Saturday, July 30, 2011

10 seconds to help

 Dear Friends,

I'm asking for your help today, and it will only take 10 seconds. One little click of the mouse will mean so much to Reece's Rainbow...

Please take a moment to vote HERE for Reece's Rainbow...details in the letter from Andrea Roberts below. (scroll down to "Most Innovative Use of Social Media by a Charity"" under Charity Categories.)

THANK YOU!!! :)

~ Patti

**********************
 
The Classy Awards are the country's most prominent recognition of philanthropic/charitable organizations each year. Reece's Rainbow has made the Top 25 Finalist list for Most Innovative Use of Social Media, and we need your vote to WIN!

We are very excited to be nominated for this award in particular, because it is our use of social media formats that has totally transformed this ministry in the last 2 years. The power of our newly designed website, family blogs, Facebook, Twitter, and now our IPhone and other phone apps have truly catapulted RR into a position of even greater life-saving influence. We harness social media in a focused effort to save money on overhead so we are able to maximize all donations for the benefit of the children and our committed families.

The official description of this category is: "Awarded to the charity whose submission demonstrates the most forward-thinking, creative, and effective use of social media to spread the organization’s message or to build financial or personal support. The nonprofit that wins this Classy Award will be one that embraces new social media technology and seeks to build upon that technology in order to further its organizational goals." 500 children in 5 years is nothing to sneeze at, folks! MAKE THIS COUNT!


YOUR VOTES will give RR the opportunity not only to WIN and raise media visibility, but to give a more detailed speech/presentation at the Awards Ceremony in San Diego in September. People Magazine was BIG, but the Classy Awards are even more valuable to the future of this ministry!


This will be HUGE media exposure for RR, right ahead of the Buddy Walks and our Christmas Angel Tree, so we really need your help please! And if we WIN, it will mean a $15,000 prize for our Voice of Hope fund!


*** It only takes one minute of your time to click on this link, scroll down to "Innovative Use of Social Media", vote for Reece's Rainbow, scroll back up and hit submit my ballot. That's it! Unlike other contests, YOU ONLY GET ONE VOTE so MAKE YOURS COUNT for our waiting children! ***


Please share this with all of your friends, family, Facebook, blog, everywhere! Post it at the TOP of your blogs with our new Classy blog button! (AVAILABLE LATER TODAY) Trend Reece's Rainbow on Twitter with #CLASSYAwards This is some of our steepest competition yet, and we are honored to be included among all of these amazing "servants hearts"!


Again, the link to vote is http://classyawards.stayclassy.org/classy-awards/voting


THANK YOU and HAPPY VOTING! Don't put it off, just do it now and pass it along! The children thank you!


Andrea Roberts, Executive Director

Reece’s Rainbow Down Syndrome Adoption Ministry

Thursday, July 28, 2011

what I wish they knew

Dearest Lily,

We just finished our morning ritual of breakfast, play time and bath, and now you are curled up in your pink hooded towel, fast asleep in the overstuffed chair beside me. As I was getting ready to write this post, I clicked on the feedjit tab on your sidebar, opening it up to see who was coming to visit you today. One of the referring sites was as usual, babycenter...but instead of the post being one from our usual group, the Down syndrome boards, it was from another group.




And Lily, I choked back tears at the words that led someone here today.



Without going into too many details- there is a little life that's hanging in the balance because of the possibility of Down syndrome. You see, not everyone understands the beauty of that extra copy of the 21st chromosome. For some, the fear and uncertainty of what that means is almost too much to bear, and they have have no way of knowing what I know....




...that a baby born with Down syndrome is not a burden and not a nightmare to be avoided- that in fact they might be about to throw away the greatest gift anyone could receive in life.

And it wasn't the first time that this has happened- someone finding their way here because of a quad marker screening or amniocentesis. The truth is that just about every day there are mamas who are receiving a diagnosis or potential diagnosis of Down syndrome for their babies, who come here looking for answers. One little gadget installed on my sidebar has given me a glimpse into a world of hurt and dispair that is out there- people coming by googling their fears..."chance of Down syndrome - help" or "sick with worry" or considering abortion".




I pray with all my heart that they will see your sweet little face staring back at them and choose life. I pray that reading our story makes a lasting impact on mamas facing those lifetime decisions, and that they somehow find an anchor to hold onto.



I wish so much that they could hold you for one minute, sweet Lily. Just one minute looking into your star studded almond eyes, or holding your tiny hand with the little bent pinky... and they would know.



They would know what I know, knew instinctively from that first moment I held you in my arms on that fate-filled and faith-fueled day so many months ago. That you were indeed fearfully and wonderfully made,  and that no amnio or quad marker could have foretold the love I feel for you.

Nothing could have prepared me for that overwhelming sense of gratitude and awe for being entrusted with such a gift. And even now I wonder if there will come a day when doctors and medical professionals arm their patients with pamphlets and websites and information that show a truer picture of what life with Down syndrome means.



Because it means this...




and this....



and this...




It means a journey just like any other journey of parenting- forever having your heart go walking around outside your body. It means experiencing a greater sense of purpose because of the life that has been entrusted to your care.



It means wondering how you could have ever doubted your capacity for love, and wishing you could somehow go tell every fearful and anxious mama: It's going to be so good.




Holding you closer today,

Mama oxox

Wednesday, July 27, 2011

winner and a new look

The winner of Jack and Lily's Giveaway Wednesday is...



my family said...
oh holy night! so hard to pick one:)

Congrats, April- send me your address so I can have those earrings shipped to you!

We'll be back today with more of Lily...in the mean time, do you like the new banner? It is now my favorite.photo.ever.

Happy Thursday!

Jack and Lily's Giveaway Wednesday

Welcome to Jack and Lily's Giveaway Wednesday!

Before we get started, I wanted to share a fantastic photo from my beautiful and creative friend Tekeal, all the way from Bern, Switzerland. I met Tekeal via email last December, when we were hosting our Home For Christmas Giveaway. My sweet friend from the other side of the globe shares my passion for orphans on Reece's Rainbow and is years ahead of me on this journey of parenting a child with special needs. She writes beautifully on her blog Livia the Great, and I am determined to meet up with her some day... I have a world wide tour planned when I retire and Switzerland is definitely one of my stops;)

Tekeal and her daughter were supposed to appear in my photo montage the other day, but poor Livia was sick with pneumonia, and they were entertaining house guests...her adorable photo came too late to my inbox, but I could not resist posting it here today- I LOVE IT!

"Go ahead and mock my style, but do not mock my daughter who sports something extra!!"

*Hugs to you friend, and to the beautiful Livia as well:)


On to Jack and Lily...

These two are a riot to watch lately. For some reason Jackson's crazy antics just send Lily into hysterics, even if it's just a game of peekaboo.





The other day he was just hitting an inflatable ball on his head and making a goofy expression, and Lily was in stitches. Melt.my.heart.
There's a definite bond between my two youngest, and I can't wait to see how that plays out as they grow older together.


My favoritest face- the crinkly eyed smile.


We finally got Lily signing "more" on video. Please ignore her just-woke-up bedhead look, as well as the groceries on the floor around her. I just got home from shopping and she was having a blast with all the empty bags...until she spied me munching on a cookie. Girlfriend knows how to get what she wants, as she quickly started yelling "MO MO MO" and pummeling her little fists together.

video

Needless to say, she got the cookie.


And now for our giveaway!


I found Stella Bella Boutique through another blog a few months ago. I bought my mom the sweetest pair of pink mum earrings for Mother's Day and immediately bookmarked the etsy shop for future shopping. I love just about everything there, especially these darling vintage inspired doily earrings.
 


One lucky commenter will receive these sweet earrings by leaving a comment here today. Random.org will pick a winner at midnight, and tomorrow I'll be back to let you know who it is!

Just to make things fun, share your favorite Christmas song. I KNOW it's July- but in our home that means Pandora is set to Bing Crosby Christmas until December. Well, maybe we might take a break now and then for Disney tunes or Dario Marianelli, but Bing will be belting out his stuff for many months to come:) So just tell me your fav' and don't forget to have a...

Happy Wednesday!

Sunday, July 24, 2011

Style Down Syndrome: Bring it.

*photo montage below


Last week Dr. Brian Skotko, a Physician at Children’s Hospital Boston’s Down Syndrome Program wrote the following response to an article written by John B. Thompson at GQ Magazine...




On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.


********************

According to Thriving, Children's Hospital Boston's pediatric health blog, Dr. Skotko's article went viral, "gaining mass attention on Twitter, Facebook and blogs, as well as mainstream media".

For several days my little site meter reflected the same, as the hits on Lily's blog doubled
shortly after blogging about both the GQ article and Dr. Skotko's blog post. Apparently I wasn't the only one dismayed by the insensitive language used in GQ's article, or the only one ignited by Dr. Skotko's eloquent and impassioned response.

 The following quote is taken from Thriving:

“I have been impressed–although not surprised–by the speed in which the Down syndrome community has responded to this hurtful language from GQ magazine,” says Skotko.  "Whether by e-mail, Facebook, Twitter, or blog, Americans across the country are shouting loud and clear that people with Down syndrome deserve our respect and admiration.”

We're a tight-knit community. Whether it's rallying around orphans overseas who share our loved ones' extra chromosome or joining together to make a stand against those who would call our kids a burden to society- we've got our children's backs.


I asked Lily's readers and my friends in the Down Syndrome group on Babycenter.com to contribute photos for a response to GQ's article. I am so thankful that so many of my friends were willing to sacrifice their style reputation on the web to make a statement about their kids :)

I love compiling these types of montages or posts, and even though this one was meant to be on the lighter side, I still get choked up watching it. Well, who wouldn't?! Our kids are amazing, and that extra chromosome evidently brings extra emotion and devotion.

Style Down syndrome. Bring it.



*if you cannot view the player refresh the page. Also, pause Lily's playlist at the bottom of the page to hear the slideshow's music.

Saturday, July 23, 2011

Friday, July 22, 2011

typical toddler

Dearest Lily,

Sissy finally came home from vacation with her camera, and I was able to take a few pictures this morning before our day started. There's a penny carnival at Central Park followed by an old fashioned ice cream social...your brothers and sisters have been asking every ten minutes when we're leaving so I need to make this quick!

You've been learning so much lately, just really turning into a little toddler as far as your fine motor skills and language...and attitude.  I'm learning that "toddling" doesn't necessarily define this stage- you show plenty of signs of turning that corner from babyhood without actually walking.

For instance, you're perfecting your pincer grasp every day...

Photobucket

You love to feed yourself...Kix cereal, cheerios, french fries, green beans, pasta, bites of pizza...there isn't a food you don't like.

We tried to catch you saying and signing "more" on video. As luck would have it you did do both- only the camera stopped because the card was full. When I switched cards you decided to be a tease and employ your fake laugh when we asked you to perform.



And of course as soon as I switched from video mode to still photos, you signed and said more.

Photobucket

Stinker!

This is your favorite position for eating..foot propped on the tray alongside your food, and in between bites you suck your big toe. Disgusting and adorable all at the same time.





You still like to display what is fondly known as "the classic bulldog" face when we try to get you to smile for pictures.



 Followed by your deadpan/bedhead look. It's the face that says, "I am not into doing a photo shoot at the moment, Mom- just hand over the cheerios." If looks could kill....


 And as always, you get all goofy when your sister tries to get you to sign for the camera. It's like you know what we're looking for and you will try any tactic to avoid what we're asking you to do. Yup, you're a toddler.









I wish I had this on video...you've turned into quite the little vocalist. If music is on you love to sing along, or sometimes just while you're playing- you just suddenly bust out with a tuneful "aaaaAAHHahhh" sometimes followed by and "oooohhhh" and then you get the biggest grin on your cute little face. 



I'm not sure what this sign is all about..maybe it means "talk to the hand, not to the face" ...because that seemed to be your attitude this morning.



Finally after a dozen lame attempts, I caught you saying "more" on video...you didn't exactly sign correctly, but the word was obvious.. as were the feisty little antics that followed.




Little Miss Stubborn did not want to show us how big she was, did not want to say and sign more on demand, and did not want to smile for the camera...but she DID tell us how she felt about it all...

Photobucket

ALL DONE.

Loving you always,

Mama oxox

Thursday, July 21, 2011

Blessings and Glory

Just a quick update on Teri Lynn- if you haven't had a chance to read her story, you can do so HERE. She now has $16,405 in her grant fund..and when the matching funds kick in she will have over $20,000. My friend Adeye blogged today that there have already been multiple families inquiring about adopting her- I promise to keep you up to date as soon as I hear the wonderful news that Teri Lynn has a family. As always, I am amazed at what God can do through the blogging community.

And speaking of that...I've said so many times here that one of the things that got me through those early months of Lily's diagnosis was this land of blogs. One of the first that I found has remained to this day one of my absolute favorites. I first fell in love with little Charlie- but who couldn't with those gorgeous blue eyes and sweet mop of blond hair- and immediately felt equally drawn to Libby's beautiful and poignant writing. Her blog details her life spent raising her children, and although Down syndrome plays a part in that, it doesn't dominate. Her writing was an anchor of normalcy for me to hold onto when doctors appointments and therapies suddenly filled up my calendar, and I wondered what our daily life would look like years down the road. I subscribe to her blog through my gmail account- I always feel a little rush when I see see her latest post in my inbox, because it's like a letter from a dear friend. I love her photos, her perspective on life, her humor, and her heart for orphans...I just can't say enough about Libby Hodge and her blog, Blessings and Glory.

Enjoy!!

*****************************





When Patti asked me to write a guest post I was both honored and thrilled. Her request was also timely as this Saturday marks the third anniversary of our family blog. And while that might seem like a silly milestone, it also represents the opening of a window of sorts. You see for the first year of our now almost four year-old son Charlie’s life I lived in a vacuum. After his birth and diagnosis of Down syndrome, I felt isolated and alone. I lacked the support system I desperately needed as a mother starting out on a whole new journey of parenting.



Somewhere or somehow, I stumbled across a blog right before Charlie’s first birthday. As blogs tend to go, I was quickly smitten and found myself immersed in the stories of many families. The best part? Most families I was reading about shared something in common with us – they were also raising a child with Down syndrome – and yet this really big deal only seemed to play a small role in their lives. I devoured each story, each picture and the honesty of each word. Seeing other families simply live their lives – even while raising a child with Down syndrome - gave me hope.



I was encouraged to share our story. If I could offer just a sliver of the hope I had discovered online with another family, then it would be worth it. So I set out to write Charlie’s story, which has also become our family’s story.

Initially, the words were slow to form. I had to find my own voice in a world filled with skeptics. I know this sea of negative opinions exists because I once swam in it. Before Charlie, I believed that children who were “different” could only be a strain on life. It wasn’t until my own feet were held to the fire that I realized the real challenge; my discomfort with disabilities had nothing to do with Charlie and everything to do with myself.

In this new life I was certain anything that fell under the realm of “normal” would no longer be a part of our family. Perhaps this was because every authority figure we met early on would repeat ad nauseum a list of all the ways my son was and would be different. Yet they never mentioned he would devour raspberries, adore his brothers, love to dance, have an infectious smile and the bluest of blue eyes.



It was a challenge to balance my emotions - which vacillated between broken, scared and fearful, coupled with an undeniable and unconditional love for my son - let alone write about them. How do you put into words the joy and happiness that can grow from grief and fear?

Often I’m asked about Down syndrome and more specifically how it separates Charlie from my other sons. I struggle with this question because it’s hard for me to say how he compares to his brothers. It’s true that every single cell in his little body is different, yet for the most part he is no different from them.



The differences between Charlie and other “normal” children often emerge in quirky little ways and not necessarily great big ones. For instance, Charlie didn’t walk until he was two years old, which was due to the effects of Down syndrome. But I’m pretty sure that Charlie’s love of books has nothing to do with him having Down syndrome. I can’t help but catch myself wondering: How can my son be fundamentally different yet fundamentally the same?

Perhaps this is why I dwell on the simple moments of our days. Brothers playing side-by-side, family dinners around the table, a morning at the park. These moments hold weight, revealing the true value of this life.



Somewhere along this journey I took off my brave face. I don’t know when or where, it just happened over time. Fear and anxiety miraculously gave way to wonder and joy.

Something happened while I prepared to move mountains for my sweet boy. While I was gearing up to fight a war against my fears, this perfect little boy was working his magic. And in almost four years, my precious boy has impacted the lives of more people than some could hope to reach in a lifetime.

I’ve heard many stories of family and friends who now approach life differently simply because of our towheaded son. Striking up a conversation with the young man with Down syndrome who is bagging their groceries. Refusing prenatal testing because they are no longer fearful of the “what ifs.” Discovering the goodness and grace of Jesus, even accepting him as their Lord.

All this because of a little boy who is simply living the life that God gave him to the fullest.



It also isn’t much of a surprise that because of Charlie, my heart has been cracked open and filled with a love and passion for others with Down syndrome who don’t have a voice; specifically orphans.

Of all the paths in life, this is not the story I imagined. Before Charlie I’m ashamed to say I didn’t know the first thing about people with handicaps, nor had I put much thought into the true value of each and every life. But here I am; the subject of orphans, international adoptions, special needs and acceptance weigh heavy on my heart and mind. These topics spark a fire in my heart. Whether it’s our own child with Down syndrome, or one that lives across the world it doesn’t matter; their life has value. We can’t reason or rationalize them out of existence. Call it what you will, a choice, a quality of life issue, a burden too great…created in His image. Fearfully and wonderfully made. I’ve made a promise to lend my voice, to share their stories.

Sometimes I wonder why it took having Charlie to make me realize this whole world of disability even existed. Yet the moment he was placed in my arms I knew that I would do anything for him. I’ve often joked that God didn’t really need to go to such extremes to get his “lost sheep” back, but part of me thinks he did. He will go to great lengths to keep his flock together.

Occasionally I fear my words fail to explain the journey that we have been on. How do you explain to the world what a blessing your child is? The joy he has brought to this life? Quite possibly it isn’t important. Or necessary. But I do know that together, as a family, we head confidently into the days ahead.

Wednesday, July 20, 2011

UPDATE ON TERI LYNN

So many of you are already blogging and praying and giving for this precious little girl..



My sweet friend Adeye has been leading the charge for Teri Lynn. One of her readers pledged $2500 to her grant fund if donations came in for that amount. Teri Lynn's fund is now $10, 896, so with that matching donation, she will have over $13,000.

Just now Adeye posted that ANOTHER reader has pledged $2500 as a matching grant.

This means that if donations come in for that amount, Teri Lynn will have almost $20,000 in her fund- and money will not be the thing that hinders a family from stepping up to adopt her.

I receive emails from people almost every day telling me how much they wish they could adopt a child listed on Reece's Rainbow. So many have the heart to do so, but money is the obstacle. I know there are qualified families to rescue Teri Lynn, who just need that grant fund full to do the job.

You can go HERE to donate to Teri Lynn's fund.

I love Adeye's words posted on her blog today:

One of the things that I absolutely love in this life is seeing the glorious body of Christ in action! I love seeing how God's people can unite and come together to do amazing things. I love seeing how the Father stirs hearts and rallies His people. It's the church in action! 

If I hadn't read Adeye's post "The Most Important Post I have Ever Written" last year before Christmas, I wouldn't have had a clue about hosting all the giveaways we've done. I'm indebted to Adeye for her willingness to step up and be an advocate for the least of these, and I'm paying it forward by responding to her call to action.

I love what Adeye's husband, Anthony, wrote on his blog today:


Hang on, sweetheart. Help is on the way.

 Please help Teri Lynn and please don't miss this post from earlier today.

Thank you, friends!

Tuesday, July 19, 2011

Keep em' coming- our response to GQ

Jack and Lily's Giveaway Wednesday will continue next week as usual. My daughter (our blog photographer) gets home today from vacation and will resume her duties immediately:)

In the mean time, please don't miss THIS POST.


And don't forget, I still need photos of all of your loved ones who sport something extra, right alongside you sporting "something extra". I've received some awesome photos, but keep 'em coming!! See HERE for details. Here's a sneak peek...


"You can make fun of me and my ability to overdo it with the jewelry and "ruin" it, but don't you dare make fun of my beautiful daughter!" ~Annie from The House That Jade Built

I am having SO much fun putting this slideshow together!!!

Happy Wednesday!!

heartache

Dear Friends,

I know many of those in the Down syndrome community are already aware of the two stories I'm about to share. But I also know that many of Lily's readers outside of our smaller Ds blogging world may not have had a chance to read about these children, so please bear with me if you have.

The first story is about a beautiful little girl named Terri Lynn. She is an orphan with Down syndrome, living in Eastern Europe. She waited for years for a family to claim her, but nobody ever did.


Terri Lynn turned five a few months ago, which meant she was given a ticket out of her orphanage...unfortunately "out" meant a transfer to a mental institution. This beautiful, rosy cheeked little angel with the sweet collared dress and darling little pony tail was transferred to an asylum where children are left in cribs day after day in their own urine and feces and wither away for lack of human contact and food. I've scoured resources to find an accurate statistic for children with Down syndrome who survive the first year in an asylum. Some sites are generous- they give a 20% chance of survival. Others state that 95% of children with Down syndrome will die during that first year...either way the numbers are horrifying.

What we do know is that those institutions are no place for children.

They are no place for a beautiful little girl who did nothing wrong in life; yet her fate was sealed when she arrived in life with a little something extra.

What we do know is that Terri Lynn is not the same little girl she was when the above photo was taken.

Here is sweet Terri Lynn just a few weeks after her transfer.


My heart is aching. What went through Terri Lynn's mind as she was left at a place she never knew, left behind the only "family" she had known, and as her sweet little head was shaved, and they left her in a crib to languish? What has happened to her rosy cheeked little face, now mottled and bruised? What does a five year old little girl with Down syndrome do to comfort herself when no one is there to rock her or hold her or tell her it will be okay?

My friend Adeye blogged about Terri Lynn and asked readers to help raise money on her grant fund on Reece's Rainbow. Miraculously, that grant is now at $7,495. One of Adeye's readers agreed to match new donations up to $2,500. So if that much comes in, Terri Lynn wil have a grant of over $12,000. That grant fund will be an amazing blessing to any family who would step in to rescue Terri Lynn.

If you would like to contribute, please go HERE.

The other story involves a family already in the country of the little boy they are adopting.


The Warners are already legally Joshua's parents, but there are some major events that are stalling bringing him home. Little Joshua has some serious medical issues that need to be resolved before they can return home- they have already been there for over four weeks, and now death in their immediate family is adding to the mountain of stress and heartache they are already experiencing. Please go HERE to see how you can help and pray for the Warners.

And finally, I hope you didn't miss the blog post from yesterday about an article that appeared in GQ magazine. If you missed it, please read that post- the words in the article that caused so much shock and hurt have since been removed:

"due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything"

We don't shut our children away in institutions here, but as long as this kind of prejudice and discrimination is allowed to be printed without an uproar from our community, our children will still remain victims of societal ignorance. We don't have to sink to the level of the writer of this article, by answering his hurtful and insensitive words tit-for-tat. I'm putting together a montage of photos of family members and their loved ones with Ds, like the one Dr.Skotko posted in this article. To borrow the words of a friend (thank you, T****) "If we can take and own the term Down syndrome style, we can call attention to this in a fun and engaging way that focuses on positivity." 

Please send all photos to my email, and thank you ahead of time for all who will take the time to do so, as well as reading and sharing the stories above.

Monday, July 18, 2011

STYLE DOWN SYNDROME: ALL CALL !

Dear friends,

I already posted today, and I hope you don't miss it...but I just received an email about an amazing article at Thriving, Children's Hospital Boston's pediatric health blog. I asked for permission to re-post it here, and I hope you will go and leave a comment on Thriving's blog as well.

Some of you might remember a previous article at Thriving that inspired this photo montage. I am feeling inspired again :)

Please read this article, and see my request below.


*******************************************
Mock my pants, not my sister

by Childrens Hospital Boston staff on July 18, 2011

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.


Brian Skotko and his sister, Kristin

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.

My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

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So if you are a parent or a sibling of an individual with Down syndrome, and you would like to submit a photo for my montage,  here's the deal.


Please send me a photo of you sporting a "unique" outfit  (such as Dr. Skotko is wearing) alongside your loved one with Down syndrome. I think we can send fitting a message to GQ and other media outlets who choose to take the low road when addressing Down syndrome in our culture.

treasured places

Dearest Lily,

It's late Sunday night, and you are sleeping on "the green chair", as it is known in our family. It's the coziest chair in the house, an overstuffed and oversized affair with an equally cozy ottoman for tired feet...one of the places you like to nap the best, and your siblings' favorite chair to curl up on with a good book every day.

Once when Mama and Daddy were out of town, we called home to check on everyone. All of your brothers and sisters were doing fine, but Noah was a wreck and hardly consolable. I asked him what I could bring him home to make him feel better... army guys, legos, his favorite candy? No promises of treats or toys could cheer him up. I pressed the ear piece closer to my ear trying to comfort him and distinguish his words through the hiccuping sobs that made their way across the miles. "I just want to snuggle with you on the green chair when you come home!" he choked out. I guaranteed him one hour of uninterrupted snuggle time, and somehow he made it through the rest of that week holding onto that promise.

So there you rest as I type, your brother Jackson curled up beside you on that treasured green chair, while I journal away. It's funny how sentimental all of us are about things like that, and how certain pieces of furniture or places or even pieces of clothing trigger memories. Just walking into a hospital room last week to visit a friend and inhaling that clean, sweet smell of the doppler gel absolutely transported me back in time to all of my labors and deliveries. Sorting through your newborn clothes the other day and putting them away for good brought back a flood of memories as well...I held your soft lavender sleeper, sized just right for a preemie, and instantly I was that new unsure Mama again, wondering what the future held for her little girl. Tucking those onesies and jammies away was like closing a chapter in our lives on this journey called special needs. We've come so far....




The other day I was driving through the parking lot at Safeway, a store I shop at on a regular basis. And yet somehow this time, when I turned the corner to park our van, I had one of those deja-vu moments that felt so eerily as if I were repeating an event I'd already lived through, detail for detail.

And suddenly I was 5 months pregnant again, running to the grocery store a few hours after my level 2 ultrasound. Caleb was in the car with me at the time, and as we looked for a parking spot we saw Mrs. Dort, a mother from your siblings' previous school. Cynthia and I were on a first name basis, but because she had taught so long at the school it was so hard to think of her as anything but "Mrs. Dort".  Her daughter, Kari, attended that small private school with your brothers and sisters for many years...and Kari had Down syndrome. Seeing her mama across the pavement almost felt like a sign at the time...we were still unsure about whether you had Down syndrome or not and had just that day opted out of an amniocenteses.



I remember telling Caleb to go get a grocery cart, because I didn't want him to overhear the questions I had for Mrs. Dort. Tears stung my eyes, and I swallowed a giant lump in my throat as I called out to her. It was a conversation I wanted to have, had to have, and yet I was dreading it all at the same time





Sometimes I'm strange this way, Lily. It's like I think life is a big chess game, and if I don't do something- it will somehow prevent me from experiencing something else. At that moment I felt as if just talking to a parent of a child with Down syndrome was going to somehow seal the deal for me.




I told you I'm strange!

I did the same thing with the Down syndrome pregnancy boards on Babycenter.com.  It was as if going there would somehow make something true, and likewise, avoiding those boards might bring me a baby without that extra chromosome. Completely unfounded and illogical, but there you have it.






So on that bright and sunny September afternoon, as Mrs. Dort and I talked about babies and Down syndrome and Kari and the future...I distinctly remember the feeling of being prepared for something. And despite the inward denial of my soul- because I most assuredly did not want to embrace what that "something" might be- God was nudging me towards His plan for our lives, gently prying back the fingers off my eyes and whispering look here.




I remember Mrs. Dort wisely sharing that God gives you the grace to go through things you never thought you could. She said something that seemed impossible to me, given my hopes and dreams and expectations for a "perfect" baby girl. She said she'd thought about her daughter and all the joy that she'd brought to their family, and how unique and beautiful she was...and she'd asked herself this question: if she could change Kari- take away the Down syndrome- would she do it?



And Lily, to this day I can see Mrs. Dort's lovely face, smiling genuinely and blinking through tears and sunshine as she told me she could never change her daughter.  "She wouldn't be
Kari," she said, her eyes locking with mine and her love for her daughter as contagious as her smile.





So here we are almost two years later, and I'm asking myself: would I change you if I could? I've asked that question a hundred times it seems. Just as hypothetical and perhaps as illogical as my giant imaginary chess game of life, and yet there it is as well.




And although I would never wish a life of struggle or health concerns or cognitive delays on anyone, most especially my baby girl, I can't help but answer that question the same....you wouldn't be Lily.
If I could wave a magic wand and take away that extra chromosome, I honestly wouldn't take the chance. Because who you are and how you have changed us has given me more blessing in life than I deserve, and it won't be til Heaven that I fully understand how all of that works together. In Heaven you will be whole- as I will, and
a
ll of us fallen creatures who trust in Him, who made us in His image.




And maybe I don't have all the answers to who and why and how He made us. But until we get there, I'm going to cherish each moment loving my sweet and perfect Lily, and treasuring the wonderful gift that you are.



Loving you forever,

Mama oxox