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

Posted on October 16, 2013 by Cole | 8 Comments

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!

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

Posted on October 15, 2013 by Cole | Leave a comment

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

Posted on October 14, 2013 by Cole | 4 Comments

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 12: lonely

Posted on October 12, 2013 by Cole | Leave a comment

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.

splash!

Posted on September 26, 2013 by Cole | Leave a comment

This set of pictures of The Sistred embodies all of who they are in this world I think: joy, movement, spirit, togetherness and individuality. Enthusiasm for the tiniest moment and jumping fully into that moment with all their might.

I took these much earlier this summer. It was Lovey’s birthday weekend and we had just finished up the second celebration brunch and wandered down to an area in our neighboring town that turns on this fountain when the weather is nice. The girls piled up their fancy dresses, poured on the sunscreen and just let loose.

With my apologies to Mr. Joel….

Posted on September 3, 2013 by Cole | Leave a comment

…but sometimes a tender moment just can’t be left alone. Sometimes, at least when I get to bare witness to it I just can’t help but try to snap it up. You know, in picture form.

Tuesday before last was the first day of public 4k for the Quail. She has been so excited to go back to school and asked after it quite regularly. The other day as I was driving her to daycare we passed a bus on the road and I only noticed it because of her chortle, ” School Bus!!!!”

Last year at this time I was completely overwhelmed by the start of public school for our two oldest girls. It was more emotional for me than I anticipated for a host of reasons. This year for the most part, the start of the school year has gone smoothly. There are still a few unanswered questions we’re working on in terms of the Quail’s IEP. At this fall’s first meeting unfortunately I couldn’t bring another cheesecake, with the extent of food allergies in kiddos these days the school went with a school-wide no bringing in and sharing of food policy, and, well I like to be policy compliant 🙂 So as this school year starts, I’m trying to have a bit more faith in things working out and at least adjust my expectations that we are all now on the same page and working towards the same goal until I see otherwise. The teachers and therapists seem genuinely happy to be with our Quail, she seems to feel the same and the IEP is sufficiently detailed for now. In fact, last night I had reports from both private and public 4k on how participatory and well the Quail was doing. What really made my heart swell though, was a note from the public 4k teacher that in addition to the positive report added a line, “Thanks for pressing forward against our concerns.” So last night when I unpacked the girls backpacks and we pulled out the daily book that is sent home for the public 4k kiddos, we all sat down to read it. Zuzu read as the Quail and Sugarplum listened, and for that brief moment in time, I have to say everything felt normal and great. These are the moments to hold on to.

So last week, the first day the Quail was to go to private 4k in the morning, then ride the regular school bus from there to public 4k for lunch and the afternoon session and then return to the private school for the remainder of the afternoon. We hadn’t heard directly from the school bus office as to what time they would be picking her and a little friend who also will be going. It was making me antsy, but Lovey dropped her off and asked and the private school had heard from them. Later in the morning as I reminded myself that surely one of the schools would let me know if something wasn’t going well, Lovey called to ask if I had heard any updates and when I said no, he indicated he was going to call and see how the pick-up went. So…..ok, it went well. Then come 3pm it crossed my mind again to call and see how her day went, but I let it pass again figuring if something was awful I’d hear about it.

When I picked her up she was cheerfully sandy and sweaty- about how I find her everyday on the playground in the Southern summer. I asked how it had gone and staff indicated she came off the bus no problem and seemed to be in a good mood. Zuzu came bounding over about this time and let me know that she had seen Miss L, the teacher’s assistant and was asked to tell her Mommy and Daddy that the Quail had a good day and was a good listener all day. Whew.

So as we started our walk to the car the Quail started to falter and wilt. I asked if she had a good time with Miss D, she said no. Miss J? No. How about the school bus ride? SCHOOOOOLLLLLL BUSSSS!!!!! YAYYYYY!” The silliness returned for all of 5 minutes, before she passed clear out in her carseat.

We ordered happy meals to celebrate our good days and headed home. When we pulled in the driveway I turned around as Zuzu was again reiterating how good Miss L said the Quail did today and spied her holding the Quail’s hand as she talked.

Tears.

They aren’t hand holders. Not in the least. Generally they’re too busy rascaling to have a tender moment together. But Zuzu, she’s been looking forward to sharing her school with her little sister for quite some time now and I do think she is sincerely proud to have her there. When the Quail first came home from the hospital I arranged myself on the bed getting set up to nurse and in came a doe-eyed Zuzu. So quiet, so watchful, just sitting there as I lifted the Quail to me. It broke my heart as I heard her refer to Momma & the Quail’s room when just a few months earlier she had shared our room, our bed. So I invited her in to join us in tandem and she happily settled in with a quick reach over to catch her sister’s hand.

Then a couple of years later we had reports from school when the Quail was old enough to start coming out on the toddler playground that whenever the class came out and the older kids were out on their playground, you could count on Zuzu and her posse coming over to the fence that separates them to check in on the Quail and sometimes they would see the sisters holding hands through the fence.

Sisters- I think that it is the unconscious moments that say so much of their bond.

back to school week

Posted on August 27, 2013 by Cole | Leave a comment

…is officially behind us and it’s been a busy one for the Sistred. They each have big changes coming this fall and being the happy little nerds that we are- we’re excited!

Zuzu has finished up her first summer of daycamp. She attended the same facility that she always has but for her age group the summer includes additional outings and activities during the week. Last spring, shortly after we told Zuzu that she was officially signed up for her “camp”. She started fretting over where she had stored her sleeping bag. When I asked why she responded with a, “For camp of course!” We tried to explain that she was not now going to be sleeping over there and in fact she was really just going to be doing more activities with the same teachers and kids without quelching her excitement. Always a balance with her. She had fun though- her first time rollar skating, blackberry picking, she saw a couple movies in theaters (a rare treat in our house due to their ages even though I’m generally happy to see whatever as long as I have a kiddy-cup-combo for myself!), a few rounds of bowling and twice a week water days. She even got invited to the birthday party of a fellow camper who was turning 12. Once we squeezed in a second week of swim lessons, let’s just say the girl’s summer was made.

So on to first grade. She admitted she was a bit nervous and checked a couple of times to be sure that we were not going to follow her kindergarten teacher’s explicit end of the year instructions to purchase walkie-talkies so that she could be kept in the loop and at the ready for whatever that teacher needed since rumor had it that her new students were much younger and wouldn’t know half as much as Zuzu’s class. There are some days that Zuzu’s literalness gets the best of her. She was most definitely willing to lend a helping directive or two to the new class. The fact that the teacher that puts the kind in kindergarten sent her a “wish you were here” postcard over the summer probably just cemented the seriousness of those instructions to her.

The other major concern for our rising first grader was the subject of binders. She had *heard* that certain first grade teachers provided binders and that first graders were to keep track of these. She wondered often and at great length about whether or not she would need to purchase a binder, would it be provided or was the binder a teacher specific issue. When we attended Meet the Teacher a couple of weeks ago, she was absolutely thrilled to see a binder all shiny and filled on the class tables- one for each and every student. The binders contain the homework for the year. It’s an interesting system, pretty different from last year. So for Miss J’s class the year’s focus is to get a good foundation in reading and writing, so Zuzu is to read for 15 minutes each day. Then in said binder is a section for “reader reaction”, spelling games and math games. They are to complete one activity of their choosing from each category each week. There are also some baggy books that come home once a week to practice reading. Being the happy little nerds that we are, Zuzu in all her binder-exuberance dove right in and completed two homework assigments even before the first day of class. I have to say I had to squelch my spoil-sport-I’m-tired-I’m-overwhelmed-I-probably-should-have-weaned-the-baby-before-now-so-I-don’t-have-another-human-being-attached-to-me-on-school-nights- I-have-too-much-to-do-just-now-reaction.

And I did.

I know a lot of people have differing opinions on the value of homework, but right now I have a kid who is excited about it- so I’m going with that.

It’s this funny balance of practical magic that blends its way into Zuzu’s personality that amost always surprises me in the moment and then after the fact I find myself nodding along and thinking, “That’s about right.” The binder joy was not unlike the way she organizes her “facts, rules and routines” along the lines of “writing, not a wishlist/letter to Santa in, but rather placing a rather detailed, terribly specific order; that TJ the Elf must have a very good reason for not having landed in a new spot the next day from where she last saw him the night before; that the Tooth Fairy has made a big mess with glitter like they use at school all over her bed-it’s not fairy dust Mom and that the rascally leprechaun that left green footprints on our kitchen table leading up to the “That’s not gold, it’s chocolate coinsin foil wrappers Mom” in March had gotten into the paint left out on the front porch after her and her sister’s were done painting the day before, rather than being willing to believe he is just green and was barefoot when he left a pile of loot straight out of that pot of gold at the end of the rainbow. She was more excited over the homework binder than the magic spell packet the teacher had made for each child that indicated once they squeezed the playdough and repeated the rhyme if it turned another color, they were certain to have good luck for the year. Mind you, she believed enough to locate a packet that was in her signature color of pink and to work the dough thoroughly enough until she was certain it showed enough of the good luck magic and then excited enough about it to pack it in her backpack to show Miss J her good fortune, but she did all of this while still chattering on about the best spot at home to keep her binder in so that the littles wouldn’t get into the ever-important First Grade Work. I love that kid. We all do.

At daycare they have a homework time and last year I forwarded the class newsletter on to school and homework was completed there. This year I’m not entirely sure what I want to do. I want the binder kept at home so I think we’ll send books to school and have her just focus on reading while she is there and the actual activities we’ll save for home.

The Quail is set for public and private 4k now as well. She started private last week and public starts today. Private feels easy-peasy- we love Miss J and she and the afternoon teacher Miss A are fairly familar with the Quail already. There is also another little friend in her afternoon class who will be attending k4 in the afternoon so it is good she’ll have a buddy when the big school bus comes to pick them up there for afternoon school.

This year’s Meet the Teacher night was cathartic for me. I think a bit for the Quail too since we caught her literally twirling through the halls. Last year I was completely overwhelmed by all that had to be done going to one of them. Aside from meeting the teacher, it was a new building, paying the cafeteria for lunches, a car rider line to get tags, a bus line to find out that our bus wasn’t what they meant, a school packet line, a PTA line, a Girl Scout sign-up line, volunteer training and all during the witching hours with 3 hungry, tired and over-stimulated kids.

Times two.

Because the Quail was attending the school that had the self-contained classroom, in a town 10 miles away.

Needless to say we didn’t get everything done and on the way home when Zuzu innocently questioned why we weren’t able to spend as much time at the Quail’s school as her own and why couldn’t the Quail just go to her school to make it easier, I found myself turning up the radio and adjusting the rearview mirror so they wouldn’t have to directly witness how very much I agreed with them.

This year, I intended to be prepared.

One school.

Two kids.

No standing in unnecessary lines.

And possibly Girl Scouts, if a local troop can get together.

We planned to pull in at 2:45, 15 minutes early, childless to get all the lines and training done efficiently, then run out to pick up the kiddos and bring them back for the fun- actual meeting of the teachers portion of “Meet the teachers”. We pulled up, maybe 5 minutes later than intended- to what can only rival a Who concert.

Lines.Out.The.Door. Wow.

And we forgot to bring the school supplies to drop off. Other than that, it was old hat. Not overwhelming. And frankly good to get to spy so many of our friends and neighbors- exactly the reason why you want your children to go to their homeschool.

So we finished up. It was nice to see the girl’s rooms, both were excited over the little house/kitchen centers that would be part of their day and of course we went down the hall to say a quick hello to our kind kindergarten teachers while we were there than ran off for a celebratory burrito! When she started to joke with Zuzu over helping to teach these new kiddos what all goes on I cut her off with a funny little story of repeated requests to purchase walkie-talkies.

In the weeks leading up to school we managed to fit in a couple of parent-single child lunches with the girls and a trip to our favorite “Big Sale” as Zuzu calls it for back-to-school clothes. And once again I felt oh-so-in-the-know. Growing up, picking out sweaters and jeans and tennies for back to school and then stopping off for a shared cup of cheese fries is one of my happiest memories with my Mom. Last year when I started early trying to create this tradition we were faced with left over, neon, stringy, clearanced summer duds at our usual shopping haunts. This year we skipped the lure of no taxes and held out till the next large-scale consignment sale with the promise of a Panera Breakfast treat and a run through the Halloween Costume rack to see what the options might be AFTER finding our favorite winter jackets, fall vests and a suitable amount of legging/tunic top/dress and tiger wear to carry us into the spring.

Last year the night before classes started we read, The Night Before Kindergarten, The Night Before Preschool & The Kissing Hand, luckily even with our distinct lack of household organization we were able to locate them this year too. Zuzu was a little sad to realize we hadn’t purchased The Night Before First Grade, and I have to admit I was too. I have a feeling I did and lost it over the summer, ~~clutter purging~~ time will tell.

And the littlest Sistred, well she started her preschool lessons. She moved into the Toddler room and is making herself at home with circle time, playground time, lunch-at-big-kid-tables time and now-I-nap-on-a-mat-like-a-big-kid time. She’s happy to go and happy to be picked up, if not a tad ~~grouchier~~ tired from her busy days. When she and the Quail received their welcome to the next class postcards from their upcoming teachers they were equally tickled.

The Quail also had a home visit from our public school k4 teacher and assistant. I had big plans for this visit- we had blackberries from a recent berry-picking expedition and I thought we might make a cobbler to welcome them and make the house smell homey the night before. Neat in theory, impractical for middle of the week. As it was we managed to take the trash out, put the dishes away and hide the week’s wash from public view. All in all, a good visit. And we’re excited to start the new year.

I had a dress with apples for Zuzu’s first day, but being the Fashionista that she is, it got the thumbs down and a combination of twinkle-toes, stripes and more stripes won out. The Quail chose Zuzu’s graduation dress to wear to school for her first day today. She smiled her brave smile and carried her Dora Backpack to the car leading the way for her little sister. I’ve purposely not called to see how it went. Her getting off to school on the bus, today that is.

I’m cool.

It’s cool.

But Lovey just called as I was typing this and asked if I had heard anything and said he was thinking he might call the daycare and check in to see how her getting on the bus went anyway.

And that’s cool.

Oh, and it went smooth.

five minute friday: story

Posted on August 2, 2013 by Cole | 3 Comments

…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.

photographed by mollyflanagan.com

Go:

My story is ever-changing and yet still the same, this narrative that I live and weave and breathe. What I know, what I think, how I feel and what matters to me, it stems from the same words and thoughts that once hinted at my future long ago. That was well over 20 years ago when I sat at our oval-shaped kitchen table with its smooth wood colored surface thumbing through the class catalog for the University I was to attend in the fall.

“I’m pretty social and I’m a hard worker- how about Social Work Mom?”

I still remember those words pushing up out of my teenage-heart and into my head and the unconscious nodding my head answered in reply. At the time it felt like a whim and a lark, not the life defining moment that it was.

I’ll volunteer. I’ll wrap presents for the homeless. I’ll visit the shelters and soup kitchens. I’ll work with children who have disabilities. I’ll help others.

And so my grown-up story began to weave itself out from me. Winding itself into other people’s lives and how they lived. How they are in the world and how to clear a path for them so that I and others could walk alongside rather than leading or following them.

I couldn’t see this current chapter of my story back then. I wouldn’t have even pictured this gabled home in the foothills of the Blue Ridge that my pages would unfold into. I couldn’t imagine the lives of the people I worked for as my own. Their ordinary, extraordinary lives. Lives that required others to step out of the way so that they could do the simplest thing. Live in their home. Go to their school. Shop in their community. Work down their street. Simple, ordinary, daily moments that require the commitment and love of another in order to make that possible. Things those of us without labels are blessed to take for granted in this world that is built for us, not them. The story I was reading and writing, I had no idea how one day it would be my own.

And now, now the narrative has shifted once again. The once energetic, young social worker out to save the world or at least walk beside those in it, has a clearly visible path as a parent and an advocate to take with her family. New characters are emerging. Slowly unveiling their roles to the plot. The sense of our community and their acceptance of us peels off in thin pages as we understand what has changed and what remains the same in this old world. Their personalities full of strong will and generally good cheer. The villains not hooded and cackling. No. They are more ordinary and reasonable sounding as they build fences trying to line my children’s own path into this world and their future.

My path is now the one that I had read about, but hadn’t recognized as my own. It takes shape each morning when the baby cries to nurse one last time before the sun rises. The four year old with her last wisps of strawberry blonde locks falling over her softly rounded shoulders, climbs out of her sister’s bed too early, to pad through the dark and quiet hall in search of her parents asking to start her day, to eat, to drink, to play, to go to school just like Zuzu. A school that is not yet as eager to meet her as she is to attend it. A school that requires us to sit up and focus our attention and feelings and knowledge into one kind and articulate presentation so that our daughter can walk through their door the same as her sister without the weight of the world and these reasonable-sounding decision makers pulling her into self-contained corridors.

My story, that I couldn’t have written yet, as I bumped into a soon to be Lovey while walking through a farmer’s market on a bright Saturday morning.

Our story, whose future words would float through our conversations unbeknownst to us as I would ask questions like, “What would you do if our child had a disability?” while we drove through a Wisconsin countryside.

My story, that flashed visions of dark-haired girls swinging from the heavy oak branches as I pushed the mower meditatively up and back through our mossy front yard around the abelia bushes.

My story, that rattled my nerves and my bones in those first weeks with each newborn and wild tangle of hormones.

Their story, as that once newborn kindly reaches over to grasp the hand of a new dark-haired wonder and nurse in tandem.

My story as I hold tight to Lovey after hanging up with the doctor editing the words Down syndrome into the next chapter.

Their story, as we bring home one last white-tipped, chestnut haired bundle, shifting each of their birth orders into the Sistred formation they now are.

Her story, as we sit around the school’s table on a late spring afternoon, slicing into the cheesecake flavored peace-offering and discuss how this extra-chromosomed wonder of ours will learn the ways of the world she is so eager to be a part of.

My story, I understand now, as the Southern sun sets each evening around us. The back-to-school lists now printed and purchased for two. The legal books and memoirs I will curl up to each evening as we settle into the soft, brown couch. These books, they stack up in between fairy and coloring books. Southern Living magazines and Ipads. Ceramic mermaids and bowls of speech articulation tubes and whistles. These pieces of our lives that cover our families’ worn wood table that creeks under the weight of the framed images of our loved ones. The girls snuggled under their fuzzy cuddle-uppets over brightly colored nightgowns that skim their summer legs with the day’s boo-boos and rainbow sparkled Band-Aids. Red clay stuck under the too-long toe nails.

These girls that accept their story as a whim and a lark without looking too far into the future tonight. These girls, they clamor at me each night to set down my computer, my phone, my legal books and memoirs for the last few lit minutes of their evening and read one more fairytale before bedtime.

My story.

My very blessed ordinary after of a story.

Stop.

(PS: Yes, more than five minutes worth of words. That happens some times.)

corner view: somewhere else

Posted on June 5, 2013 by Cole | 6 Comments

Childhood: that magical ability to be fully here and somewhere else all in the same wonderous moment!

Art’s imitation of life

Posted on April 30, 2013 by Cole | Leave a comment

One of my favorite bloggers had a recent post about AG dolls and in reading this post I was brought back in time for my own version of this story.

A couple of years ago, in spite of the plethora of half-naked, crazy-haired dolls littering the floor of the girl’s room. Dolls, that had been purchased and received in the last six years and had formed their own make-believe community with the generation of dolls that survived my childhood to be handed down to the eager little starfish hands of my own children. I still found myself wanting for a doll for the Quail that had Down syndrome. Problem was, every. single. doll. that was marketed for that- creeped me out. And I didn’t want to buy, what to me was a creepy looking doll and tell my daughter whom I routinely gush at how beautiful she is; that this lone doll, not the series that had already been living in her room, represents her.

This conundrum really bothered me at the time, I worried that it was springing from some deep-seeded discomfort I unknowingly harbored about the Quail and her labels. That maybe I wasn’t nearly as accepting as I assumed and presented myself as. I kept flashing back to the hundreds of pictures from her newborn days that I would skip over when deciding which to share because I thought they emphasized the stereotypes that the label of Down syndrome bring along with them.

At that same time Punky– that Irish cartoon about the girl who has Ds came out and that- that I was for. We got that and it now sits happily amongst the set of kids DVDs that we never watch because we never watch DVDS. (Shout out to Netflix: Please add Punky!) But we have it and I enjoy the show. As opposed to how I feel about all of the doll options out there.

At that same time some of the other families on-line that we were friends with because of the Down syndrome connection; were having this Spanish doll-maker named Desi adapt the eyes on these Waldorf-style dolls to represent Ds. The doll with “the eyes” was just as darling to me as the other dolls she made. So I contacted her and put in my order. With the first photo she sent of the Quail’s doll I commented that it didn’t have the same eyes as my friend’s dolls. Desi indicated that as these specialty orders had been coming in she had revised her original design and was it ok? I wasn’t sure how I felt about it- but at the same time- I appreciated her take as an artist and didn’t want to interfere too very much.

Fast forward a year and a half later when our dolls came. For Zuzu I had asked to have the eyes deep blue and heart shaped- because she is both full of heart and wears her heart so openly. The hair- Oh I was as specific as I could be about the hair. When our friend Molly had photographed our family I had swooned over the strawberry blonde locks she managed to capture of their early childhood. This, this I wanted commemorated as they aged and their hair starts to turn more like my own. She created this wild tangle of art yarn that both mirrored their style at the time and pulled out the strawberry of the blonde. I had wanted a smattering of freckles on her cheeks because those had recently begun to sprout. Zuzu, while routinely bathed in sunscreen would occasionally make it out of the house without or manage to wash it off before an afternoon of outdoor play. We would of course give the grim reminders of how darling freckles can be a precursor to skin cancer, which runs rampant in our family and Zuzu would reply how her teacher told her they were angel kisses. Sigh…

Of course we also had to have a series of accessories for the doll because otherwise it really wouldn’t represent the fashionista that is our children. Fairy wings, purses, shoes, scarves and hats. These dolls by far have a better wardrobe then me.

Out comes the Quail’s doll and with the newly designed eyes. Indeed they don’t look like the eyes of our friend’s dolls. Really, they look pretty similar to Zuzu’s dolls eyes. Much like how the Quail looks more like us than she does others with Down syndrome.

Remember that episode of Glee where we learned that Becky’s internal voice was Dame Helen Mirren? And Becky’s monologue: “You may be wondering why I sound like the Queen of England. In my mind, I can sound like whoever I want, so lay off haters.”

Well in the meantime the Quail has fallen in love with Sadie, the blonde,Target version of an AG doll. She was quite specific and insistent in which doll she loved and really, who am I tell her it doesn’t represent her right?