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Beauty Exposed: expose the beauty of your story

 My name is Chloe Goulding and I am 14 years old. I am a child of the One True King. I live in the Bay Area.  I have 5 siblings and all of us are homeschooled. The two youngest in our family (Charity age 7, and Neko age 4), both have Down syndrome, and have both been adopted. I am going to give you a little background on Charity, Neko, and my family!

March 21, 2006, my family and I (except dad) were all sitting on the couch have morning devotions. We were praying for a baby girl that we could adopt (it took a little while to convince my  brother, Tucker, we wanted a girl NOT a boy)…when mom got a phone call……………… There was a little baby girl with Down syndrome and she needed a family to adopt her (we will, we will!). A little less than a year later, on February 13th, 2007, our family headed to downtown San Jose and finalized Charity’s adoption.

March 30th, 2009, marked the start of Charity’s 3 month long hospital stay at Lucile Packard Children’s Hospital. While she was there, her heart stopped twice and she had many surgeries (she has the scars to prove it!). Later, we found out Charity has Kidney Disease. During that time, my parents felt God was calling them to adopt another child with Down syndrome, so in November, Mom flew down to pick up the newest member of our family….Neko.

neko_charity

A few years ago I read the book ‘Gifts,’ by Kathryn Lynard Soper and Martha Sears, and I LOVED it!!! Then the idea started formulating in my mind; what if I could get people (young and old) to expose the beauty of having a sibling with Down syndrome and then share it with the world! I finally came up with the name ‘Beauty Exposed,’ since; after all, it really is beautiful to have a sibling with Down syndrome. I wanted to put together a book that will tell the story of what it is truly like to have a sibling with Down syndrome by sharing honest and uplifting stories. Hopefully this would help others, (especially the parents) to be encouraged and to see the true beauty! I know that sometimes, when parents find out they are having a child with Down syndrome, they wonder how the baby will affect their other child/children they already have. I want Beauty Exposed to help them see that it might not always be easy for their other children, but it truly is beautiful and rewarding!

If you want to help, but don’t have tons of time, it’s pretty easy, and doesn’t take a whole lot of your time! All you have to do is, go to my website, read my guidelines, then go to the contact page and email me your story. I will review it and let you know if it’s going to be in the book=)

Below are some other things to include in your story:

  • Sharing honestly about what it’s like to have a sibling with Down syndrome, even if it is sometimes hard
  • Sharing some of the beauty you see in your sibling
  • Sharing a favorite moment or two or three:)
  • Maybe even sharing what you felt like when you found out your sibling had DS/when you found out you were adopting someone with DS

 

Here is my website: http://www.beautyexposedthebook.com/

~Chloe♥

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This is an unbelievable post on some levels – it is incredible that such a small, underfunded organization does so much. It’s incredible that most of us don’t know about it. It’s incredible that the national organizations supporting Down syndrome do not support the mighty work that these women do. It’s incredible that this is going on HERE AT HOME.

Please. Read this post by Melissa, please consider supporting the NDSAN.

Thank you.

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In 1975, Robin and David Steele visited a group home for children with disabilities and met 3 year old Martha Ann. At the time, they knew little about the adoption process, and even less about Down syndrome, but they knew Martha would one day be part of their family. Over time, the couple eventually adopted 10 children, four of whom have Down syndrome.

The Steeles went on to be a founding family of the Down Syndrome Association of Greater Cincinnati in 1981. They remained committed to adoption outreach, and DSAGC supported the Steeles’ decision to develop a local program. Over time, the National Down Syndrome Adoption Network formed from that local program, and it has been in existence for over 30 years. In that time, they have helped nearly 1000 children find homes.

The service they provide is essential as we move into an era of increased prenatal diagnoses. They are contacted by birth families or adoption agencies about a potential match. NDSAN works with the birth family to find a family on NDSAN’s registry (200 families and growing!) that best fits what the birth family hopes for the their child. NDSAN is not an adoption service – they facilitate the match, and the legal process is handled by the birth family’s adoption service. NDSAN provides this service free of charge.

It is the only national group providing this service to families in the United States. It is run by just two dedicated women and is funded entirely by one local group – DSAGC.

As we enjoy a month of spreading awareness of Down syndrome, sharing stories about how Down syndrome has touched our lives, and enjoying Buddy Walks and other community events across the country, let’s take time to support an organization that provides an essential service to our national Down syndrome community.

Think of all the time and effort that goes into your local community’s big fundraisers. Lots of work – and a lot of fun, too! – to raise money for educational, social, and advocacy opportunities for your local community. Imagine if your one group was responsible for keeping itself afloat while at the same time raising money for a national organization that receives no national financial support for providing a crucial national service.

DSAGC has steadfastly supported and funded NDSAN since the beginning. Let’s step up as a national community and give our thanks to NDSAN (and DSAGC!) for their commitment to children with Down syndrome.

How can you help?

  • “Like” NDSAN’s Facebook page and share posts about children with Down syndrome who need a home.
  • Contact NDSAN and request informational materials to bring to your OBs, Maternal Fetal Medicine Specialists, Geneticists and Genetics Counselors, and any other health professionals who work with families with a prenatal diagnosis. NDSAN will send them to you free of charge.
  • If you are considering domestic adoption, add yourself to NDSAN’s registry. There is particular need for families in the following states:
  • Alaska
  • Louisiana
  • Montana
  • Nevada
  • North Dakota
  • Rhode Island
  • South Dakota
  • Vermont
  • Make a financial contribution to NDSAN. Donations can be made here.

With our support, NDSAN can reach even more families considering adoption for their babies. With our support, NDSAN can distribute their literature to more OB offices, Maternal Fetal Medicine practices, and to other health professionals who work with families receiving a prenatal diagnosis. They strive to be part of the post-diagnosis conversation so families can understand all the options available to them.

Please support NDSAN today! Visit their website here.

ndsan-logo

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melissaMelissa Stoltz is a mother, writer, and legislative advocate. When she isn’t busy writing strongly worded letters, she can be found knitting tiny fingerless mitts and watching too much Star Trek. Melissa writes about Down syndrome, disability, and advocacy at The Garden of My Heart

Is anyone even reading this blog anymore? I wonder. I'm scared to ask and definitely too scared to check my numbers.

At least I know my Mom and my Mother in Law are reading… um, right, Ma?

***

 

 

Here's Mac, as of today

He's covered in pimples, the remnants of my hormones all coming out of him. For some reason, I find it incredibly endearing.

Not so his behaviour at night.

Little Tyrant with the Bottomless Stomach.

Seriously, this kid never*stops*eating.

And if there is one thing this is teaching me, it's that having a child with Down syndrome spoils you. Or at any rate, my child with Down syndrome spoiled me completely rotten!

She slept!

She grew slowly so she didn't eat all that much!

She wasn't fussy!

She made me think I could do it all again. And I gotta tell you… there's been times recently that I just wonder. Enter post partum depression, that cheerful beast.

I last left you where I picked up my prescription for an anti-depressant, right? Despite being kind of freaked out that I was on a quick slide to the gates of a drug-addled HELL, I took it. And Jesus, Could. Not. Wake. Up.

Even when I was awake, I wasn't.

I had to get off of it just to take a shower and change my clothes. I'm trying some other stuff now – more along the lines of some natural action (think, yoga, acupuncture), and my blessed saint of a mother (do you hear that, Ma? YOU ARE BLESSED! YOU ARE A SAINT!! THANK YOU!!) is coming every day and taking our two other munchkins out so that I can sleep some.

Praise God. This story just might have a happy ending after all.

****

Are you still with me? Awesome. I want to tell you briefly about a story I've just heard. It's here in this blog, Adopting Nugget and Lovebug. Carrie, a disability rights activist with Larsen's syndrome, is in the process of adopting two kids right this very minute – one, her soon-to-be-legal-daughter, who has her same syndrome and her soon-to-be-legal-son, who has Cerebral Palsy.

We're trying to get a BOB Duallie stroller for her kids – the BOB Revolution company sent me over to Safe Kids and it's in process now. If you are the praying type, say a prayer that Safe Kids will donate this, would you? Thanks. If you yourself would like to just gift them with the stroller, here is the link to the stroller – just shoot me an email so I can help connect everyone safely.

Either way, I'll be letting you know how this unfolds. I'm terribly excited for this family. Oh my. Those lucky kids and those lucky parents!

Lucky, like me.

****

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