31 for 21: Buddy Walk 2010

Yesterday was the 8th Annual Down Syndrome Association of Tulsa Buddy Walk. It's always a great event! And it was no exception yesterday :). We arrived around noon, since we had a lot to set up - the petting zoo & Reece's Rainbow table. The event started about 1:30 and the actual walk was around 3pm.

The animals were a big hit...we had 5 goats, 1 sheep, 5 rabbits and of course my sister's Bullmastiff, Canuck. It worked out really well and went very smooth for this being the first time we had done any kind of petting zoo.

Some of the sponsors of our walk are McDonald's, Borden's, Panera Bread & Merritt's. They all provide food for free for the event, which helps make it a great turn out. DSAT always does a great job with getting a lot of fun, free events & food!

Two of the bunnies :)

The petting zoo area lookin' pretty "professional" for a first time!

Canuck getting some attention.

Old friends meeting again...this police dog was there last year, so it was fun to see him & his owner again.

One of the little goats on a leash getting some attention.

Osiyyah walking "Cutie."

The Reece's Rainbow table also went really well. We passed out tons of brochures and magnets. All the bags were given away too and we only came home with one mug and one pen (oh and a few brochures & magnets)!

One note though....If you're running an RR table at an event, the best way to get the magnets & brochures given out is to walk the crowds and hand them out. We walked the crowds several times and handed out tons that way. We also stood on the side of the track and handed out the brochures as the walk was going on. And if you have any Buddy Walk Volunteers around, give some to them to hand out. We did that and they gave out quite a few for us!

And, we also got to see several RR kiddos at the walk! Justine Foster & her kids, including Timothy (adopted from Hong Kong earlier this year) were there. The Urban family was also there. They adopted Ava from the Ukraine 2 years ago and just brought home 2 more kiddos from the Ukraine this summer....Joseph & Zoya (she doesn't have DS, she has a cleft palate). It was nice to see them all in person (again for Ava, as we met in person earlier this year ;)) and they are all so cute!

Me at the RR table :). My sisters did help, they just weren't in this picture.

And we can't leave out the 3 RR kiddos....from L to R, Ava Urban, Tim Foster & Joseph Urban. Aren't they all so cute! This picture is from Charissa, as somehow I managed not to have my camera on me when the kids were lined up. Lil Zoya isn't in the picture, but she was busy collecting all the suckers she could find from the hay stack :)!

 
We had to have a carnival game at our table to help draw people to it (one of the "rules" of our buddy walk). We had a "Hay Stack Find" and it was definitely a huge hit! Just about all 250+ candies hidden in it were found :).

And I guess I should also include a few pictures of the actual walk :).

O's Ranch Hands towering over the walk, LOL!

And we even got a bit of dancing in (a few times)....this picture is from Charissa also :).

31 for 21: She Died An Orphan.

Anne-Marie

November 25, 2005 - October 2010

This little girl just recently passed away.

She died an orphan, just because she had something different in her genetic makeup.

She lived most of her life in a crib with hardly any stimulation.

On the days she was brought outside, she was kept in a stroller or crib.

She had a heart murmur that would've needed correction sooner than later.

Because of that, the nurses & doctors thought she was even worth "less." That she shouldn't have been adopted.

A family never came for her, although many people advocated and raised money for her adoption grant.

And so, at the young age of barely 5 years old, she died. Died abandoned. Just because she was "imperfect."

I can't even begin to imagine someone giving their child up to an orphanage because they are "different."

This little girl was just a few months younger than Osiyyah. That really puts things into perspective.

I know how much Osiyyah can do. I know how much he understands. I know how normal of a life he lives. I know how healthy he is, all by God's kindness. I know how he can interact with people in daily life. I know how active he is. I know how motivated he is. I know how much he has thrived.

All because God was extremely merciful to him & us and he was born into a family that loved him just as much as any other child, even though he has a little something extra.

To see a 5 year old child kept in a crib most of her life? Unimaginable. Unthinkable that someone could do that.

And that's the way this poor little girl died. She died as a 5 year old orphan who spent most of her day in a crib.

Sad. Sad. Sad. I have to hold back the tears as type this post up.

This gives me comfort though: "The Lord executes righteousness and justice for all who are oppressed." (Psalm 103:6)

31 for 21: The Lost Boys...A Mental Institute

The Nalles family recently completed the adoption of Aaron, a little boy with arthrogrypsis, who lived in a mental instutition in the Ukraine. Most of the time, once a child is transferred to a mental institute (aka internat), there is little hope of adoption, little hope of finding a family.

Aaron was the first child to be adopted out of this internat. Because of that, his family had may obstacles to face and a very hesitant judge (which you can read about on their blog). But, hopefully, because of what the Nalles went through, more children will be available for adoption from this internat.

Out of the many boys who are where Aaron used to live, only 2 others are available for adoption. The rest of the boys will live out their lives in the sad grounds of a mental institution, before they age out of that place (at 18) and are transferred to an even worse place - an adult mental institute. Simply because they were born "imperfect", were rejected by their society and left by their families.

The Nalles wrote about what they saw at the internat in one of their blog posts. I'll quote it here:

Every morning while we visit Aaron, we see the Lost Boys moving around the internat grounds in their groups on their way to and from snack time. A few are in wheelchairs, the older boys pushing the younger ones. The rest all hold hands in pairs so that no one gets lost. The caretakers always keep gentle hold on three or four. Together, they make a strange and awkward procession. At first it was a bit frightening because there are so many of them, and most of them make some strange noise or awkward movement. Now we’re used to them, and we look for the ones we recognize every day: The one who smiles with uncontainable glee every time we look at him. The one who dances with reckless joy whenever the radio plays. The serious one who sometimes says “Mama.” The legless older boy in the wheelchair who never makes a sound, but always grins when we wave. The troublemaker who tore the bed off of Aaron’s dump truck on our first trip. Each of them has his own likes and dislikes, his own personality. Most of them will never know any other life than the one they have now.

It is a harsh life. Some of the older boys have jobs setting tables, carrying laundry or emptying trash bins. These make the most of their bit of freedom. The rest have little to do but sit on benches or on the ground, rocking back and forth hour after hour, day after day. Some wander around within their group’s play area. Those who are able sometimes kick a ball or push a wheelchair around. They have no other toys, nor do they receive any teaching, therapy or stimulation. It is a great honor for us to be allowed to bring Aaron out of such a place.

We have counted over 60 boys marching by for their snacks. Inside the buildings in the back are even more boys, the bedridden ones who seldom see the light of day. We have had only glimpses of one or two of these, but what we have seen we will never forget-- a child with a deathly white face, so stiff that his waist never bent as two nurses carried him to an ambulance, one at his shoulders, the other at his feet.

The internat staff makes the best of its limited resources. For the outdoor boys, there are usually one or two caretakers in charge of 20-25 mentally disabled boys ages 5 to 18. They care for the boys, but they can do little more than keep the peace in such large groups of needy kids. They are overworked and overwhelmed just maintaining cleanliness and order. We admire them for the care they show for the Lost Boys.

The Lost Boys arrive at this internat when they are five years old, transferred from the baby houses where they have lived since their parents gave them up. Frightened and friendless, they are torn from the only world they have ever known. They have failed the tests that would have entitled them to receive an education. Their mental or physical disabilities mean that they are unqualified to live outside the internat. With no stimulation, there is little chance that they will improve. Unless they die first, they will remain at the internat until they turn 18. Then they will be transferred for the last time, to an adult mental institute where they will live out the rest of their lives. This is their sad reality. Aaron is the first child ever to leave this internat. When he walks out of its gates, he will break its sad cycle for the first time.

Part of our hearts will break when we, too, leave the Lost Boys behind. Only two or three of them have any hope for a family as things now stand. They are available for adoption, but time is running out for them, and unless someone claims them soon they’ll be as lost as the older boys already are. How they would blossom if they got the chance! As unreachable as most of the Lost Boys seem, there isn’t one of them who wouldn’t improve with some stimulation. But these younger ones need someone right now, before they’re lost in the system forever.

And, so, as I've said before, the only way we can continue to go on with knowing the horrible stuff that goes on in the world, is that one day God will come back and bring justice to this earth.

31 for 21: Buddy Walk Prep

The DSAT Buddy walk is fast approaching and we still have a bit to do to get ready for it, especially since we're providing the petting zoo and running a table this year. But, we're all looking forward to it!

So, this week, I've slowly been working on some of the things the RR table will have at it. I've got one of the posters done and still have to do another one (that's half way done at the moment)...

The one poster is about Reece's Rainbow Homecomings. There are so many children that have come home through RR and one amazing transformations, but I decided to choose the Salem's little girl, Hailee and the Urban's little girl, Ava.

And, I also got the flag for our team - O's Ranch Hands - done. It turned out pretty cool!

I printed out each letter in a cool font, traced it onto the fabric, cut it out and then used Liquid Stitch to put the fabric on the flag. It was kind of a pain to use Liquid Stitch, so if we have to do something like this again, I think we'll try to get Wonder Under (iron on fabric applique). Liquid Stitch is all that Michael's craft store had and so it worked.

And we put the patch from last year's walk on it. Hopefully we can add another to it from this year as well!

We'll be sure to take lots of pictures at the walk . . . less than 2 weeks now!

31 for 21: Reece's Rainbow's Yulia

Reece's Rainbow provides awareness about the plight of orphans with special needs in so many countries. Over the last few years since RR has been in existence, 130 children have come home to their forever families. And there are MANY more children whose families are in the process of bringing them home.

Yet, it remains a shame that the governments have set up so many obstacles and requirements for families who would like to adopt. There are countless orphans in orphanages and institutions in the world, but the governments are more concerned about seeing if the family is "qualified to parent" these children, than just bringing them home.

Now, don't get me wrong, I completely understand why these requirements are there. Because there are jerks who would not be bringing home these children for the best interest of the child. But, it is sad, that because of those kinds of people, there have to be all these rules, which make it so much harder for those who actually are adopting for the love of the child and in the best interest of the child.

So, because of these rules and requirements, international adoption in particular is crazily expensive. Many families who are adopting have to do a lot of fundraising to be able to pay the expenses.

Over the years of watching various blogs in the RR adoption world and group, I've seen several amazing fundraisers.

Last November, an 11 year old girl named Lydia, asked her mom if she could raise $20K by Thanksgiving (8 days), if they would bring home a little girl from the Ukraine named Darya. Her mom said yes. And so, by Thanksgiving, Lydia had raised $28,500. She did a lot in those 8 days to raise the money and she did it! It was simply amazing.

Lydia's family ended up not being able to bring Darya home for various reasons, but because Lydia was able to raise $28K, Darya's family is currently in her country completing the adoption process.

This past week another family decided to raise awareness about a little 2 year old girl, Yulia, in Eastern Europe.

Yulia has a very rare syndrome called Cockayne Syndrome, which causes premature aging, impaired development and so on. Typically these children die at a young age. Yulia is in an orphanage where she is left in a crib most of the time, rarely taken out to see the light of day. And so, this family, decided to advocate for Yulia to get a sizeable grant available for her adoption. They gave away an Apple iPad and within 5 days had raised $20,000 for Yulia's adoption grant.

Now, all Yulia is waiting for, is a family, as her adoption is almost fully funded.

Reece's Rainbow Canada

Reece's Rainbow has now opened up a program for families in Canada to adopt "through" them. The director for RRC is Shannon Stepanek, instead of Andrea Roberts who is the director for RR. Hopefully this will help a lot more orphans find families!

Click here to go to the RRC website.

So Sad.

This little girl had Cerebral Palsy in Eastern Europe.

Because of that, she was left in an orphanage . .  .
...To be hidden away from the world and from a family
...To be taken care of just enough to live, but with minimal care, love & nutrition
...To spend her days in a crib

When she outgrew her time at the orphanage, she was transferred to a horrible mental institution in Eastern Europe.

Simply because she had Cerebral Palsy. 

According to the mindset of many people in EE, she wasn't fit to be a part of society. Her life was destined to be hidden away. Tucked away in a crib in a dark orphanage and then quietly transferred to a place where many children die very shortly after coming.

And that's what happened to this little girl.

Just a few months after arriving at this horrible mental institution, she passed away. So sad.

Her days were spent hidden away from the eyes of the world, so that no one would have to deal with this child who may be a "burden to society."

But, there was One who knew all her days from the time she was born and that is God. I praise God that He will come soon and bring true justice to all.

Adoption Homecoming Video: This is Home

John & Charissa Urban (you can view their blog here) live just a few hours from us here in Oklahoma. A couple years ago they adopted Ava (who has Down syndrome) from the Ukraine. She was 4 years old and the size of an infant. She has since made tremendous progress.

This summer, the Urbans went back to the Ukraine to adopt Joseph, another little boy with Down syndrome and also Zoya, a little girl with other special needs.

Charissa put together a slideshow of Joseph's & Zoya's adoption. I thought it was very sweet and figured you all would enjoy it too.

Why I Blog . . .

Alysha from Blessed With More Than Deserved left a comment on one of the blog posts here. I thought I'd share it and expound on it more.

I just had to stop by and leave you a REALLY BIG Thanks :D Your blog & all the time you've invested in helping other families has been such a huge blessing & educating tool in my life. Thank you for all your time & for the willingness to share all your findings. Your blog award is 100% earned (I think you should have been #1, but 2 ain't bad :) Keep up the great job Q...we moms need you & God for sure knew what He was doing by placing O so perfectly where he belongs in your family. God bless, Alysha

Alysha has two little boys with Down syndrome. One biological, Eli and one adopted from the Ukraine, Issac. Shortly after bringing Issac home last year, Alysha emailed me asking for more information about Longvida Curcumin and waiting for me to post an update on this blog about it. This was a bit over a year ago and I wasn't keeping the blog very updated. So, her email spurred me on to regularly blog, because I realized I actually had people reading the blog looking for information. And, so I've been a pretty regular blogger for over the last year and I'm so glad I've been able to help families.

Everything from one of my biggest passions in the Down syndrome world - research on nutrition to help people with DS - to another one of my favorite subjects - speech & oral motor therapy - and anything random in between. It's been great to be able to blog regularly and have people benefit from it.

That's why we wrote our book. To help other families who have children with Down syndrome. I know we would've benefited greatly from a blog like this or a book like ours (in fact we found a book similar - Circle of Friends II, but it was out of print) when Osiyyah was first born. But, he was 8+ months old before we found the Circle of Friends II book or anything along these lines. I get emails fairly regularly from new families thanking me for the book and saying it's been such a huge help.

When my brother was born, I purposed to do everything I could for him. Out of love for my wonderful little brother, and knowing how the knowledge and information I've learned over the last 5+ years has helped HIM tremendously, I share, because I know it will (and has) helped others.

Connecting the Rainbow Heading to Ukraine

I've posted about Connecting the Rainbow a few times before. CTR is an off-shoot of Reece's Rainbow that is designed to educate families and professionals in Eastern European countries. Education is so important in EE countries, because families are not told the truth about raising a child with Down syndrome. They are told to put them into an institution or an orphanage. There are only a few families in these countries that actually keep their children with Down syndrome.

Actually, there was one family a few months ago, who, by the encouragement of RR, brought their child home out of the orphanage to live with them.

As I've posted about before, CTR has made a couple trips to Bulgaria to deliver resources and therapy items to families there. They will be going back to Bulgaria in March 2011 for World Down Syndrome Day for a 2-day conference.

Our book has made it to Bulgaria with CTR and to the families there. It also recently went with a family who was adopting from an orphanage in Ukraine to give to the director of the orphanage . . . he actually requested books on Down syndrome.

CTR has been working on ways to give more information, resources and therapy items to families in the Ukraine and Serbia. And just to educate the public there. Well, they have been given an amazing opportunity to attend the DownsEd International Down syndrome conference in Kiev, Ukraine!

Here's a bit of info that Shelley recently posted about the upcoming trip to Kiev:

In the midst of the beginning preparations for the CTR trip to Bulgaria next March, we were given an exciting opportunity to make face-to-face contact and really "open" our program in Ukraine!

Though the timing was a big unexpected (and fast!), the opportunity was too great to pass up.  I, along with Reece's Rainbow's Ukraine coordinator, Meredith Cornish, will be attending the Down Syndrome conference in Kiev, Ukraine!!! We will have the opportunity to meet with birth families in Kiev, speak with leaders of the Down syndrome group to assess how we can best support the families and visit the new Down Syndrome Early Development Center. We are extremely blessed to have this opportunity for face-to-face meetings with the parents that are right now "in the trenches" in Ukraine, working to change the minds and hearts of their society about the value and potential of people with Down syndrome. Just like in Bulgaria, we know that meeting these families "where they are" is THE most effective way to truly understand their needs and to plan for the most effective way to partner with them and support them and their children.

In addition to the exciting things happening in Kiev, we've been given a 2nd opportunity to impact another area of Ukraine. Connecting The Rainbow will be partnering with another organization to assist in supporting a special needs center in the Donetsk region of Ukraine. The center is in the city of Artemovsk and will serve ALL children with special needs and their families in the community and surrounding areas. It will be a place for families to come for support, information, resources, etc. It will be a place for the children to receive therapy, to play with developmentally appropriate toys and to interact with other children. We are very excited about the opportunity to assist with this project as it will serve so many children with a variety of special needs. There are already over 190 families signed up to receive support from this facility!

So, there are a lot of exciting things happening in Ukraine! Connecting The Rainbow has been given incredible opportunities to partner with families in Ukraine and to assist them in providing for the needs of their children. We're currently in the process of compiling a list of items that will be needed for the special needs center in Artemovsk and also items that the families in Kiev want/need as well. We're looking forward to the opportunity to be able to visit both facilities, gather a lot of information and take lots of pictures to share with all of you!

Reece's Rainbow at Buddy Walks

October is just around the corner and that is Down Syndrome Awareness Month. Many Down Syndrome Associations (DSA) have buddy walks now, in October and shortly after October.

Reece's Rainbow is doing something new this year. They are giving "kits" to set up a table about RR or just brochures to DSA's around the country.

You can see if your local buddy walk/DSA is doing it yet or not at the RR website.

Ukraine Orphans

Remember this little girl I posted a picture of a few weeks back?

She's been home just a few short weeks and the change in her is already very obvious.

But, there are still millions of orphans around the world who do not have a family and many who will never know the love of a family.

The special needs orphans pull a particular string, because they are so much more helpless. Their parents abandon them at birth simply because of their genetics, a deformity or a disability They abandon them over something the child had no choice in. Did that child choose to be born with a third 21st chromosome? No, God is the one who made him that way. Yet, because they aren't "perfect", many of these children are rejected or looked down upon by the society they are born into.

And so, they live their lives inside of a crib.

And then at 4 years old are transferred to an even worse place, a mental institution. To either live the rest of their life out locked up, tied to a crib or die very shortly after being sent there. Like these two little girls I wrote about in a blog post a year ago February.

Living your life inside of a crib, starved of love and adequate care & nutrition results in this:

This little boy is Wade. He has Down syndrome, is 3 years old and weighs about 10 lbs. Unbelievable, sickening and sad. He is in the same orphanage that the little girl at the top of this post, Hailee, was just rescued from. In the same room, where the "most needy" children are. Left in their cribs alone. When I saw his picture on this blog post, I couldn't help but cry. This little boy is adorable and he would be a baby I'd adopt right this moment, if adoption wasn't so difficult.

I wish there weren't so many stringent requirements in adoption, because then so many more people could adopt. (Yes, I understand why the requirements are there, but I still think it's a bit over board.)

If little Wade was born into a family who loved him, he would not be 10 lbs at 3 years old. I've seen it with my own eyes. My little brother has Down syndrome and we've loved him and treated him like any other child in our family and he has thrived beyond anything we were ever told! Just simple love goes so far.

Little Wade could do so well in a family and I can only hope that God will open the doors for us to be able to adopt a little guy like him someday.

Broken Record

Sometimes I feel like I may sound like a broken record, especially when it comes to the plight of the orphans around the world. But, it is something that is very important to me and I will keep talking about.

When my grandparents were here, my grandma was sharing some stories from her childhood. She had a brother who had mental retardation due to something that happened at birth. Back when he was born in the 1930's, America had mental institutions. And it was looked down upon to raise a child like him. Just like it is still in other countries around the world. My grandma's family had a bad stigma around them because her parents raised her brother.

Her mother was encouraged to put him in an institution type of thing when he was an early teen because they would teach him school and he would supposedly do well. Yeah right. She put him in there for a little bit, but hated it. And then ended up bringing him home because he wasn't being taught . . . it was a mental institution.

When my grandmother was telling us this, I couldn't help but think of the orphans who still live the plight of a mental institution and orphanage, even to this day. Yeah, America may not do it anymore and we have come a long ways in that regard, but loads of other countries still do it.

America has just changed what is done with children who have disabilities, namely Trisomies. Instead of putting these children into orphanages or institutions, they are murdered (aborted) 90% of the time a prenatal diagnosis is found.  Because many people still are scared of a child who has a disability. And reject the fact, that God is the one who made them with an extra chromosome. There's nothing that the child could do about it anyway!

Instead of being put into a horrible place to live, where there is hardly any love, where they are starved of proper nutrition and adequate food, and basically die a slow death, they are killed as soon as the diagnosis is found out. Except for the 10% of families who choose to keep their baby after they are given the diagnosis.

So, in these other countries around the world, like many Eastern European countries, you can see the children starved and you can see them dieing a slow death until they are rescued through adoption.

This is the reality of the orphanages in many countries:

How old would you say this little girl is? A year old? Give or take a little.

No, she just turned 5 years old. Yes, you read that right . . . F-I-V-E years old. And she weighs 15 lbs. Her family just adopted her and was able to take her out of the orphanage for good this past week. Just in the nick of time before she would be transferred to a mental institution where she would've very likely died quickly. She will now know the love of a family, instead of her small world of living in a crib.

A Mission of Hope

I thought I'd share the article I wrote for our local DSA's monthly newsletter. I can write an article for their newsletter whenever I want, so if anyone has any other ideas for topics, let me know :).

~~~~~~~~~

A Mission of Hope, Truth & Acceptance

My little brother, Osiyyah came into our lives 5 years ago. The day he & his twin sister were born, our lives have been forever changed because of him and the extra chromosome he sports, but it has all been for the better. It has been a huge blessing that God put him into our life.

When he was born, the information and “help” we were offered was so dark & gloomy. It was all this stuff he “wouldn’t” do or how hard our life would be with him. This was in 2005 and as we quickly found out, there is so much that can be done to help children with Down syndrome achieve their highest potential. You would think that we would have been offered all the powerful, helpful resources that are available here in the United States and the potential children with Down syndrome have. Instead of such a dark, “I’m sorry you have a baby with Down syndrome . . . and these are all the things he won’t be able to do.”

Because of this, my mother and I purposed to write a book about Down syndrome at some point to be able to give to families so that they would have access to all the helpful information a lot sooner than we ever did. And so, in the fall of 2008, our book was finished. And appropriately titled, Down Syndrome: What You CAN Do. We edited the book and had resources from all kinds of doctors, therapists, professionals and families put into the book. The introduction was written by Dr. Lawrence Leichtman. The foreword was written by Karen Gaffney. Many other well known therapists, such as Pat Winders and Sara Rosenfeld-Johnson (Talk Tools) also contributed. The book ended up being 589 pages long and full of resources that we wish we would’ve had access to in those first few months after Osiyyah’s birth.

In the United States, families who have a child born with Down syndrome or those who decide to keep their child with Down syndrome because of a prenatal diagnosis, often times hear a very sad, unhopeful picture from their doctor, social worker or whoever the “professional” might be. I have read the stories of those who didn’t get a sad picture when they were given the diagnosis. But, that is not the majority. This same thing happens in European countries, but it’s far worse.

In European countries, nobody knows the multitude of options that are present in today’s society. And so because the government supposedly “knows better”, the majority of these parents leave their infants to live in a orphanages and mental institutions.  Most children are in an orphanage until 4-5 years old and then transferred to a mental institution, where the death rate is very high.

These babies & children are tied to cribs or strapped down for hours or even days on end. They are starved of love, adequate care & proper nutrition. Not routinely given baths and treated with hardly any compassion. All because of a special need or extra chromosome they might have. How sad & sickening is that?!

As an example, one family who recently adopted their daughter with Cerebral Palsy from the Ukraine wrote on their blog (http://stumbofamilyadoption.blogspot.com),

"So we asked Nina today about her life at the orphanage, not sure if she understands us, not sure if she knows how to communicate with us.

‘Nina?’ I asked, ‘Were you tied down on your crib? Did you have to lie down and they would tie you?’ She looked at me, a sad expression, her little lip came out, and the tears started to come, she said softly, ‘yes.’ And she cried some more. I held her so close to me, wishing I could take that away from her, wishing that somehow she had not had to go through that. Andy asked her why they did that. ‘Nina naughty, Nina naughty.’ She responded.”

Because of this and the need for proper education and information in these countries, a new off-shoot of Reece’s Rainbow Adoption Ministry called Connecting The Rainbow (CTR) was formed. CTR is a volunteer group that gathers therapy tool donations, book resources and any other helpful material to deliver to the few families who have decided to keep & raise their children with Down syndrome in these European countries.

CTR just took their first trip the beginning of April and brought the 250+lbs of donated items to families in Bulgaria.  The small support group in Bulgaria includes 36 children with DS ranging in age from 6 months to 13 years old. These families are going against the grain in their country so much and can use all the help and resources they are given.

We donated a hard copy of one of our books to CTR on Shelley’s first trip to Bulgaria in December. Shelley just completed the adoption of her family’s 3^rd child with Down syndrome from Bulgaria. A 7 year old boy from a mental institution. On Shelley’s last trip to Bulgaria in April that included her bringing her son home and the CTR mission trip, we sent 21 CD’s with copies of our book on it to the families in the support group.

Shelley & Leah (CTR) were also able meet with some officials in Serbia in the hopes that a flow of helpful information can be brought there as well. Hopefully the “trend” of orphanages & mental institutions can be stopped. CTR is also working to try to establish connections in Ukraine & Russia. It is all a work in progress and will take a long time. But every family who decides to raise their child with Down syndrome is one less child in the statistic of 147 million orphans worldwide and one less child who will see the abuse & neglect of an orphanage or institution.

Down Syndrome: What You CAN Do can be purchased from http://stores.lulu.com/gotdownsyndrome. A hard copy of the book is $22.73 plus shipping and an e-Book is $5. The book is priced so low because we want it affordable for anyone to get. We did not write a book to make money, we wrote a book to help families.

To see what you can do with Connecting The Rainbow check out their website at www.connectingtherainbow.com. To find out more about internationally adopting children with Down syndrome you can visit Reece’s Rainbow at www.reecesrainbow.com.

~~~~~~~~~~~~

Connecting the Rainbow & Our Book

As some of you know, my mother & I published a book about Down syndrome a little over a year ago.

The book, Down Syndrome: What You CAN Do is 589 pages long. My mom & I basically edited it and compiled all the info. Lots of doctors, therapists, parents and families wrote information, articles & stories for the book. Which makes it an excellent resource. Karen Gaffney wrote the foreword. Dr. Lawrence G. Leichtman wrote the introduction. Patricia Winders gave us a physical therapy article to include. Talk Tools & Sara Rosenfeld-Johnson gave us permission to use several articles from them. Just to name a few . . . but lots of other doctors and professionals gave us their time, information & articles.

It took us awhile to compile it together, but it has been well worth it. The book is only $22.73 for a hard copy & $5 for an e-Book. Yeah, I know that is really cheap in price. But, we didn't write this book to make a fortune. We wrote this book so that it will help other families and give families hope to realize there is so much that can be done to help children with Down syndrome.

You can see a 15 page preview of the book and it can be ordered from here.

I have a question for ya'll: Would you guys like to see a hardcover version of our book? Obviously it would be more expensive, but I'm sure there are some who prefer hard cover books over soft covers.

We recently sent International Nutrition several hundred flyers about the book and they also ordered a decent amount to start to provide it on their website. Hopefully they'll have good success with it.

A little side note . . . If anyone would like flyers for their local Down syndrome associations, new parent packets or just to have to give out to whomever, let me know and I'd be glad to mail you some. Our local DS association put a flyer in each of their new parent packets.

Now, all that to bring me to this, the main reason for the post . . . Connecting The Rainbow. I've mentioned CTR before, but thought it would be good to mention it again. We sent a hard copy of our book with Shelley on her first trip to Bulgaria to give to the families there who have chosen to keep their children.

Since that trip, Shelley & CTR has been gathering resources & tools to take to the families in Bulgaria when Shelley returns to bring her son home from Eastern Europe. They have received a great response and gotten a lot of good therapy tools, other tools & resources to take to the families in Bulgaria.

Because of that, I have a stack of 21 CD's sitting here by my computer that have a PDF of our book burned onto them. I'll be mailing them out this week, Lord willing, to Shelley and she'll take them with her on her trip to Bulgaria in April.

Qadoshyah

Five Blessed Years

Five years ago today, our life changed forever. Osiyyah & his twin sister, Yophiyyah were born.

My then 14 year old sister & I stayed with our mom in the hospital from the time she was admitted late Wednesday night, Feb. 2nd. As my sister & I stood in the hallway outside of the OR, little did we know how different our life would be from that day forward.

The twins were born naturally with no complications. Osiyyah was "Twin A" and Yophiyyah "Twin B." The babies were born at 2:05 & 2:10pm Thursday afternoon, February 3rd 2005. My sister & I briefly got a peek at the babies as the nurses wheeled them into the NICU. I remember how tiny they were. Just under 6 lbs each.

Shortly thereafter, my dad came out of the OR and went to follow the babies into the NICU. A few moments later he came back with "there is some bad news." Our hearts stopped, not knowing what he was going to say. He proceeded with "it looks like the little boy has Down syndrome." My sister & I were both relieved and I thought "oh, that's not bad."

After the babies were born and we knew this information, we went into the waiting room where the rest of the kids were and some of our friends. Being exhausted from practically no sleep in over 24 hours, my sister & I both started bawling as soon as we told everybody the news that the babies were born. We probably looked like a bunch of geeks in the waiting room that was full of other people! At that point, we were so excited to have two new babies! Praise the Lord!

From that day, our lives have changed for the better. The first few months after the twins were born, there were some challenges. With the two week NICU stay, then having to go to the pediatrician's office every 2 weeks to a month for Osiyyah. Looking back, those office visits could've been avoided had we known more. But, we live & learn.

Praise God he has given us Osiyyah. Life would be so dull & sad without him. He makes us laugh all the time.

The last 5 years have been a learning experience and I'm sure we have lots more to learn. Osiyyah is incredibly blessed to be born into our family & in this country. Into a family who loves him, even though God made him with a little something extra.

Osiyyah is thriving beyond what we ever thought and what we were ever told. I am so thankful God has given us the knowledge & understanding to help Osiyyah be where he is at today. Had we not found out about Nutrivene and the so many other things that we do with Osiyyah, I'm convinced he would not be thriving like he is today. Praise the Lord for his kindness towards Osiyyah.

To put things in perspective, if Osiyyah were born into a family in another country, especially Eastern Europe, it would be very likely that he would be in an orphanage right now. Because he is 5 years old, he would now be on his way to a mental institution. He would not be thriving. His life would consist of laying in a crib, getting hardly any attention. I can't imagine someone doing that to a child, simply because they have Down syndrome. I can hardly think about this without crying. But, this is the reality of so many children with Down syndrome in other countries. It's incredibly sad.

So, today we will sing "Ha day" (Happy birthday), as Osiyyah says, to him & his sister. And, today, as every other day, we are very thankful God has put Osiyyah in our lives.

I love you O & Yo!

Qadoshyah

Reece's Rainbow . . .

Reece's Rainbow is an adoption ministry for children with Down syndrome mainly, but also other special needs. They help to bring awareness and find families for the many orphans throughout the world, especially in Eastern Europe. 250 children have found families since Reece's Rainbow started in 2006. Many children have found their families this year and are in the process of being brought home.

The Bedford family is adopting their 3rd child with Down syndrome from Bulgaria. Their two other boys, Xander & Grifyn, came home from the Ukraine & Serbia in 2007 & 2008. You can see their blog here.

Shelley Bedford has a unique opportunity since she is adopting from Bulgaria. She has been able to get in contact with some parents in Bulgaria who have chose to keep & raise their child with Down syndrome. These families are going against the grain big time in their country by raising their children. Now, this may seem strange to some. But, in Eastern Europe (EE) parents are encouraged to give up their "imperfect" children (children with Down syndrome) and let the government raise them in orphanages & institutions. The orphanages & institutions do not give the child their fullest potential. Lack of resources, staff & love creates an environment where these children, who simply have an extra chromosome, do not thrive.

Some orphanages are very poor and the children have malnutrition and are very small. They also typically don't receive the kind of attention & care they need, which hinders them even more. Simply because these children don't have the love of a family, they do not thrive at all. You may have a 4 year old who is only 16lbs. That's not right. But, when these children are brought home to families they THRIVE. The turn around these children make is amazing.

Then you have the mental insitutions, which often times are much worse than the orphanages. The children will spend their day in cribs. Often times tied to their cribs for hours at a time. Even left in their own waste for a long time. Not all institutions are this way, but a lot are. In some EE countries, children are transferred from orphanges at 5 years old and sent to the institutions. Where they may spend just a few short months to a couple years before their death because of neglect & lack of love. Or, they may be there for many years and not be able to be adopted because that specific instition does not allow adoption once the children are transferred there. Thankfully there are some institutions which allow the children there to be adopted.

The boy Shelley is in the process of adopting from in Bulgaria is in an institution. But, he is not in one of the horrible institutions. He is in a place where there is more love & care given to the children.

Because of this opportunity Shelley has been given, a new branch of Reece's Rainbow has been started: Connecting The Rainbow. Connecting the Rainbow was put together to gather resources, therapy items & literature to give to the families in Eastern Europe who have chosen to keep their children. Becaue most people do not choose to keep their children with Down syndrome, the families who do keep their children do not have very many resources. So, Connecting The Rainbow was put together for people to donate items to and then they will be taken to Bulgaria.

So, check out the site and see if you are able to help Connecting the Rainbow in anyway! Shelley will hopefully be returning to Bulgaria in March or April and she hopes to be able to take a lot of supplies with her for the families there.

Qadoshyah

Adoption Awareness Month

November is Adoption Awareness Month. Adoption is something very near & dear to me. If I was able to adopt, I would. But, as of right now it isn't able to happen.

Why is adoption so important? In many countries around the world, Russia, Ukraine, Bulgaria, Serbia, Republic of Georgia, Ethiopia & so many others, children with Down syndrome (& other special needs) are put away into mental institutions. Left to die. It is a horrific & incredibly sad reality. The video below gives a small glimpse into the way many of these children are treated. Not all institutions are as horrible as the one shown in this video, but nonetheless many of the children transferred to mental institutions die within the first year of being there. From sickness, malnutrition, starvation.



Because of this horrible reality, a group called Reece's Rainbow brings awareness and finds homes for many children in orphanages around the world. In the 3 short years it has been in existence, a couple hundred children have found homes.

Due to this fact, a girl named Lydia started a project (the "Darya Project") a week before Thanksgiving to bring one of the children shown on Reece's Rainbow's website home. She set out on a goal to raise $20,000 in 8 days (by Thanksgiving). If she was able to do this, her family would adopt a little girl, Darya, in an orphanage in Eastern Europe. Through bake sales, car washes, photo shoots, and many other things, Lydia was able to raise $26,000 by Thanksgiving morning! As of Friday, the total was $28,500. The extra money is going to another family who has been wanting to adopt a little one with Down syndrome. So, after 8 days of fundraising, 2 children will be rescued out of the orphanages in Eastern Europe.

Qadoshyah

Silent Auction At "From The Trenches of Adoption"

Valerie & her husband have biological triplets, adopted 2 boys with special needs from 2 different countries within the last couple years. They are now in the process of adopting 3 more children from Bulgaria.

Because the costs of adoption are so high, they are having a silent auction over at their blog From The Trenches of Adoption. There are a lot of nice items available at the silent auction.

As some of you may know, I have a small home business doing graphics & web designing, Country Girl Designs. I donated a Blog Makeover to the Silent Auction.

You can see all the items at this link (just keep scrolling down to see them all). You can see the Blog Makeover at this link.

Feel free to pass on & forward to anyone you know :)!

Qadoshyah