corner view: roadside from corner to corner

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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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!

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

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

…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:

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!

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.

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!

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

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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

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five minute friday: she

…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:

“What did I do wrong?”

I had been sharp with her. Unnecessarily so. She hadn’t done anything wrong. I was just tired of not being listened to and had raised my voice in response to the cacophony of the little ones running away from,  while simultaneously giggling at and ignoring my repeated requests. She had been sitting quietly on the couch watching Word Girl. It was almost bedtime for them and my head was filled with the swirling clutter of our kitchen, the undone daily to-do list, the mountain of unwashed laundry and the books and toys that the children seemed to see as a household obstacle course to be serpentined through rather than picked up after. She was sitting amidst the three ring circus of our living room and I wanted some help cleaning up.

She’s almost seven now. Light years from the toddler who used to grin with a carefree enthusiasm that was hard to pin down. She takes our words, our tones, our looks or lack of them into her tender heart and mirrors them back in her daily interactions with others.  I hear it as she scolds her dolls and reminds her friends and sisters of the rules and how to act in both their very real and make-believe-land and I frown making a mental note to temper myself. To give her more emotional freedom to remain the unencumbered little girl that darts between big-sister-hood and little-girl-dom on a whim. Who frequently entwines her unending mommalogues with requests to be the baby next lifetime around with predictions that when she grows up she’ll be not only a teacher but the person in charge of them.  

She.

She’s not a baby anymore. Not a toddler or a preschooler to be shaped and shepherded at every turn of the schedule and activity. She is venturing out into her school and her community and becoming not just the person I expect her to be, but the girl she wants to be. A girl who matches her striped shirt with rainbow polka-dotted jeggings because she likes the way the patterns play together. A girl who wants to sing Katy Perry loudly in the car with the windows rolled down rather than listening to me sing another verse of the unending family version of the Barney song. A girl who loves to both get a smiley face on her weekly spelling test and ask in baby tones if I’ll carry her to bed tonight. A girl who wants to be the one to choose which restaurant we go to for dinner but will still only eat cheese quesadillas and mini-corndogs most nights. A girl who begs me to not take her picture in front of her friends but photobombs the shots of her sleeping sisters.

She didn’t do anything wrong.

She. She’s just growing up before I know how to let her.

Stop.

corner view: evening

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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Our weekday evenings go buy in the blink of an eye and take these children along with them. They are often backlit with the perfect storm of the baby’s witching hour converging with the school to home transition (read: exhaustion & starvation) for the older girls. These coupled with my own tired thoughts from the day and the ongoing recording that plays on a continuous loop sounding off all of the things we didn’t have time for, and our evenings aren’t always as relaxed as I imagine they could be.

Sometimes though, there is a brief moment of perfect joy and light, and that’s what I choose to capture as I silently send up a wish and a prayer that we get try again the next day.

corner view: lunch

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!

My lunch on a daily basis is nothing to write about really. But it is my time. Time for me to take a walk, go to the library, visit my cyber friends, read a book, go shopping, have lunch with Lovey or other friends- and for that I am grateful.

five minute friday: red

…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:

“That’s 3! Zuzu we haven’t even left the driveway yet and you’ve already earned a timeout once we get up to the mountains!”

The shocked look on her face passed over into the pit of my stomach and Lovey said he would be the one to take her to do her timeout and I could take the other girls on in to the bakery.

It was my idea to go apple picking this morning. We didn’t have to go. The baby had been sick all week. The Quail was exhausted from her first week of school and Zuzu’s attitude had been flaring all morning. But it was the beginning of September. The thought of the crisp air in the mountains, a coffee and danish from the bakery, pictures of the girls gallivanting through the orchard and a bag of apples to bake into pies all wreaked of seasonal holiday fun after a week home with a sick toddler.

Only it was barely 8 am and no one was having any fun.

As we drove on up into the foothills the expected requests for breakfast, a drink, how much farther do we have to go were easily enough assuaged and Zuzu decided to read her homework book, hand another book to the Quail and then pick up after the baby’s half thrown, half chewed Cheerio trail without even being asked.

“That’s two.”

Zuzu looked at me and grinned, “You mean I’m not at three anymore and if I keep it up I can take it back down to one and maybe not have a timeout?”

“Yes.”

“Ok!”

And in that moment as I drank the cup of coffee that would keep me going till I got my next cup, I stopped seeing red.

For a brief moment in time, as Zuzu chattered on about her week, the apples she would pick, the cider they would drink, the playground she wanted to run through and her birthday plans that were still over a month off, I breathed a sigh of relief and thought…this is it.

This is how families are. It’s not all good and it’s not all bad. Even in the same day. Even in the same hour. It’s so fluid- it/we vacillate between happy and sad, content and irritated, energetic and bone tired.

And that’s ok.

And what I take away from the day can either be how awful we all behaved for that portion of the day, or the happy ordinary after that eventually comes when the storm blows over.

That’s the stuff.

Now if I could stop the story there and end with pictures of us all frolicking amongst the other orchard-goers life would still seem pretty picture-perfect and rainbow sprinkled.

Unfortunately the reality is the red in the day bled from the Honey Crisps we plucked from the bin into the dotted rash that started to spread over the baby’s soft skin once she woke from her nap to her cheeks that filled with rage as she fussed and fussed until we finally gave up, packed it in and headed back down the mountain towards home to spend the afternoon in the urgent care making sure there wasn’t something else that could be done for this fussy baby.

She’s fine now though. And we do have apples for a pie. And we did actually make it out in spite of ourselves. And I did get that pastry and a cup of coffee. And we made it home when we needed to.

Because we’re a family.

And that’s what families do.

Stop.