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.

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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.

31 for 21: Day 24: belong

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Go:

“Quail-eee! Quail-eee!” her small chants echo down the hall as I carry her from the bedroom in the morning light. During the week Zuzu and I are gone by the time Sugarplum wakes up. On the weekends though she and I are usually the last to rise. The older girls wake before the sun most days and if I’m lucky, Lovey does too and corrals them in the front of the house. Grasping the ancient glass doorknob leading from the pantry into the dining room, I feel it thread loose and come out of the door into my hand as I try to open the swollen rectangle from its frame. Swearing under my breath I hand the knob to the baby who promptly drops it with a clank to the wood floor. As we ease through the rooms where the other children sit, it’s unclear who is more delighted to see whom. The girls jump up and start hollering each other’s names with enough gusto that one would think they had been separated by weeks and miles rather than soft snores and blankets. It is clear however that I need coffee and I attempt to hand the baby over the girl’s clamoring hands into the lap of Lovey. They pounce, Zuzu leaning in too close to press her hands into Sugarplum’s solemn face.  The baby protests the release from my hip, reaching for me and hollering over the Quail’s approximations of the words describing her morning:

“Momma. Sleep. Sug. Sleep.” She signs sleep as she says it and pats the air down with her hands indicating they were trying to be quiet while mom and baby slept.

“Maddie. TV. Me. Paa” Indeed, Netflix is set to Zuzu’s latest obsession, My Little Pony and the Ipad shows a handwriting app open to the letter H. Lovey puts aside his laptop and stands up with the baby heading into the kitchen to warm a bottle for her. We trail after him the Quail chanting, “Eat. Drink.”

Sugarplum peeking back at us starts chanting again over his shoulder, “Quail-eee! Quail-eee” now safely up high on perch in his arms to call to her sister without risking being sat on in excited response.

The relationship between these three is something to watch grow. As the baby becomes more verbal, she has managed to learn the Quail’s name before Zuzus. Yet, she often seems understandably more comfortable with Zuzu’s handling of her than her exuberant four-year-old sister’s attempts to “mother”. I would guess it stems from the fact that the two younger girls spend their mornings together when Zuzu and I head out into the day. She physically hears the Quail’s name more frequently than Zuzus, so it comes more easily to her.

Yet there is no denying the bond that threads the triad together. When the Quail first moved into the one-year-old room at her pre-school she started spending her recess time out on the sandy playground just a fence away from her idolized big sister. In turn, Zuzu would frequently bring her own gaggle of girls to the fence and holler for the Quail if she wasn’t immediately there. This group of girls would keep their eye on the Quail and were loud and quick to flag down a teacher at the impending threat of a big kid snatching the Quail’s toy or playing too roughly with her. Often when I would arrive at the end of the day to pick them up my heart would be warmed with stories of how they would hold hands through the fence during their recess-time.

Then one day one of the gaggle girls approached me at pick-up eyeing my very pregnant belly.

“Ms. Cole- what if Zuzu likes the new baby better than the Quail?”

I stared at her silently, reminding myself that this was an innocent only-child’s question. Not something to be read into with a deeper meaning and concern regarding sibling relationships when a disability is involved. This was not a question of the Quail’s worth in our family, the community, our home or this school.

She simply wanted to know if it was possible for one sibling to like another more.  

“I don’t know dear. Zuzu loves the Quail AND she’ll love Sugarplum (Zuzu had already named her this by my third trimester). Sometimes sisters get along and sometimes they need some time apart.”

My voice trailed off as the friend raced back to the swings that had opened up and Zuzu came running towards me letting me know which of the therapists visited the Quail that day at school and how she had said hi to them and wanted to know when they could come to babysit her.

This past week though, a new chapter in their story started to unfold mirroring the past. As I stood holding Sugarplum to have her face wiped down her teacher told me how Sugarplum now comes to the fence and hollers “Quail-eeee!” AND “Zuzu!!” until she catches their attention and they run in tandem to her to reach their small hands through the metal into hers.

These girls, they love each other. Their relationship is tender and volatile and intimate and easily taken for granted for now. They don’t question who loves whom best and who can do what. They slow their own pacing naturally to catch each other up in their play. They carry one another, physically and emotionally. They fight. They resist. They love. They depend.

They just are.

Stop.

31 for 21: Day 22: art-work

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Go:

“You want to show Momma?” I hear the question come through the open door as I sit nursing the baby.

“Momma. Yeah.”

She comes into the living room and spying the baby in my lap, immediately drops her construction paper while she starts to wiggle onto the couch pressing her kisses up against Sugarplum’s damp head. In return, Sugarplum frees her hand from the gauzy Aden & Anais and pushes her away, half territorially, half in jest. Looking down and seeing the baby’s eyes glitter as she grins around me I decide to not intervene for the moment.  

“Show me Quail.” She climbs back down off of the couch and picks up her artwork grinning as she holds it up to me. In the bottom left hand corner is her name written with green marker in her newly developed four year-old-scrawl. The coordinating stain on her shirtsleeve confirms it as her work.  In the center is a bright orange jack-o-lantern. Cut. Painted. Pasted.

A simple piece of kid’s artwork.

Except that it isn’t quite as simple as it first appears. In reality, more work than art.

This bright, seasonal piece is the work of a therapy session. Occupational therapy. She would have been refining her fine motor skills for a good piece of the session, most likely over multiple sessions to finish this. She would have had to verbally identify the paper color with enough articulation to make her choice clear. She would have been asked what color a pumpkin is and had to locate the paint that looks just right. The painting of the pumpkin itself would have been pure pleasure for her now. If there is one medium that inspires this girl it is paint- oil, acrylic or water no matter. Pull out a paintbrush and she would even turn off Barney willingly. The fact that she can swish enough water on the brush, then visually aim the brush to the small oval of orange, coaxing her arm to move the way her mind knows it should, next coat the brush and apply it mostly within the black-pre-marked picture with ease- well that’s a testament to the amount of time she has spent practicing. Once the paint was dry enough the tough task would have begun. Holding the painted page in her left hand she would slip her forefinger and thumb into the child scissors, now the ones that she has to open and close independently, having graduated up from the ones that spring back open on their own and carefully turn the page as she cut so that her scissors are able to follow the black outline of the pumpkin. Once her pumpkin was cut out, she would have needed to be able to open the glue bottle, turn it upside down and squeeze with enough force to get the dots from bottle to page.  I don’t know if she drew in the face. That isn’t a skill I’ve witnessed yet. But once the picture was complete she would have been expected to write her own name in the corner, also a hard-earned, recent skill.

Literally years of weekly practice at what most of us would consider work. But to her- it’s art, and fun, and playtime and a pumpkin picture- just like her friends make that she was asked to sign her name to and that will spend the fall season on our refrigerator, magneted next to the family tree Zuzu brought home. Or at least it will be hung there. Considering the emerging fine motor skills of her baby sister, odds are it won’t remain for long.

Maybe- more art than work.

Smiling at the picture I ask- “Did Jodie help you with this?”

“No.”

“Did Ginger help?”

“No.”

“Ms. Jan or Amanda?”

“No.”

Finally it occurs to me that all of these skills that have been bundled into this simple picture- those would have come from her public school class.

“Ms. Lee or Ms. Dobson?”

“No.”

“Ms. Patty?”

“No.”

“Ms. Tricia?”

“YEAH!!!!”

I grinned. That was the last person I expected based on the most recent progress report we received on her IEP. It had appeared that perhaps our Quail was not being, shall we say- the most cooperative- with her new school OT. I’d been intending to send her a note, making sure she knew that what the Quail was able to do so that she wouldn’t be snowed into thinking she was not capable. The Quail, if she knows you’ll help her, she asks for it.

I’ve yet to confirm if this was the case, that she did all of this with the new OT, but regardless of what I find out, the fact of all of that work that went into this art still remains. Her pride in her work still remains. Her pride in her art still remains. The picture still remains. The promise of more to come remains.

Now- more art than work.

As I start to praise her efforts and progress, the Quail reaches over to snatch Sugarplum’s blanket. The baby roars up with her own tiny but fierce protests. Zuzu comes clamoring up on the couch grabbing for the remote. At the end of a long weekday they are back together and more pressing matters like whose turn to choose a show it is and whose lovey is being handled by a sister. I swipe the pumpkin picture up from the squabble just as the Quail lets go of the blanket. Zuzu starts up Netflix and the Quail starts chanting Barney over Sugarplum hollers for Elmo. Heading back into the kitchen I pin the picture up to the side of the fridge and reach into the cold to start dinner before the triad notices it hasn’t been served yet.

Stop.

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

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31 for 21: Day 20: Boundaries

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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.

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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.

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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

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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!

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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.