31 for 21: Day 8- corner view: darkness

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 autumn darkness falls, what we will remember are the small acts of kindness: a cake, a hug, an invitation to talk, and every single rose. These are all expressions of a nation coming together and caring about its people.

31 for 21: Day 6

“Zuzu- What is this?” I point to the drawing of a stick-figure with a bow kicking a black and white ball.

“It’s soccer Momma!”

“Why does it say that’s your favorite sport?”

“Because it is!”

Fair enough. She’s been saying it’s her favorite sport for years. She’s never asked to play and she doesn’t go anywhere near the net and balls we’ve procured for our yard. We bought those a couple of years ago because of similar drawings and descriptions of her favorite things. Yet, nothing. And after repeated questioning of why not dance or gymnastics or even hula-hooping- all of which she spends and has spent considerable time, money and effort on, she finally asked when we could sign her up for soccer.

But we can’t. Not really. Not realistically. The time just isn’t there in our days. Typically soccer is 2 nights a week and a day on the weekend. Those for us, are booked. And not just because of the Quail’s “special needs”. Certainly therapies cut into our workday schedules and are a priority. And certainly I wish I had more flexibility to be the one to take each of the girls to every idea that crossed their hearts and minds. It’s because in our house sleep and being learning ready are front and center in the weeknight priorities for our house. When the girls were little they were able to spend the mornings with Lovey until 9 or 10 while I headed out to start work at 7:30 am so that I could leave work at 4pm and still have the sun up by the time I was back with the family. When the girls did dance or gymnastics it was on Lovey’s more flexibly banded watch. Even Girl Scouts is made possible due to the awesomeness of our village and our Troop Leader’s willingness to swing by the girl’s after-school care to grab Zuzu on her way to the meeting. Now that the Quail has aged out of the Early Intervention programming our evenings no longer include therapy except for the occasional visit from our beloved EI. Even with that time being freed up and no longer devoting two nights a week to speech and early intervention our time doesn’t feel so plentiful. Because now, now they are school age. Now they come home with backpacks brimming with markered worksheets, weekly newsletters, permission slips, homework assignments, writing journals, library books and the random bits they’ve scavenged off of the playground- you know the half broken purple plastic heart-shaped barrettes, sparkely rainbowed beads from a sadly broken necklace, half-scrubbed and abandoned erasers, Taiwanese dollars, crumpled up hoodies and the extra cereal bar they snuck out when mean old mom told them they could only take one to school for a snack. And then there is Sugarplum- our pre-schooler who seems to have finally acquiesced to the idea of no more home-from-school-I-just-realized-I-was-separated-from-you marathon nursing sessions. She may have acquiesced in that way, but that doesn’t guarantee that you won’t notice her.

Three little girls now noisily make their way from the car to the house in a procession full of protests, announcements and grumpy tears. Usually ones that stemmed from mean-ole-mom telling them in a more than a bit raised voice for the 12th time that they need to stop horsing around, get their backpacks and we. need. to. go. now. after what is typically a 15-20 minute dawdling pick-up from after-school care as they race and hide and seek their way from one end of the building to the other telling about each others day and who has kept a star, who has lost one, who hugged their friend around the neck too tightly, who bit them and who didn’t share. Once we’re home there are tubbies to wiggle around in, clean diapers, jammies and next-day clothes to choose, dinner to eat and left-over homework to squawk through, teeth to brush and voila- it’s bedtime. 7:30. 7:30 is the goal this year. It’s rare we meet it, but it’s good to aim early.

Then a few weeks ago, Lovey and I had a rare weeknight out for a dinner with his co-workers. At that dinner I met a man who had helped us years ago in talking about special education and the local school system. Coach K, as he is referred to, helps to coordinate a local soccer program nationally known as TOP Soccer. Each week, college kids volunteer their time to buddy up with children with special needs to learn how to play soccer. They spend the time doing warm-ups and eventually playing the game. We asked if it was only for children with a diagnosis, since we were pretty certain that if the Quail went to soccer, all hell would break lose when Zuzu heard. Coach K said that absolutely Zuzu was welcome. They meet one night a week at a local field and generally have enough extra buddies that Zuzu could be assigned one as well. Perfect.

Except, for the one thing we didn’t think through. It’s for ages 5 and up. Not, 2 and up. And with us all heading there to watch, a certain someone, was bound to notice that her bigger sisters were going to be running on a sunlit field after a ball with lots of energetic onlookers cheering them on. So we planned ahead. We had water and snacks for all 3 and an extra ball intended to entertain little one who didn’t meet the age requirement off the field. Unfortunately it wasn’t sufficient. We spent the first night chasing her back off the field and attempting to cheer along between hollers at her to get back here as she repeatedly giggled over her shoulder running into the crush at full-speed. Sigh.

And then there were the big girls. The big, need-to-get-their-sillies-out-all-too-clear-their-parents-aren’t-in-charge-and-will-take-a-while-to-get-to-them, girls who realized with buddies that are new to them, they could easily negotiate an evening of free-form running and hollering rather than following the lead of their buddies and team-mates into anything even remotely resembling a soccer game. Lovey and I stilled our helicopter propellers from the sideline while my heart-rate inched it’s way higher and higher as I noticed each week that one-by-one practically every other kid had started to, well, play soccer. You know the activity we were there for? And there was two-thirds of the Sistred running in tandem with a small goal net over their heads while their buddies trailed along after, trying to tow the line between being light-hearted and affirming versus actually making them do what they were there for. Fortunately for the girls, Sugarplum managed to occupy most of our attention with well timed darts that alternated the field and the parking lot so that we couldn’t really helicopter our way over their behavior. But I was frustrated. And that’s a nice word for it. After the first night Zuzu received a stern lecture about the game, teamwork and sportsmanship and maybe a suggestion to lay off trash-talking the kids on the other “team” when they were going in after the ball. After the second week, she was keen enough to see the disapproving looks I was radiating as she managed to goof off just out of my reach. Later that night she told me she didn’t want to go again. The Quail, she shrugged off my frustration and continued to cheer for soccer night the next Wednesday morning. Zuzu, after two lectures told me she really didn’t want to “play”. As I held in my retort that she was yet to even try, I managed to pull up my mama-pants and ask why. She said she just got in trouble and my lectures had taken away all the fun. That’s fair. I’m not very good at masking my frustration when they willfully ignore instructions. And at this point I was more than a bit at a loss at how to remedy this.

Because the thing is, I really like going. The first week, seeing this large group of kids in my community that I had no idea existed all out playing together with this smiling set of good-hearted college kids- it warmed my heart. It was fun and spirited and well, fun. The Quail and Zuzu loved the warm-up Duck, Duck, Goosing., the ball chasing, the new team-t-shirts and the smiling buddies. The Quail, as usual, was following Zuzu’s lead. And Zuzu, was just not willing to join in the team-spirit of the activity. She wasn’t asked to be a coach- and being coached- it’s just not her thing. The third week I was really, really frustrated. By this week the group broke into two games for most of the session and there were our girls, running with a goalie net over their heads laughing to high heaven. Maybe I should have let it go, after all, if the Buddies or Coaches weren’t going to step in, maybe I should have looked away. Zuzu already hadn’t wanted to come back after private lectures, a public one was not likely to endear her to the activity.

I stepped in. I told the girls they had five minutes to follow game and practice instructions from their buddies and if they didn’t I would be taking them home so that buddies could be reassigned to children who actually wanted to learn how to play soccer. They shaped up. They didn’t join a team, but they practiced with the ball. On the way home I was quiet. Which was more alarming to Zuzu then any lecture. On the drive home she announced how much she was looking forward to soccer next week.

I remained quiet.

And still I remain. I’m really not sure what to do. I had already told Zuzu that she didn’t have to sign up again, but that we need to learn to honor our commitments by finishing out this season. But the thing is, this is not the first time we’ve struggled with this issue. And I don’t want her to take over the fun that the Quail has. The Quail would most likely be willing to participate the same as the other kids, if her sister would, or if her sister wasn’t there. I’m the one that wanted to integrate the sport organized for children with special needs. And others were happy to accommodate me. All were welcome. It’s not lost on me though, the irony of the fact that my two“typical” children, well they are the ones requiring more than a bit of redirection and attention.

I don’t know what to do. And I’m sure this won’t be the last time I feel that way. This weekend I brought it up in the most even-keel tone I could manage.

“Zuzu, let’s talk about Wednesday afternoon. What do you want to do- sit in the stands with a book? Or be on the field- you tell me.”

“On the field.” Her solemn eyes looked into mine. A rarity for her. And I looked back, pulled her into a hug and simply said, “Ok.”

31 for 21: Day 2


“Oh Zuzu, I know you’re in there….do you wanna build a snowma-a-a-n?” I hear the soft rumble of Sugarplum’s giggle from my lap as she watches the Quail crack up tossing her head back, eyes full of laughter. We are sitting in the bathroom, me on the side of the tub with Sugarplum and her blankies trailing to the floor. The Quail, hands folded neatly on her lap, trying to go to the bathroom. Zuzu is in the next room over hiding under my Grandmother’s hand-made afghan; refusing to join us at the requested time on a school day morning. Come the weekend will be another story for this lot. But at such a young age they’ve already acquired the weekday sleep-in habits of their teen years to come. It’s 6:20 and I’ve had a quick morning run and come in to get the girls ready for school before getting myself cleaned up for work. Last night was Open House at the girls’ elementary school and homework wasn’t done before we hurried them off to bed later than our typical routine. Zuzu was told that she needed to rise and shine quick like a bunny this morning so she could finish her math game before it was time to go. But she’s tired. And she isn’t feeling the shine part of the equation. I’ve already stopped the nighttime birdsong, turned off the elephant nightlight and turned on the overhead light. I’ve rubbed her back, peeled the covers from her too-warm skin and sang a round of Rise and Shine and still she curls into herself ignoring the morning’s expectations. I’ve used my cheery voice, my practical facts of the day voice and my stern voice. She’s not responding. She’s not alone in her desire to slumber.

The Quail, our best sleeper by far, is now our early bird. She’s a school girl now you see. She has a My Little Pony backpack ready to go with a cereal bar snack, a cup and straw for water, her boomerang folder and a stuffed elephant to share with her classmates for this week’s learning about the letters E and F. Kindergarten began 8 weeks ago and the newness of it has yet to wear off. The Quail gets to go to school just like Zuzu now. Sugarplum on the other hand, is still in pre-school and prefers to not be reminded of that fact, that difference that keeps her from her sisters.

These girls- they watch each other with eagle eyes. Patterning their vocal trills, dance moves, sass and love after one another. Weaving their independent selves in and out of the fabric of their sisterhood. Sugarplum has hit toddlerhood running. Mostly after her sisters. A couple of months ago we finally moved her out of our room and into the practically outgrown crib that operates in more of a toy-chest mode rather than bed. And a couple of weeks ago she got her big-girl bed. Along with comes more freedom than I’m entirely comfortable with. Now when one sister rises, she can be certain that the tiniest Sister-Lou-Who will trail after with her blankies crumbled into her fist. Even though she doesn’t go to school as early as the big girls, Sugarplum rises with them, trotting from room to room quipping tiny adult narratives in her sweet, sweet babygirl voice.

“Oh, where are my shoes Momma?”

“Oh, dere dey are.”

“Oh, I need a diaper. I go potty. I need cream.”

“Where my dess?” I get dessed now.”

“I get the Cheerios. I use small spoon. Where my milk?”

As the Quail, finishes up going potty, I help off with her nightgown. “No momma. Not my jammies. Dere, Dere mine. Bad Momma. Time out. No cake.” She points to the doorknob where; sure enough, her pjs from two nights ago hang. She had been angry the night before, when her tired mom, a little too eager to send her off to sleep, had insisted she wear her sister’s pajamas, after a brief search for her own hadn’t turned any up. “Sorry Quail. You can wear them tonight.” I soothe, pulling her shirt over her head and reaching for her shorts. Just as I turn back to flush the potty I hear a scream and tiny fist flail out as Sugarplum grabs the missing jammies from the doorknob and hightails them out into the dark hall. The Quail is mad now. She starts lecturing her little sister in half articulated, fully emphatic phrases as her brain pushes them out quicker than her mouth can round. And I wonder why we hadn’t been able to locate them the night before. I sigh, turning away from their chaos to the all too still bed of Zuzu. Still laying there, stroking the satin bowtie on her stuffed lovey, tears drip down her face from her red-rimmed eyes.

“Are you crying Zuzu? What’s going on?” My voice fills with concern and I sit down by her pulling her into my chest. She acquiesces, sniffling as she tells me her sisters were just laughing at her and it crumpled her heart. I ask what she means and she says it’s my fault because I was singing again. Staring at her, not processing this slight she took in so very deeply, she explains that I sang the Frozen song and they laughed at her just minutes earlier. Rolling my eyes heavenward I’m about to explain that they weren’t laughing at her, when her clearly wiser sister pushes her way in between our bodies to hug her tight.

“Sorry Zuzu. No cry. Sorry.” The Quail’s eyes are filled with love and I feel tiny feet pound into my back as Sugarplum parrots the Quail, now lying on her back behind me. Somewhat assuaged by their gathering around her, Zuzu wipes her eyes and gets up to begin her day.

31 for 21: Day 1: It’s Down syndrome Awareness Month!


It’s Down syndrome Awareness Month! This is the 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 is 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 sixth year because Disability Awareness and Acceptance has always been a part of my life story. 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.
Then there was last year. I LOVED participating last year. 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 still go back to these photos- they are a gift- each single one. And I reread the narratives 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’ve 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 just this 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.  This year we’re doing the same fundraising. Our Buddy walk is this Sunday October 5th. The fundraising at work will happen after the event itself, but it will still happen a couple of weeks later.

For those that don’t work with me- there is an opportunity to contribute over here.

Now this year, I am not entirely certain where I want to be by the end of this month. My time to think and blog has dwindled. That sweet little hormonal shift that comes with nursing and relaxes me into a wordy melt up has ebbed as Sugarplum becomes less of a baby and more of a tiny, opinionated rebel commander pre-schooler. As the dishes pile up and the clothes wait impatiently to be folded and homework comes home in now two bursting-at-the-seams folders rather than one, my time is not my own. Life with three little girls is busy. There now is two little girls to dress for school and a third who insists she prepare to come along each and every day at the same early hour. There is carpool and jump-rope team and Brownie meetings,  TOP Soccer  and afternoon therapies. There are bowls of Cheerios and raisins and negotiations of how much milk is allowed to be poured over it to attend to. There are filibusters about the appropriateness of long pants in summer and short shorts in winter. There is hair to be brushed and detangled and pony and piggy-tailed and clipped. There are diapers and nursings and shopping as well as friends to play and eat and celebrate with. There are meals to put on the table, vegetables to be wearily eyed, milk and kefir stains to clean up and ears to be scrubbed before jammies can be carefully pulled over the summer’s band-aided knees. There are Netflix binges to lull Lovey and I off to dreamland each night while we fall in to the couch covered with orphaned socks. There are morning alarms to reset when we decide maybe we’re too tired to take that early morning run and maybe we can just wait and do it at lunch time. And there is yoga to go to at lunch when we realize we really do need to take a minute to just pause and breathe and we can run the  next day.  Life is busier than it has ever been. And while I wouldn’t change a thing about it, it is still a three-ring-circus, albeit my circus, my monkey’s as the meme goes.

That way of writing and relating our days was so cathartic last year. But it also assumes quiet bits of time to notice and reflect on the ordinary moments of our days in order to illuminate and convey the grace in them. And that, my friends is time that is hard to predict will come. And the pressure to share in this way I love and not just randomly is great. It is so great, it’s a great big block, knocking upside my writerly head.

This is just the reality of my now.

And while it flusters and frustrates me, it also just is. I’m only human. They’re only kids and the days we have together fly by in the beat of a heart. The days really are long and the years really are short. I still try to notice the little things in our days. I still feel a deep compulsion to capture them in too many stills so that I can stock my mind and heart with them for quieter days to come.
So once again, I will commit to sharing images of our days. And hopefully a few writings about them. As time permits. And the children sleep, and before my brain nods off. Which it is prone to do without warning these days.

corner view: beginnings

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!

“I no care for dat. I want dat bed.” Sugarplum’s small voice chokes back a sob in my ear as her tiny finger unfurls from my hair and points behind her towards the open doorway. Looking down at her lanky 2 year old body that clings to me like all good baby monkeys do, I’m surprised by the calm in her statement. I pause and give her a quick squeeze. “It’s ok, remember what we talked about, this is your big girl crib. Your sisters want you to sleep in here with them. Look- at all your lovies and babies- they’re waiting for you.”

“No lovey. No baby.“ Her voice edges towards anger as I hold her soft unicorn blanket up to my face to tempt her into a snuggle. “No nocorn.” I grin at her funny little word for unicorn as she starts to bat it away from my face. Peeling her off my chest, her protests ratchet up a notch so I pull her back to me and ask if she wants to neh-neh a little more. Hugging her agreement into me I grab a handful of her babies (her word for blankets) into our arms and head back into our room. I hear her whisper, “My bed” as we pass the pack and play she’s slept in all her small life and settle back on my mattress. Separation hasn’t come easily for any of us and this autumn is the start of many new ones. I find myself clinging to these strawberry headed girls even as I try to hide my frowns so that they will follow their own leads rather than mine.

Zuzu was a cosleeper from the beginning. She preferred to be held at all times of the day and only acquiesced into separate sleep on the condition of a perpetually rocking swing or a tight swaddle into the Snugglenest between her dad and I with one of our fingers available for her suckle at any given moment. She was moved into her own big-girl bed at 24 months but continued to inch her way back into our room as often as she could finagle it. As long as she started out in her own bed, we typically gave into her nighttime searchings as it rendered better sleep for all of us. As my belly grew with the Quail’s impending presence things got much tighter in our queen sized bed though, and little by little Zuzu gave into the idea of sleeping in her own bed. That is until the Quail arrived home from the hospital. Then the sad doe-eyes bore into my heart and I invited her back in between us as the Quail wiggle-wormed her way night after night down from the Snugglenest dangerously close to our tangle of blankets. Despite the finger waggling of the pile of sleep-training books I kept on my nightstand, an Arms-Reach sidecar for her and the pillow between Mom & Dad for Zuzu became the regular arrangement. When both girls were eventually herded back into their very own toy and book filled, lovingly adorned bedroom they had each other and the Quail, unlike her sister kicked with glee at the sight of the crib.

When Sugarplum came home from the hospital we had all our options open waiting to see how best she would sleep. Luckily, she went down easily enough between us. When we realized that she wasn’t going to require movement or holding to nod off to dreamland we moved her over into the co-sleeper and breathed a sigh of relief. As she outgrew the co-sleeper and continued to sleep easily enough we set her down each night in the pack and play in our room, vowing to think longer term sooner rather than later. The girl’s made their way into their own co-sleeping arrangement and seemed content enough with it until the last few months. As company came and their double bed was offered up they started to enjoy not sharing their bed and both privately asked for separate beds. When company left and they were told to return to their own bed, the Quail chortled on about sleeping in the office on her own. When we spent a weekend away in a cabin with bunkbeds the girls gleefully claimed their up-down places and only grumblingly returned to a shared bed at home. So the hunt for bunkbeds for them is officially on. While we still need them to share a room for the time being, separate beds seem to be the mutual consensus.

At the beginning of the summer Lovey and I talked about moving Sugarplum in to the girls room and the gently used crib. Neither of us were in any rush to have her not sleep in our room and instead I followed her lead in not nursing the moment we got home from our days apart. That need for the immediate connection after being apart from me has definitely lessened as she chooses to bound after her sisters while they tear through the house. Summer has passed and with the beginning of the school year approaching and the need for earlier bedtimes in preparation for the thinking mornings, I’m grateful that she doesn’t feel the need to nurse- well to be truthful, equal parts grateful and groaning. That 20-30 minutes of time to just lay down and not think, or do, or prepare, or anything is something that I hate giving up. Both for the connection and the restfulness of that hit of soothing hormones at the end of my day.
That first night Sugarplum protested but quickly relented. She doesn’t ask for her other bed now a week plus into the transition. Her feelings are still mixed about sleeping away from us though and she does protest at the separation from nursing to the girl’s room at nap time. For some reason bedtime is acceptable. I’ve yet to pack up the pack and play. I’ll probably hold out until she actually calls the crib, “My bed”. It’s hard to let go- even into the next room over. It’s hard to begin again.

Days gone by…

…at lightening speed. Between all the comings and goings, sippy cup washings, emptying of trash cans, reheating of frozen dinners, rewatchings of Frozen movies, chasing of little ones, sorting of orphan bags of socks (why do we repeatedly have more orphans than matches!?!?!?) and washing and rewashings of sandy, sweaty, markered and sauced, pink and purple sparkled leggings and shirts I lose my rhythm. And not because I’m wholly present in my day, but because I’m holding fast to the end corners of my day that are constantly flying out from under me leaving me in a pool of balls that were not only dropped but typically not picked up in the first place. And when that happens it is hard to know where to turn an ear to hear any sort of cadence to begin again with. Do I go back and edit and post the holidays and days that were special enough to capture in the first place, or do I just start from today in hopes of not getting farther behind. And in the time it takes to ponder that, someone falls down, someone gets their hair tugged, someone forgets how to share, an email comes in that needs to be answered, the smell that I can’t quite identify becomes abundantly clear and in need of removal, the bills spill out from the to-be-paid drawer, the alarm clock goes off and the day begins again. Thankfully. And thankfully the pictures continue to exist for editing and posting years after the moments they captured existed to bring me back to the blessedly sweeter scent of the blueberries that got mashed onto the white shirt that the Quail insisted on wearing, the sight of the freckled grin of a newly minted seven year old wobbling on roller skates as she rounds the wooden rink and the feel of the babies hands as she reaches to be picked up because she has noticed that she isn’t getting quite as many snuggles as she used to a few months back when she nursed more frequently.

So how are we now? We’re a pig-tailed pre-schooler who talks in tiny sentences narrating her day as she races after her sisters demanding to be included in their game and is only interested in neh-neh and other side before being settled into her crib at night. We’re a 5 year old who now attempts to tell others in 2-3 word phrases about her friends, her day, her favorite shows and what her sisters did or didn’t share with her. She’s blissfully ensconced in a regular education kindergarten classroom after a sincerely calm year in 4k and a decidedly uneventful spring IEP where everyone concurred that she did well the previous year and remained on par academically with minimal behavioral concerns. We’re a proud second grader who is always asking when Sophie can sleep over and come play and when Girl Scouts will start up again and can we please, please, please go swimming and when are we going to go camping again and when are we going to the beach, and can you please put my hair up in 4 ponytails and then braid them together in the shape of a heart and oh-no- that’s not what I said I wanted Momma now you have to start over and can’t we have pancakes again and I want to watch Youtube versions of My Little Pony meets Frozen mash-ups and my sister won’t share the Ipad and I don’t want to wear that dress it makes me look fat, I only want to wear athletic clothes and Clemson gear and can I have a Barbie doll house for my birthday and I can’t sleep Momma can I crawl in the bed with you and can you please have another baby or can I please crawl back in and come again so that I can be the baby and no you can’t tell me what to do I make my own decisions and why do I always have to clean my room and sweep the porch and I’m gonna be President one day Momma and you all can come live in the White House with me and here’s the schedule I’ve made for my birthday party seven months from now.

And my freetime you ask? What about early morning and late night writings and maybe during your lunchtime? Well those times have been dedicated to other activities. Running in the mornings. Walking or yoga at lunchtime. And clean-up and then Netflix surfing in tandem with Lovey once the littles have settled their noggins after a second, third and often fourth attempt to get to stay up for another cheesestick, drink of water, cooler jammies, warmer jammies, sister too close to me, sister not sleeping next to me, scary monster in the closet thoughts, bad dreams, one more thing I should have told you about what we’re doing tomorrow.

In other words…beautiful, complicated, sad and lovely, overbooked, stripped-down bare, well-medicated, a few minutes late, paperwork strewn over the kitchen countertops, too small of a bathroom for 5 people insisting they all need to be in there at once, doorknobs falling off, paint and plaster peeling, washload buzzing, refusing to eat the spaghetti that Momma made a mere week after insisting they have some when Lisa made the same thing the week before, sand, marker, and Cheerio covered, in need of a run, a shower, a haircut, a dye-job, a trip to the library, Trader Joe’s, Target, a glass of Malbec, the next size up of clothes for each family member, to empty out the crib in the girl’s room so the baby-no-more can start sleeping in their rather than the pack-and-play in our room, maybe I’ll just spread some of the salted-caramel-cocoa-hazelnut spread on a slice of bread for dessert, ok I’m going to sleep, why the hell did I give up caffeine last spring… life.

So- how are you?

five minute friday: hands

…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.



“Quail- do you want to go see your sister’s end of the year show this morning?” Her face lights up as she hollers yes, jumps twice for good measure and starts to tell the baby what is on the agenda. These sisters- they are there for each other. They don’t think about it they just are.

As we press open the weighted door to the first grade classroom I spy Zuzu sitting criss-cross applesauce by a set of desks close to the door. Our eyes meet and crinkle simultaneously as we slip into the full classroom near her spot. We are headed to a therapy appointment for the Quail within the hour and Zuzu’s teacher generously offered to let Zuzu’s group go first for their Reader’s Theater performance knowing how much it would mean to Zuzu that we are there to bare witness. Her group reads “The Fourth Little Pig” and Zuzu narrates her highlighted sections from her paper script. When they finish she rushes back to the area we are seated in and presses herself as close between the two desks separating us as she can manage so that she can momentarily bridge the gap between her school and home life. As the last group finishes up and I reach to the desk to set the camera down I see the girl’s hands entwined under the desk. The Quail’s small hand gently stroking Zuzu’s skinny fingers as she grips the Quail’s leg. They aren’t looking at each other and don’t appear to be otherwise aware of each other. Except they know. They orbit each other unconsciously. Drawing each other into their days and worlds.

This unconscious grace and acceptance, it has been there since Zuzu was first made a sister. As I sat on my rumpled bedsheets in the afternoon light nursing my newborn Quail, Zuzu crawled up to us all doe-eyed cautiousness not wanting to disrupt the nursing she herself held dear. I invited her in and as she joined us I looked down to see her hand protectively hovering over her new baby sisters, expressing more than she was able to say.



Five Minute Friday: glue

…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.


“Move over Quail! I was there first! MOMMAAAAA!!!!”

I hear the Quail giggle as she squishes her bottom up against the pillow my head is lying on. At the same moment Sugarplum let’s go and hollers as Zuzu climbs over her in her primal need to be in the center of us all. And the wrestling starts. Breathing in huffily, I push myself up and tuck my shirt back down. “Girls- stop it- there is room for everyone….” Zuzu cuts me off in protest of the spot next to me that she had only momentarily vacated to gather up her lovies as she clambers on top of her sisters.

This scene is nothing new. I’m used to it after 7 and a half years of parenting her on the outside after having had to pry her from my womb in the first place. Zuzu may be the oldest of the Sistred, and she may have contorted herself over the years to allow her sister’s in to her space. But she is always eyeing the spot near Momma. Be it my lap, my arms, my bed, the seat next to me at the table, on the couch, in the car or plane. She will go to the mattresses to be kept close. And her sisters- they’ve learned this pattern. They may be more comfortable stretching away from us, but when they see the light in Zuzu’s eye’s turn towards me, they will barrel in under her. I didn’t know little girls wrestled and rascaled. Their need for physical and emotional closeness often dickers with their need for mental independence. They sleep in their own room under protest. They peek through our door longingly in the wee hours of the morn. They stop their Netflix, their little pony’s, their playing of “cook”, “bye-bye, off to work” and “school” the minute they hear the bedroom door to the bathroom creak and slide under the covers with their lovies marking out their territory for snuggles.

The mornings come early and are oh so very long, but the years they are dearly short.

Clamping down my own protest to the squabble this time, I sigh, “Come around this side. Careful where you step.” I slide over to the middle of the mattress, pressing up against the Quail as she leans down to pat and kiss the baby who is feverishly kneading her blanket between us. Zuzu grabs up her monkey lovies, whimpers and spoons her angular seven-year-old self against me as I rearrange myself over the “Nah-neh! Side!” cries for nursing from Sugarplum. Lovey steps in the room and settles next to the Quail with a cup of coffee and his laptop while Zuzu turns on PBS and we all settle back for a few moments of family meditation before the weekend comes unglued.


3/21: A day in the life

This post is part of the series “A Day in the Life” that is a celebration of World Down syndrome Day – 3/21. For lots of other posts on “A Day in the Life” – or to contribute your own post, please visit Down syndrome Blogs.



Shortly after I hear one door close another one opens. I turn away from the machine, my coffee steaming as I take a sip and spy her small hand reach around the doorframe. Sleepily she creaks the door further and pads over to where I’m standing. I lean down to kiss her tousled strawberry mop, sinking onto the floor in front of the kitchen sink. As I make a lap she folds herself onto it, hiding her face from the fluorescent light she wasn’t quite ready for.  

“Morning Baby.” I lean in smelling her night’s sleep and carefully place the overflowing coffee away from us as she pushes her hair out of her eyes.

“Momma. Zuzu sleep. 6. 1. 5. me. Shannon. Me sleep done. No potty. Eat cereal.”

It’s Wednesday morning and it is early. 6:16 AM to be precise. Each day I intend to wake early enough to have a quiet cup of coffee by myself and do a little writing. Each actual day I wake a minute before the alarm sounds, turn it off, and roll on my side to listen to the soft snores of the baby before lightly stepping past her into the bathroom. Strangely, now that Sugarplum sleeps through the night, I find myself needing more and more sleep rather than less. I’m not sure if it’s the creak of my slippers down the hall, the flick of the light in the kitchen or the press of the Keurig as I snap my k-cup into place and add the cup of water, but the sounds of my morning starting have been consistently triggering the Quail’s weekday morning starts for a good while now. She seeks out a quiet moment to soak me in before her day starts and really, I don’t mind. I can write later.

“You woke up at 6:15 Quail?”

“Yes.6-1-5 me. Zuzu sleep.”

“Zuzu is still asleep?”

“Yes.” She makes the sign for sleep and grins up at me, the precision of her yes pronunciation drawing out steady and confident. She shares a bed with her sister and while the cry of “She’s on my side of the bed again!!!” and “MOOOOVVVVEEEE!!!!” sound frequently from both of them, it’s what they know. What they expect.

“What day is it?”

“Wednesday! Shannon! Jan. Bobson. Lee. Oriana. Nekaelah”

While a stranger might not know what she is saying, contextually I understand her still garbled day of the week and that she is telling me that she knows she has speech therapy with Shannon before heading in to begin her school day with first Ms. Jan, then on to Ms. Dobson and Ms. Lee. She knows that when the school day is done she will look forward to heading back to her private school for after-school care and playtime with her favorite kiddos, her friends Oriana and Nekaelah. She knows her routine and what to expect.

“Who will you play with at school today?”

“Or-ee-annn-a. Ni-KAY-la.” She carefully sounds out their names again. Names that she has taken great care to learn to pronounce so that no one can be unclear these are her friends. Who she looks forward to seeing and playing with each day. These are friends she has made on her own. Not friends of our family’s, not anyone we know outside of her introduction to them.

Shifting my weight a little she stands up and asks again. “Eat?” her sly smile telling me she already knows the answer. A year ago I would have just told her no, not yet; not expecting any further conversation on the matter, only fury at my denial of her request. Now though, it’s a good chance to engage, to talk, to practice pronouncing our every day vocabulary and thankfully, avoid a tantrum.

“You want to eat? What do you want to eat?”

“Um….” Her little finger goes up to her lips as she raises her eyes in contemplation then starts touching one finger to another as she labels out each item in turn, “cereal, rai-sin, keeee-fir, go-go squeeze! Cake?”

“We’re out of go-go squeezes and cake. We can buy more of the squeezes this weekend though. What do you do before we eat?”

“Potty. Bite-bite. Clothes. No potty. No.”

Still avoiding the fight, I ask, “Do you want me to pick out your clothes while you go potty or do you want to?”

“Me!!!! Purple. New shoes.” At this she turns and runs down the hall, stepping quickly around the tiny shopping cart overflowing with toys. She pauses briefly at the living room door, looking longingly at a neat stack of books on the side-table just waiting to be read and played with before checking back to see if I was coming with her or not before continuing into the bathroom.

“Momma! Sit!”

I lower myself on to the side of the tub finishing my coffee as she tries to undo the snap on her fuzzy, feeted pajamas before letting out a scream of frustration a few inches from my ear.

“No, ma’am. No screaming. Ask for help if you can’t get it undone.” She quickly signs help and then pulls back away to work on the zipper once the snap has been opened. Patting the side of the tub, she signs for me to move closer and leans her head on my knees while she finishes up.

I turn on the light to their room and sing out to Zuzu that it is time to get up and get ready for school as the Quail yanks on her dresser drawers pulling out a half dozen pants looking for a pair with purple on them.

Zuzu used to be our early riser. So early that a rule of not leaving your room before 6 AM on a weekday had to be enforced the previous year solely because of her. Now, she needs to be woken each school day and urged to do the half dozen tasks it takes to get herself ready before we leave by 7:10 to get her to school and me to work on time.

The Quail slams her shirt drawer shut and dives into her sister who has crawled up on my lap. As Zuzu protests at the slight dislodging this causes, the Quail’s voice trails up with hers and I shush them both with a reminder that we want to let Sugarplum sleep.

Lovey comes in fresh from the shower and takes the reins as I sigh at the clock’s having moved too far forward for me to do any writing or manage a second cup of coffee before we need to leave in our manic out-the-door-right-this-very-second-what-did-we-forget-this-time-hurry-up-we’re-going-to-be-late-if-you-don’t-put-your shoes-on-right-now-privileges-will-be-taken-away-I-mean-it-we-have-to-go-hug-your-sister-yes-you-have-to-wear-a-coat-where-is-the-sunscreen-who-took-my-shoes-shit-we’re-late-again daily rush.

I kiss the Quail’s head as she sets down the Ipad and tries to scramble away from Lovey who has gotten out her oral-motor exercises. “HUG!!!” She bellows as I lean in to acquiesce. “Bye-bye. Momma. Work.” Turning away from her I breathe in the fading scent of her sleep and hustle to the door.

That evening I’ll pick her up from after-school care, covered in sand, sunscreen and smiles and she’ll test my tired-out-patience as she darts in and out of the little school’s rooms giggling at the freedom now that the teachers have gone home for the day. “Donald’s?” she’ll ask. I’ll tell her no, reminding her we ate McDonald’s the night before and ask how her day was. She won’t answer- she’ll be too busy chasing Sugarplum and Zuzu.

As we pull out of the parking lot, carseat buckles secured, I’ll ask if they want their windows down or the radio up. “YEAH!!!! Drive fast Momma! Turn on a girl song. Make the windows lower!”

“Yeah!!!!” the Quail will chime in mirroring Zuzu’s enthusiasm for the car ride. As the latest pop song chimes through the windows I find myself surprised to hear not just one, but two voices bubbling along now from the backseat. By the time we’re home though, she will have rested her chin on her chest and be fast asleep. Between her insistently early start to the day, a therapy session, private 4k, public 4k, after-school care and the students we bring in daily to help her practice the activities she learns in therapy, her little self is usually beat.

Getting out of the car at home, I come around to carry her into the house as she snuggles up to me whispering. “Peg. Cat. Eat. Drink” in my ear. I answer with the need for her to empty the sand out of her shoes on the porch and then go potty first and her head jerks up off my shoulder in protest. As we settle into the bathroom for the millionth time of the day I not-so-patiently contemplate how much it would cost to switch our bathroom with our living room so that we could have more space in the room we actually seem to live in.

After tubbies are done, I reach for Sugarplum for a quick nurse before heading into the kitchen to see what Lovey is getting out for dinner. All seems quiet until the Quail peels herself away from PBS to look for us. I hear her questions before I see her, “Eat? Drink?” As she pulls her grinning self up on to the bed next to us she peppers us with questions, “Bread? Kee-fir? Ba-na-na? Pizza? Cake?” as she proceeds to pounce on top of the previously quietly nursing baby. Giggling Sugarplum lets go and engages in the rascaling as I sigh, cover myself up and head back to the kitchen.

Finishing up her dinner with slight disappointment over the lack of cake and pizza. The Quail asks for more to drink and then stomps her anger out of the room as Lovey lets her know she can have another cup of kefir after we do her bite-bites. Finishing up my own dinner I let the baby out of the high-chair and holler for Zuzu to come back and practice for her math quiz while Lovey loads up the dishwasher.

Once we finish up our oral-motor exercises, the Quail climbs back down off the couch. “Drink. Kefir. More. Backpack. 3-1.” I trail after her back into the kitchen to refill her strawcup as she unzips her backpack pulling out her book that came home from public school for us to read together. Gently she turns it over pointing out the number 31 on the back cover. She may not be able to pronounce, “The Elves and the Shoemaker”; but she knows it’s her favorite story from the collection at school and she knows its number 31. And now we do as well. Sitting back at the kitchen table we finish the story and she packs it back away as I rinse out her cup. 

“Up” her little hands reach up to me as she asks me to carry her back to her room. 7:45 pm. A little before bedtime. Lifting her up into my arms with all my good intentions to finish up the evenings chores after the girls have gone down to bed, we head back into the living room to kiss the other’s goodnight and Lovey joins us while we tuck her in alongside her duck lovies, yellow doggy blanket, cabbage-patch kid named Niles and Abby doll. Just as I start to tell her how very much I love her, my words are met with soft snores.

The day is done.

Lovey turns on her dreamlight, I set the sound machine to soft birdcalls and we back out of the room and close the door behind us.

corner view: from a distance

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!

As the years pass, my role vascilates up close and watching from a distance with these three little dear hearts. I admit I take great joy and experience great anxiety from both proximities.