school ok?” Her response a happy. “Kay” as she turns back to her Cheerios and raisins and resumes spooning more into her small, now-smiling mouth.

Then one weekend Zuzu was invited for her first sleepover. She spent the days leading up to it talking incessantly about what she needed to do to prepare, to pack, to be mentally and physically ready. The day of the sleepover her red ladybug sleeping bag and little overnight bag were packed and placed by the backdoor before the sun came up. The Quail, when she came to the kitchen saw it and ran to her room to grab a Dora backpack and quickly started shoving her jammies, her duck-duck lovies and a new pair of Elmo undies in it and raced back to place it by her sister’s. When I turned from the coffee maker and saw it there, a tear welled up knowing that this was going to be the first of a long string of conversations about why she couldn’t go along. Conversations that naturally happen with any group of siblings and friends, but conversations that ring with an extra tinge of sadness in my ears and heart as I wonder when she will have her own turn.

For now, though, we take it one activity at a time. As Zuzu packs up her pink purse to head over to her friend’s house for pizza and a movie Lovey pulls Clifford off of the bookshelf and invites the littles into his lap. When he is ready to run Zuzu to her friends, I move into the living room to ask if anyone wants to watch Barney. The cheers of the girls drown out the closing door and car engine starting up as I wipe my eyes and pick up the Netflix remote.

Stop.