31 for 21: Day 13

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“Who are your friends Quail?”

“Miley. Laurel. Brooks. Blair. “

She ticks them off on her fingers without hesitation. These are some of the children she plays with in her kindergarten class at school. Last year when we would ask the same question the answer was Nikaela, Oriana, Miley, Sydney, Kaden and Landon. The year before that Mariah. Such a small thing to be able to list off your friends- and yet in so many ways- this is such a big thing for her to list off her friends- both the literal ability to say their names, to count them on her fingers, to run and play and work with them in her day. The fact that they are friends- and from what I can see- the love-fest seems to be mutual between her and them. Many people worry that when your child has obvious differences they won’t be welcomed into their communities. That the social hurdles will be too much to deal with and your child will suffer so from that. Different friends have come and gone as they’ve moved, changed schools or daycares. The same as they have for her sister. In each instance the thing that struck me as she began to name them as friends in her life was these were children that she made friends with. These were not the children of the family friends whom she only got to see on weekends or special occasions. These were the children of her everyday. Of her community. The ones she sought out in her classroom and on her playgrounds and who seek her out in return. We try to make a point to introduce ourselves to these children’s parents when the opportunity pops up. We’d love to get to know their families- and sometimes the activities we do- they do include those families. But really, for the most part- the children she considers her besties have nothing to do with us. It’s been a couple of years since she would answer Sugarplum and Zuzu as her best friends. Ask her who loves her and that is a different set- that’s Mom, Dad, Sugarplum and Zuzu. But we aren’t her besties. That’s clear now.

The other night we went to a “McTeacher” fundraiser night for her school and from the moment the door to the playroom opened I could hear the chanting- “Quail! Quail! Quail!” I didn’t know who a number of the kids were- but little Miss Rockstar walked in that room like she owned it. Then proceeded to locate her buddies and go play. A while later I heard the chant again and looked up to see her being hugged. Another buddy and the buddy’s sister had found her and they were dancing around together. A few weeks earlier when I was cleaning out her backpack I had found a picture drawn by this buddy that showed the two of them playing in a field with the sun shining and hearts all around. When I shared it on Facebook with the friend’s mom, her teacher commented how,”Laurel worked so hard on this picture today! She kept coming over and telling me that she was making it for the Quail.”

1901275_10203855021354910_3749369764527951080_nRight now her ability to make friends is at an all time high. She has more ability to talk and include herself in her friends’ conversations and to run after them and play. Fortunately now she’s at an age where the majority of the time spent together is on play. There was a period of time two years ago where she began self-isolating- she was being pulled out of her 3 year old class to go to a lot of therapies- private and public school and spending two full mornings a week in special ed as well as being pulled with the students we pay to work with her. And on top of all of that, most of her buddies were able to talk conversationally now. That growth period from 2-3 is stunning for typical language development. To the extent, that one mother told me her son had hurt feelings that the Quail didn’t talk to him when he talked to her. He thought she didn’t like him. She did though. Very much so.We were able to clear that up because the mother took the time to tell us. At that age- she was really only speaking vowels and relying heavily on gestures and sign language to convey her needs. There was very little actual talking back then. At a school friend’s birthday party this past weekend her little buddy asked me why it was hard for the Quail to talk. Such a simple question, asked so kindly. And so we talked a little bit about Down syndrome in simple terms of what it is, what things the Quail does differently, where she might need help and what she can and does do herself. We talked until the little girl’s attention was diverted, by the Quail. Running at top speed hollering her name to come play with her- and off they went. It made me smile- for Laurel, for the Quail, for inclusion and this next generation. I know the time will come when the differences will be daunting. Peer pressure- it’s no easy road to travel through. But I have hope- hope that because the Quail is and has been with the kids in her community since she came along- that maybe, their acceptance of her among and with them won’t have to be such a big thing.

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corner view: travel

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!

 

Life has been barreling by me these days friends. I haven’t been able to post our adventures and accomplishments, let alone the beauty of our ordinary days. That said, the pictures all live in my computer and one day I’ll come back to them and smile through the editing remembering.

About a month ago we traveled up into the mountains again to visit with friends. We did this last year and what a treat it was- friends that have known more about my daily life and thoughts for about 8 years from having met on a message board have now become IRL friends. Our kiddos had a great time playing together and we’re lucky to live within a few hours of each other so that we can get together. It’s a funny thing how a group can be so cohesive and yet so diverse. But the thing about having met on-line and knowing each other so intimately for so long- well there’s an acceptance there that is hard to come by in real life and time. Later this summer we hope to have a big meet-up where more of us can get together. But for now, I’ll take my mini-meet-ups…

31 for 21: Day 19: Thank you.

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

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

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

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

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

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

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

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

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

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

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

At 2:47 I received:

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

At 2:51:

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

At 2:57:

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

At 3:06:

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

At 3:08:

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

At 3:09:

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

At 3:14:

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

At 3:22:

 “Absolutely adorable—go Abby!”

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

I know I did.

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

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

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

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

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

31 for 21: Day 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.

corner view: morning, noon & night

Edisto Beach is where you’ll find us!

mornin'!

mornin’!

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night y'all

night y’all

Corner view is a weekly Wednesday date hosted originally hosted by Jane, currently by Francesca. A topic is given and you can see impressions; be it in photographic or writerly in form from around the world: Jane, Dana, Bonny, Joyce, Ian, Francesca, Theresa, Cate, Kasia, Otli, Trinsch, Isabelle, Janis, Kari, jgy, Lise, Dorte, McGillicutty, Sunnymama, Ibb, Kelleyn, Ninja, Sky, RosaMaria, Juniper, Valerie, Sammi, Cole, Don, WanderChow, FlowTops, Tania, Tzivia, Kristin, Laura, Guusje, Susanna, Juana, Elsa, Nadine, Annabel

Zuzu & Quailday: When your cyber-world steps out of the computer….

I am a lucky girl to have a cyber-sisterhood of supportive friends who share in the miracle of trying to conceive with me. I’ve known this group since 2005 when Lovey and I first started trying to grow our family in earnest. Early on it wasn’t easy. We had 2 early miscarriages that year. As I searched for answers on the internet I came across a group on a Babycenter message board of women who shared our struggles and amazingly offered up a whole new world of advice, love and support. They helped me to know what questions to ask and of whom. Many of them had met years before and had been through the stages of the process that we were just starting. Some had their miracles already and others were still working their way through the process. Most of all we cheered each other through this difficult time. Since then we have been there with each each other through more losses, emergency surgeries, fertility treatments, lengthy bedrests, genetic testing and diagnoses, failed adoptions, medical and personal worries, and thankfully more miracles. While none of us are strangers to loss, the loss we all have experienced is our own unique and yet combined story.

Many of my cyber sisters are stepping up together this spring to walk for all babies in the March of Dimes “March for Babies”. A team has been formed to raise money for MOD in the name of one of the most recent and tragic losses of our dear cyber-sister whose precious baby girl Danielle was born sleeping last September, just weeks shy of her due date. The outpouring of love and support and help to her during this sad period from a group that met online is simply amazing to me. We should all be so blessed to know hearts as kind as these in our lives.

If you would like to donate to the March of Dimes March for Babies in Danielle’s dear name, join us here.

I’ve only had the good fortune to meet one of this group of 27 women in real life. Yet I don’t know what I would do without their support and love. They are family now- they are my cyber-sisters, their children, my children’s cyber-cousins.People that I hope to know the rest of my life- and one day in real life.

This winter since a number of our children are no longer babies and are well entrenched in childhood. We decided collectively to do a round of Flat Stanley and send paper versions of our little loves around the country visiting each other. I first mentioned it here with a picture of Flat Zuzu & Flat Quail.

Being a bit more homebound these days growing the newest little miracle it was fun to spend some one on one time with each girl crafting. Zuzu loved to pick the patterns for her flat’s clothes and remained true to her fashionista self. I was impressed with her scissor skills as was she as she kept saying, ” I can’t believe a cut a leotard!!!”.

When Zuzu was ready for a nap that day, her sister woke up full of craftiness. She practiced with her new scissors and took on the clothes pattern picking and gluing like an ole pro.

As life often imitates art, there was a slight unfortunate event involving Flat Zuzu’s hair that resembled 3D Quail’s love of hair-pulling a bit too closely.  It required a bit more cutting and gluing before mailing. And there was much debate with Zuzu over all the extras that she wanted to send along: Flat Sugarplum, Flat Chulacat, a Flat Suitcase, Flat Stuffed animals, Flat Momma, Flat Daddy… in the end the Flat Sistred were sent off solo and together on their adventures around the country.

Some of my cyber-sisters have started blogs devoted to them with the intention of making their own paper books for the kids once their Flats have returned home. I love this idea and we decided we would just categorize our Flat adventures for future reference here.

Meet a few of our Flat Cyber-cousins:

Flat Nathan

Flat Roman

Flat Vincent

Flat Zuzu & Flat Quail are currently in Kentucky with 3D Daniel & Katie and enjoying themselves quite thoroughly. Stay tuned for more on their adventures…

Mommaday

It’s good to have friends. Particularly ones who let you practice on them! This sweet family asked me to take some shots of them this spring. We wandered through the butterfly path at our local botanical garden and these shots were a few of my favorites from the morning. Such sweet children…