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.

31 for 21: Day 7: perspective

Posted on October 7, 2013 by Cole | Leave a comment

Go:

She giggles as she steps out from the corner, newly able to make her way quietly on tip-toe up to her Dad who stands at the Keurig making a morning dose of energy. She looks back at me crouched in the hall urging her forward. I reach my hands out miming a tickle and she covers her smile with her small hand before rounding the wooden kitchen table at top speed and colliding into his knees.

“BOOO!” she shouts and he mocks a big startle as she collapses in a fit of laughter at his feet.

Ever since she was little she’s been locking eyes with the joke that is to be had. From pretending to drink the tubby water from the small plastic rainbow of dolphin she herds each evening, to reaching slyly into the therapists bag to remove the game she hopes to hide from them before they look for it, to bird-perching her bottom lip out when she catches the sympathetic eye of the daycare worker before running through the sand out of reach from them.

She gets it. She really does. I forget that and I know her. I underestimate her ability to understand what goes on around her and truly and meaningfully be a part of it 100 times a day if I do it once. That’s what happens when people tell you who your child will be before you’ve even had the opportunity to get to know them. She amazes me and her family and her friends and her therapists and her teachers regularly these days by how much she knows that we haven’t already explained to her. This thing called Down syndrome- it isn’t what the experts thought and have tried to explain. It isn’t what I expected. It isn’t what holds her back.

My understanding of it, the understanding of all of us around her- this is what holds her back. Our expectations. Our lack of understanding, our preconceived notions and our prejudices.

Fortunately, from her perspective, that’s ok- she’ll let us try again.

Later that evening as we are sitting down at the kitchen table to dinner, her dad reaches behind him to turn on Pandora and her giggle rises up quietly at first. “Daddy- Look!” she points to a far point in the corner of the room. He grins as she starts up the game he has taught each of our girls, and dutifully turns his head away from her small body to the direction she is pointing while imperceptibly leaning his cheek a little closer to her. She throws her arms around his neck and smooches his cheek loudly while he startles again. She sits back satisfied. “Heyyyy- you tricked me!!!” he cheerfully bellows as we all crack up.

She tricked him.

He didn’t see it coming.

None of us did.

Stop.

31 for 21: Day 6: me

Posted on October 6, 2013 by Cole | 4 Comments

Go:

“Me?” The sweet rise at the end of the question mirrors the tilt in her head and the smile that runs from her bow of a mouth up into the twinkling blue of her eyes.

“Yes you. You can come.” At the end of those five little words that she’s come to expect in response to her requests she lets out a whoop, pumps the air with both fists and dances down the hallway to grab her purple crocs out of her shoe-box. My mother loves to tell that story. While they were visiting this summer and we were making our plans for the day this little exchange between us tumbled out and the course of it brought my own mother’s hand up to her heart in reflection. Her newly animated ability to ask this little word with such emotion over the smallest detail in our day that I’ve told her to expect and made sure she knew she was included in. It means as much to us as it obviously does to her judging from her response. From her ability to ask it in the first place after months of apraxia skill kit work on the blue plastic square that brought the “m” sound out of her to us, to the countless hours of work with various therapists, teachers and students to help her understand variations on first this, than that. Daily hand over hand prompts and reminders and practices of what to do next until one day she flies in the kitchen and is able all on her own to ask a question that she wants answered, when she wants it answered. Because she knows. She asks in such a way that you can’t help but grin back and make promises. And my mind and heart and eyes ever so briefly fill with worry that she has felt the questions, the odd looks, the whispers that trail her when we go out.

That worry, that worry though is all me.

It’s not hers.

Not for now at least.

Whether that’s because of the difference in our age or our experience I hope I never come to know. I hope it stays quietly mine. Not hers. I hope that when her eyes fill with delight at what lies in front of her that the answer to her request will always be “Yes.” And when it can’t be yes. I hope there is a reason for it. A reason that isn’t, “Because she has Down syndrome she can’t….”

The feeling between us in that one word as her hand rises with the question of me to her chest in an unconscious homage to the early necessity of sign language, is matched by the feeling that fills my heart and head as I bend down to acquiesce to her requests again and again. As I bend down I’m met with arms around my neck, hugging me so tightly, reminding me how much she wants in this world and that I was put here to clear that path for her so that she can go on her very own way.

Stop.

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.

(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