31 for 21: Day 20

10628113_10204706246275001_7232160816180901834_nHer disappointment rose in a wail that pierced the sleeping sounds of the family. I felt the momentary panic rise in me, knowing that I had gotten it all wrong. Hesitating while holding her over her pack and play, I tried again as she uttered a quick syllable sounding like “mo”. “Here is your lovey- mo-mo- is it a mo-mo you want? Or more nursing?” The cry rose a second time. I looked at the angry slash of time in front of me- 4 hours till I had to be up. 4 hours to rest if only, she would give in to sleep…

17 months and already something was this important. One last quick scan on the darkness in front of me and Lovey’s voice echoed alongside her cry, “Sugarplum wants the gauze blanket.” There in the middle of our crumpled bed sheets was the Aden & Anais that she had fisted along with her as I lifted her into our bed for a quick nurse a mere 15 minutes earlier. Only I hadn’t seen her do it in my own sleep haze, responding more on instinct and ancient teachings of what mothers do rather than the latest Ferberized suggestions of my generation. Behavior is communication.

No matter how old you are. Whether the behavior is good or bad. What looks like non-compliance for someone who isn’t articulate is often their way of connecting and telling us what they mean. Through any means necessary.

This has been the lesson surrounding our growth into a family. Zuzu was twelve months old when she had her first tantrum. I still can picture her sweet toddling self. She delicately laid herself prone on the floor in response to my denial of her request, careful not to scrape herself up adding injury to insult, looked back at us and commenced into a full-bore wail, fist and foot pounding session. It lasted mere minutes and she was still at the age where you could tip her upside down and her frown would become a grin and she would giggle and run off. As she grew and as the others came along though that trick became ineffective very quickly. Distraction in response to their requests has become less and less of a viable parenting option.

The Quail, she has had to rely on a physical means of communication for the longest of the three. From early on, even though she didn’t have the ability to take the language in her brain and translate it to spoken words, she has always been so very expressive – both in her pleasure and displeasure. It’s this passion without articulation that has been our main worry as to how she would function in a typical classroom. Her ability to say what she knows and be heard as a child with something to say and not just a as a behavior problem. Even with our thorough knowledge of her preferences and exposure to her dialect, we get it wrong. And boy do we know it when we do. That she can articulate.

10378244_10204299764433209_8943734468190431912_nEven still, we had so many things going for us heading into this kindergarten year. Over the summer, we made the decision to pursue an augmentative and alternative communication device (AAC) for her use in the classroom. She had done so well in 4k, really the only issues that stood out academically were her inability to articulate a full sentence. When we first met with Sharon; the district’s AAC specialist, she felt confident that the Quail could make good use of a device. She explained it like this: “It’s like going through life with something to say and duct tape covering your mouth. I think we share these values and understandings of the importance of communication. The Quail has things to say and we should give her the means to say it.” The first time we met with Sharon, the Quail spent the first few minutes happily playing by herself while we talked. As I leaned in closer to concentrate on what Sharon was saying, she suddenly interrupted herself and pointed at the Quail who had been tugging at my arm. “That right there is what I mean- she needs the words, “Look Momma.” She wants to show you something. Turning to her I questioned, “Look?” The Quail clapped her hands and showed me the picture she was coloring.

Something as simple as “Look” we hadn’t thought to put in her vocabulary. And that is the difference between her and the other children. She would learn to say look, just as soon as we thought to teach her it. But she had to be taught it. And we can’t always see so easily what it is that she is asking us for a word for. Beyond the basic, everyday words, we absolutely can’t predict what words she may need in the classroom when those of us that know her best aren’t there to even attempt to translate for her. Once she has the words- she uses them with her own intent and pacing. But to get her to that point it takes oral placement and practice before she can own a given word and pull it with ease from her brain to her lips.

That first meeting was in January of 2013. When we brought our plan to our IEP team, it was met with resistance. The Quail was making progress in her actual speech and had a glossary of signs to accompany it. The SLP at that time thought that really it would act more as a crutch than bridge to get her where she needed to be. We found ourselves in a triangle of opinions on which means of communication to approach most aggressively for the Quail- a PECS, an AAC, sign, speech? There were only so many hours in the day and most of the Quail’s day at that point was around people who knew her fairly well. So a decision was put off until we could more fully commit to it. Even during her 4k year, her teacher told us that while she had been so nervous about not being able to understand the Quail, she found by the end of the year that somehow she knew what the Quail was saying, however she was best able to say it. We are so thankful that it has worked out that way. And that she has managed to survive, even thrive in an environment separate from us. But as the lessons get progressively more complex it is hard to know how long it will take for frustration at not being understood will overtake patience and repeated attempts to articulate. Time will tell if a device will be the bridge to get her to where she wants to be speechwise. It will be up to her and our team to make it a viable option that is both useful and user friendly. We’ve made the decision though to go forward with it and now we wait for insurance approval.

10454924_10204633619859386_2652745411715658649_nIn the meantime, she’s managed to make a place for herself in her class. She has a gaggle of besties that she plays with and talks about and asks to see. I get glimpses inside her head when she starts to share with me what she wants for her birthday this year and starts to tick off the friends she wants to celebrate with. Her teacher tells us how she has honed in on the difference in her body language when she is honestly confused. How she looks you in the eye, shrugs her shoulders and asks for help versus when she chooses to look down and away. Crossing her arms and very much acting out the part of an obstinate five year old- which to hear her teacher tell it, is really not so very different from anyone else.

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31 for 21: Day 19

A couple of years ago I joined a blogger friend- Erin, in sharing a mindful approach to our days- she called it Sunday Still Life- and it was just that- capturing a still of your life and appreciating it. Shortly after she stopped posting them I did as well. Last year after my 31 for 21 project was done I lost my ability to manage regular posts as well. Writing started to feel like it was for others, not just me sharing about and documenting our days. And while I was flattered to realize others were reading along, well…let’s just say I don’t respond well to even perceived pressure. That coupled with a lack of freetime made for one neglected blog. One thing that has kept me coming back to writing and picture taking when I fall out of the habit is having a routine or habit to rely on until it became more natural again. And I loved Sunday Still life- so I’m going to start again- here:

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A moment of kindness between the Sistred caught and stilled.

31 for 21: Day 12

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“You angy Mommie? Angy at me Mommie?”

Her voice is small and impartial. Yet it rings out full of wonder like she asked me why the sky is blue. No preconceived notions or baggage with her observation- just that- an observation. We had been running late and I had raised my voice at the chaos around me while we tried to get where we were going in a somewhat timely fashion. My raised voice had been met by a wall of silence. An overreaction on my part? Probably. People are late. I should get over it. It’s hard to think and process in a calm and orderly fashion when the daily three-ring circus has its tent up over you.

And then, Sugarplum’s small voice innocently stepped in and I cringed. It broke through that angry red veil covering what I saw. That sheet of anger that once it is rolled out, bleeds into your interpretation of what’s going on around you. You stop just seeing the situation as something to just be in and you start judging and complaining.

“No Sugarplum. I’m not angry at you. Sorry I raised my voice. I was just frustrated that we hadn’t already left.”

“You angy Daddy?”

And then I get it. She’s asking me why I’m acting the way I am- why my voice was loud and my face contorted and why the steam came out of my ears- or maybe I the only one who saw that part. And she’s internalizing my answer. Out of our three children who I have felt love, anger, frustration, sadness and every emotion under the sun from and with she’s the first one to ask me how I feel and why in her little girl way. She’s learning how this world works around her and what we should do in a given situation. At such a young age she is already so reflective. She’s always been that way though. Since she could hoist herself up on her own two small feet, you could find her with her hands entwined behind her back watching from the fringe of the ruckus and actually deciding whether or not to jump in. She has a similar emotional intelligence to the Quail. I don’t want her to learn to be angry when things don’t go her way. I don’t want her to feel that the right thing to do when you are frustrated is to yell. I don’t want her to think that I can’t own my own feelings and blame them on her or her sisters. Or her Daddy. And suddenly the important thing in that moment is no longer the rush to get where we are going. The important thing in that moment is to say sorry because I got something wrong. Not wrong for feeling angry- but wrong in my choice of what to do with it.

People are kind. When you tell stories like this, people are quick to tell about how they hate to be late, and how it’s hard to be calm when you are tired from a long day. And how they don’t know how you do it. And while I appreciate those validators. I still need to control my reactions better. I don’t hit. I explain the whys, and whens and hows and whats. Sometimes calmly. Sometimes angrily. Sometimes after the third time-out and sometimes after getting sucked into a circular debate around it during the time-out.

“I said put that down now!” With anger in my voice, I reach over and pull the beeping timer that has been set off out of Sugarplum’s small hands. I was doing some exercise for 1.5 minutes of my morning before the sun came up. And as I planked breathing deeply with my eyes closed I heard the time I had set beeping too soon. When I opened them in frustration the first word out of my mouth is, “No. Put it back. No. Stop.” I didn’t reach over and take it right away. I felt angry that my personal minute was being wrenched out of my grasp. The minute my frustration morphed into anger it registered across Sugarplum’s small face as every small muscle contorted in disappointment and a crocodile tear splashed on to the carpet. She was just curious. Not naughty. Not obstinate. Not even mischievous. Just curious. And that isn’t something to be angry over. I closed my eyes, set down the timer and sat up. The minute my legs crossed, she pooled herself into them, her small piggy-tail poking me in the nose as I cradled her closer to me. I waited for her breathing to soften and told her that I was angry that time that she didn’t hand back the timer when I had asked her to. That mommy was using it and needed to finish before I could play with her. She sniffled and pressed her wet face into my neck and I said a silent prayer of gratitude that she can still fling herself into me after an upset. Because that doesn’t always happen so easily anymore as they grow up and away from me. The Quail, she stands her ground. Zuzu when she’s angry though, now moves physically away rather than towards me. It’s this developmental progression that I’m sad to witness. It’s one that I worry how I’m influencing. It’s a model for the girls that I’m not happy with and want to change.

I’ve talked about anger before on here. Others talk about anger and it makes me feel so very much better. To know that we aren’t in it alone. That wanting to be different is half the battle. It would be dishonest to pretend it doesn’t have a presence in our lives. The key is making sure it isn’t an overwhelming presence. And I don’t think that it is for us. Beyond the obvious cares we need to take with our health and wellness, I think the key is in talking about it and moving on. To not ruminate over it. To not be ashamed for being, and well; feeling human. To take that humanity and validate it in ourselves as well as others. To not let it consume my interpretation of how good of a mother I am or am even capable of being. To not let the mere fact of it arrest my own development in this journey. Because it is a journey. None of us are born mothers. I think talking about when we feel angry can lead to…happiness. Not happiness ever after- but an internal calm and ability to not make each molehill a mountain that we can’t bare to climb down from.

Anger happens.

Happiness happens.

Each day happens.

And hopefully the next day does too. There are no perfect mothers, just perfect moments within motherhood. And if we can climb down off our mountain those days will be there waiting for us- and if we can’t get to dinner on time yet again, hopefully we’ll at least find our way off the mountain in time to begin again.

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

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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

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“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!

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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.