Art’s imitation of life

lunartOne of my favorite bloggers had a recent post about AG dolls and in reading this post I was brought back in time for my own version of this story.

A couple of years ago, in spite of the plethora of half-naked, crazy-haired dolls littering the floor of the girl’s room. Dolls, that had been purchased and received in the last six years and had formed their own make-believe community with the generation of dolls that survived my childhood to be handed down to the eager little starfish hands of my own children. I still found myself wanting for a doll for the Quail that had Down syndrome. Problem was, every. single. doll. that was marketed for that- creeped me out. And I didn’t want to buy, what to me was a creepy looking doll and tell my daughter whom I routinely gush at how beautiful she is; that this lone doll, not the series that had already been living in her room, represents her.

This conundrum really bothered me at the time, I worried that it was springing from some deep-seeded discomfort I unknowingly harbored about the Quail and her labels. That maybe I wasn’t nearly as accepting as I assumed and presented myself as. I kept flashing back to the hundreds of pictures from her newborn days that I would skip over when deciding which to share because I thought they emphasized the stereotypes that the label of Down syndrome bring along with them.

At that same time Punky– that Irish cartoon about the girl who has Ds came out and that- that I was for. We got that and it now sits happily amongst the set of kids DVDs that we never watch because we never watch DVDS. (Shout out to Netflix: Please add Punky!) But we have it and I enjoy the show.  As opposed to how I feel about all of the doll options out there.

At that same time some of the other families on-line that we were friends with because of the Down syndrome connection; were having this Spanish doll-maker named Desi adapt the eyes on these Waldorf-style dolls to represent Ds. The doll with “the eyes” was just as darling to me as the other dolls she made. So I contacted her and put in my order. With the first photo she sent of the Quail’s doll I commented that it didn’t have the same eyes as my friend’s dolls. Desi indicated that as these specialty orders had been coming in she had revised her original design and was it ok? I wasn’t sure how I felt about it- but at the same time- I appreciated her take as an artist and didn’t want to interfere too very much.

Fast forward a year and a half later when our dolls came. For Zuzu I had asked to have the eyes deep blue and heart shaped- because she is both full of heart and wears her heart so openly. The hair- Oh I was as specific as I could be about the hair. When our friend Molly had photographed our family I had swooned over the strawberry blonde locks she managed to capture of their early childhood. This, this I wanted commemorated as they aged and their hair starts to turn more like my own. She created this wild tangle of art yarn that both mirrored their style at the time and pulled out the strawberry of the blonde. I had wanted a smattering of freckles on her cheeks because those had recently begun to sprout. Zuzu, while routinely bathed in sunscreen would occasionally make it out of the house without or manage to wash it off before an afternoon of outdoor play. We would of course give the grim reminders of how darling freckles can be a precursor to skin cancer, which runs rampant in our family and Zuzu would reply how her teacher told her they were angel kisses. Sigh…

Of course we also had to have a series of accessories for the doll because otherwise it really wouldn’t represent the fashionista that is our children. Fairy wings, purses, shoes, scarves and hats. These dolls by far have a better wardrobe then me.

Out comes the Quail’s doll and with the newly designed eyes. Indeed they don’t look like the eyes of our friend’s dolls. Really, they look pretty similar to Zuzu’s dolls eyes. Much like how the Quail looks more like us than she does others with Down syndrome.

Remember that episode of Glee where we learned that Becky’s internal voice was Dame Helen Mirren? And Becky’s monologue:  “You may be wondering why I sound like the Queen of England. In my mind, I can sound like whoever I want, so lay off haters.”   

DSC_5206Well in the meantime the Quail has fallen in love with Sadie, the blonde,Target version of an AG doll. She was quite specific and insistent in which doll she loved and really, who am I tell her it doesn’t represent her right?

Quail day: I’m back…

I’m back.

Last week- I don’t know exactly how to explain it other than my brain and heart woke up again. I knew this fog I had found myself in was likely- but when you are in the middle of it- sometimes it is just so hard to see till you are nearing the daylight just outlining  that fog.

When we were debating having Sugarplum the thing that crossed my mind was that while well intentioned, the necessary separating of another apron string that happened between Zuzu and I that lasted about 2 years of her young life.  I know it’s biology- a momma’s focus turns inward to grow the little one in her and then to continue that in the first year growing her on the outside during that time when life is still so very fragile. Still as much as Zuzu adored both the idea and fact of her baby sister, we would catch glimpses of her by herself while I laid as still as I could willing my stomach not to heave and then contract. While we spent 45 minutes of every 2-3 hours syringing drops of milk I had just pumped into the Quail’s tentative mouth, while I loudly (and not ironically) demanded quiet from the household so I could beg the Quail to stay latched on. What willed us through this though was the equally apparent sight of Zuzu reaching out her hand to the Quail while they simultaneously nursed, cuddled on the couch and reached for each other through the fence on the playground. They were sisters first as they patiently waited to grow into playmates and friends.

The thought of yet another apron string detaching between Zuzu and I and now that even heartier one between the Quail and I loomed ahead though. And while I knew it would again be as fruitful as it was necessary, the advanced warning of the maternal fog that was about to set in for a couple years duration did little to prevent the overwhelmingness of it.

This past month as Sugarplum has become a bi-pedal little person we’ve been slowly introducing things other than momma milk to her diet. I say slowly because she hasn’t taken to it with much vigor for the past 6 months. She has learned to sign “all done” and shake her tiny head with a fervent “no” and Stanley Kowalski the offerings of “people food” promptly off of her tray. And since she is our baby, and because I’m old and tired, it is so very hard to “outstubborn her” as the good doctor has prescribed. We’ll get there, no doubt, if the Quail has taught me nothing, she’s given me a renewed emphasis on the glory of patience and conviction. But in the meantime, I’ve been slipping more and more cow’s milk into her cups and weaning myself off of my pump, if not her.

This alone has woken me up, to not be so saturated in the momma hormones throughout the day. And then, this past week, it was like my brain sat bolt upright remembering itself. Lovey asked me if I knew for sure what the Quail’s IEP team was recommending for next year. I recalled that the teacher had said she had been speaking to the 4k teacher at the school where the special education program is housed for the county about the Quail and wanted her to start spending some time there and to come to special ed 5 days a week. Beyond that, I knew no specifics. Lovey then decided to send a note to the Quail’s special education teacher asking for clarification. What came back, that was the jolt I needed. Yes she wanted her to spend some time each day there. What was the shocker was it was calendar/math and phonics sessions she felt the Quail was capable of. But that was all.

This moved us to action. I began tentatively emailing our village- cyber and IRL folks who have been there, done this, here in our system and across the country. Lovey did the same, and then one day- he sent me a note after reading what I had said to another mother. He noted how little like myself I sounded- that I sounded uncertain- not knowing what is the right path for the Quail. That in talking about her we need to focus on her strengths and abilities and lead with that because of the prevalence of stereotypes that surround Down syndrome, people hearing about her will latch on to what they already know about people like her- the weaknesses and difficulties and not hear what we are saying about the real her. I have never been more in love with this man. The student became the teacher. These past 17 years of knowing each other- of sharing my heart with him of showing and including him in the world of disability that I’ve grown up with and how we best serve others in their own community, of how we talk about people- well it was ingrained in his heart and mind and he brought it back to me when I was at my most vulnerable, overwhelmed and doubting of myself, my daughter and what I know. What. I. Know. What we know about this individual that is our heart and light.

I may not be well versed in the education system and most of what I know about offerings locally for others that come with an extra chromosome is third person removed, but it included including the child in the less academic portions of the day- very little inclusion- but mainstreaming into the regular classroom for things like lunch, recess, art, gym. Rarely academics without a fight. And here was our teacher recommending the academic portion because the Quail- well frankly she knows so very much.

So Lovey headed down to the local elementary school in our town. You know the one where Zuzu goes? The one where the Quail went for her therapies when she turned 3 and started with the education system before a segregated classroom even existed for preschoolers here. Now public 4K in our state is for children that are “at risk”. There are limited spots and we want one. The 4k teacher willingly told Lovey a bit more about the class. About the fact that in this class of approximately 20 students, there are to date, 7 native languages. The joy of a college town- a very international community. This was sounding just perfect. The Quail- her receptive language- it’s near normal. She understands what you are saying. She just has trouble expressing herself in a typical form back. But this teacher- this teacher already works with that fact, albeit for a different reason, in her classroom everyday. Why not one more?

Lovey asked what concerns she might have about including the Quail in a typical 4k setting. She mentioned that attention span and focus can often be an issue and it can often be overwhelming coming into such a large classroom environment for the first time. We parroted back what we have been told about our bird. She is great with work assignments and therapists have frequently noted the expanse of her attention span. She also is currently in private preschool with 1 teacher and 16 classmates.

“Well then,” came the reply; “scratch that.”

So, this past week, we let the Special Education teacher know that we were not in favor of her continuing at the separate school, in the separate class. There is so very much more to say about the Quail’s experience and the impact it has had on her this past year….and I can and will go on. But this fog that is slowly dissipating, well it means I’m also keenly aware of all the other things around me that were out of sight and mind in this period of growing another little person both in and along side me and they are calling for my energy and attention as well.

Last week when Lovey spoke up on behalf of our bird, our teacher asked what our goals are for her and out of a vault that had been stuck shut- came pouring the expectations for equal rights. For equal education. For inclusion. For the Quail’s right to be a part of a typical classroom and continue to learn just as she has shown us for the last 4 years that she is capable and eager to do. What we know are concerns for her and how we know they have been successfully addressed in the past and can be in a typical 4k setting.

We made a choice 4 years ago to include her in the same typical daily setting as her sister knowing that if we had to move her into more specialized care, that we would- but that she would need to show us that she needed it. Since she came into our lives we have assumed ability, not disability. We have looked at her and known and assumed capability and as she has shown us she needs support, we have sought it out. And she has thrived. She has grown. She has learned.

My girl- she is entering a system that expects her to prove herself in a way that someone not bearing her label and features would never be asked. Children that know what she knows in her head- they would be able to sit down alongside the other children without having to earn their way there. Because in this country- education is a basic right to all children. Except possibly those that have to work a little harder to keep up. Except maybe those that need it even more.

But that’s ok. I was born for this. The generations that have come before me and educated me personally, academically and professionally- my gratitude is with them. They fought to have children like mine have first the right to be born in to this world, then given the medical care to live a life and then the right to be supported in their own homes.

My generation- we are here to continue on that legacy. We are here to show the capability that lies within. To continue to advocate for equal rights. And that begins with a good and thorough education.

I hope this won’t be a fight. Our family will go in to these meetings with the assumption that we are all here to do what is best to educate the Quail. But, we will lead these meetings now making sure the educators know what we know. What the Quail knows.

That this bird, this bird can and will fly.

Five Minute Friday: friend

…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.



The blessings of friendship in my life; they come from all around me.

They do double-duty as family members, as co-workers, as family helpers, as cyber-sisters. As daughters. As husband.

Some by blood, some by choice. Some unexpectedly. All dearly.

Some are so near that they hear the daily goings on and the babble that overflows from my head. Some are so far that they hear even more of that daily internal dialogue I keep. Some I need to catch up, and some stay caught up by their constant reaching out. They know my strengths. They know my weaknesses. They know my need for a cheerleading session and a good job email and pat on the back. They know when I’m just venting and when I need to problem solve. They ask questions that help me think and organize the thoughts I already have. They know my heart and they wait for me to show it. They read my words and see my pictures. They ask after those dearest to me. They know I need them as much as they need me.

There are minutes and days and miles that are between us but rather than keeping us apart these twines, they bind us together. No matter how much has passed they welcome us back into the fold and offer up a cup of comfort. I do the same for them. My cup, my door, my heart, my mind, my hand, my smile- it is open to this amazing group of human beings that continue to surround us and include us and support us and honor  us by calling us…



corner view: bridges & back roads

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!



This is the bridge I pass by on my weekday lunchtime walks downtown where I work. Traveling down this back road means we are headed on vacation to one of our state’s lovliest beaches.

corner view: architecture

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!


MINOLTA DIGITAL CAMERAWell, ???????????????????????????????I thought about doing a more euphemistic interpretation, but in the end went with the classic perfection of Italy. We went a few years ago and it was so very lovely. I still love browsing through my pictures from that trip.



corner view: shadow

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'm a shadow of myself while I wait for my morning coffee.

I’m a shadow of myself while I wait for my morning coffee.

Surround yourself with people who make your soul feel happily caffeinated. Karen Salmansohn

corner view: spring

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!


by Lisel Mueller

Going south, we watched spring
unroll like a proper novel:
forsythia, dogwood, rose;
bare trees, green lace, full shade.
By the time we arrived in Georgia
the complications were deep.

When we drove back, we read
from back to front. Maroon went wild,
went scarlet, burned once more
and then withdrew into pink,
tentative, still in bud.
I thought if only we could go on
and meet again, shy as strangers.