31 for 21: Day 8: will

Posted on October 8, 2013 by Cole | Leave a comment

Go:

“Kk. Kk. Boo-K. Baby. Momma. Kk. Sssss.shhhh”

From the other side of the door I hear the Quail out in the hall running through her own version of speech practice by herself before the sun has even come up. Lately she is the first one up. You’ll hear her chattering, then a door open and she pads quietly around whispering her family’s names in the dark, looking to see who is up. Then she sits down and starts practicing sounds. Waiting. Knowing we’ll come out soon.

I roll over and switch off the alarm, squeezing past the sleeping baby wishing I had just stayed up after the 4:30 nursing session. The baby, she’s teething those cuspids and they are keeping more than just her awake despite our Motrin pre-attacks.

“Momma- my momma!” she cheers as I flip on the hall light, quickly shushing her.

“Baby sleep?” I nod and ask if she’s gone potty yet. She confidently tells me “Yeah” even as she looks away and I note the still closed bathroom door. I settle on the carpet beside her and she climbs into my lap putting her two small hands up to my cheeks and leaning in close while she whispers with a barely contained puppy-like wiggle- “Momma, momma, my momma.” We sit together her pleased, me exhausted while I weigh the pros and cons of the parenting books advice. Enjoy the moment or be consistent and send the rule-breaker back to bed for the next 15 minutes until the appointed 6am wake-up compromise.

Lovey enters the hall with us and asks if I’ve showered yet. I shake my head and start to rise.

“No.”

Her tone is sharp. We go through versions of this tug-of-will daily now. What we have to do each day goes in to battle with each of our strong-minded children’s sense of free will. “Come on- it’s time for bite-bites. Go with Daddy. Momma did them last night. If you hurry I can get your toys out for you.”

“No. Play! Donuts!” She stands up stomping her feet ready to plant herself separate from us.

This is what we’ve worked for. What she’s worked for. The ability to tell us what she thinks. When she thinks it.

Most days she resists initially. She’s busy. She has sisters to boss. Kitchenware to cook with. Books to read and babydolls to shush. Eventually she sits down, enjoying the chewing motion on the pliable colored tools that have built her strength and confidence daily for years now. She blows into the whistle saying with her hands what she whispers, “Down” and the tone comes out low. “Loud!” as she grins and blows as hard as she can for the next round. I finish my shower and come back out to wake her sister and notice her flopping down. It’s going to be one of those days. One of those days where her will wins out over ours. And then we’ll try again the next day. Before the sun comes up, hopefully after 6am.

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 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.

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.