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My son with Down syndrome is everything I never knew I wanted.

CNN PRODUCER NOTE     When Sabrina Moyer was pregnant with her son Colton, the last thing she considered was that her son would have special needs, let alone Down Syndrome. After he was born, Moyer came across a flood of unsympathetic statistics about children with Down Syndrome, but also very little information about the positives of raising a child with the genetic disorder.

Image result for viral photos of down syndrome child

For weeks she was in a state of mourning, she kept asking herself, “why me?” But after weeks of torturing herself over the news, she realized she was asking the wrong questions. “I should have been asking, ‘Why not me?’” she said. So she made a resolution to be her son’s biggest advocate, and started a Facebook group called Special Miracles to share the positive and inspiring testimonies of raising a children with special needs.

Colton, who is turning 2 years old in September, is an irreplaceable part of the family. “My family and I went through a tumultuous time, but we have banded together and overcome the pitfalls that life has brought us. Today, Colton is a happy, healthy child,” she said.

He and his older brother Remi, who is 7 years old, have an especially close relationship. One that she did not expect. “Sometimes I still think of the future and wonder how Remi will handle things when we go, but his devotion to his little brother is so great that I think these are thoughts of my losing control of the situation after I am gone rather than any real fear or worry,” she explained.

She expects great things from both her boys as they grow older. “Colton’s future is just as dazzling, and I have come to the understanding that it is not if he will achieve milestones, it is merely a question of when,” she said.
– Jareen, CNN iReport producer

Colton was born on September 12, 2012.

He was a big baby. But I already knew that.

He had a full head of hair, and after months of heartburn, I knew that too.

He also had Down syndrome and that, I did not know.

Over the course of Colton’s life thus far, I have learned so many things. I have met; I have inspired; I have been inspired; I have cried; I have been mad; and I have cherished, with everything that I possess in me, my son, who has Down syndrome.

When we first started this journey together, there was nothing that could have prepared me for the heartache, the fear, or the suffering that would take hold of me when the doctor first spoke those words. And neither could the speaking of those words ever prepare me for the beauty, the joy, or the overwhelming love that I feel for my child.

The first things I think about when I wake up in the morning are my sons, and the last things that wonder across my thoughts as I am drifting off to sleep at night are my sons. They are the light of the universe to me, though they are as night and day to one another.

It was only after reflection however, that I was able to overcome the pain that Colton’s diagnosis brought to me and to my family. I had to fight to regain control of everything that I thought mattered most importantly in life.

It felt as if I had simply been struck down, flattened by some impossibly large tide that swept me far, far away from the place I thought I belonged to. But I was wrong.

Once I climbed out of that maelstrom, I found myself standing in stranger waters. But there was something different there. The light was just a little bit softer, the sounds a little bit louder. But the imagery, the landscape was constantly changing.

In one moment everything was clarity and sunshine, and in others it was hail and furious storm clouds.

I spent weeks shouting myself hoarse, screaming, pleading, begging with…the air maybe, to come and rescue me. I hid from the colors and I hid from the powerful landscape that was all around me because it was so fierce in comparison with where I had come from.

But eventually I had to stop hiding, I had to come out or I would have sat in the dark forever, never understanding or fully realizing what had just happened to me.

So I stepped out, and I faced the storm.

I clambered out of that dark pit and I brought myself up to face whatever dark and terrible thing was going to ruin my life for good here, in this strange place.

But nothing ever came.

No terrible monster ever shot out of the dark, no big bad beast ever showed its face. There was nothing in the dark places, nothing at all, but me. I was putting myself there, and if I wanted to be free of them, I just had to walk away.

So I did.

I realized that there would be stormy days with my son, as there would be stormy days with his brother. I also had to force myself to realize that there will be just as many sunny days, and I cannot abide by slinking about, saddening myself over an idea that has passed me by.
Particularly when the one that stuck was so much better.

I will raise my son to the best of my ability, with my entire family at my back. Together, we will give Colton everything that he will ever need in life, and in return, we will get his smiling face, his big brown eyes, and his love and affection.

Is this not what every parent expects of their children?

Remi will have the same opportunities, the same love and devotion, the same wonderful memories, and some of them will be exclusively between the two of them.

I could not have asked for a better family, we fit like pieces to a puzzle. There are some days when I look at my sons, either of them, and ask myself how I got along without them in my life. It’s stunning to think that Remi is already in school, and Colton is already nearing two years old!

My heart feels as if it were about to burst sometimes, picturing the road we have taken, and imagining the journey yet to come. I know that one day soon these moments will just be memories, and I will find myself astonished, horrified, breathless and out of words as I realize that my boys are grown up. Then I have to laugh, because this means that one day I will be saddened at the loss of these days.

How ironic that I will soon covet the memories that we made here when not so long ago I was a hopelessly emotional wreck, sobbing my fears and sadness that my youngest was just a little bit different.

With time comes wisdom, I suppose.

I have taken such a winding journey that I wonder if everyone does this, or if I happened to take the scenic route. So many ups and downs and confusing states of mind that I cannot count them all, but as I look back over them, I realize they were all leading to one place.

I was always going to be okay.

When I gave birth to Colton all I could think about, over and over, was how his life was going to turn out. How my life was going to be. Everything seemed so terrible, dark and ugly. I could not wrap my mind around the situation; much less fathom a happy story for us.

I understand now that it was only the shock talking.

Almost two years later I am the happiest I have ever been in my life, and my sons are entirely to thank for that. My husband has stood at my side and we have grown closer and stronger than ever before because of the fear we faced together.

Is this not what we strive for in life?

I am today a much stronger, wiser, educated individual, and I would never have made it this far without the shove that Colton’s birth gave me. I would never have dreamed of creating a platform like Special Miracles, not in a million years.

But now that I have, I am saddened to think that if Colton had been born as anybody else, I would never have done it. I would never have met all of the wonderful people that have become a part of my life, or made some of the friendships that only happened because I was thrown into that circle of people by his diagnosis.

It would be like losing a limb.

How has this never been a part of my plan to begin with?

Life, certainly takes some strange and unexplainable twists, but where you wind up is half the surprise, I suppose. It has been a magnificent journey for me thus far. It doesn’t make a lot of sense. How could something that started out so terrifying become this, which is so delightful that I simply do not have the words to describe it? I don’t have an answer for that, but I do have some words for any other parent who is going to go through it, or is in the process of going through it now.

That feverish, crushing despair will end. You will be happy again. Your child will light up your world, even if it takes time for you to see it.

Some events in life far outstrip the others when it comes to how deeply they affect us, and Down syndrome is high on that list, but it doesn’t bring the world to a stop.

Take it as a new direction, a fork in the road where you have a choice. You can be defeated, or you can defeat it. However you do that is entirely up to you, but there’s a reason that medical advances, medications, and laws pertaining to Down syndrome and other conditions like it are improving. More and more parents are choosing to fight, and along the way they are making strides in overcoming the stigmas and setbacks associated with raising a child with special needs.

The diagnosis does not define your child, they will define what it means to have Down syndrome as they grow.

And when the day comes where you wake up and realize that it just doesn’t matter as much as you thought it would, walk with your head high because you’ve done something many people claim they could never do themselves.

You’ve beaten the most frightening monster of all.

Your own fears.

 source;ireport.cnn.com
ds-mom-letter-007-inline-today-160608_6bb7497a9b57cb1ee4dd0eb4879003c6.today-inline-large

Mom to doctor: ‘You were wrong about Down syndrome’

When Courtney and Matt Baker found out that their unborn daughter had Down syndrome, they were blindsided. The reaction from their doctor left them even more devastated. Now Courtney Baker is responding to that doctor who recommended an abortion with a heartfelt letter about the reality of being a Down syndrome parent.

When they went for a 12-week ultrasound, the doctor told the Bakers that there had been a mistake: though his office had told them that their Down syndrome screening the week before had been negative, the baby girl Courtney was carrying did indeed have Down syndrome. “We were destroyed and completely blindsided,” Courtney Baker told TODAY Parents.

Courtney Baker

Courtney Baker and her daughter, Emersyn.

The Bakers, of Sanford, Florida, said the doctor advised them to see a specialist to discuss their options, but Courtney said there was never a choice. “I told him our only option was to bring our baby girl into this world,” she said. But when she tried to find a different OB-GYN, no one would take her, citing her high-risk status, and when she did go to a maternal-fetal medicine specialist, Baker says, “he suggested we abort due to how low our quality of life would be, and [hers] as well.”

Undaunted, the Bakers decided to go forward with the pregnancy.

Courtney Baker

Emersyn, now 15 months old.

Emersyn (“Emmy”), is now 15 months old, and her mother recently did something she planned to do since before Emmy was born: write a letter to the perinatologist she saw who recommended she have an abortion because of Emmy’s Down syndrome diagnosis.

“I knew the doctor needed to know how wrong he was,” Courtney says. “Once she was born, she just proved it. I think it took so long because we were in such baby bliss. This has been the happiest year of our lives, truly. I feel so at peace and so blessed.”

“My child was perfect,” Baker wrote in her letter. “I’m not angry. I’m not bitter. I’m really just sad. I’m sad the tiny beating hearts you see every day don’t fill you with a perpetual awe. I’m sad the intricate details and the miracle of those sweet little fingers and toes, lungs and eyes and ears don’t always give you pause. I’m sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I’m heartbroken you might have said that to a mommy even today. But I’m mostly sad you’ll never have the privilege of knowing my daughter, Emersyn.”

Courtney Baker

Emersyn and her big sisters, Rhyan and Evynn.

Baker says that what she wants most is “a heart change for our country, for our world,” so that everyone could understand the value and gifts of children with Down syndrome.

“I want doctors to know how valuable and worthy the unborn are, typical and disabled. I want mothers to know that their babies are precious and priceless ad will change their worlds for the better. I want everyone else to soften their hearts and learn that we’re all different, but we all deserve life and we all deserve love,” she said.

source;http://www.today.com

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Down Syndrome Is A Genetic Disorder:5 Strange Realities About Parents

“You know it’s part of her ‘syndrome.’”

There are many characteristics associated with Down syndrome, but that doesn’t mean every individual with Down syndrome has every characteristic. So when you try to tell me my child will be “stubborn” or contract a life-threatening illnesses because “it’s part of her syndrome,” understand that I will internalize a massive face-palm before turning and walking away.

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“You know she’ll never get married!”

Is that really what you think? And if so, you really shouldn’t have verbalized it. Eden may get married, she may not and it would be the same if she didn’t have Down syndrome.

Eden will live a full life. She will go to school, gain employment and, much to her father’s horror, she will have boyfriends. Who knows what will happen after that? What I do know is that society is changing and there are wonderful people all over the world with different abilities getting married. At the end of the day, it’s her choice, not yours.

“What’s wrong with her?”

Sometimes you just have to laugh, and that’s exactly what I did after hearing this statement. This was yelled at me by the shop assistant from across the store, a good 10 meters away so everyone in the store would turn and stare.

It was while Eden still had a nasal gastric tube, and while I believe this comment was aimed at the tube and not at her diagnosis, it wasn’t the politest way to ask. I explained the tube this time and then every time we visited the store for the next 10 months.

“She couldn’t ask for a better family!”

Darn tootin’, its true, Col and I are all kinds of amazing super parents. But while in context this is meant as a compliment, it also comes in other forms of statements, and the most common is, “God only picks special people to parent special children.” The choice is really ours.

“Oh, that’s a shame!” (This also comes out as “I’m sorry…”)

What ever happened to the good old-fashioned celebratory greeting at the birth of a child: “Congratulations!”? So simple, yet eloquent, goes well with pink or blue and trust me when I say after the whole birthing process, it’s all any parent wants to hear (diagnosis or not)!

 “How long will she live for?”

My response to this is always, “I don’t know, how long will you live for?” They stare at me blankly, and there’s an awkward silence while I internalize yet another face-palm.

referance;themighty.com

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The Genocide Of Down Syndrome Infants Continues Unabated

Reportage at the Jerome Lejeune Institute in Paris, France. The Institute treats patients suffering from Down's Syndrome and other intellectual disabilities of genetic origin.

Mikayla Holmgren couldn’t have had a more difficult start. She was born six weeks premature, she was missing an esophagus, and she was diagnosed with Down syndrome. In the 22 years since her birth, however, Mikayla hasn’t simply walked through life, she’s charged through it.

A dancer and a gymnast, Holmgren has shown a desire for the spotlight, according to the Star Tribune:

[She] competes solo and with the dance team at Bethel University, where she’s in her first year of a two-year postsecondary program for students with intellectual disabilities.

Having conquered gymnastics and dance, Mikayla has decided to take on another challenge – the Miss Minnesota USA pageant:

When Holmgren takes the stage later this year, she will be the first woman with Down syndrome to compete in the state pageant, and as far as pageant officials know, the first in the country.

The Star Tribune quotes Holmgren: “I want the whole world to see that I can do things that are hard and that people with Down syndrome are beautiful and talented.”

Mikayla is also blessed with loving parents, who value her humanity above all else:

“From the start, my husband and I decided that she’s a child first and the Down syndrome is secondary,” Sandi Holmgren said. “We never said that she can’t do this because she has Down syndrome; instead we asked, ‘Why not?’ ”

Around the world, a movement is gaining steam; one that not only accepts individuals diagnosed with Down syndrome, but pushes the boundaries of what was once thought unachievable.

Mikayla Holmgren is competing in a statewide pageant; Guatemalan clothing designer, Isabella Springmühl, was the first person with Down syndrome to showcase designs at London Fashion Week; model and designer, Madeline Stuart, launched her personal clothing line at New York Fashion Week last February; Melissa Reilly is a gold medal-winning Special Olympian; Angela Bachiller is a councilwoman in Spain; Tim Harris owns his own restaurant and recently started a nonprofit; Michael Johnson is a folk artist; Christian Royal makes and designs gorgeous pottery.

Those mentioned above are simply some of the more well-known individuals who haven’t allowed their Down syndrome diagnosis to hold them back. There are many others who hold down steady jobs, live on their own, and enjoy life to the fullest. Yes, some are debilitated by their condition and must be taken care of by a parent or guardian – but this doesn’t lessen their intrinsic value as human beings.

Alongside this developing movement celebrating the humanity of those with Down syndrome is a chilling counter-movement which seeks to terminate infants prenatally diagnosed with the condition.

The Charlotte Lozier Institute cites a recent study by Gert de Graaf, Frank Buckley, and Brian Skotko, which concludes:

… it is estimated that abortion following a prenatal diagnosis of [Down syndrome] results in a 30% reduction in overall [Down syndrome] births. Jamie Natoli, et al., proposed another statistic that correlates well with this study. In a 2012 publication in Prenatal Diagnosis, their research calculated a weighted mean across the U.S. of a 67% termination rate following prenatal diagnosis.

Such studies are necessary in order to capture an estimated figure because the United States doesn’t keep track of abortions that result from a prenatal diagnosis of Down syndrome. Other nations do, however. According to the National Down Syndrome Cytogenetic Register (NDSCR), in the U.K., approximately 90% of infants prenatally diagnosed with Down syndrome are terminated. In Iceland, the figure is a staggering 100%.

We (in the United States, the U.K., and elsewhere) are encouraging women to abort human beings because they have a mental disability. Mild to severe – it doesn’t matter. This is known as eugenics, and it’s not simply a choice, it’s an act of evil.

Individuals with Down syndrome, whether they walk down a runway or need daily care, are worthy of life. To suggest otherwise is to look these people in the eye, and tell them their lives are without merit. Try telling that to Mikayla Holmgren. Better yet, think about telling that to someone in your life who has Down syndrome, or loves someone who does.

source;www.dailywire.com

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My son with Down syndrome is everything I never knew I wanted.

My son with Down syndrome is everything I never knew I wanted.

CNN PRODUCER NOTE     When Sabrina Moyer was pregnant with her son Colton, the last thing she considered was that her son would have special needs, let alone Down Syndrome. After he was born, Moyer came across a flood of unsympathetic statistics about children with Down Syndrome, but also very little information about the positives of raising a child with the genetic disorder.

For weeks she was in a state of mourning, she kept asking herself, “why me?” But after weeks of torturing herself over the news, she realized she was asking the wrong questions. “I should have been asking, ‘Why not me?’” she said. So she made a resolution to be her son’s biggest advocate, and started a Facebook group called Special Miracles to share the positive and inspiring testimonies of raising a children with special needs.

Colton, who is turning 2 years old in September, is an irreplaceable part of the family. “My family and I went through a tumultuous time, but we have banded together and overcome the pitfalls that life has brought us. Today, Colton is a happy, healthy child,” she said.

He and his older brother Remi, who is 7 years old, have an especially close relationship. One that she did not expect. “Sometimes I still think of the future and wonder how Remi will handle things when we go, but his devotion to his little brother is so great that I think these are thoughts of my losing control of the situation after I am gone rather than any real fear or worry,” she explained.

She expects great things from both her boys as they grow older. “Colton’s future is just as dazzling, and I have come to the understanding that it is not if he will achieve milestones, it is merely a question of when,” she said.
Jareen, CNN iReport producer

Colton was born on September 12, 2012.

He was a big baby. But I already knew that.

He had a full head of hair, and after months of heartburn, I knew that too.

He also had Down syndrome and that, I did not know.

Over the course of Colton’s life thus far, I have learned so many things. I have met; I have inspired; I have been inspired; I have cried; I have been mad; and I have cherished, with everything that I possess in me, my son, who has Down syndrome.

When we first started this journey together, there was nothing that could have prepared me for the heartache, the fear, or the suffering that would take hold of me when the doctor first spoke those words. And neither could the speaking of those words ever prepare me for the beauty, the joy, or the overwhelming love that I feel for my child.

The first things I think about when I wake up in the morning are my sons, and the last things that wonder across my thoughts as I am drifting off to sleep at night are my sons. They are the light of the universe to me, though they are as night and day to one another.

It was only after reflection however, that I was able to overcome the pain that Colton’s diagnosis brought to me and to my family. I had to fight to regain control of everything that I thought mattered most importantly in life.

It felt as if I had simply been struck down, flattened by some impossibly large tide that swept me far, far away from the place I thought I belonged to. But I was wrong.

Once I climbed out of that maelstrom, I found myself standing in stranger waters. But there was something different there. The light was just a little bit softer, the sounds a little bit louder. But the imagery, the landscape was constantly changing.

In one moment everything was clarity and sunshine, and in others it was hail and furious storm clouds.

I spent weeks shouting myself hoarse, screaming, pleading, begging with…the air maybe, to come and rescue me. I hid from the colors and I hid from the powerful landscape that was all around me because it was so fierce in comparison with where I had come from.

But eventually I had to stop hiding, I had to come out or I would have sat in the dark forever, never understanding or fully realizing what had just happened to me.

So I stepped out, and I faced the storm.

I clambered out of that dark pit and I brought myself up to face whatever dark and terrible thing was going to ruin my life for good here, in this strange place.

But nothing ever came.

No terrible monster ever shot out of the dark, no big bad beast ever showed its face. There was nothing in the dark places, nothing at all, but me. I was putting myself there, and if I wanted to be free of them, I just had to walk away.

So I did.

I realized that there would be stormy days with my son, as there would be stormy days with his brother. I also had to force myself to realize that there will be just as many sunny days, and I cannot abide by slinking about, saddening myself over an idea that has passed me by.
Particularly when the one that stuck was so much better.

I will raise my son to the best of my ability, with my entire family at my back. Together, we will give Colton everything that he will ever need in life, and in return, we will get his smiling face, his big brown eyes, and his love and affection.

Is this not what every parent expects of their children?

Remi will have the same opportunities, the same love and devotion, the same wonderful memories, and some of them will be exclusively between the two of them.

I could not have asked for a better family, we fit like pieces to a puzzle. There are some days when I look at my sons, either of them, and ask myself how I got along without them in my life. It’s stunning to think that Remi is already in school, and Colton is already nearing two years old!

My heart feels as if it were about to burst sometimes, picturing the road we have taken, and imagining the journey yet to come. I know that one day soon these moments will just be memories, and I will find myself astonished, horrified, breathless and out of words as I realize that my boys are grown up. Then I have to laugh, because this means that one day I will be saddened at the loss of these days.

How ironic that I will soon covet the memories that we made here when not so long ago I was a hopelessly emotional wreck, sobbing my fears and sadness that my youngest was just a little bit different.

With time comes wisdom, I suppose.

I have taken such a winding journey that I wonder if everyone does this, or if I happened to take the scenic route. So many ups and downs and confusing states of mind that I cannot count them all, but as I look back over them, I realize they were all leading to one place.

I was always going to be okay.

When I gave birth to Colton all I could think about, over and over, was how his life was going to turn out. How my life was going to be. Everything seemed so terrible, dark and ugly. I could not wrap my mind around the situation; much less fathom a happy story for us.

I understand now that it was only the shock talking.

Almost two years later I am the happiest I have ever been in my life, and my sons are entirely to thank for that. My husband has stood at my side and we have grown closer and stronger than ever before because of the fear we faced together.

Is this not what we strive for in life?

I am today a much stronger, wiser, educated individual, and I would never have made it this far without the shove that Colton’s birth gave me. I would never have dreamed of creating a platform like Special Miracles, not in a million years.

But now that I have, I am saddened to think that if Colton had been born as anybody else, I would never have done it. I would never have met all of the wonderful people that have become a part of my life, or made some of the friendships that only happened because I was thrown into that circle of people by his diagnosis.

It would be like losing a limb.

How has this never been a part of my plan to begin with?

Life, certainly takes some strange and unexplainable twists, but where you wind up is half the surprise, I suppose. It has been a magnificent journey for me thus far. It doesn’t make a lot of sense. How could something that started out so terrifying become this, which is so delightful that I simply do not have the words to describe it? I don’t have an answer for that, but I do have some words for any other parent who is going to go through it, or is in the process of going through it now.

That feverish, crushing despair will end. You will be happy again. Your child will light up your world, even if it takes time for you to see it.

Some events in life far outstrip the others when it comes to how deeply they affect us, and Down syndrome is high on that list, but it doesn’t bring the world to a stop.

Take it as a new direction, a fork in the road where you have a choice. You can be defeated, or you can defeat it. However you do that is entirely up to you, but there’s a reason that medical advances, medications, and laws pertaining to Down syndrome and other conditions like it are improving. More and more parents are choosing to fight, and along the way they are making strides in overcoming the stigmas and setbacks associated with raising a child with special needs.

The diagnosis does not define your child, they will define what it means to have Down syndrome as they grow.

And when the day comes where you wake up and realize that it just doesn’t matter as much as you thought it would, walk with your head high because you’ve done something many people claim they could never do themselves.

You’ve beaten the most frightening monster of all.

Your own fears.

source;ireport.cnn.com

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Student With Down Syndrome Learns He Got Into College

This is the heartwarming moment a student with Down syndrome learned he had been accepted to college.

Heather Griffith, of Alabama, began filming the moment her son Keith, 19, prepared to rip open his acceptance letter on May 4.

‘Open it buddy, let’s see if you got in,’ she was heard, excitedly encouraging her son off camera. ‘Are you excited?’

This is the heartwarming moment a student with Down syndrome learned he had been accepted to college.

Heather Griffith, of Alabama, began filming the moment her son Keith, 19, prepared to rip open his acceptance letter on May 4.

‘Open it buddy, let’s see if you got in,’ she was heard, excitedly encouraging her son off camera. ‘Are you excited?’

'I'm so proud of you,' Heather Griffith said, taking her son into her arms for a big hug

Keith, very slowly and carefully began opening the envelope, tearing off pieces bit by bit until his mom urged him to ‘just rip it open, baby.’

The teen finally opened the letter and a smile spread across his face.

‘I got in’, he said quietly. ‘I made it.’

‘I’m so proud of you,’ Heather Griffith said, taking her son into her arms for a big hug.

‘I love you.’

Keith, who graduated from Satsuma High School in 2016, was accepted onto a program at the University of South Alabama, which helps students with disabilities learn how to live independently and acquire job search skills.

The teen finally opened the letter and a smile spread across his face. 'I got in', he said quietly. 'I made it'

And his family have big hopes for the 19-year-old who was his high school’s prom king, captain of the bowling team, and played football for their little league, Fox reports.

‘I had no idea what to expect when he opened it just hoping get for good news,’ his mum wrote online after posting the video.

‘The only reason I shared it is because I had some friends family that wanted to see his reaction.’

The footage has since gone viral with mor ethna 50,000 views and hundreds of comments from people across the United States praising the moving moment and congratulating Keith.

source;http://www.dailymail.co.uk

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7-Year-Old Girl Explains Down Syndrome: ‘It’s Not Scary, It’s So Exciting’

The mom wanted to speak on behalf of her two children – her 8-year-old son, Joaquin, and 7-year-old daughter, Sofia – who have the genetic disorder.

But this year, she decided to let her daughter speak for herself.

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Sofia, age 7.

SOFIA-SANCHEZ.COM

One day, while laying on her daughter’s bed with a cellphone in hand, Sanchez spotted the perfect opportunity to ask Sofia about Down syndrome.

“Little miss, do you have Down syndrome?” Sanchez asked.

“Yes, I do have Down syndrome,” Sofia stated matter-of-factly.

Sanchez continued, asking Sofia what Down syndrome is. Sofia explained that it’s in your “blood.”

“Down syndrome is in your blood? Does it make your blood special?” Sanchez responded.

“Yeah!” Sofia exclaimed.

“Is Down syndrome scary?” Sanchez then asked.

“No, it’s not scary; it’s so exciting!” Sofia said, while motioning with her hands.

The mother of four from Rocklin, California, couldn’t stop smiling as she listened to her daughter’s cute responses.

She wanted to share a little joy with her friends, so she posted a video of the minute-long conversation on her Facebook page. And to her surprise, the video went viral with more than 5 million views.

Sanchez’s inbox has been flooded with messages.

“I’ve read message after message saying, ‘It’s so inspiring to hear about someone who loves themselves so much,’” Sanchez told CBS News. “I realized that I don’t think people hear enough from people with the disability describe just how great they feel about themselves.”

Most moms say their children are special, but Sanchez says Sofia is really special.

sanchez.jpg

The Sanchez family poses for a picture.

SOFIA-SANCHEZ.COM

After Joaquin, her third son, was born with Down syndrome, Sanchez said her family was inspired to help other children like him. During Christmas, they donated to the Reece’s Rainbow Down Syndrome Adoption Grant Foundation, an organization that helps find families for orphans with Down syndrome and other special needs by raising funds for adoption grants.

That year, the Sanchez family sponsored a little girl. But after seeing her picture, somehow, she just couldn’t get the image out of her mind.

baby2.jpg

This is the photo the Sanchez family saw of baby Sofia when they were sponsoring her through Reece’s Rainbow.

SOFIA-SANCHEZ.COM

“Why don’t we just adopt her?” Sanchez thought, while talking it out with her husband.

Her husband agreed – the little girl needed to be a part of their family.

When she was 16 months old, the family picked up the child from an orphanage in Ukraine, and the rest is history.

“I can’t imagine my life without her,” said Sanchez, gushing over her little girl.

Sofia is a bundle of energy.

She loves to act, dance, play soccer and do other things girls her age love to do.

But she also likes to speak up for “her people,” Sanchez said.

Sure, she experiences a range of emotion – sometimes she’s sad, angry, stubborn, competitive – but at the end of the day she “loves her life and she loves herself,” Sanchez said.

source;http://www.cbsnews.com

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What No One Told Me About Down Syndrome

Recently, I read a story about a baby boy born in 1982, known to us only as Baby Doe. Interestingly, this baby who had no name quickly became the center of national debate over the sanctity of human life.

In the court of public opinion, some found this newborn baby boy to be guilty of two grave offenses. First, he had Down syndrome. Somehow, he had managed to breeze through pregnancy without being detected, thus taking away his parents’ ability to abort him in the womb. Second, he was born with a (surgically correctable) condition known as tracheoesophagael fistual. Yet while a nearby hospital and its medical team were ready and willing to perform surgery on him, Baby Doe’s parents chose instead to follow the archaic and biased advice of the mother’s obstetrician…and they did nothing.

This tragic story continued with the hospital fighting (and losing) for the chance to provide life-saving measures; many families coming forward with a desire to adopt Baby Doe; and a state child protective services investigation into the situation. In the end, though, medical pleas, legal processes, and state intervention all failed Baby Doe. He lost his life just six days after birth because he was left alone with no sustenance. The cause of death was recorded as “chemical pneumonia, due to the regurgitation of his own stomach acid.”

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While the story of Baby Doe’s life and death is, to many, heartbreaking and unimaginable, the reality of the injustices he faced are not all that uncommon. Though his story took place some 35 years ago, I’m afraid that in many ways, the suppression and annihilation of people with Down syndrome still persists, even today. On the heels of reading Baby Doe’s story for the first time, I read another person’s story just a couple of days later. This mother’s story is the story of so many others…a prenatal suspicion or diagnosis of Down syndrome turned into pressure from one or more medical professionals to simply abort the baby and try again next time. It happens all the time (you can read many other mothers’ diagnosis stories here).

As I recall the many stories I’ve read or heard over the years, I can’t help but ask this question: What is the big deal about Down syndrome, anyway?

Entire nations today, such as Denmark (and Nazi Germany many years ago), are waging a war against this population. The prenatal threat against those with Down syndrome has never been greater as prenatal tests become more and more accurate. Furthermore, some medical and ethical scholars continue to argue not only for the abortion of fetuses suspected or diagnosed with Down syndrome prenatally, but for infanticide of those who receive a birth diagnosis. Yes, they are arguing for the legal right to kill babies born with Down syndrome (and other disabilities, as well).

In many ways, these assaults are working, and the population of people with Down syndrome continues to decrease as the years go by. But why?

What’s so dangerous about Down syndrome?

The other day I was thinking out loud and questioning why our world seems so dead-set on eliminating people like our daughter. My husband listened to my rhetorical questions and offered his opinion: “Because it’s not easy. Parenting a child with Down syndrome takes a lot of work.” And while I wasn’t looking for an answer from him, per se, his answer exposed the truth about why our world wants to wipe Down syndrome from our midst: fear.

Facing a reality of Down syndrome exposes our fears and forces us to recognize our vulnerabilities. Naturally, we fear “hard,” so we run from it instead. We try to make it disappear. We fear that Down syndrome will take away from our lives, destroy our normal, ruin our hopes and dreams. Fear drives this social war on Down syndrome, yet we fail to realize what we are trading our fears for in the process.

We are so busy running from pain that we forget the beauty that comes out of hardship. Nature reminds us of this truth, though, that even in the most barren, drought-afflicted desert, a flower still blooms. Even in a land stricken by the devastating effects of volcanic activity, luscious vegetation will emerge once more. Beauty from ashes. Life from death.

What’s so dangerous about Down syndrome? I think we have it all wrong, that we are fearing the wrong things.

I submit that the most dangerous threat Down syndrome poses to us as a society and as individuals is that it enables us to become better people. Down syndrome threatens our devotion to self and reminds us that pursuit of personal pleasures leads to an empty life. A life well-lived is a life in which the needs of others are put before our own.

I will be the first to admit that I grieved deeply over my daughter’s prenatal screening of Down syndrome. In fact, it was one of the darkest and most painful seasons of my life, and it led to an extremely difficult pregnancy, a 9-week stay in the hospital, and many days in my pregnancy of praying that the inevitable would not be true. At one time, I felt that having a child with Down syndrome would mean the end of my world.

I don’t regret for one second the grief I felt and the heartache I have endured in different seasons of this surprising twist to our journey. We did not ask for Down syndrome, and the grief has been a normal process in unexpected and unanticipated life circumstances. But I also don’t believe that the grief I have experienced in any way minimizes or takes away from the value of our daughter Alisa’s life. I will never accept that the detour Down syndrome brought to my original life plans would have ever justified killing Alisa, prenatally or just after birth.

Alisa has Down syndrome, but she is so much more than the many misconceptions and misled beliefs our world still holds about people with Down syndrome. She is not “a blob,” as the obstetrician of Baby Doe’s mom predicted he most certainly would be. She is not “an unbearable burden on the family and on society as a whole,” as is conjectured in this journal’s publication. She is not suffering, and she poses no threat to those who come into contact with her. But even if she was more medically-fragile, and even if she did require even more of my time, energy, and sacrifice, we should never compromise the value of human life for the sake of our own fears.

In those proverbial storms of our lives, if we trade our fears for comfort and pleasure, we lose out on the character, the strength, and the beauty that emerges when a storm is weathered. After all, diamonds aren’t formed in easy conditions or safe environments. If we run from pain and numb our senses to the grief that accompanies “hard,” we miss opportunities to love and to give and to make this world a better place, even if it means just making one life better. Parenting a child with Down syndrome is not always easy, yes, but parenting any child is not always easy. Life is not easy!

Facing a reality of Down syndrome does not have to be the death sentence the world is trying convince us that it is. While Down syndrome reminds us that life does not always go according to our plans, it also teaches us that the real purpose of life is not in getting what we want but in emerging from the unexpected twists and turns of life as people of character, integrity, and strength. People with Down syndrome demonstrate to us that the pace of life does not have to be fast and furious. We do not have to look, behave, and achieve as the world pressures us to do. Human diversity is a beautiful thing in all of its many forms.

We fear the unknowns of Down syndrome, and we believe that it is the person with Down syndrome who is somehow lacking, unworthy, too different to be given the same respect as other human beings. Yet I have found that it is not my child with Down syndrome who has needed to change, but me. It is not my daughter who has Down syndrome who was lacking, but me.

What’s so dangerous about Down syndrome? When Down syndrome touches your life, you cannot remain the same person that you once were. Yet if only we would all but walk into the “hard” and embrace the challenge, we would find that the change Down syndrome threatened to bring was, all along, something that we shouldn’t have feared at all…

source;chasinggenuine.com

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Mothers of children with Down Syndrome encouraged to terminate

Little Noa's mum says she was encouraged to terminate when she found out her child would be born with Down Syndrome.

The mother of an unborn child with Down Syndrome says she was advised by medical professionals to terminate the pregnancy.

Antenatal screening meant Masterton mother of two Danielle Bolt knew her unborn daughter Noa would have Down Syndrome, but she did not hesitate in giving birth to her now 21-month-old.

Bolt was angry with the advice she was given and said doctors and nurses should change their approach.

Noa, who is 21 months old, with her father Joshua Matthews and mother Danielle Bolt.

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Noa, who is 21 months old, with her father Joshua Matthews and mother Danielle Bolt.

“I was told to terminate by the specialist,” Bolt said. “They literally said to me Noa will become a burden on society and she’s not worth it.”

 

Noa gets a kiss from her sister Maisy.

 

Noa gets a kiss from her sister Maisy.

“It’s so cruel because they don’t know her potential.”

Bolt, who went for Chorionic Villus Sampling (CVS) at Wellington Hospital, said she was called by staff, who apologised and told her that her daughter would have Down Syndrome.

Bolt was upset they felt the need to apologise about an otherwise healthy baby girl.

“There’s nothing wrong with her … That approach there just devastated me,” she said.

Bolt supported screening to prepare mothers for any health issues their newborn may have but, for her, termination was never an option.

Bolt said Noa can be cheeky and bossy but also “the best big sister” to her five-month-old sister Maisy.

“I just hope that she’s accepted, more than anything … a whole change in attitude is what I’m looking for.”

Chris Lowry, Capital & Coast DHB general manager hospital and healthcare services, said they were looking into concerns raised by Bolt through their complaints process.

“We sincerely apologise to Danielle that comments made by our staff were insensitive,” she said.

Lowry said when a patient received a positive screening test for Down Syndrome, or other conditions, their Maternal Fetal Medicine service were there to support the family through any decision they make.

“Termination is one of several options discussed, as is continuing the pregnancy. All options available are discussed without judgement or encouragement.

“If a woman wishes to stop her pregnancy then information, counselling and support are provided.”

“If a woman chooses to continue the pregnancy, she and her family are supported.”

Palmerston North woman Ruth Eder also received antenatal results showing that her daughter might have Down Syndrome and, like Bolt, was encouraged by doctors to terminate the pregnancy.

Eder describes her now one-year-old daughter Alexandria as a “pure heart-breaker”.

“She’s full of smiles and giggles and love,” Eder said.

Eder, who is pregnant with her second child, worked in catering at the Palmerston North hospital while she was pregnant with Alexandria and said there was a culture of “fear mongering”

“I had friends who were orderlies and things telling me that ‘oh many of these cases, they don’t come out nice … the doctors are recommending a termination, you should be going for it’,” Eder said.

She said she and her husband were told most couples had amniocentesis after their first screening if it indicated a likelihood of Down Syndrome, so they could decide whether to terminate.

“If it wasn’t for our faith I honestly think we might have listened to the doctors and had an abortion,” she said.

“I actually go around now and talk to people and say, this is the child they told me I should have been terminating.”

A spokesman for Palmerston North Hospital said they would not comment on Eder’s claims.

Ministry of Health national screening unit clinical director Dr Jane O’Hallahan said the screening processs was optional, offered to provide women with more information about their pregnancy.

O’Hallahan said it included the option of giving birth in a setting that had access to specialist surgical or medical services or the possibility of considering termination.

“Termination of pregnancy would not be offered following a screening result,” she said.

“This screening offers women information that may help them prepare for the birth of their child, including the option of giving birth in a setting that has access to specialist surgical or medical services, the possibility of considering termination or palliative care in the newborn period.

“Health practitioners must respect and support any decision made by women throughout the screening process.”

Both first and second trimester maternal serum screening blood tests were publicly funded.

Midwife advisory in quality assurance at the New Zealand College of Midwives, Jacqui Anderson, said she had not heard of terminations being encouraged.

“I have not seen women made to feel pressured to have terminations,” Anderson said.

“It is impossible to know what the experience is of every woman in this situation,” she said. “In my experience caring for women in this position, they are given information about the options open to them in a neutral, non-judgmental way.”

Community Living Trust chief executive Marese McGee was surprised that women had felt encouraged to terminate during such a stressful time in their lives.

Community Living Trust is a non-profit organisation that supports people with intellectual disabilities to live fulfilling lives of their choice.

“There’s two models in operation,” McGee said. “The social modal we aspire to and the medical model that’s been around forever. The medical model is about curing people, and when you can’t cure people what do you say?”

McGee said it was a problem that new mums straight away hear all of the problems associated with a disability, which can rob them of the joys of having a newborn.

“What is the perspective of the medical model that is imposed on people when they’re at their most vulnerable?” McGee said.

“It’s about seeing the person that’s there, not the disability … It’s about giving people opportunities,” McGee said.

source;http://www.stuff.co.nz

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12 Things I Wish I Knew When I Found Out Our Son Had Down Syndrome

It’s hard to believe it’s been a year since our son was born. It’s true what they say, time really does fly…and even more so when your a parent it seems.

Since Noah’s first birthday falls on a weekday, we decided to wait and have his official birthday party on Saturday to make it easier on Noah’s friends and family to come. (No one likes rushing to a child’s birthday party as soon as they get off work.) But as you can tell from the pictures, and today’s video, he certainly enjoyed his pre-birthday party! Not to mention he’s already had a pre-pre-birthday party! Does this kid know how to party or what?

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Our next post will be all about Noah’s first birthday party (and the awesome penguin themed party my wife planned) so today I thought I’d share a few thoughts about raising a child with Down syndrome a year into our journey.

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It’s been one fun year!

The day that changed our life.

As I mentioned above, it’s hard to believe it’s been a year since our wonderful pediatrician came into that cold hospital room where we were waiting with excitement to see our little boy and told the news that would forever change our life:

“Your son has features that are consistent with Trisomy 21.”

In other words; Your son has Down syndrome.

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We love this little boy!

If you’ve read Noah’s birth story, you know that our son’s Down syndrome diagnosis was a total surprise to us. We had no idea our son had Down syndrome until a few hours after he was born. We thought everything was perfectly normal and they were just giving him the world’s longest bath as we waited for the nurse to bring him to us. It turns out they were actually just trying to reach our pediatrician (it was after-hours) and wait for her to arrive at the hospital so she could be the one to break the news to us; which I describe in more detail here.

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I’ll never in my life forget those few minutes when our pediatrician told us Noah had Down syndrome. It was like everything went in slow motion. I couldn’t speak (and if you know me, you know that’s a rare occurrence!) I didn’t know what to think. What to do. What that meant for our son. For our family. For our life. I was scared. In fact it was one of the scariest moments of my entire life. (Little did I know things were about to get a lot more scarier.)

A crash course in parenting…and Down syndrome.

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I think he enjoys birthday cake….

There are so many thoughts going through my mind as I write this post one year later. So many things I want to say, but again find myself at a loss for words. I’m overcome with emotion as I reflect on the last year and how our life has changed (in a good way) because of our son Noah. We had a few scares over the last year, learned more about Down syndrome in the last year than most people learn in their life time, and most of all; we’ve had a blast being first time parents!

I mean seriously, I knew I was gong to enjoy being a father, but this is ridiculous. I absolutely love it!

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And as for all of those parenting fears I had when Noah was born; they’re long gone. Noah having Down syndrome has just sort of faded into the background of our family. It’s our normal. Noah having Down syndrome is the same as me having green eyes, or two hands. It’s just him. No biggy. In fact the only time I really think about it is when we have to go in for a CBC, those still scare me…but that’s another post for another day. 🙂

There is no parenting time machine

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I love that little hand.

I’ve mentioned before there is no such thing as a parenting time machine so I can’t go back in time and tell myself things I wish I knew at the time. It’s impossible. However, maybe I can be that time machine for someone else.

Today on our son’s first birthday I’d like to share a few things I wish I could go back in time and tell myself when we first learned of our son’s Down syndrome diagnosis. If you’re a new parent of a child born with Down syndrome consider this your parenting time machine and that these words are coming from your future self. 🙂 (I’m so strange….)

If you are a new parent I’d also encourage you to check out this post with over 300 suggestions of what to say to someone who has just received a Down syndrome diagnosis; it’s jammed packed with encouragement from other parents raising a child with Down syndrome.

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A quick disclaimer: When Noah was born everything I knew about Down syndrome I learned from watching TV, seriously. So remember that these statements are from the perspective of a total rookie to the Down syndrome world. Like I mentioned before I know much more now than a year ago. 🙂 Also I was going to go into detail on each of these statements, but the post is already pretty long as is. If you have any questions on what I meant by any of them please be sure to leave a comment and I’ll elaborate.

12 Things I wish I knew the day our son received a Down syndrome diagnosis

1. Noah being born with Down syndrome doesn’t mean he’s sick or unhealthy.

2. Noah’s not going to be a vegetable. In fact, far from it.

3. Noah’s going to laugh and play just like every other kid.

4. Noah shares more things in common with a child without Down syndrome than differences.

5. In a few weeks your son having Down syndrome won’t be a big deal.

6. You’re going to have the ability to make a huge impact in the world.

7. You’re going to have so much fun with your son. In fact, you’re going to have even more fun than you ever imagined!

8. You aren’t alone.

9. You didn’t just exchange a happy story for a sad one.

10. Other people’s stories aren’t your stories.

11. Stay off internet.

12. You and your family are going to be just fine.

Whew….that’s a mouth full, huh? (See, I told you I’m not normally short on words!) 🙂

There are so many more things I could say about each of those statements, but I think you get the idea.

If I could just say one thing…

In fact, if I could go back in time and just tell myself one thing when I first learned Noah had Down syndrome (which would pretty much just be a summary of all of the above) it would be:

Rick, things are going to be just fine, trust me. This next year is going to be the best year of your life. I know it doesn’t feel that way now, but trust me on this one!

And today, one year later, on my son’s first birthday, I can confirm 100% that the above statement is true. This year truly has been the best year of my life. There are no words to describe how much I love my son and how much joy he brings to our life.

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I love this kid!

I love every second of being this little boy’s dad!

source;http://noahsdad.com