31 for 21: Day 5: pressure

Posted on October 5, 2013 by Cole | 2 Comments

Go:

Just as I arrange myself on the ground I hear little footsteps flying up behind me. First one than the other girl lets out a loud whooping roar. “Get her!!!!!!” As is not surprising, these bear-cub girls of mine pile on top of me with abandon. What is surprising is who lands first. The Quail giggles as she feels the full impact of her sister land on her back flattening us both. The wrestle. They rascal. They run together now. That Quail, she pretty much keeps up with her big sister these days, and together they slow their play, their pace when they can manage for their littlest sister who this time, thankfully has stood to the side with her hands entwined behind her back eyeing the pile up. They do this so routinely that I don’t think much of it other than to quip the old stand-bye at this point of how one day we’ll give birth to a sweet little girl.

“She was really sensory seeking today. That’s unusual for her.” Ginger the occupational therapist we’ve come to love tells me about her session. As I feel the hackles go up on my neck, ready to defend the Quail against yet another label, I, instead share back how earlier at lunch she and her sister had taken to imitating each other as they pressed up against Lovey and I throughout our lunchtime in the restaurant booth. I commented how Zuzu is prone to do this with me. That I often think she would still reside in my womb if left to her own devices, this almost seven-year-old of mine. I tell Ginger how it was noticeable that the Quail was imitating her sister with this behavior during lunch since she isn’t usually one to do that and how once Lovey left the booth briefly Zuzu slipped under the table to her sister’s newly vacant side and commenced a round of in-house dog-piling with her always-willing-partner-in-crime.

As we talk, Ginger points to the Quail who by this time has worked a large heavy wooden box across the floor and continues to press it into circles across the sleek, new floor. We pause and then Ginger goes on to say that they went ahead and did a number of sensory based activities in both OT and PT to help her center herself and afterwards she worked for a long time in quiet concentration on her table work.

Later that evening as Zuzu pushes her kitchen chair as close up to mine as she can manage without getting scolded to put it back in its place, I think back to Ginger’s explanation of the good the sensory pressure did for the Quail and find myself wondering over her sister. These sisters- they are so alike in the most unexpected of ways.

Stop.

31 for 21: Day 4: five minute friday: write

Posted on October 4, 2013 by Cole | 2 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.

Go:

I pull the tub’s drain cover and wrap the toddling Quail in her towel, just as Zuzu positions herself at the stepstool between us. “H-A-T” she recites pushing the small square of paper over to me. And there it is, in her four-year-old scrawl. She licks the graphite tip of the pencil mildly as I grin over at her.

“Was Daddy helping you write about his hat?”
“No Momma- I did it. I wrote it.”

And just like that, she cartwheeled into the world of big kids. She did it herself. Probably someone unknown to us helped her figure it out- but as far as our parental involvement was concerned her ability to write and spell and read and talk appeared like magic.

“If I make the dots large enough, she knows now to connect them and form the A. She’s getting good at it. These three were hand over hand, but this one here on the end she did on her own!” Our Early Intervention worker handed over the orange construction paper for us to pin to our fridge a few months ago. Since then they have worked diligently on the next letter in her name with a goal of fading back the prompts and her writing her first name independently before her fifth birthday.

Magic versus practical. So different from her sister’s path into big kid-land. And yet, in the end, they are both there. They’ll both learn to write, to read, to speak and to spell. Lucky for us, Zuzu is a big fan of playing the role of the instructor. Lucky us, the Quail idolizes her. Lucky them, we can take either path to get them there.

Stop.

31 for 21: Day 3: careful

Posted on October 3, 2013 by Cole | 2 Comments

Go:

“Hot Momma.”

Her hand passes over the top of the warm cupcake as she looks up at me making sure she is right. The cupcake is hot. It is fresh from the oven. She reaches over my hand to grab the bottle of sprinkles and rainbow the top. I pause and ask her to wait.

“Yes baby. Get a bowl please. We’ll put some sprinkles in a bowl for you to use. We need to share the sprinkles.”

She carefully navigates her short legs to the ground and takes the two steps to the drawer where the small collection of child-size bowls are stored. She pulls and then pulls a little harder when the ancient drawer won’t give. She sits down to go through the choices and I hear her quietly muttering the colors as she pulls them out.

“Red”

She makes the sign for bread as she sets it down and reaches for the purple. I smile thinking of how she made her own clever sign for the color red. It rhymed. It made sense to her. She taught it to us. Often her approximations of words have to be mentally sorted out into their meaning given the context of the situation while we stumble into understanding. But this one, this one made me chuckle. She knows what rhyming is. When her early interventionist was over last month I watched amazed as she laid out images paired with simple words and then asked her to figure out which ones sounded alike.

“Pur” she whispers and turns just a shade away from me knowing full well what is coming next. Over the last few months we’ve had to push her to talk. We practice words we know she can say and we d-r-a-w them out for emphasis of each syllable. We push. She pushes back. Sometimes I wish “no” was a little harder for her to say. She answers with a garbled noise and I crouch down, ”You can do it. P-u-r-p-l-e. Try baby” I say in soothing tones and tap the side of the plastic rimmed bowl.

“Purple.”

Clear as a bell she recites it back with a crisp p sound in the middle. She grabs it from the floor and clamors back up into her chair holding it out for me to pour in some sprinkles. As I do she puts her thumb to finger, pinches up a bit of the sparkly colors and douses the cupcake in front of her not hesitating as she reaches to the platter for her next sugary creation.

“Hot Momma.”

“Yes baby. Hot. Be careful.”

And we begin again.

Stop.

31 for 21: Day 2: apron

Posted on October 2, 2013 by Cole | 3 Comments

Go:

“Cook Momma?” Her voice reaches me as I empty the last of the Fiestaware from the bottom dishwasher rack.

“No baby- Momma has work to finish before bed.”

“Work. No. Momma- cook.” She stands her tiny ground that she needs attention. Now. In the last few months her ability to tell us what she means has become clearer. It still requires patience and prompting. But it is clearer.

She turns and runs to the pantry grabbing one of the set of pint-sized aprons we keep on hand for cooking. She hands it back up to me and turns her back waiting, knowing that I will tie it in a gentle bow and acquiesce to her request. I lean down and kiss her strawberry locks and hand over the rainbow whisk that she loves to “cook” with. There may not be time to make actual muffins. But certainly there is time for the even better make-believe ones. Because I can see it. I can see her mind and many of its facets so much more clearly now than I could a few short years ago. I can see when she is pretending and when she is serious. When she is ready to learn and when she is ready to teach. When she is ready to work and when she is ready to play.

I turn back to the dishwasher to finish emptying the top rack as she starts lining up the metal bowls from the bottom of the baker’s rack with a pattern of clanks onto the hardwood floor. As she whisks her thoughts into something tangible for the rest of us to see, her sister’s come in to the pantry to join her. Together they mix and stack and stir and blend their lives, their time, their make believe and their reality.

Stop.

corner view: roadside from corner to corner

Posted on October 2, 2013 by Cole | 16 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!

This little package has bumped its way along many a roadside here in the US and throughout the world. My pals with the corner view posts had a wonderful idea to pass along a little good tidings from one of us to another in a friendly circle. See, Joanne, sent a lovely tenugui to Francesca. Who thought it might be fun to pass a little something on to Jane, wrapped in the same lovely wrapping. Soon we all wanted a turn to give and receive in real life from our friends we visit in cyberland on a weekly basis. So Corner to Corner was created and the lovely Kelleyn, who received the tenugui from Tzivia, wrapped a few items for me to take time to myself with and sent it on my way and in a few short days I will pass the love on to Karyn, in New Zealand with a little something of my own making and so on and so forth until the tenugui with it’s string full of well wishes winds its way back around the world to Joanne who will; for all her kindness and foresight, receive these well wishes, knowing that her gift that kept on giving is still in the hands of dear Francesca who will keep the gift once it has completed its circle. Got all that? No? Well here is a link to a better explanation of Corner to Corner.

I’ve been looking forward to my turn for quite some time now and when I saw the envelope in my mailbox my heart beat just a bit faster. Sorting through the cards and seeing the handwritten notes of my friends that have only existed on-line until now just made the connection we share of photography and prose from our corner view of the world all the more real and special. What a delight to be a member of this creative circle. A creativity that until just a few short years ago I had not routinely expressed. This blog has become a very special place for me and the folks and conversations and experiences I have had because of it are just so special to me. I joined corner view 4 years ago with this post on the color white. Out of all the ways I’ve tried to organize my blog- Corner View has remained the most stable over the years. Even when I go through a period of feeling uninspired; a sure way to get back to writing and sharing is to start with a corner view topic.

Love to you all and here’s to many more years of the view from our corners around the world coming together!

31 for 21: Day 1: It’s Down syndrome Awareness Month!

Posted on October 1, 2013 by Cole | 4 Comments

It’s Down syndrome Awareness Month! It’s a month where those of us in the community raise awareness and celebrate our loves that happened to be born with a little bit extra. One way I like to do this is to participate in our cyber-buddy Tricia, over at Unringing the Bell‘s creation 31 for 21. Currently this is hosted by Michelle with Big Blueberry Eyes.

Here’s the skinny- and hop over there to sign up if you would like to play along: You post every day, at least once day, for 31 days (each of them in the month of October, which is Down syndrome Awareness Month) on any topic, to raise awareness about Trisomy 21. 31 for 21! (Topics about Down syndrome are not necessary, though it’s encouraged that you mention why you are taking part in the challenge at some point during the 31 days.)

I’m taking part again for my fifth year because Disability Awareness and Acceptance has always been a part of my make-up. But in February 2009, it hit closer to my home and heart. When the Quail came to us in all her glory we learned after her birth about that little bit extra residing on her chromosomal pattern in every cell of her being. And we believe that about her with all of our hearts- she isn’t lacking a thing. She’s all there. And a little bit extra.

Just like her sisters, who very few, other than the geneticists in our lives; would describe as “typical.” She’s a wonder. We’re blessed to witness the growth of these sisters on a daily basis. That said, I don’t think I’m going to go on rants about stereotypes, or resource listings or basic Down syndrome information this year. That’s already out there. Check back in my archives to the month of October in 2009, 2010, 2011 for my versions of that. I would reckon they still hold water. Or for more up to date information go visit our cyber-pals who are also participating in 31 for 21 and get schooled by them with a personal touch. I know I plan to and Michelle will keep a list of where to find them!

Last year I did something more simple. I shared 31 ordinary things about my extraordinary girl. I had spent almost 4 years going on about what a wonder she is and decided that my contribution to Down syndrome Awareness efforts would be to show the beauty of how ordinary life continues when you have someone with a little something extra in your life. In January 2013 I changed my blog from The Tao of Tulips to Ordinary Afters. This change was significant, primarily to me. It represents a systemic shift in my heart, my mind, my focus. A shift to focus my documentation of our family life as a whole so that the other girls don’t feel diminished or unseen in my eyes or heart. Of course I’ll still note and advocate for those with disabilities and specifically Down syndrome and still talk about how it affects the Quail. Because it would be naïve to say it doesn’t. It does. What matters most to me though, is my continual search for our family’s ordinary afters. A way to show our children one day how beautiful their lives are because they are their lives. To train myself to look with gratitude on what I am blessed with rather than dwell on what others might see in our family as lacking or burdensome.

Life is what you make of it. Those happy, joy filled moments- they are just as real and authentic as the pain-riddled sad and chaotic-3-ring circus angry ones. Both pass in the blink of an eye. Some days there are more of one than of the other. Some days what we are grateful for is the fact that we get to wake up and try again.

Over the last year what I mostly want to write about is inspired by the images my camera shows me along with my addled thoughts that I nurse to in the middle of the night about the domestic scenes from earlier in the days and weeks. Most weeks on Fridays I have taken part in Lisa-Jo Baker’s five-minute Friday writing prompts. I fall in love with these writings as I often come back to them and see them as the momma diary of my heart.

These bits of prose coupled with our favorite family storytelling photographer- Ms. Molly– coming to visit us this past year where she showed us what she sees in our life is what I want to share this month.

When I got my first glimpse of the session, I quickly wrote to Molly to tell her how with each photo, I could have written a narrative. The whole of them pulled together by Molly’s delicate eye and heart delighted me as much this time as the time she spent Saturday Morning with us a couple of years ago. Seeing these images that represent both a few moments as well as the whole of our family with all of its life and light and shadow and work and play- it makes me proud that I get to spend my days with this dear collection of people. Yesterday morning as I was uploading some pictures to the blog of the Quail from the last year I knew which one I wanted to start with. Molly took so many pictures- but one in particular, this one in particular, of the Quail shone through with the light of her spirit. As I was scrolling to it though, I kept stopping at other ones of her that I still felt that desire to tell a story about. And then it hit me. These images, the way they make me feel, this life that we have created; this is what I want to share this year for 31 for 21. So I’m going to use Lisa-Jo’s format to write for five minutes on one word that comes to mind on these individual images that dear Molly Flanagan* took.

Because this family and life- the ability to have it, to live it the way we choose- this is the gift of the advocates and families that have come before us. Because without them- if the Quail were born to another time and place- I might not have had the gift of her in my life. I might not have the privilege to both raise and be raised by her. I might not have the support and knowledge and confidence that those who have paved the way before me have gifted. I might have been forced into believing that giving her up at some stage along the way was the best thing for her, for myself, my family, my home, my community. I get to keep her though. I get to raise her where she belongs because of the hard work of those that came before her. And that, I can’t say it enough- that is an endless privilege and not one I take lightly- the gift of our family’s Ordinary Afters.

*All images categorized with 31 for 21 this month are courtesy of the talented eye of Molly Flanagan.

five minute friday: true

Posted on September 27, 2013 by Cole | 9 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.

Go:

This is the stuff. I think to myself as I sit down at the cramped kitchen table to nurse Sugarplum. The smell of the chicken that Lovey had spiced and seared wafts over me and lulls me deeper into the hormone hit I look forward to with each nursing. It’s easy in that brief moment of stillness. Of thick hungry scents of dinner to come. Of Ryan Adams crooning on the Pandora. Of Zuzu singing as she skips to the living room to reach the Netflix remote before the Quail can. Of the Quail happily setting out a specified color of Fiestaware for each member of the family to eat with.

It’s easy in those moments to breathe, and sigh and smile. And then the Quail realizes that the opportunity for Barney has been swiped by her sister and Zuzu realizes we are pouring her a glass of homemade kefir rather than milk and the baby realizes that the blanket she was snuggling has fallen under the table and she bites down as she wrenches herself off to lunge for it…again. And the noise pitch of all of these realizations in these too small rooms pound into my temple and the migraine I had been nursing all afternoon flares as my temper strikes and I holler for everyone to go take their baths so that we can eat, and do our homework and do our bite-bites and maybe, just maybe get everyone to bed before my head explodes or at least eight o’clock.

And just as quickly it stops and plates are served up and reassurances are made that you can just leave what you don’t want to eat and warnings are issued that if you walk away from the table your meal is done. And then the baby in her highchair utters a “bomp, bomp, bomp, bomp, bomp” in response to the command of “Everybody dance now!” that Zuzu has been chanting at random intervals since gym class with Ms. Young earlier that day. And the Quail sees me pull her beloved French bread from the toaster oven and starts signing her version of bread emphatically to be certain I don’t pass her up as I hand out the thickly cut and buttered slices and everyone sinks back into quiet chewing, the earlier tempers forgiven if not forgotten. The guilt of having lost my cool yet again as impulsively dumped as the tone itself had been issued.

This is the stuff. This is our life. These fluid threads of together and separate, of need, and impulse, and want and desire and plain ordinary chicken and bread, and days apart and evenings together that weave us into a blanket described as family that will wrap us tight and comfort us and infuriate us and catch us up all within the blink of an eye.

This is the stuff. This is what’s true. The anger, the tempers, the chaos, it’s no more real or true or authentic than the peace and the love and the feelings of joy. It’s all of it. It’s life together minute to minute, moment to moment, person to person. It’s family. It’s love. It’s true.

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.

corner view: what to do in the U.S.

Posted on September 25, 2013 by Cole | 4 Comments

When in the U.S., take it all in from sea to shining sea. The U.S. has so much to offer and it is extremely difficult to sum it all up. Travel by plane, trane or automobile and take the time to wander in as many of the regions as you can. The land and city-scapes are so wide and varied, as are the people, the towns, the food and the sites. Even after living here for over 40 years there is still so much that I’ve yet to experience!

(3) on the 21st: A Blog Hop

Posted on September 21, 2013 by Cole | 6 Comments

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

Blog hops are a nice way to get to know some pals. And I tell ya….well see below for what I tell ya…

(3):

One truth (about Ds/our lives with Ds) It takes a tribe to raise a kid in today’s village.

One tip (information on something related to Ds/raising a child with Ds/or just parenting in general) Join the community. Lurk if you’re shy, but still join. Read, visit, comment. This community it is as diverse as the syndrome itself. What is an issue, a concern, a moment or milestone to celebrate and connect over is different for everyone. We are not all the same. And yet we are all connected by a little bit extra. There are plenty of folks you’ll have things in common with and plenty that you won’t. There are families that will share your political, religious and ideological beliefs and values and families that will offend yours. And that’s ok. There is no one right or wrong way to share your story, live your life, or raise your kid. Share your life with others and grant others that same space.

I started reading when the Quail was a newborn and started blogging when she was 6 months old. I started blogging because I was repeatedly going to other Mommas on-line and asking them questions. For me, being new to this whole, “My kid has Down syndrome” thing- well I felt pretty shy about asking questions in person and talking on the phone. The amount of information available on-line though- well really- it isn’t just Holland or Italy. There is an entire world available out there. And what we need to connect over changes over time. When the Quail was itty bitty I wondered in general what our future would be like. Would she crawl? Would she walk? Would she talk? Would she be able to continue to go to a typical daycare? Would she ever stop throwing up daily? Would she have friends? Should we have another baby? How does the Quail’s Down syndrome affect Zuzu? Would she be included with our family, our friends, our school and community? These questions and the answers to them for me and for others change and there is just something about being around others that “get it.”

A couple of weeks ago we attended a camp that was put on by our local Parks & Recreation department at a YMCA camp. It was a group of families that had one thing in common. Someone they love has Down syndrome. These families and their backgrounds were incredibly varied. And yet, that didn’t matter. We spent time being together. Talking, playing and sharing. The director repeated throughout our stay- “No worries, no excuses.” It didn’t matter if the kiddos acted up or didn’t want to interact at all. We could do as much or as little as we were able. The point was the opportunity and openness. On the last night they held a talent show. Zuzu was confident she wanted to show folks how she hula-hoops. So she did. And as soon as she came off-stage to a round of applause, the Quail looked me in the eye, touched her hand to her chest and whispered emphatically, “Me.” The counselor sitting near us heard and asked if she wanted a turn up on stage. The Quail nodded her assent and repeated “Me.” I asked what she wanted to do and mentally ticked off a list of things I’ve seen her “perform”. We settled on her “singing” if you’re happy and you know it. This from my kid who, well doesn’t talk much. When they called her name she ran up on stage and stopped. She looked around and I whispered to Zuzu what she was supposed to do and to go join her. Still we could hear the crickets chirp as everyone waited. After a minute I said hesitantly, “She wanted to go up because Zuzu did. She wanted to sing “If you’re happy and you know it.” Could you all join in?” Happily and heartily a room full of families readily sang the familiar tune. And the Quail she cheered for them as her sister fed her candy. Then they skipped off stage ready to cheer for the next talented boy or girl. No worries. No excuses. Everyone just got it and went with it. As a parent, what a relief that feeling is. Sometimes you don’t know when you’ll need your tribe, sometimes you do. You just gotta join in and ask.

One photo