five minute friday: true

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

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Go:

This is the stuff. I think to myself as I sit down at the cramped kitchen table to nurse Sugarplum. The smell of the chicken that Lovey had spiced and seared wafts over me and lulls me deeper into the hormone hit I look forward to with each nursing. It’s easy in that brief moment of stillness. Of thick hungry scents of dinner to come. Of Ryan Adams crooning on the Pandora. Of Zuzu singing as she skips to the living room to reach the Netflix remote before the Quail can. Of the Quail happily setting out a specified color of Fiestaware for each member of the family to eat with.

It’s easy in those moments to breathe, and sigh and smile. And then the Quail realizes that the opportunity for Barney has been swiped by her sister and Zuzu realizes we are pouring her a glass of homemade kefir rather than milk and the baby realizes that the blanket she was snuggling has fallen under the table and she bites down as she wrenches herself off to lunge for it…again. And the noise pitch of all of these realizations in these too small rooms pound into my temple and the migraine I had been nursing all afternoon flares as my temper strikes and I holler for everyone to go take their baths so that we can eat, and do our homework and do our bite-bites and maybe, just maybe get everyone to bed before my head explodes or at least eight o’clock.  

And just as quickly it stops and plates are served up and reassurances are made that you can just leave what you don’t want to eat and warnings are issued that if you walk away from the table your meal is done. And then the baby in her highchair utters a “bomp, bomp, bomp, bomp, bomp” in response to the command of “Everybody dance now!” that Zuzu has been chanting at random intervals since gym class with Ms. Young earlier that day. And the Quail sees me pull her beloved French bread from the toaster oven and starts signing her version of bread emphatically to be certain I don’t pass her up as I hand out the thickly cut and buttered slices and everyone sinks back into quiet chewing, the earlier tempers forgiven if not forgotten. The guilt of having lost my cool yet again as impulsively dumped as the tone itself had been issued.

This is the stuff. This is our life. These fluid threads of together and separate, of need, and impulse, and want and desire and plain ordinary chicken and bread, and days apart and evenings together that weave us into a blanket described as family that will wrap us tight and comfort us and infuriate us and catch us up all within the blink of an eye.

This is the stuff. This is what’s true. The anger, the tempers, the chaos, it’s no more real or true or authentic than the peace and the love and the feelings of joy.  It’s all of it. It’s life together minute to minute, moment to moment, person to person. It’s family. It’s love. It’s true.

Stop.

splash!

This set of pictures of The Sistred embodies all of who they are in this world I think: joy, movement, spirit, togetherness and individuality. Enthusiasm for the tiniest moment and jumping fully into that moment with all their might.

I took these much earlier this summer. It was Lovey’s birthday weekend and we had just finished up the second celebration brunch and wandered down to an area in our neighboring town that turns on this fountain when the weather is nice. The girls piled up their fancy dresses, poured on the sunscreen and just let loose.

corner view: what to do in the U.S.

Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

When in the U.S., take it all in from sea to shining sea. The U.S. has so much to offer and it is extremely difficult to sum it all up. Travel by plane, trane or automobile and take the time to wander in as many of the regions as you can. The land and city-scapes are so wide and varied, as are the people, the towns, the food and the sites. Even after living here for over 40 years there is still so much that I’ve yet to experience!

(3) on the 21st: A Blog Hop

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This monthly blog hop is a community project created by one of my pals Meriah over at With a Little Moxie.

Blog hops are a nice way to get to know some pals. And I tell ya….well see below for what I tell ya…

(3):

One truth (about Ds/our lives with Ds) It takes a tribe to raise a kid in today’s village.

One tip (information on something related to Ds/raising a child with Ds/or just parenting in general) Join the community. Lurk if you’re shy, but still join. Read, visit, comment. This community it is as diverse as the syndrome itself. What is an issue, a concern, a moment or milestone to celebrate and connect over is different for everyone. We are not all the same. And yet we are all connected by a little bit extra.  There are plenty of folks you’ll have things in common with and plenty that you won’t. There are families that will share your political, religious and ideological  beliefs and values and families that will offend yours.  And that’s ok. There is no one right or wrong way to share your story, live your life, or raise your kid. Share your life with others and grant others that same space.

I started reading when the Quail was a newborn and started blogging when she was 6 months old. I started blogging because I was repeatedly going to other Mommas on-line and asking them questions. For me, being new to this whole, “My kid has Down syndrome” thing- well I felt pretty shy about asking questions in person and talking on the phone. The amount of information available on-line though- well really- it isn’t just Holland or Italy. There is an entire world available out there. And what we need to connect over changes over time. When the Quail was itty bitty I wondered in general what our future would be like. Would she crawl? Would she walk? Would she talk? Would she be able to continue to go to a typical daycare? Would she ever stop throwing up daily? Would she have friends? Should we have another baby? How does the Quail’s Down syndrome affect Zuzu? Would she be included with our family, our friends, our school and community? These questions and the answers to them for me and for others change and there is just something about being around others that “get it.”

A couple of weeks ago we attended a camp that was put on by our local Parks & Recreation department at a YMCA camp. It was a group of families that had one thing in common. Someone they love has Down syndrome. These families and their backgrounds were incredibly varied. And yet, that didn’t matter. We spent time being together. Talking, playing and sharing. The director repeated throughout our stay- “No worries, no excuses.” It didn’t matter if the kiddos acted up or didn’t want to interact at all. We could do as much or as little as we were able. The point was the opportunity and openness. On the last night they held a talent show. Zuzu was confident she wanted to show folks how she hula-hoops. So she did. And as soon as she came off-stage to a round of applause, the Quail looked me in the eye, touched her hand to her chest and whispered emphatically, “Me.” The counselor sitting near us heard and asked if she wanted a turn up on stage. The Quail nodded her assent and repeated “Me.” I asked what she wanted to do and mentally ticked off a list of things I’ve seen her “perform”. We settled on her “singing” if you’re happy and you know it. This from my kid who, well doesn’t talk much. When they called her name she ran up on stage and stopped. She looked around and I whispered to Zuzu what she was supposed to do and to go join her. Still we could hear the crickets chirp as everyone waited. After a minute I said hesitantly, “She wanted to go up because Zuzu did. She wanted to sing “If you’re happy and you know it.” Could you all join in?” Happily and heartily a room full of families readily sang the familiar tune. And the Quail she cheered for them as her sister fed her candy. Then they skipped off stage ready to cheer for the next talented boy or girl. No worries. No excuses. Everyone just got it and went with it. As a parent, what a relief that feeling is. Sometimes you don’t know when you’ll need your tribe, sometimes you do. You just gotta join in and ask.

One photo

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five minute friday: she

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

Go:

“What did I do wrong?”

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

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

She.

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

She didn’t do anything wrong.

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

Stop.

corner view: evening

Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

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

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

corner view: lunch

Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

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