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.



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.



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


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…


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


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.


“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’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.


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!


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.

five minute friday: red

…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.


“That’s 3! Zuzu we haven’t even left the driveway yet and you’ve already earned a timeout once we get up to the mountains!”

The shocked look on her face passed over into the pit of my stomach and Lovey said he would be the one to take her to do her timeout and I could take the other girls on in to the bakery.

It was my idea to go apple picking this morning. We didn’t have to go. The baby had been sick all week. The Quail was exhausted from her first week of school and Zuzu’s attitude had been flaring all morning. But it was the beginning of September. The thought of the crisp air in the mountains, a coffee and danish from the bakery, pictures of the girls gallivanting through the orchard and a bag of apples to bake into pies all wreaked of seasonal holiday fun after a week home with a sick toddler.

Only it was barely 8 am and no one was having any fun.

As we drove on up into the foothills the expected requests for breakfast, a drink, how much farther do we have to go were easily enough assuaged and Zuzu decided to read her homework book, hand another book to the Quail and then pick up after the baby’s half thrown, half chewed Cheerio trail without even being asked.

“That’s two.”

Zuzu looked at me and grinned, “You mean I’m not at three anymore and if I keep it up I can take it back down to one and maybe not have a timeout?”



And in that moment as I drank the cup of coffee that would keep me going till I got my next cup, I stopped seeing red.

For a brief moment in time, as Zuzu chattered on about her week, the apples she would pick, the cider they would drink, the playground she wanted to run through and her birthday plans that were still over a month off, I breathed a sigh of relief and thought…this is it.

This is how families are. It’s not all good and it’s not all bad. Even in the same day. Even in the same hour. It’s so fluid- it/we vacillate between happy and sad, content and irritated, energetic and bone tired.

And that’s ok.

And what I take away from the day can either be how awful we all behaved for that portion of the day, or the happy ordinary after that eventually comes when the storm blows over.

That’s the stuff.

Now if I could stop the story there and end with pictures of us all frolicking amongst the other orchard-goers life would still seem pretty picture-perfect and rainbow sprinkled.

Unfortunately the reality is the red in the day bled from the Honey Crisps we plucked from the bin into the dotted rash that started to spread over the baby’s soft skin once she woke from her nap to her cheeks that filled with rage as she fussed and fussed until we finally gave up, packed it in and headed back down the mountain towards home to spend the afternoon in the urgent care making sure there wasn’t something else that could be done for this fussy baby.

She’s fine now though. And we do have apples for a pie. And we did actually make it out in spite of ourselves. And I did get that pastry and a cup of coffee. And we made it home when we needed to.

Because we’re a family.

And that’s what families do.


The Daily Sugarplum

Oh we love our daily dose of Sugarplum. She is days shy of 17 months old now. 17 months sounds so short and yet feels like she has always been. Our mad monstrous crush on her has yet to fade. The quiet, solemn, shy-smile of a heart has maintained its position in how she interacts but it is now only one piece of who she is with us.

She still sleeps in our room. I can’t quite bring myself to move her into the waiting crib in the girls’ room. Partially for selfish reasons- the need to keep our last baby close and partially for her own sake- of letting her continue to linger in dreamland come the rise of the morning sun when her energizer bunny of a sisterhood wakes and crashes into the day taking no prisoners.

She alternates when she goes to bed at night. I know you aren’t supposed to do that. And generally I’m all for having a consistent schedule so she knows what to expect. But, I’d like her to be included in story time and she often can’t quite keep her tired self content long enough to make it through Curious George’s latest antics.  We gather on the girls’ bed after each has picked a nighttime story and she wanders on and off enjoying the free reign of the floor while her sisters are captivated in the story. We try to have her sit with us reminding us all of our “story-time manners” but she has other ideas and will usually pounce on her sisters until we set her back on the rug to play. The nighttime cat crazies have curbed though. Her energy is waning by 8 and she’s ready to blow her moi-smacking  kisses to her sisters and be carried off to nurse and “Good Night Moon” the items in our room.

She knows what to expect and looks from the mirror to the family picture to the TV to the books to the lamp to her bunny lovey and settles easily into the pack-n-play after a nursing. What I really would love would be for her sleep all night. Lucky for her I’m too tired these days to enforce it. She will typically wake one time at night. She doesn’t cry. She starts by chanting Momma. Usually as I lean over to pick her up she’ll grab a lovey and reach for me. On the nights that I’m too tired to respond quickly though, she moves from the Momma chant to a steady cough to an all-out cry of despair.  If she’s sick or teething she may wake again but I feel safe calling her pattern of wakings single. Zuzu was still in our bed at this age and it was around now that she developed a habit of waking every two hours to nurse. If that pattern starts with Sugarplum, I’m guessing my motivation to get her out of the room and fully night-weaned will get much stronger pretty quickly.

Come morning when she is ready to get up though if you aren’t still in the room you’ll find her lovies and blankets oomphed onto the floor. Once she is ready to go she is generally pretty cheerful about it. It’s not uncommon to see her at some point in the day go back to retrieve a lovey or blankie from the floor and carry it around Linus style. As a former, blankie-lovie addict, I’m charmed to say the least.

During the day she still gets a cuddle-bottle with her Dad. It’s a special time for them. It hasn’t hindered her willingness to drink from a sippy cup and I can relate to not wanting to quite give up babyhood yet. We did at least finally move her over to a big-kid carseat. Granted long after she should have, but still she rides happily rear-facing now.  On the weekends though, just about anytime she toddles into a room and spies me at a computer, she goes over to where her boppy nursing pillow and an extra blankie are stored and manages to haul them out of their basket and drag them over to me, whether she’s recently eaten or not. The first time she did it I laughed in delight. Now, well I admit I wouldn’t mind some computer time on my own.

She moved into the one year old room at school and seems to enjoy her buddies, her teacher and the routines. She’s a pretty easy-going learner. She loves going to school. In fact just about the time anyone else gets ready to go anywhere in the house she runs to her shoe box and pulls out a matching pair, takes them to the nearest person with coordinated fine-motor skills, says “Shoe” and plops down to wait patiently for them to be put on her.

She’s been to the doctor quite a bit in this last month. Unfortunately when she gets sick she goes all in. A virus got her, shortly after a cold had gotten her and she was still miserable even after her fever had broke and her rash had faded. She’s had difficulty with her hemoglobin levels and since her 12 month check we’ve had to supplement her food with extra iron in the form of poly-vi-sol. This little girl is not a happy eater. She’s not a huge fan of sweets and generally stays to the meat flavored food variety, but still doesn’t eat her table food with much gusto. The supplement is helping though and at her last visit the hemoglobin level was back up around 11.2. In spite of all of this she’s managed to maintain good weight and height gains and at just under 17 months weighs in at 23.4 lbs and 31.25 inches so we aren’t too worried. Her VSD is almost gone. We had a brief moment of whooping joy thinking it was entirely gone when it couldn’t be spied on her recent echocardiogram, but unfortunately the good Dr. Lucas could still hear it. He said since we can’t see it though it has definitely made progress towards closing and might only be a hair’s width in size. Her functionally bicuspid aortic valve is behaving as well. Her growth since our last visit has been steady and the valve has kept pace. Apparently with type of congenital defect you often end up with some stenosis in the valve during the most rapid growth times, fortunately that hasn’t been the case for her. As she grows and her personality and preferences develop we’ll have to see and adjust how frequently she gets checked. If she is an active, athletic child we’ll stick to annual visits for activity clearance. If she goes the more quiet, scholarly route we may be released to every other year visits until she comes closer to her teenage growth spurt. For now, though she is doing well and is symptom free in terms of cardiac concerns. For that we are grateful.

Her other love that has developed over the summer is for that furry red guy known as Elmo. She’ll happily watch Barney with the Quail, but as soon as she spies the credits, she is up and chanting “More Mo” to anyone who can reach the remote.

And last but not least, is her chatter. She is willing to attempt to repeat on request just about any word you say to her. Diaper, Momma, Abby, Emma, Dada, bottle, diaper, more, all-done, nose, mouth, Elmo, shoe, shirt, bye are the clearest. She probably has a word for Maddie, but I’m not clear what it is. She often calls herself Momma and takes a little coaxing to convince her she actually is separate from me J Our girls are still her biggest fans and Zuzu takes pride in carefully carrying her from one place to the next. Which of course means that Zuzu’s mini-me wants in on the carrying action as well much to Sugarplum’s dismay. The Quail has to settle with just dressing her in a pint-sized apron and including her in her cooking class.

The other funny thing I’ve noticed is the difference in how the girls respond to discipline at their young ages. Sugarplum definitely share’s her sister’s rascally nature. If she gets ahold of an item that clearly belongs or is coveted by another family member she flashes a grin and a giggle over her shoulder as she toddles off with it. And that grin and giggle are there when she is lifted off of a table top and out of whatever cabinet she has taken it upon herself to empty. But her response to being told no is definitely more dramatic than her sisters. At a young age Zuzu did not respond to the word No with much emotion. No was a fact of life, but not one that upset her. The Quail, well she responds to knows with her most charming grin in hopes that you’ll change your mind in her case. Sugarplum though, has only to hear the whisper of no and the pressing of your fingers to the thumb in the signing of no for her spirit to crumble and the crocodile tears to wail out of her. She certainly is less accustomed to being told no. Most of the no’s in the house are directed at keeping her sister’s in line and on task, and she’s quick to lean in and shake a finger at them right alongside the parent in charge. So that response might fade over time, but for now, we try to keep our directives less soul-wrenching for her sake.

This sweet, spirited little sprite of a girl makes my heart soar as she blows her kisses, giggles her grins and nurses us both into a comfortable daze each day. We are so blessed.

corner view: away


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!

From the crazy amount of photo sharing I’ve been doing on Facebook this summer, I’ve given a mistaken impression that’s we’ve been “away” much more than we actually have. We had one main trip this summer for a week to California to visit with family and friends. Outside of that we were mostly here hanging by ourselves with the exception of a lovely visit from my parents. We  managed some time at the park, swimming, berry picking, water fountain splashing and a trip  or two up the road into the mountains to escape the humid weather. It’s just that I took *alot* of pictures while we were out west and it took me the better part of the summer to edit them- so I think to others it probably looked like more playtime than it actually was. That said- here was my favorites from our time away. it was a lovely visit with lots of donuts, family, fresh flowers, friends, sand dollars, beach walks & play time, The Huntington Garden in LA, cousin bonding and a reunion of three very special sisters: