31 for 21: Day 6: family

“Do you want to go out and get dinner?”
Frowning into the phone, I feel fairly certain that my grumpiness radiates off my non-answer enough that my preference doesn’t have to be spoken out loud to Lovey. His question is the token one that is thrown out at some point each Friday even knowing its doomed fate before it appears on his lips. I’ve made the last drive of the week from work to the girl’s daycare to pick them up. They dance around me asking if it’s pizza and movie night and if tomorrow is a home day as they shove pink and blue backpacks and fleece blankets and strawcups and markered papers into my quickly filling arms. We don’t have to go anywhere and so I don’t even really want to think about trying to.  My response is reflexive, not thought out. As the girls shout out the color of their daily stars they landed on to me I whisper, “Maybe next week.” into the phone before clicking it off.
It’s been a long week and the laundry isn’t folded from the weekend before and the bags haven’t been unpacked from two weekends before and the wrappings from Zuzu’s birthday celebrations should have been packed back up and stored until the next celebration rather than being left to the unyielding crayoning, scissoring and glueing of the crafty little hooligans we live with. I didn’t really want to go anywhere.
I never want to go anywhere on a Friday evening.
I want to go back into my cluttered house and ignore the laundry, the dishes, the bills, books, clothing and toy sorting I’ve intended to organize for weeks and spend the evening pondering my gluten-free status and actually read the all of the articles I saved on Facebook throughout the week, and pin more items to my Pinterest boards knowing I won’t actually make any of them and close my eyes glorying in the lack of need to turn the alarm on and eat chocolate-cherry Kind bars while watching Sherlock clips on You-tube as the girls rock-paper-scissor-off Netflix choice rights with the TV in the living room.
Anything but make an effort and publicly parent over nachos and quesadillas. Not even the promise of a margarita can usually pull me out of this pattern of slovenly indulgence. I give in to this instinct most Friday nights. A cheese pizza bakes in the oven while the Netflix UN meets to confirm the order of Fairies vs Monsters vs Ponies. The neon-green, white and orange striped picnic blanket is laid on top of the black patterned living room rug and the Quail lines the stripes up precisely with the inky swirls while Sugarplum dive-bombs her from atop of the ottoman and Zuzu commandeers the remote for herself. Lovey and I eventually trail in and sit on the couch waiting for them to finish their pizza slices and crawl up under our pillow-propped arms or we may meander off to entertain ourselves, knowing that at least two of the three will eventually give up their cartoon images to snooze in our bed to the sounds of Danish voices solving crimes.  Most Fridays it’s a mix of both.
It seems like nothing.
It’s so very plain and ordinary and routine and….comfortable. When one of us try to suggest any other plans, they are typically met with resistance by at least half of us. It takes a lot to get us out of the house on a Friday night with these children. And it’s easy to devalue those few hours spent together as “nothing” going on.
But, to those girls, these unencumbered hours are a comfort. A soft place to fall that lets them relax their brains and their bodies as they cuddle into their parents knowing there are no real expectations of them other than the UN agreement of what order to watch their shows in turn.
And that’s enough.
That’s life.
That’s family.
Knowing that doing nothing together is everything.
 

#IDSC2015‬ ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎dsam15‬ ‪#‎downsyndrome‬ #ordinaryafters

31 for 21: Day 5:Happiness is…

……Taylor Swift on repeat in the car on the way to school and back home. It’s playing with Miley in class and after school and at dance and Daisy Scouts. It’s painting every color on one page quickly and pulling out a second page before anyone can object. It’s reciting Pete the Cat books and watching Wynx Club. It’s recess time with Laurel and Blair and eating chocolate bunnies and eggs and cake and cooking real and pretend muffins. It’s learning to read and being able to say “Look at me” and “I need help” and “It’s funny.” And “I’m serious” and “No” and “Yes” when you feel you need to. It’s Mrs. Schmidt and Mrs. Johnson and Mrs. Dobson and Mrs. Lee and singing along to the Frozen soundtrack and sitting by Brookes in class. It’s Mrs. Kahli and the color purple and tap shoes and ballet slippers. It’s digging sand into cake shapes and Uncle Scott swinging you out over the waves. It’s going to soccer and dance and the spending each school day at the big school with Maddie and lining up for recess and lunch where you can pick grilled cheese any day you want. It’s sword fighting with Carmen and Ashley painting your nails. It’s being good and excellent and naughty and stubborn and helpful and caring and loving. It’s playing ball and donut stand and Odd Squad and Superman and Sister with Emma and then running giggling to a corner to hide when Momma tells you both to settle down. It’s Daddy tucking you in and Momma helping you with your homework. It’s snuggling up to your family and knowing you can go play Magic-Clip Dolls and your family will still be there when you want to snuggle more. It’s drinking kefir from a straw-cup and eating cheese slices and English muffins. It’s playing doctor and teacher to your sisters and your dolls and your animals. It’s a Barney pillow and Ruff-Ruff blankie under a purple fuzzy Frozen blanket. It’s movies and popcorn and Mexican restaurants and breakfast sandwiches. It’s picnics in the yard and sleeping in your sleeping bag on your Dora couch when you want a break from snuggling up to your sister. It’s going to computer lab and library and art and music and even PE. It’s baking mini-pies and scones and cakes and cookies and pancakes shaped like the initials in your family’s name. It’s your turn in the canoe and the pool and the paddle boat and the stroller. It’s picking pumpkins and blueberries and strawberries and apples and Easter eggs. It’s being her mom.

#IDSC2015‬ ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎dsam15‬ ‪#‎downsyndrome‬ #ordinaryafters

31 for 21: Day 4: smile

“She has yours you know.”

I looked over at the stranger who was grinning down at the Quail sitting in my shopping cart.

“Excuse me?”

“Your smile. She looks so much like you.”

I smiled back at the woman wondering if she fully understood the gift she had just given me.

Only hours after the Quail was born the on-call pediatrician was standing over the end of my bed unwrapping the Quail from the pink and blue foot-printed hospital blanket her father had just burritoed her into less than an hour ago. He had been in already to check her toes, her heart, her nasal bone and palms. Looking for a clear sign that she either did or didn’t have Down syndrome. Only a few weeks earlier we had visited the Maternal Fetal Medicine OB/GYN and he had explained that since they were performing the ultrasound so late in the pregnancy they had really not been able to see all the soft markers that would indicate Down syndrome. “She may have it or she may just be a genetic match for your older daughter.” In my first full-term pregnancy I had been to see Dr. G as well. I have a couple of blood clotting disorders, I’d had a couple of miscarriages and I wasn’t exactly a spring chicken by obstetrics standards. During those visits Zuzu had exhibited what I now realize were soft markers for Down syndrome. Only back then, those words hadn’t been uttered. It’s why each month, when the OB would suggest I could go back to Dr. G at any time and I could have any genetic testing I felt like; I smiled and declined. Zuzu had shown hydronephrosis and shortened femurs and other than one urinary tract infection, had been none the worse off. In fact, she measured in the 75th% for height. Shortened femurs be damned. As I’d seen each OB in the practice I used in turn, I’d smiled and turned them down on their offers for additional checking; until Dr. B, by far the most direct in the practice and the one who had delivered Zuzu, said outright that they thought there was a good chance the new baby had Down syndrome and I should really go get a level 2 ultrasound done at least. So I could be prepared. With his frankness, dimming my smile, I had nodded and headed over to see Dr. G. Again. My only clue something was amiss was his question of where my partner was when I stepped in his office to go over the ultrasound results. I had assured him I was fine. As we talked I joked that he should see Zuzu’s height. He nodded, shuffling the papers, remarking that it was less likely as the baby was a girl and assured me that after she was born the pediatrician would take a close look to see if further testing should be done. I agreed better safe than sorry and headed back to my car. Stiff lipped and quiet until Lovey’s voice came on the line and I started to tell him what they had said and the dam finally broke.IMG_1887

“I’m 75% sure she doesn’t have it but we’re going to draw blood and send it in for analysis.” The on-call pediatrician called in his colleague for a second opinion and between the two of them they really weren’t sure.

“Do her eyes look like anyone in your family?” Lovey and I shook our heads resignedly. Not really. It was too soon to know by color. But her newbornness, was definitely unique to herself and not that genetic match of Zuzu we were expecting.

Three weeks passed before the call would come and our own pediatrician would give us the final call on her genetic make up. He assured us in an involved and loving home like ours, most of what she would experience as somewhat limiting, could be medically managed nowadays. As he ran down a list of what to keep an eye out for, I sank down on the bed. The smile that had lit up my face as I snuggled the Quail close to me and breathed in her baby head just minutes before, once again faded from my lips. Earlier that day I had made a round of angry phone calls to the geneticist, the hospital, the pediatrician. Tired of wondering. But at that one moment, as time stopped and our doctor explained how an Early Intervention expert would be calling us for more information in the coming week, my place in the world had shifted and I wished I hadn’t been so damn ready to know. I longed to not be so damn sure. I was the recipient now. No longer the public servant. I had a daughter with Down syndrome. A daughter whose eyes didn’t look like mine. A daughter who hadn’t shown me her smile yet. A smile that would mold into my own in the months and years to come, but not right then. Over the next few days I continued to snap pictures but eyed them all speculatively before sharing them. Did she look like what I thought of when I heard Down syndrome? Sometimes. Sometimes I could see just the baby, my baby and sometimes I saw the otherness. I hid those pictures. I wanted other people to see her, and me still. Not the otherness. I cried when I flipped through those pictures. Then the time came to make our birth announcement. We needed a photo. I wasn’t comfortable with a single one I had taken so far. Lovey cleared off our mattress in the magic hour of afternoon light and laid out our sheepskin that had been a gift when Zuzu was born. Her jaundiced skin contrasted it as she slept on, oblivious to our arranging of her limbs. He snapped a few shots, moved her a bit more, angled himself level with our bed and backed up as I looked solemnly on over his shoulder not smiling or laughing. Not confident at all in how we would do this….

The next day as I sat at the computer editing the shots from the afternoon, I smiled seeing that the magic hour had done its job. Her sweet rounded cheeks gave way to her button nose which looked a lot like her sisters and my baby pictures. Her feathery locks of hair folded over her soft forehead. Her small pinky curled up by her ear. And there was my baby again. The one that had snuggled iin to me before the call verifying her otherness. Lovey had given me a great gift. A view of the Quail that I had known was there but still faltered over finding as my maternal hormones had their last bit of way with me.

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“I know. She’s all me. And a little bit more. Thank you.”

Smiling warmly at the woman, I turned back and grinned down at the Quail as she giggled and mirrored my smiling face back. Together we turned the cart and went back outside.

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‎#IDSC2015‬ ‪#‎DSAwareness‬ ‪#‎31for21‬ ‪#‎dsam15‬ ‪#‎downsyndrome‬ #ordinaryafters

31 for 21: Day 3: awareness*

“When Mrs. C asked me me how I felt about having the Quail in my class next year I said I was so excited! I used to talk to her last year quite a bit when I would see her. I just love her. I know I’ll learn so much from her.”

schmidt

The Quail’s new first grade teacher’s sincerity brought tears to my own eyes. All summer I had been wondering if this next school year could possibly live up to last school two or if they were just flukes. We’d had our share of pushback in getting a spot for the Quail in a typical classroom. But once she entered that classroom on the first day of her 4k year  her educational team was all in. She’s made friends, gone on field trips, attended birthday parties and playdates. She’s become a Daisy Scout, a dancer, a soccer player and a football fan. She’s learned to read, to write and works hard on her math. She leaves my car in the morning, grabs her backpack, hollering a cheerful, “Bye Mommie! Uv oooo!” as she scans the sidewalk for familiar faces and marches off following her sister. Some days she’s good. Her star chart blooms shades of blue and purple stars. Most days she’s average and tells me about her green star she earned and what she ate for lunch and which activity she went to. Occasionally, she’s naughty. She won’t listen. She’s stubborn. She kisses a boy. But mostly she’s just a kid. She’s shown her community that she really is that…a kid. With good days and bad. With strengths and weaknesses. With talents and enthusiasms and fears and love. By just being herself and showing up. She’s created an awareness that wasn’t there before. She’s made something that was different and scary and historically unfathonable- having a non-typical kid in a typical classroom ok.

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Last fall her kindergarten teacher emailed me to ask how we would feel about the school doing an awareness campaign and fundraiser about Down syndrome during the month of October. I was both for and against it. It’s one thing for us to raise awareness indirectly in cyberspace. To not confront people and make them listen, but rather to do our thing day to day with open arms and hearts and minds creating a space for others that are curious to feel comfortable asking a question. It’s another thing, to take a small child and make her the center of a campaign that points out her differences to those around her everyday. I’m not naive. I know 99% of the people that look at her think, “Down syndrome” when they see her already. But children are different. Children don’t naturally categorize different as other and something to avoid at this age. That comes later when they see how society tells them to act. And I admit I was more than a bit fearful that this campaign could single her out and make her self-conscious. As the month progressed we were kept up to date on the funds raised and the facts of Down syndrome shared. The Quail’s class challenged the other classes to bring in “Dollars for Down syndrome” which were given to our local advocacy organization. Zuzu’s teacher told me something that was an unintended side effect, this awareness campaign lent a voice to Zuzu. As her classmates brought in their dollars they often brought them directly to her letting her know they cared. Zuzu in turn would check in with her teacher to see if there were any new donations and then throughout the day, unbidden, go up to each child who had brought a dollar and thank them and tell them a little bit about Down syndrome in her own words with her own understanding- about how Down syndrome is different for everyone that has it and how you know that some kids wear glasses to help them see, well her sister does exercises called bite-bites to help her talk easier.

I heard about this in November. After it had occurred, and was such a matter of course for Zuzu that she didn’t even think to bring it up. For her it was just natural.DSC07267

Our family was invited at the end of the month to an assembly where the total raised was announced and a special guest speaker from the ClemsonLIFE program, a young man with Down syndrome, came to speak to the school about the importance of never giving up and always believing in yourself, because if you tell yourself you can do something you eventually can. For him this was attending a college. At the end of his slide show everyone cheered, Zuzu, who had asked to sit with us rather than her class, ran back to her friends, the Quail clapped, hugged us and ran off with her classmates and we offered up our thanks to this small community that had made a space in it for our girl. And had helped the others who spend their days with her understand that even though she may speak and learn differently then them, she really is just another kid.

“You’re going to make me cry. I don’t think there is anything kinder that a teacher could tell a worried parent then that they are happy to have your child in their classroom. Thank you.” Wiping the tear back, I leaned down to the Quail and asked her if she remembered Mrs. S from last year. Nodding shyly, she scooted out from behind me and walked over to Mrs. S and gave her a hug.

It looked like things just might be ok again.

*Technically today’s prompt from The IDSC was “Down syndrome Awareness shirt”. This right here is one that the Quail went to school in quite a few times when we first got it. I think just her wearing it and living her life, shows what we think.awesome

 

31 for 21: Day 2: yellow & blue

Alright. I’ve settled on a plan and I hope our friendly friends don’t mind me taking my liberties by combining the IDSC‘s daily photo prompt challenge  with 31 for 21. I like to write from photos and from a word prompt- so this is more than a bit serendipitous!

The plan from The IDSC:

“Each day, we have a photo subject assigned. Snap a photo of yourself (if you are a self-advocate) or your loved one with Down syndrome participating in the challenge. Post the photo on our Facebook page or Instagram. When posting, use the hashtags ‪#‎IDSC2015‬ and ‪#‎DSAwareness‬.”

 

Blue & Yellow

Merry eyes sparkling blue,

Tulips springing yellow,

We follow you to Holland,

With nary much of a bellow.

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

31 for 21: Day 1: I’m back….again.

31 for 21.

Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past six years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my seventh year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project. And how they could relate to it .  And then writers that I love shared it with their friends. And then wonderful things happened. I borrowed the cowardly lion’s heart and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. I had never been so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely  and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for  a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well. If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to.  The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past.

Each November 1, I breathe a little easier that I made it through the month. And each month following November 1, I find that I write and share less and less. It’s not that I have less to say. It’s that I have more to do. More I want to do. In real life. And then, I read an especially insightful passage or post that I have so very much to say about and I think I’ll make my own post and get back to regular writing because it really feels so much better when I do make the time….

…and then it’s time to sing the “Rise and Shine” morning song to three little sets of ears that pretend not to hear me as they burrow under their blankets until I get good and loud and practically heave them from their sleeping nests to herd them to their respective dressers, followed by their frantic dickering over plastic bowl and spoon colors and proper craisined and raisined proportions of Cheerios, Kashi and Chex Mix like they are buying and selling stock on Wall Street. This continues until it is time to lecture them that they are again running late and we must leave for school precisely three minutes ago and why has no one brushed their own hair or taken their allergy meds and what do you mean you don’t know where your dance shoes are and that you had jump-rope team starting five minutes ago and no you don’t need your hoodie zipped but you do need a clean straw and cup and hurry to the car and the neighbors are probably getting an unpleasant earful and I promise you Sugarplum that Momma’s need to go to work today is no different than it’s been every weekday for the last three years and of course I’ll come home and take care of you and please let go of my leg and go back in the house.

And somehow we all end up singing “Shake it Off” or “Bad Blood” only minutes later as we screech into the drop off line and wave to the teachers and bless the safety patrol for their “Have a good day!” wishes and switch off the Taylor Swift after maybe one more song, cause it’s really for their tweeny hearts and click on the audiobook for 40 minutes of peaceful drive-dreaming on the way to work.  Almost ten hours later, I arrive back at the daycare that’s really their second home after almost nine years and reassure the new staff that we’re happy to pick them up sandy and sweaty and grinning with questions of if it is a McDonald’s night or a pizza and a movie night as I attempt to herd them back to the car before answering in the negative to avoid the semi-routine public scenes we are so prone to so that we can hurry home to ignore the piles of laundry; not so lovingly referred to as Mt. Washmore, and unload the dishwasher and bribe the almost nine-year old with quarters to refill it and tear the nerf sword out of the three-year-old’s tightly gripping, blue markered hand again and look up the answer to the six year old’s question about if she has computer lab or P.E tomorrow and set my alarm for 4:45 a.m. with an intention to go for a run and take my melatonin and start the nightly Netflix debate of Dr. Who versus The Bridge with Lovey after which I *may*sneak a pack of chocolate covered banana dippers from the back of the freezer where they are hidden from the world before falling in to bed to start the whole process over again, maybe a little bit better rested, maybe a bit better prepared, maybe a bit calmer….or maybe just again.

So all of that is to say that I’m not quite sure what I want to focus on this month. But I wish that I did know. At least then I could stop feeling bad that I’m certain I don’t have time to participate this year and just start writing. Last night during our nightly Netflix hour, I said to Lovey that I was sad I couldn’t do the blogging challenge this month. His response was that was nonsense, just pick a photo and write what you think and feel. It doesn’t have to be a novel.

Then this morning, while I glazed over Facebook with my spoon in my Cheerios after not running, I saw an article share about the importance of really questioning yourself about who cares if you are running slow. About how most athletes are hounded by negative self-talk- whether they routinely run a 6 minute mile or a 15 minute mile. While the fact of the matter is both of those extremes are still running. And I got it. Again. That when you tell yourself you can’t do something you want to do, you begin to believe it as fact rather than the negative self-talk opinion that it actually is. And then, you don’t even try.

This.

This relates to so much more in life than just running. You can say the same about writing and cooking and traveling and parenting and friend-making and group-joining and education and inclusion. When you tell yourself you can’t, you don’t put much effort into seeing if you possibly could. It shapes your actions and your intentions. You don’t work hard, because you gave up before you even start trying.

If I run slow, and write less and start my non-dieting lifestyle over yet again and cancel my plans and page back to reread that chapter on my kindle and have to say “I’m sorry I raised my voice” to my children and husband and “We’re going to try it in spite of those issues” to the Quail’s IEP team and Zuzu’s dreams of competitive dancing while wiping off Sugarplum’s skinned knee with her polk-n-dotted shirt that, while clean remains unfolded on top of Mt. Washmore, then that’s what I’ll do.

Again.

day1