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When I was a kid I loved Barbie.

Oh, secretly of course, I knew loving that mainstream bit of blonde freakishness with her otherworldly proportions, built-in high heeled feet and rock-hard (nipple-less!) bosoms would not win admiration for me from my parents, but...yeah. I loved her.

In retrospect, it was more accurate to say that I wanted to be her. I had scars all over my face, remember, my hair would never grow long, I was impossibly ungainly and awkward. I had thick glasses. Hearing aids! It was pretty painful.

If you had given me a doll at that point in my life with hearing aids, I would have been horribly offended and pissed off.

I thought of that many times over the years as I see more dolls with disabilities entering the market.

While I know that I would not have wanted one – struggling as I was to fit in, have friends, be accepted, I would not have touched one of those dolls with a disability with a ten foot pole. I wanted Barbie! I wanted a doll that everyone wanted because I wanted to be included and ft in. I didn’t want a doll that looked like me; I wanted a doll that was desirable, that others wanted, that was cool.

Giving me a scar faced doll or a doll with hearing aids would have felt to me even more isolating. Like, “oh, thanks. A doll just like me, exactly what I wanted. I’ll just sit in the corner here with my different-like-me doll and play because all the other kids have Barbie, but NOT ME because I’m “special.”” *weak fist thump*

Now, if I had seen another child playing with a doll with hearing aids… a child without hearing aids playing with a doll with hearing aids? That would have blown me away. Big time. Actually, that would have meant the world to me.

Dolls with disabilities

I have gradually come to think that the best part of dolls with disabilities isn’t for the kids with disabilities so much as for everyone else. That is to say, that dolls would disabilities could have an enormous impact on the adults of tomorrow by normalizing disability for children of today. Give the dolls with hearing aids, who use wheelchairs, who have a chest scar from having had open heart surgery, give the bald dolls – the cancer survivors – and the dolls that use walking crutches, the dolls with interesting facial shapes, the dolls with Down syndrome – give those dolls to kids who don’t have that disability. Give it to the kids who don’t have a disability at all even.

Give the dolls with disabilities to kids who don’t have that disability (or any disability)

mainstream the dolls with a disability. That’s what I’m talking about. I don’t think kids with disabilities need to have a doll that looks like themselves necessarily; I think it’s more powerful for them to see another kid playing with a doll that looks like themselves. To see that a representation of themselves can be wanted and included.

When Ashton Drake contacted me about “Special Joy”, their doll with Down syndrome, I was really curious and eager to see what a doll with Down syndrome would look like. I mean, how would this work? How would you make a doll with Down syndrome and include enough features to recognize the doll as having Down syndrome but at the same time, avoid negative stereotypes?

They sent us Joy and… WHOAH.

DSC_0841

 

This doll is ah.mayyyy.zinggg. She is almost disturbingly life like. The part of her that express Down syndrome are her bent pinkie, her sandalfeet. She has a single crease in her palm and her legs look as if they could be low tone – the way they fall reminds me of how Moxie’s would fall when she was a baby.

DSC_0844

Moxie loves her. Mack loves her too.

I don’t think Moxie (or Mack) loves Joy because she recognizes that Joy has Down syndrome or that Down syndrome has any part in this, really. I think she loves Joy because Joy feels like a real baby – her limbs are fashioned from some incredibly life-like substance, her weight is perfect, she feels like a genuine human baby.

I think anyone who likes dolls – adults included – would love Joy. And like I said,  I would like to see this doll, along with other dolls with disabilities, being played with and loved by people who don’t necessarily have a connection with Down syndrome. That someone with Down syndrome might at some point see a person without Down syndrome playing with a doll like Joy and feel something really warm cackle around in their heart, a fuzzy from the the delight that acceptance and inclusion bring.

Giveaway

With this month being Down syndrome Acceptance Month, Ashton Drake will be giving away a Special Joy here on this blog.

The doll retails for around $130 – she is thrillingly lifelike. Stunningly crafted. She’s a collector’s doll who is tough enough to handle the love that Moxie and MacQuinn wrap her in. She’s a doll that I’d encourage everyone and anyone who loves dolls to buy – or give to someone else who loves  dolls. This is about a beautiful doll that was made with care and detail (and no, they did not pay me for writing this stuff! )

Entering the giveaway is easy. Just comment or answer this question: do you like dolls?!

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For more info on Ashton Drake and “Special Joy” (along with way better photos of her!), please visit their site HERE.

*giveaway limited to the US unfortunately *

giveaway winner will be picked at 5am on 10/31, Lost Coast time 😉

 

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little moxie.

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October was Down syndrome Awareness Month and we are still celebrating it through a  Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is Kenna, creator of Amathia Soapworks. A bit more about her:

 

Amathia Soapworks became Kenna's version of the 9 to 5 in March of 2011, after over 8 years of formulating, testing, and learning. All of Amathia's products are made in small batches with the highest quality ingredients, while being as close to the Earth as possible. Sustainability and eco-friendly business practices always ties into formulation, packaging, marketing, and sales.

 

Each product and formulation is extensively tested by Kenna, as well as her family and friends, before it is produced for you. If it’s not good enough for her skin, her husband’s skin, or the skin of her children, it is not good enough for anyone.

Moxie is a wondrous blend of citrus, cucumber, and jasmine for the perfect stimulating combination with a sweet undertone. Full of spunk and sass, but mellow and chill when enjoyed in the bath, Moxie was formulated with the assistance of Kenna's toddler whom the soap is named after. The little one chose the base fragrance, each of the colors, and helped paint the shimmery tops on the very first batch. Moxie quickly became her favorite soap for bathtime, and has become a standard part of the Amathia Soapworks line.

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How cool is this? I mean, really.

To enter, just leave a comment on the Rafflecopter below – extra options are also available. US only. Winner selected randomly in ten days (11/12/12).

 

a Rafflecopter giveaway

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More Amathia BodyWorks – Please check them out – awesome soaps, awesome prices.

 

 

 

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little

moxie.

***

This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is Gwen, creator of Carlito's Creations. A bit more about her:

 

Gwen is an IT professional with a great love for crafts and recycling. What better way than to combine them both?!?! She came up with this idea while looking for a new ID Tag for her Chihuahua, Carlito, and figured out an inexpensive way to make him an ID tag made from recycled bottle-caps. She started just making them for all her friends' dogs and then decided to branch out and sell them on etsy.

Along with Pet ID Tags, she also makes personalized key-chains and magnets all from recycled bottle-caps. With Carlito as her right-hand man, she is gaining a fan base and having so much fun in the process! Please check out Carlito's Creations on etsy (www.etsy.com/shop/carlitocreations) and on Facebook (www.facebook.com/CarlitosCreations).

For all you Moxie fans, if you order during the month of October, you can use the coupon code GOTMOXIE15 and get 15% off your order!!!!

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To enter: just fill out the Rafflecopter below!

a Rafflecopter giveaway

 

Details: Giveaway open to US residents. Open from 10/17/12 – 10/24/12, winners  announced directly via email.

Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.

Moxie has challenged us to do the same: to live our life, our one precious life, with a little

moxie.

***

This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

 

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce.

 

Today's Champion is Sweet Redemption, and this is a message from owner/creator Jess:

 

What an honor to be a tiny part of such an important celebration!  A beautiful man once said, "If anything matters, then everything matters."

Life is to be lived fully… from the inside out.  Every single person on the face of the planet is a unique, perfectly crafted work of art!  We long to look in the mirror and find something to celebrate – to look into the face of another person and celebrate!  Too often we find instead disappointment, judgement, sadness and rejection.

This month we celebrate the lovely people with (as Meriah calls it) the gift of an extra chromosome – because in my experience – these amazing people reflect back to us what we long to see.  A ready smile, a unique perspective, and always… sunshine. 

I have gone through struggles… as everyone has… and I have come to hold onto that quote like a lifeline – I matter! You matter! Life is precious and worth every second of living it!  My art is a way of celebrating those moments – one step at a time – allowing room for the lament, knowing that the bitter only makes the sweet more sweet.  Sweet Redemption is about just that… that beauty can be found anywhere – if you only have the eyes to see it! 

I am filled with gratitude as I celebrate with you!  I hope that whoever "wins" one of my Moxie Scarves will wrap themselves in a little more spunk… fortify with fortitude… and BE exactly who you ARE! 

I will also be releasing limited editions of my Moxie Scarves all throughout the month of October on my Etsy shop.  I will be donating $5 from every scarf to a fund to get Meriah and her family on their way to their dream of raising awareness globally and eventually providing employment training for people with disabilities. 

So – scurry on over to my Etsy shop and get your Moxie scarf – wear it proudly and celebrate life!

x jess

www.etsy.com/shop/sweetredemption
Facebook: Sweet Redemption Fiber Art

These scarves are BEAUTIFUL – they are made of alpaca wool with SPARKLE – they are butter soft with vibrant, deliciously playful colours

Verve! Vigor!

You know. Kind of like a little girl I know…

Details:

There are two scarves, one that is yellow/green/grey with silver sparkles and the other is purple/pink/fuschia/magenta with silver sparkles

 

To enter, just answer the following question below (or on the With a Little Moxie facebook page): what's your favorite colour? There will be 2 winners for this giveaway!

 

[sorry, because of pricey shipping, this giveaway is limited to the US/Canada; giveaway ends October 11th, midnight Pacific, winners announced on the blog on Friday the 12th – email address MUST be attached to comment]

Happy Month with Moxie, and please don't forget to swing by Jess's shop on etsy and show her some love. AND! Did you catch the part about Jess donating $5 off of every order toward our PAN AM OVERLAND trip in which we will seek out our Inn?! YES!

Thank you, Jess!

winners chosen by random.org – #2, Deanna and #9, Jennifer

This is the second of a two-part series – a conversation with George Estreich, author of The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit , and Amy Julia Becker, author of Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny.

Amy Julia Becker will be giving away three copies of her book, Good and Perfect Gift. To enter the giveaway, please leave a comment answering her question for you. That’s all you have to do to enter. Winner will be chosen by random.org – make sure your email address is included in your comment so that we can let you know you won.
More on Amy Julia Becker
Website: www.amyjuliabecker.com
Amy Julia’s Awesome Blog: Thin Places
Amy Julia on Facebook
Amy Julia on Twitter

My Review: A Good and Perfect Gift
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The Questions:

1. You have both written memoirs related to your daughters, both of whom
were born with Down syndrome. Why did you feel the need to write about
your experiences?

The genesis of A Good and Perfect Gift was a journal. After Penny was
diagnosed with Down syndrome two hours after birth, the easiest way for me to
try to figure out what I was thinking and feeling was to write about it. I sometimes
felt like a little kid again because my mother was helping out a lot and she would
send me to my room and say, “Take a nap, or write.” She knew what I needed.
About once a month I would post an edited version of a few journal entries on
a private blog intended only for our friends and family. In time, I realized that
parents who didn’t have children with special needs nevertheless resonated with
many of the hopes and fears and doubts and joys I was experiencing. By the
time Penny was two, I felt compelled to write about the whole experience in a
more public way, in hopes that it would prompt questions and reflections about
the goodness of life and the challenges and rewards of parenting.

2. What do you hope readers will gain from your memoir and your
perspective?

I think of A Good and Perfect Gift as a meditation on the nature of love,
particularly parental love, I suppose, but really love in general. So much of our
culture is built upon the assumption that our identity comes from our abilities, and
this assumption is destructive to all of us because it implies that we are only so
valuable as what we can achieve. But if our identity is based upon the fact that
we are loved and that we love in return, it enables us to see one another as gifts
and to give and receive with humility and gratitude. I hope readers come away
from this book with greater freedom to love and to be loved.

3. You have read each other’s books; in what ways do you think your books
are both similar and different?

The Shape of the Eye is broader in scope than A Good and Perfect Gift. For one,
Laura, George’s daughter, is older than Penny, so his story spans more time
and perhaps demonstrates greater wisdom because they have had more time
together. George also weaves in his own relationship with his parents more than
I do. Laura’s medical challenges in the beginning of her life were very different
than Penny’s, and the reality of Laura’s physical difficulties early on led George
to different places as a result. But both books attempt to simply tell a story of
a family. I hope both of them do so with beauty and integrity. I know George’s
does.

4. What was the most challenging aspect of telling your story?

Writing about the beginning of Penny’s life was particularly difficult. I was working
on the book years after those early days, and I had resolved so many of the
emotions. The fear and grief and anger was gone. It was tempting to make
editorial comments, to assure the reader that I wouldn’t feel like this forever, or
even to wonder out loud how I could have been so upset. But of course I needed
and wanted to tell a true story, and the true story of my life as Penny’s mother
includes the weeks and months of confusing emotions after her birth.

5. If you had to write it all over again, would you change what you said in your
book? If so, what would that be?

There’s one passage that I often read when I’m talking about the book in public.
It happens when Penny was five months old and some high school students
come to our house and say, “You have the perfect life.” From there, I go on
to think about the meaning of perfection, the ways in which our life doesn’t
conform to cultural standards of perfection, and what it might mean to think about
perfection differently. In retrospect, I wish I had written that passage with a little
more clarity. One of my struggles since I was a little girl has been perfectionism,
which I now see as the attempt to pretend to be perfect. Every perfectionist
knows that perfection (by any measure) isn’t possible, but the pretense of it is. A
child with Down syndrome can’t pretend to be perfect. Penny’s presence in my
life knocked the perfectionism out of me, which was incredibly jarring at first, but
also incredibly freeing over time. If I were writing it over, I’d edit that one section
to be a little more clear about this perfection stuff.

6. How did you come up with the title of your book and how do you think it
reflects on the story’s overall message?

I’m terrible with titles. I had originally named the book “Just Penny.” I liked the
sentiment—there’s a scene in the book where I realize “she’s not our daughter
with Down syndrome. She’s just Penny”—but I didn’t love the way the words
sounded out loud. They also have an unintended double meaning that she’s
both “Simply Penny” and “Righteous Penny.” So my agent and I spent a few
days brainstorming, and she ultimately came up with the title A Good and Perfect
Gift. I love her choice because it mentions themes that run throughout the book
as I consider what makes life good, as I discover a new meaning of perfection,
and as I come to understand what it means to receive Penny as a gift. It’s also a
reference to a verse from the Bible: “Every good and perfect gift is from above,
coming down from the Father of the heavenly lights, who does not change like
shifting shadows” (James 1:17). In this way, the title also reflects my growing
understanding throughout the book that God has a purpose in Penny’s life, and in
ours.

7. What was your favorite part in your story?

It’s hard to pick a favorite part, but I laugh out loud every time I read the part
where I’m telling my husband Peter that Penny’s hearing might be compromised
and she might have trouble hearing the “sh” sound. He responds, “Good thing we
didn’t name her Sheila.”

8. What was your favorite part in Amy Julia/George’s story?

Again, hard to pick a favorite part of George’s beautiful book, but I find myself
returning again and again to one paragraph:

A syndrome means, at root, a ‘running together.’ When you have a child, it all
runs together: the heart defect, the eyes, the way her voice sounds, the name
of the speech therapist, the worries over the future, the joys of discovery, the
sliding sense–slow, quiet, enormous, an avalanche in the skull–that different is
not as different as you thought. The genes produce the child, who lives a story,
whose story is bound up with yours. So reducing a child to a heap of medical
fragments is, for a parent, a complicated and dissonant act. It is a necessary
fiction, a story one tells only in order to move on.

George states it perfectly, and his words have informed my own thinking about
how a diagnosis is only the beginning, and perhaps even a false, if important
beginning, to understanding a child as a full human being with an interwoven
story.

9. What projects are you currently engaged in? Any new books from you on
the horizon?

My biggest project at the moment is moving our family of five to Connecticut!
With that said, I am working on a short ebook about prenatal testing that will
come out in September. I have two books knocking around in the back of my
head, but it will be a few months before I have time to sit down and listen to what
those ideas have to say.

and…
10. Do you have any questions for the reader?

What is one gift that your child has brought into your life?

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Thank you, Amy Julia. I am honored to have you here.

Readers, by answering Amy Julia’s question –What is one gift that your child has brought into your life?or by answering my own question – what is one gift that disability in any way, shape or form has brought into your life? – you will be entering to win one of the three (3!) copies of A Good and Perfect Gift that she is giving away.

If you don’t want to leave a comment via Disqus (the comment system), then comment via facebook on the post on With a Little Moxie’s page, or via email.

Winner will be selected by random.org and announced on MONDAY, JULY 2nd

PS
If you’d like to just go ahead and buy your own copy, Amazon is having a sale till the end of June for the Kindle version: $2.99!! Click HERE

What I wish most is that I had the prize of choice for everyone who donated. That is, that I was able to give you all the object that you most desire as a way of saying “thank you” for the pure generosity and loving support you have absolutely showered upon me.

Perhaps it’s my hormones, but just thinking of many of you – who do not have much to give – and knowing that you made real sacrifice to donate… well, I’m a blubbering crying mess. It means so much to me. It means so much to me.

And it means so much to the kids like Oliver that are battling leukemia, means so much to everyone that is going through cancer treatment. You’ve honored them as well as the people that have already died, and I can’t thank you enough.

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Random.org chose everyone, fair and square. 

Winners:

#50 – Arlene Green – You’ve got some soap headed your way


#78 – Meredith Novario – paintings!


#211 – Katie Hymans – t-shirt


#223 – Jonathan Hootman -flip camera


#162 – Helena Rincon – bicycle helmet


#20 – Jane Berliss-Vincent – amazon gift card


#139 – Ruthann Haffke – bicycle tune up

*** PLEASE LET ME KNOW WHERE TO SEND YOUR PRIZES!! ***

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I’m still $54 away from the minimum, but I want to pause on any donation requests as I am just waiting for two checks to clear with LLS. With those cleared, the goal will be met.


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THANK YOU. So much. So very, very much.



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