10 things TO SAY when a baby is born with Down syndrome

by Gillian Marchenko from SpecialNeedsParenting.net:

Today is October 1st, which kicks off Down syndrome awareness month.  In honor of doing my part to raise awareness about individuals like my two daughters Polly and Evangeline, I’m sharing one of my favorite lists: 10 things TO SAY when a baby is born with Down syndrome.

A while back I posted 10 things not to say to a parent of a child with Down syndrome.

Someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby is born with Down syndrome

10. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”

Kevin Kilbane pays respect to David Moyes for helping him cope with darkest days

by Henry Winter from the Telegraph:
When Elsie Kilbane was born with Down’s Syndrome in 2004, her father Kevin could not face going back to training at Everton. Kilbane and his then wife Laura had so many decisions to make over Elsie, so many hospital appointments to attend, so many fears to confront and learning to do.

Kilbane remembers clearly those difficult early days. Speaking on the eve of World Down Syndrome Day this Friday, one of the most respected footballers over the past two decades and now a popular BBC pundit, Kilbane is keen for other parents to absorb knowledge and ultimately encouragement from his experience.

“Elsie was born on a Monday night, so I didn’t go back into training, I just couldn’t,’’ recalled the 37-year-old. “Emotionally, I wasn’t in a great place. I spoke to David Moyes on the Tuesday and he said: ‘Look, take us much time as you want.’ It’s one of the reasons I respect David Moyes so much because of how wonderful he was with me at that time, knowing I was going through a difficult stage in my life.

“I went back in training on the Friday, the day before we played at Leicester and I wasn’t considered for the team. From the following week, I was back in normal training. David Moyes said some quiet words to me if he thought he needed to but he didn’t put me under any pressure. He’d known me since I was a lad of 16 (at Preston North End) and knew there was no need to make a fuss around me. He trusted me to look after myself.

“I couldn’t have wished to have been at a better, more caring club than Everton. Incredible. Lee Carsley is my best mate; he has a little lad with Down’s. Lee and I were always close. So when Elsie was born, to have that conversation with him was difficult for me. Lee was brilliant and he helped the other players out. Some were reluctant to talk to me. It is a difficult subject to broach. They knew I was very sad. They were going to Lee for advice on how they approached me. Lee said: ‘Just congratulate him. He’s had a little girl.’

Physical Defects Less Likely In Babies Born To Women Over Age 35; Down Sydrome Still Common

by Matthew Mientka from Medical Daily:

Women ages 35 and older give birth to more babies with Down syndrome but fewer with physical defects, new research shows.

Science has long known that women of “advanced maternal age” experience greater risk of bearing a child with a chromosomal abnormality, such as Down syndrome. However, not much has been written on the risk of congenital defects, which may affect the heart, brain, kidney, bones, gastrointestinal tract, and other aspects of the body’s basic composition.

In a new study, investigators at Washington University in St. Louis analyzed obstetric and ultrasound data from more than 76,000 women receiving second trimester ultrasounds as part of their routine neonatal care. Aside from considering the mother’s age, they also looked at the severity of such malformations, categorizing them by organ system, including heart, brain, and kidney.

Troy mother of a child with Down Syndrome founds Special Miracles online community

by Rachel Dubrovin from KLEWTV CBS 3:
A mother in Troy wasn't sure what to believe when her second son was diagnosed with Down syndrome shortly after birth.

Reporter Rachel Dubrovin explains how the diagnosis inspired her to make a difference, and help thousands of other parents overcome the negative stigmas that are associated with having an extra chromosome.

"Well, it's just an extra chromosome," said Special Miracles Founder Sabrina Moyer.

Colton Moyer is a 15-month-old boy with Down Syndrome. His parents, Dan and Sabrina Moyer, said the diagnosis came shortly after he was born.

"I had no knowledge, or really any experience, or any information about Down syndrome, and so I think I was in extreme disbelief and shock," said Sabrina.

"There was so much to learn, and so many questions that the internet just couldn't answer," said Dan. "And it was a lot of concern of you know, what are we facing?"

"Everything's just thrown at you that day, that moment, you know," said Sabrina. "And you start thinking about things that may or may not happen in the future."

The Moyers started doing research on Down syndrome, and Sabrina set up an online community to update her family and friends on her findings and Colton's progress.

"It kind of just snowballed," said Sabrina. "It was on Facebook, I did have a website, and I guess there was a need for it."

Sabrina Moyer named the online community 'Special Miracles.' She created this Facebook page a little over a year ago, and now it has more than 33,000 followers.

Why Down Syndrome Doesn't Define My Son

by Christie Taylor from the Huffington Post:

What makes a person's story a success story? Is it fame, is it overcoming great challenges, is it genius?

If it is, Derek's story is a success story on all levels.

There is another component that I believe makes Derek's story a success story. That component is Adam's genius of communication.

You can see Adam's genius at work in the bond that he shares with Derek. You can also see Adam's genius at work in the way Derek is able to fully utilize and enjoy the gifts he has been given. His genius starts its work where most people stop. Adam had the desire and dedication to go beyond Derek's challenges, to learn who Derek is as a man.

I've seen the genius of communication at work in my life, and its power is amazing. I was introduced to this genius by the lady with the blue folder.

I met her when she visited my hospital room the afternoon after my son was born. Earlier that morning, I learned my son had Down Syndrome, and my emotions were still very raw.

When the lady with the blue folder walked in my room, I instinctively knew that folder she held in her hand was full of definitions, statistics and medical jargon. Wasn't being told your child had Down Syndrome enough to process for one day? The last thing I wanted right then was some stranger giving me an education on what having a child with Down Syndrome meant. She did give me that very education, but not in the way I expected.

Concern over high incidence of Down syndrome in UAE

By Samir Salama, Associate Editor from Gulf News.com:
FNC members ask for incidence of Down syndrome to be cut down.

Abu Dhabi: Action must be taken to cut the high incidence of Down syndrome among Emiratis, which is double the global average and higher than the incidence in other GCC members, the Federal National Council told the government yesterday (Tuesday).

Dr. Amal Abdullah Al Qubaisi, a member from Abu Dhabi, asked Abdul Rahman Al Owais, Minister of Health, why the incidence of Down syndrome, a chromosomal condition which affects physical and mental development, among Emiratis is twice the world average and what action the ministry has taken to address the issue.

“How can the Ministry of Health explain this extremely high incidence of Down syndrome among Emiratis [one in every 319 births], compared to Oman [one in every 500 births], Qatar [one in every 546 births], Saudi Arabia [one in every 554 births] and Kuwait [one in every 581 births],” Dr Amal asked.

The condition is associated with delayed growth, joint laxity and incomplete organ formation, mostly of the heart.

The incidence of Down syndrome among Emiratis in Dubai is one in every 320 births, higher than the world average of one in every 800 births, according to data released in March by the Centre for Arab Genomic Studies.

Dr. Amal questioned the ministry’s coordination with other competent authorities, including the Ministry of Social Affairs, demanding utmost care be given to Down syndrome patients and their families. Dr. Amal also urged the Ministry of Health to set up specialised clinics in every emirate, providing free of charge medical services and reduce the charge for rehabilitation sessions to not more than Dh150 a session.

Dr. Amal said as many as 938 students in the UAE were patients with Down syndrome and asked Al Owais what was the total number of patients with Down syndrome in the country.

The Minister of Health said the global average was now one in every 600 births, pointing out that the incidence had grown with increased maternal age and high number of children.

He reviewed the ministry’s efforts including pre-marital examination for would-be couples and marital medical services. Al Owais called for concerted efforts to better educate members of the public about the condition.

Hamad Al Rahoumi, a member from Dubai, asked Al Owais about the possibility of opening clinics for Quranic healing.

But Al Owais said the Ministry of Health has nothing to do with faith healing.

Al Rahoumi said preventing imams from practising Quranic healing has led people to turn to sorcerers.

when the perfect baby you adore suddenly becomes a stranger

from the Daily Mail:

You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.

I was feeding my baby Xavier on New Year’s Eve in 2008 when the consultant rang. Terror pulsed through my veins as he told me: ‘Your son has Down syndrome.’

I’m not proud of my reaction that day, but I felt utter devastation. I panicked it would render him — and me — an outcast.

Less than a year before, I’d been a carefree party girl with a career as a novelist and living in London. Then came a very sobering unplanned pregnancy, discovered only days after splitting up with my boyfriend-of-sorts. And now another unexpected, far more terrifying mountain lay ahead of me.

Four-and-a-half years on, I can honestly say my initial fears were unwarranted. In fact, I think Xavier’s diagnosis made me confront my sudden motherhood head on.

I’m not saying I wouldn’t have been a good mother without it, but I was certainly jolted into action. It was as if I’d been given an electric shock that sent me headlong into parenthood in a way I’d never imagined.

Babies with Down Syndrome Living Longer, But Disparities Still Seen with Black Infants

from Afro.com:
The occurrence of Down syndrome and the number of fatalities related to the condition have decreased among American children, according to a new study. However, Black children with Down syndrome remain twice as likely to die.

A study published in the medical journal Pediatrics tracked 16,506 infants, born between 1983 and 2003 in 10 different sections of the country. Researchers found that survival rates in the first month of life have remained relatively steady, but the rates of survival to ages 1, 5, and 20 have all increased.

However, a disparity remains between survival rates of White and Black children with Down syndrome.

“The survival of children born with [Down syndrome] has improved and racial disparities in infant survival have narrowed,” said the report, published in December. “However, compared with non-Hispanic White children, non-Hispanic Black children have lower survival beyond infancy.”

According to information from the Centers for Disease Control and Prevention, African American infants with Down syndrome are twice as likely to succumb to complications related to the condition.

Children born at 3.3 pounds or less, which can occur naturally or as a result of smoking while pregnant, are 24 times more likely to die.

Heart health also plays a major part in survival rate, according to the Pediatrics report.

“Congenital heart defects are a significant risk factor for mortality through age twenty,” the study found, putting the increased risk at five times that seen with children born without the condition.

Humans typically have two sets of 23 chromosomes, or a total of 46 gene pockets that control development both inside and outside of the womb, according to the CDC. 

Children with Down syndrome, however, have a total of three copies of the chromosome 21, which can affect how a child develops mentally and physically. Roughly one infant out of every 700 born will have Down syndrome.

While there is no way to prevent the development of Down syndrome, having a baby after age 35 dramatically increases the risk of giving birth to an infant with the condition, according to the American Congress of Obstetricians and Gynecologists. The organization strongly recommends that every pregnant woman make use of the tests available to determine risk of the syndrome and other chromosomal disorders, no matter what their age. The tests include ultrasounds should be taken within the first 20 weeks of every pregnancy.

According to the organization, blood tests and specific ultrasounds can show doctors early warning signs for Down syndrome by getting accurate readings on the “thickness of the neck and back area,” one indicator of the presence of the condition.

Growing up with Down Syndrome

from Longview News-Journal by Robin Aaron:
Meredith Brooks is the mother of two little girls, Halle, 4 and Kate, 14 months. Both her daughters are a joy she says, but one of her daughters requires a different type of developmental attention. Kate has Down Syndrome.

Having grown up here in Bowie County as the daughter of Bates Family Funeral Home Director Robbie Bates, she says she had little exposure to the condition that would become closely related to her family.

“I did know a little bit,” Meredith said. “Sadly unless you’re in that situation dealing with a Down’s child, you can’t know what it’s like.”

Meredith Brooks now resides in Colorado. Two months after she and her husband moved there in June 2011, Kate was born.

The family was overjoyed at her arrival and say she looked exactly like her big sister.

“We had no idea she had Down’s till three days after her birth.”

Doctors also found out that baby Kate had four holes in her heart. As of now, three of those have healed. Doctors believe the final one will heal on its own.

According to Brooks, there are a great many misconceptions about Down Syndrome. One of these is the belief that it mainly strikes children whose mothers are ages 35 and older. At least 80 percent of parents of Down’s children are under 35.

The Brooks chose not to do all the invasive prenatal tests because of their faith.

“We had no reason to believe she would not be healthy,” Brooks said.

Since that time, the Brooks say they have learned so much from their youngest daughter about how to look at life and they can’t imagine being without her.

As long as children with Down’s are enriched they can do most anything normal children can do. Infact, Meredith says, Kate beat her sis on some of her developmental Milestones.

It is a misconception that children like Kate are stupid. Now these children are helped early on and are able to do anything most children are able to do. Proper training and therapy are important. Many of them still have decent IQ levels.

“Down Syndrome is a condition, but she is a child just like anybody else and deserves opportunity just like anybody else,” Books said.

According to Meredith, she and her husband have been saddened to discover that early testing produces a lot of false positives and negatives. Sadly 90 percent who learn that their child will be born with Down’s choose abortion.

“That is one of the saddest things to us,” She said. There are about 6,000 Downs children born in US annually. There is no particular race, nationality or religion that it affects.”

Kate’s song, her mom says is sung by Bill and Gloria Gaither. It says “I am a Promise, I am a possibility.”

Sharing their challenges: Moms of Down syndrome boys armed with information

by Dorothy McKnight from Daily Press:
Look around you; there is beauty everywhere. The beauty that is seen daily might be outer beauty or someone's inner beauty.
Families that include a member who happens to have Down syndrome see the beauty in their children everyday.
But there was once a time in American society when parents who gave birth to a baby with Down syndrome were advised to place the infant in an institution and move on with their lives. Even when they decided to bring their child home, parents were not given much encouragement that their son or daughter would have a good "quality" life.
With advancements in genetics and prenatal care, many women who learn during their pregnancy that they will be having a baby with Down syndrome are able to prepare and educate themselves about their child's diagnosis.
Both Cindy Vader and Lourie Schuenke of Escanaba faced those same decisions themselves when they gave birth to their sons, both born with Down syndrome. In each case, their little boys have brought such joy into their own lives and the lives of their families, the women are now motivated to encourage and support other women who are facing the same choices they faced.
Cindy and Lourie are members of the Upper Peninsula Down Syndrome Association based in Marquette yet serving the entire Upper Peninsula, and are working hard locally to provide information to families of children with Down syndrome.
"The Upper Peninsula Down Syndrome Association started as a group of parents getting together to reach out to each other for support and to reach out into our community for awareness," said Lourie.
Jacob, the only child of Cindy and her husband, Len, was born with Down syndrome 15 months ago. The mother of two sons, Lourie's younger child, Konner, 5 1/2, also has Down syndrome.
Cindy learned of her baby's diagnosis during her pregnancy. While undergoing a routine prenatal exam, she was given an ultrasound and saw her unborn child for the first time.
"During the ultrasound there were no evident markers for Down syndrome, he looked perfect," Cindy said with a tender smile. "I even saw him sucking his thumb."
But Jacob's condition was diagnosed during a subsequent amniocentesis that her doctor recommended due to her being high risk because she was already in her late 30's when she became pregnant.
"For me, knowledge is power," said Cindy. "The test showed I was going to have a little boy with Down syndrome. Due to my age I knew there was a chance but the doctor called me at home to tell me for sure. My husband wasn't home so the doctor's words felt like a punch to the stomach. I didn't have any information about Down syndrome and didn't even know anyone with Down syndrome."
After discussing the call with her husband, Cindy said she was upset when subsequent phone calls yielded no offer of information or assistance.
"When I think about it, It still feels like it was just yesterday," she said.
Cindy then decided to take a few days off work to education herself about her unborn baby's diagnosis. After connecting with another soon-to-be-mother who was also expecting a child with Down syndrome, she learned about the support group.
Lourie's discovery of her baby's diagnosis didn't become evident until after his birth.
An ultrasound was inconclusive and suggested that the baby might be developing a tumor on the base of his brain and he might be born with cerebral palsy. Subsequent ultrasounds showed no tumor and doctors said that her child was healthy. Down syndrome was never mentioned.
"His diagnosis of Down syndrome didn't even occur until after he was born, and he had so many medical issues they took priority over everything," Lourie said.
But Lourie soon came to the realization that the road on which she was about to embark with her little son was going to be a rocky one due to those medical issues. A day after his birth, Konner was taken from St. Francis Hospital where he was born, to Marquette General where he spent the next 26 days in the Neonatal Intensive Care Unit (NICU) before he was airlifted to Children's Hospital in Milwaukee. Konner was born with pneumonia in both lungs and it was discovered that he a large hole in the center of his heart which needed a full AV canal repair. He also was born with duodenal atresia, and malrotation of the colon. Her son also had other medical issues and later had a G-tube placed, which is a tube to the stomach for feeding. He underwent three surgical procedures the first day in Milwaukee.
"I was told he was not going to survive," Lourie said.
Almost three months after his birth, Konner was allowed go home from the hospital for the first time.
But Konner's ordeal wasn't over. He still needed surgery to correct his heart condition.
"He weighed 6 pounds, 13 ounces when he was born but by the time a week had passed, he was just about 4 pounds," Lourie said. "He needed to have the heart surgery and he had to be at a certain weight in order to undergo open heart surgery and survive."
More than 5 years later and with a total of 15 surgeries under his belt, Konner is now a student at the ISD Learning Center.
"He's doing very well there," Lourie said. Although due to his medical issues, most milestones were delayed. Konner didn't walk until he was almost 3. He continues to undergo physical and occupational therapy as well as speech therapy.
"We knew that Konner's jaw and surrounding muscles were weak so he began learning to use sign language when he was barely two and is now trying to learn to verbalize along with sign," Lourie said. "He's also had four surgeries on his ears and that might have contributed to why he was unable to talk. He wasn't able to hear in the first place."
Lourie smiles when she speaks of the special relationship between Konner and his older brother, Brendon16-years-old. "They're great together, " she said.
So what hopes for the future do both ladies have for their sons?
"I have as much hope for Konner as I hope for my 16-year-old son," said Lourie. "None of us have any guarantees for our children. There are many typical children who develop serious problems as they grow up and you don't give up on them. So why shouldn't I expect the best for Konner?"
Cindy expressed even more encouraging news for families with children who have Down syndrome.
"With more research and more therapies that are becoming available, I've learned of more children with Down syndrome graduating from college and even getting master's degrees," she said.

Two month old girl with Down’s syndrome goes to sea.

from Books Live by Pierre va Rooyen:When she was only two months old, Down’s impaired Lucy left East Africa on a sailing boat. On board were her mother Abigail (the skipper), Lucy’s older brother and a young African boy who  acted as nursemaid. Just the four of them.
Eight months later, they arrived in Malaysia and the nursemaid was able to fly back to Africa.
There is a father, but I won’t write about him, because he cursed Abigail for producing a monster, kidnapped the couple’s other son and disappeared.
I met Lucy when Abigail brought her to tea on our boat. This brave little girl was then ten months old, unable to talk and, because she was so double-jointed, unable to crawl or walk. She dragged herself on her arms. I didn’t realise Down’s children are not only intellectually impaired but also suffer physical abnormalities.
The husband’s rejection of Lucy dragged Abigail into depression.
‘He’s wrong,’ Faith and I told Abigail. ‘We are friends with two teenage Down’s girls and they are fantastic people. This started her checking up on the internet and she quickly changed her mind.
Ten month old Lucy was a girl to fall in love with. She came to tea every day and after she accepted us, we played smiling games. She soon caught on and it wasn’t long before she returned our smiles.
But funny smiles which had us giggling. She would half turn her head away, look at us out of the corner of her eyes, and smile like an imp as if we had caught her doing something wrong. We loved her for that. Ha, but now we were communicating.
She then allowed me to enunciate the alphabet  while she watched my lips. This took me by surprise, all twenty six letters.
To see what her reaction would be, we bought her a life-size doll, probably intended for a five year old. The first thing ten month old Lucy did, was reach for the doll’s hands to see whether this was a real child. Smart thinking.
We were making fast progress and every time she passed in her push-chair, we waved at her. Good thinking. It took her only a day before she was waving back. And smiling, of course.
The next time Abigail took her to the supermarket where Lucy  sat inside the trolley, she took it into her head to wave at every shopper who passed. And of course, they waved back.
Then Lucy got the better of Abigail, We were sitting in Senta’s cockpit having tea and Abigail wanted to take a biscuit out of the cookie jar and hand it to her daughter.
‘No,’ I protested, grabbing the jar. ‘Don’t treat her like a baby. Let her
decide for herself which biscuit she prefers.’ I started to offer the jar to little Lucy.
‘She’ll never take a biscuit,’ Abigail retorted. ‘She’s frightened to put her hand inside the jar.’
I ignored her.
‘Choose a biscuit, Lucy,’ I invited, offering the cookie jar to her.
Lucy had a good look inside the jar, saw the one she wanted, put her hand into the jar and selected the chocolate one.
We killed ourselves laughing at poor Abigail spluttering, ‘Well, she’s never done that before.’
Then Lucy put me in my place. We were eating at a pavement restaurant and Lucy sat in the grass playing with a teak tree leaf. You must know that teak leaves are enormous, twice the size of dinner plates. So she had quite a prize there.
I wanted to play the game of give it to me and I’ll give it back to you. Ha, ha, Lucy was having none of that. She glared at me and quickly thrust the leaf behind her as far as her little arm would reach.
That taught me something. She was regarding me as a bully. Good for you Lucy.
Abigail did get her son back. The father had taken him to Vanuatu in the Pacific and Abigail obtained a court order against him. She’s in Switzerland now with her daughter and two sons, planning on going to sea again. 

Why So Many Babies Are Still Being Born With Down Syndrome

from The Atlantic by Adam Wolfberg:
As prenatal tests improve, more and more women are finding out if their fetus has an extra chromosome, but they're still carrying to term

Prenatal diagnosis -- the ability to diagnose abnormalities before a baby is born -- is undergoing a revolution due to the recent arrival of tests that can accurately detect fetal genetic abnormalities, including Down syndrome, by testing the mother's blood. For the past 30 years, obstetricians like me have used the mother's age, ultrasound markers, and levels of certain blood chemicals to guess whether a fetus might have Down syndrome, or other genetic abnormalities. But it took an invasive test -- an amniocentesis or a chorionic villus sampling -- to be certain, and these tests occasionally caused miscarriage. It was an inexact guessing game that was extremely difficult to explain to patients.

There are a host of reasons why patients and doctors want to know in advance whether a child will be affected by a large number of genetic diseases, but by far the most common concern patients have is whether their baby will have Down syndrome -- a condition in which the child has an extra copy of chromosome 21 and will have cognitive impairment and be at risk for other abnormalities, from heart defects to leukemia to early dementia.

The number of babies born every year affected with Down syndrome has increased slightly in the United States to about 6,000 annually.

But there are really only two reasons why parents undergo testing to determine whether their baby will have Down syndrome: to prepare to raise a child with special needs, or to terminate the pregnancy. (Those of you who hold strong 'pro-choice' or 'pro-life' views are getting your hackles up, I know. So I'm going to go ahead and apologize in advance for ignoring your agendas entirely in this post.)

The number of babies born in the United States each year affected with Down syndrome is the result of several factors, including the number of fetuses conceived that carry the third copy of chromosome 21 (older mothers are more likely to conceive Down syndrome-affected fetuses, and the childbearing population in the United States is aging), the percentage of pregnant mothers who choose to test for Down syndrome, and the percentage of women who learn they are carrying a fetus affected with Down syndrome who choose to terminate. Fetuses affected with Down syndrome are more likely to miscarry than normal fetuses, but this hasn't changed over time.

Interestingly, the number of babies born every year affected with Down syndrome has increased slightly in the United States to about 6,000 annually according to the Centers for Disease Control (CDC), even as the trends I just mentioned have swung dramatically.

A recent article in Prenatal Diagnosis provides the best glimpse into the choices women made about abortion for Down syndrome over the past couple of decades, and the authors' conclusions are that fewer women who learn their fetus has Down syndrome are opting to terminate their pregnancy, and the percentage has probably declined over time to someplace between 60 and 90 percent. The conventional wisdom, based on a paper in the same journal from 1999, was that over 90 percent of Down syndrome-affected pregnancies were terminated, although the current paper casts doubt that the percentage was ever that high.

So what's going on? If the abortion rate is declining, why isn't the number of babies born with Down syndrome rapidly increasing? Several factors are at play:

• The number of babies born to Hispanic women is increasing, and Hispanic women are least likely to terminate a fetus affected with Down syndrome.
• It used to be that women had to make a conscious decision to have the test for Down syndrome, and the women who chose to be tested were probably more likely to terminate if the series of tests was positive. Due to guidance from the American College of Obstetricians and Gynecologists, more and more women are getting tested for Down syndrome, perhaps including more women who don't terminate their pregnancy when the test comes back positive.
• However, since women who don't get the Down syndrome tests can't terminate for this reason (because they never find out their fetus is affected), and more women are being tested, the overall number of terminations for Down syndrome may have increased.

Perhaps the most important factor is a sea change in society's approach to individuals with Down syndrome. Explains lead author of the recent paper, Jaime L. Natoli, a senior consultant in the department of clinical analysis at the Southern California Permanente Medical Group, in response to emailed questions: "Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers -- perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street."

What will the impact of these new tests be on the number of babies born with Down syndrome, since it is now easier to make a diagnosis without risking miscarriage? Says Natoli, "I cannot predict if the termination rate will go up, down, or stay the same. A lot of people think it will go up, but I wouldn't be surprised at all if it went down."

My guess is that new tests will have little impact. They are much easier to understand than the old ones, and eventually insurance companies will pay for them for most women. I suspect that in 10 years most women carrying a fetus affected with Down syndrome will receive a diagnosis early in their pregnancy. This will mean that more women will have to make the gut-wrenching decision about whether to continue the pregnancy or abort. And I predict that the number of babies born affected with Down syndrome will stay about the same.

family's journey of acceptance and love

Kelle Hampton discusses her family's journey of acceptance and love on ABC News

a mother's prenatal bond - “I already loved him so much.”

from NWF Daily News by Kari C.Barlow:

Mallory Griffin’s hands move confidently as she settles her wriggling 4½-month-old baby boy in her lap.

She snuggles him close to her heart, careful not to tangle his feeding tube. Kai calms immediately, his dark eyes fixed on her face.

“Before Kai, I had never changed a diaper,” she said with a laugh. “I was horrible with children.”

Now, the 24-year-old is raising a baby with numerous special needs largely on her own. Her husband, Mulan, is an explosive ordnance disposal technician stationed in Afghanistan.

Griffin, who lives in Bluewater Bay with her mother, has known since the early months of her pregnancy that her son would have extra challenges.

“It was at 18 weeks,” she said. “We were going in to find out the sex … and they were having trouble seeing the other side of his heart.”

Diagnosed with Down syndrome, Kai was born six weeks early on July 15 with an atrioventricular canal defect that allows extra blood to flow from the heart to the lungs, which overworks both organs.

Within days he was flown to Children’s Healthcare of Atlanta, a leading pediatric hospital. Griffin traveled up with family to be near Kai, who eventually was strong enough to have heart surgery Oct. 13.

“Learning to get used to living in a hospital room, that was hard,” she said. “I connected really closely with one of his nurses … and that really helped.”

Sitting on the couch in her mother’s living room, Griffin lifts Kai’s shirt and marvels at the barely visible scar on his baby-smooth chest. He gives her a chubby smile as she pats his tummy.

“It just puts into perspective what’s important,” she said, admitting with that she often just sits and stares at him. “He’s everything now.”

Griffin, a tall blonde with a quick smile, is often amazed at the turn her life has taken in the past year. Before getting pregnant, she was partying her way through Florida State University.

Now, she has a baby in her arms, one who cannot yet suck on a bottle, whose lungs are still healing and who takes several different medications each day.

Her friends tell her she’ll eventually need a break from it all.

“I don’t ever want to take a break,” she said. “It’s amazing. I’m happy sitting on the couch with Kai.”

Griffin finds it hard to believe that not long ago, during the weeks following the Down syndrome diagnosis, she was given the option to terminate the pregnancy.

She never considered it.

“It didn’t matter to me,” she said. “I already loved him so much.”

To combat the constant worry, she educated herself about Down syndrome and what lay ahead. She also relied heavily on her parents, Phillip and Alyson, for support.

But caring for Kai hasn’t been easy. He was on oxygen when he first came home from Atlanta. It’s gone now, but the feeding tube remains, and he must have a pre-digested formula every three hours.

“He’s on a lot of medications to keep everything running smooth,” said Griffin, who travels to Pensacola for Kai’s doctors appointments. “I’m just happy that he’s alive.”

She says the holidays will be sweeter this year because Kai is part of the family.

 “I just want to spoil the heck out of him,” Griffin said. “It’s going to be a great Christmas.”

She and other family members, all University of Florida fans, are happily filling up his nursery with memorabilia.

“He has a huge gator collection, so he can have a swamp in his room,” Griffin said.

As Kai continues to grow and improve, she finds herself excited about his future.

“It’s just going to be different (from what I once thought),” she said. “He just blows my mind every day.”

If Kai is stable enough, Griffin wants to move back to Tallahassee next year to finish her bachelor’s degree in studio art. She’s even considering a career in nursing.

“I feel like he’s made me a complete person,” she said. “I need to be the best for him.”

Increase in births with Down syndrome in Norway

from the Foreigner:

The annual rate of children born with the chromosomal condition was 60-80 between 1999 and 2009, whilst it was 40-60 in the ‘80s.

Foetal screening introduced in Scandinavian neighbours Denmark and Sweden has meant numbers of Down’s births are declining.

Norway’s Institute of Public Health believes the increase is due to a higher number of older mothers.

Mette Weitemayer, leader of interest organisation Ups and Downs’ Telemark branch, welcomes the news.

“There is no reason to opt out from having children with Down syndrome. Parents, others who know people with Down’s, and I feel a sadness when hearing it’s possible to opt out [from giving birth to] these types of persons,” she says to NRK.

Glenn and Tonje Borger Clausen tell the broadcaster they have no regrets about having Ludvik, who was the subject of harassment on Facebook because of his condition.

Although they were surprised when first learning their son had Down’s, a proud Mr Clausen declares, “we need diversity in our civilisation. It’s just positive.”

Sarah Palin's complete letter to her family regarding Trig

from dialymail.co.uk:
Sarah Palin imagined God talking to her in a deeply touching email she wrote two weeks before her fifth child, Trig, was born with Down syndrome. The e-mail was released June 13th 2011.

The following is Sarah Palin's complete letter to her family regarding Trig:

To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):

I am blessing you with this surprise baby because I only want the best for you. I've heard your prayers that this baby will be happy and healthy, and I've answered them because Ionly want the best for you!

I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn't think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!

Then, I put the idea in your hearts that his name should be "Trig", because it's so fitting, with two Norse meanings: "True" and "Brave Victory". You also have a Bristol Bay relative with that name, so I knew it would be best for you!

Then, I let Trig's mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news - that way Piper wouldn't have so long to wait and count down so many days - just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palins look forward to birthday celebrations that go on for three, four days... you all really like cake .) I know you, I knew you'd be better off with just a short time to wait!

Then, finally, I let Trig's mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing . But I gave Trig' s mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!

I've given Trig's mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that. I'll give all of you the same happy anticipation and strength to deal with Trig's challenges, but I won't impose on you...

I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig's life a great one.

This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters . The baby will expand your world and let you see and feel things you haven't experienced yet. He'll show you what "true, brave victory" really means as those who love him will think less about self and focus less on what the world tells you is "normal" or "perfect". You will grow and be blessed with greater understanding that will be born along with Trig.

Trig will be his dad's little buddy and he'll wear Carhartts while he learns to tinker in the garage. He'll love to be read to, he'll want to play goalie, and he'll steal his mom's heart just like Track, Bristol, Willow and Piper did. And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for in fact Trig will - in some diagnostic ways - always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.

Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it "Down's Syndrome", and Downs kids have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!

Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!

Trig's mom and dad don't want people to focus on the baby's extra chromosome. They're human, so they haven't known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I'm giving to the Palin family, and the greater Alaska family. Many people won't understand... and I understand that. Some will think Trig should not be allowed to be born because they fear a Downs child won't be considered "perfect" in your world. (But tell me, what do you earthlings consider "perfect" or even "normal" anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as "perfect" on t.v.? Have you noticed I make `em all shapes and sizes? Believe me ,, there is no "perfect"!)

Many people will express sympathy, but you don't want or need that, because Trig will be a joy. You will have to trust me on this.

I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: "My ways are not your ways, my thoughts are not your thoughts... for as the heavens are higher than the earth, my ways are higher than yours!"

I wrote that all down for you in the Good Book ! Look it up! You claim that you believe me - now it's time to live out that belief!

Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won't give you anything you can't handle. I am answering your prayers. Trig can't wait to meet you. I'm giving you ONLY THE BEST!

Love,
Trig's Creator , Your Heavenly Father

A letter to my 5 year old daughter on her birthday

A letter to my daughter, from Amy of particularlyperfect.com:

Dear Kayla,

How can I put into words the pure joy you have brought into my life over these past five years?  How could I ever tell you exactly what you mean to me and explain the incredible journey we have shared together?  My life has been magical since you were placed in my arms just five years ago today.  Just like the best scenes to my favorite movies, many memories we have shared play in my mind over and over with such clarity.  Like the day you were born…

“She has the cutest little button nose”, Daddy exclaimed as he looked over the paper-like blue curtain that separated me from my future…my life as your Mommy.  As I lye there, nauseous, strapped to the operating table, I envisioned my daughter.  I envisioned you having my hair and Daddy’s eyes.  I was anxious.  I couldn’t wait to hold you in my arms…kissing you, telling you how very much I loved you and couldn’t wait to be your Mommy.  I couldn’t wait to hold my perfect little girl. 

I was scheduled to have a c-section on Monday, May 15 {you were breech and weren’t budging so we were going to have to go after you}.  As with every other time in your five years, you had your own plans.  You wanted to make your arrival when you wanted…not when we planned for.  So during the night of Friday, May 12, I began feeling uncomfortable.  Thinking it was nothing more than horrible gas pains I went to bed and awoke early still feeling uncomfortable.  I was comforted that I wasn’t in labor, as I had just seen the doctor hours earlier who said I was not even close to going into labor and they would see me Monday morning.  My pregnancy began with cravings of jelly donuts.  Strange – I know…but that’s what I craved…that and corn dogs.  Let me say…I have never been a fan of either but my body needed them during my pregnancy.  The jelly donut craving subsided by my second trimester but for some reason the morning of May 13 I was jones-ing for a jelly donut.  I sent Daddy to Dunkin Donuts to buy you a jelly donut {because it was, of course, you that was craving the donut and Daddy would do anything for you…even then}.  By the time he returned {around 9am}, I was in labor with contractions that were 7 short minutes apart.  We placed a call to the doctor and made our way into the hospital.  Knowing I would need c-section and food is not recommended before surgery I was left craving that donut, smelling it…not tasting it {good thing I had you to look forward to or I would have been very grumpy}.  Once we made our way to the hospital, we made our phone calls to family and patiently waited for an operating room.

I remember being afraid of surgery...of the operating room...but keeping a positive attitude, I joked with the nurses on my way in.  Staring at the ceiling from the stretcher, I said "so this is what the inside of an operating room looks like...nothing like it looks on TV".  That was the last piece of laughter that would exit my body for a few days...Everything was happening so quick around me.  I felt tugging and pulling and then was the moment that you entered the world...on May 13, 2006 at 3:29 in the afternoon.  As I lay there I caught a quick glimpse of your naked newborn body as they whisked you to the scale to perform your newborn testing… There was no crying.  I heard nothing and I panicked.  What is wrong?  Oh, God…please make everything ok…please…I would give anything for you to be ok.  Daddy sat next to me, stroking my shoulder and kissing my forehead.  I am sure he told me that he loved me and other sweet things, though I don’t remember the words.  While the next few moments are more vivid than any moments in my life, those moments leading up to the muttered words are gone.  I told Daddy to go be with you, comfort you and talk to you.  I watched him walk away from me, toward you.  I studied the excitement in his face.  I witnessed him fill with pride as he stood over you.  His face lit up like I had never seen before.  He was a Daddy…a very proud Daddy.  And while I wish that memory, that face was the one that was etched into my mind forever, it was the next face that I will never forget.  Daddy snapped pictures feverishly.  After taking at least a dozen pictures, he held the camera at his side.  Still beaming with pride, he looked on as the doctors were assessing you.  For some reason I couldn’t hear and yet you and the team of doctors that surrounded you were just 10 feet away.  Perhaps the doctors were whispering or perhaps my overwhelming emotions of being a new Mom caused me to temporarily lose my hearing.  Whatever the reason, I just couldn’t hear a thing.  As the doctor was busy stitching me up, tugging and pulling at my body, I laid there with my head turned to my left, staring at the backs of doctors in their blue scrubs, wanting so badly to see my daughter.  Wanting so badly to hold you in my arms.  And then I saw Daddy.  Standing proud as a peacock, shoulders back, smiling from ear to ear…and then…within seconds it seemed as if he lost all of the air in his body…his shoulders slumped, his smile was gone and he stood emotionless…staring…listening to the doctors.  I remember yelling out “what’s the matter?” and Rick came running to my side… “nothing”, he assured me, “nothing is wrong”…as you cried I told Daddy to go back to be with you and he did.  Still, staring blankly.  I knew something was wrong.  I knew that he was trying to protect me from something and I cried for him to come back.  I begged him to tell me what the doctors told him…and he whispered “everything is fine.  The doctors think she may have Down syndrome”.  I layed on that operating table, staring at the bright florescent lights and the white ceiling tiles.  I was helpless…unable to hold my baby and without ever seeing your beautiful face I was met with the words Down syndrome.  While it would be days later that I would find out what they said to Daddy, we will never forget those words…that moment when Daddy fell paralyzed with fear, breathless…that moment is the moment that the doctor said to him “I need to show you what is wrong with your daughter” as she proceeded to point out your simian crease on the palm of your hand, your beautiful almond shaped eyes and your flat nose bridge. Then she spoke those two little life-changing words…Down syndrome.  Surely someone in the medical field could have used better terms than “what is wrong with your daughter”…but she didn’t.  Pointing out what is wrong instead of congratulating a new father on the birth of his beautiful daughter. Allowing us time to enjoy our daughter before delivering us the suspected diagnosis.  Moments later they placed you in my arms and I knew.

I saw your round face, your cute little button nose and those almond shaped eyes.  While they were filled with that post-birth goo, I looked into your eyes and I knew.  It was as if I was gifted that Mommy-instinct at that exact moment and in that moment, I knew you had Down syndrome.  As I held you tight and kissed you, I whispered I loved you but wondered if I truly ever could love you.  If I truly had the capacity to love someone that wasn’t “perfect”.  As tears rolled down my cheeks, I held you close and the world around me was blank.  I pressed your head into the crook of my neck as I lay my cheek upon your head.  I closed my eyes and felt as if I left my own body.  I could never explain that moment with the passion and feeling that surged through my body but it was raw and it was real and I felt it.  I felt my body empty.  My heart, my soul, my life and my world poured out of my body.  Within those moments I was rolled from the operating room to the post-op room.  Knowing that family was anxiously waiting downstairs for the call or visit from Daddy that I was ok and you had “ten fingers and ten toes”, he picked up the cell phone and called MomMom {at my request because I knew I couldn’t tell her the news}.  You were having difficulty maintaining your body temperature so the nurse placed you in a warmer next to me.  As Daddy spoke to MomMom, I stared over my right shoulder at you, my daughter, lying under a heat lamp like a chicken dinner.  I heard the casual back and forth of yes she is in recovery and doing well…he explained you looked just like a little loaf of bread...and then the pause…Daddy looked down at the tile floor, turned his back to me and muttered “they think she has Down syndrome”…and with that was silence for what seemed like an eternity.  I remember feeling bad.  Knowing all of the pain and hard times my Mom has endured over the years, knowing how much she was anticipating your arrival and knowing she would never expect this.  She would never expect this diagnosis.  In those moments, I re-played a conversation with her.  About 8 months pregnant, walking through the mall as we shopped for our most anticipated arrival {you}, we talked about the what-ifs in life and MomMom reassured me God would only grace us with a “perfect” child because he knew just how hard her life has been.  With that conversation rewinding and replaying through my mind in that recovery room, I felt shame.  I felt like I was letting her down.  There was more back and forth and then Daddy confirmed it was ok to come visit, two at a time.  When he hung up I braced myself.  I felt fear rush through my body.  I didn’t want my Mom, your MomMom, yet I needed her.  I needed her to heal my wound with a band-aid and a kiss.  I needed my Mommy to take away the pain.  The fear.  The sadness. I needed to hear her voice, reassuring me that everything would be ok.  Within seconds she entered the room with blood-shot eyes and a smile.  I know now that she cried in the waiting room for me.  She cried for my heartache and my fears because she knew you would be just fine.  And while she cried as she looked at you, they were the happiest tears I have ever seen.  Her pride, her love and her joy for you…for us…it was contagious.  And with that I felt a bit of fear leave my body.  Visitors came and went…and then it was just us…our family.  The nurse allowed Daddy to stay longer than visiting hours permitted, knowing the news of your expected diagnosis.  Knowing I probably needed him.  And I did.  While I don’t recall any of our conversation, I will never forget his actions.  I will never forget his instant love for you.

It radiated through him and took over his soul; poured through his entire body and I could see it in his eyes.  You were his baby girl and he loved you and cared for you with every ounce of his being.  

As your birthday ended, I remember pressing your naked body against my bare chest in the dark hours of the night.  Hearing monitors beeping in the hall and babies crying from other rooms, I held you tight.  I studied your face with your flawless milky skin, your brilliant sky blue almond-shaped eyes, your button nose and heart-shaped pinkest of pink lips.

That image of you will live in my mind forever.  I will never forget holding you during those hours.  I will never forget those moments with you as we entered the early hours of my very first Mother’s Day.  I clutched you with every ounce of my being.  Tears rolling down my face and onto yours, I cried for you.  I cried for the you that I wanted you to be.  The “perfect” baby I needed and wanted.  And while I loved you, I was struggling with accepting you.  I wanted so badly to pick up the phone to call my friends.  I needed people by my side, yet couldn’t bare the thought of speaking those words…Down syndrome.  There was no doubt I wanted people to love you and accept you…but how could I expect people to accept you when I couldn’t accept the diagnosis that is part of you?

Unfortunately, the feelings of despair, helplessness and sadness remained through most of our stay at the hospital.  The moments that we were alone were special but some of our visitors walked into the room, quiet, not making eye contact.  Instead of congratulations, I heard “how are you?”  And while they may have truly just been asking how I felt, I read into it.  Just as people ask “how are you doing” when you lose an uncle, spouse or child…to me, it seemed as if people were walking into a funeral instead of coming to visit a new baby.  And in those moments, I lost it.  While I don’t remember my exact demands, I know my yelling cleared the room.  I know that my sadness hit a point of no return and I needed people surrounding me to congratulate me and love you.  I needed for everything to be ok.  I needed for you to be perfect, just like everyone expected you to be.  The irony was while I saw that extra chromosome, most convinced me it couldn’t be.  Friends and family members convinced me you didn’t have Down syndrome.  Most family members looked at those characteristics the doctors pointed out and found those same characteristics in themselves. 

While I didn’t want to envision people with Down syndrome that I have met or encountered in my life, I did.  While I didn’t want to put you in that “box”, I did.  And while I envisioned those people, visitors continued to assure me there was no way you had Down syndrome.  I am ashamed to admit that it felt good to hear “she doesn’t look like she has Down’s” or “she’s too pretty to have Down syndrome”…because what does that mean?  Kayla doesn't look like she has Down syndrome.  And neither do JJ, Nella, Victoria, Grace, River, Charlotte, Natalie, Brendan, Matt, or my many other friends.  They all look exactly the way they were meant to look...like their Moms and Dads, brothers and sisters and cousins.  And yes, while they do possess characteristics that resemble each other, they all look much more like their family than each other...than a "box" labeled Down syndrome.

We didn’t receive the official diagnosis for three weeks.  That night as I was trying to process the news, I remember standing in the shower sobbing.  I remember the water hitting my back as tears fell down upon my feet.  Weak and helpless, I leaned my body against the cold tile wall.  I slowly slumped until I reached the shower floor.  I allowed myself that time to cry.  I allowed myself to release the pain, the loss that I was feeling.  That fear of will you walk, talk, have friends, go to prom, drive, get married, have a career…those fears filled my mind and tears filled my eyes, ache filled my heart.  The shower became that place for me…that place of safety where I could cry and release my anger and my sadness.

All of those moments of fear…the moment that Daddy was delivered the news that you “weren’t perfect”…the moment that family members came in to visit you in the hospital with tears and fear in their eyes…and those moments when I tried to wish away Down syndrome…they were all because of the unknown.  None of us understood.  None of us could even imagine the amazingly beautiful, intelligent, kind and loving five-year-old little girl that you are today.  None of us imagined your abilities in those moments of fear.  In those moments I saw disabilities.  I saw differences.

While I loved you and photographed every bit of you...every face, every outfit, everyday…I lived with fear.  I lived with the what-ifs and the whens?  What if this happens and when will this happen?  And as you hit milestones those fears started to slowly fade.  One day while sharing my fears about your future with a friend, clarity hit me like a ton of bricks…that clarity is this…no mom knows who their child will grow up to be.  No mom knows when their child will walk or talk.  No mom knows if their child will go to prom or college or get married…and as moms, we can just hope for a bright future as we set our children up for success.  Since that day, since that moment, I have looked forward.  I have hoped forward.  I have worked and pushed and fought for you.  I have loved you fully for who you are.  And while I have moments and even days of worry, I know those worries are the same worries that every Mommy has.

If only everyone could have seen you then as you are today...we all would have seen you just as you are, just as you were meant to be… perfect.

For you are more loving than any five year old I know.  You are kind, caring, have impeccable manners, love unconditionally and live fully.  You are beyond perfection.  Your joy is infectious…your laughter contagious and your desire to learn is admirable.  While we have been on this journey together, I promise you that I have learned more from you in these past five years than you will ever from me.  Together, we have been an inseparable team…a force.  We have been breaking down stereotypes, discouraging the use of hateful words…living fully and loving unconditionally each and everyday.

I am changed.  I am better.  Because of you.  Each moment and each day that passes is better than the one before…and while some days may not be easy, each day is filled with life and love and laughter.  Each day that is filled with time spent with you is the greatest gift I could wish for.  I know that time is passing fast but I am trying to hang on…trying to enjoy each moment of this sweet ride.  This roller coaster ride of life of ups and downs and twists and turns is just that…a ride.  We’re hanging on when we are filled with fear and letting go when we are brave.  There have been many moments when I clutched that safety bar until my knuckles turned white…moments of fear when I wanted to apply the breaks…but just when I think I can’t take it any longer, I think of you…I look at you…and I smile…and each moment of pain, bit of fear, worry of milestones, and thought of “special needs” disappears.  And while those darker days are what make today brighter…they seem so far in the past.  I no longer think of Down syndrome on a daily basis.  I no longer think of “special needs”.  I think of you.  Yes…Down syndrome is a part of you…but that extra magical chromosome that makes you who you are, I no longer fear that chromosome.  I am proud of that chromosome and I am proud of you.

Five years has brought love, acceptance, courage and new friends into our lives.  No matter where we go, people know you…they know you by name.  You enter restaurants and are greeted with a loud, cheerful, “KAYLA”!  Some don’t know my name…but they know you.  In Rehoboth Beach where we do the Boardwalk Buddy Walk, vendors around town…like Ryan’s Surf Shop and the Christmas Shop welcome you with hugs and love {and usually a little gift}.  The staff at the Cheesecake Factory know and love you and are excited every time we eat there.  People have changed their majors to Special Education because of you.  People have stopped using the R-word because of you.  People have become more understanding and accepting because of you…and I am one of those people.  While you may not be who I thought you would be, you have turned me into the person I am supposed to be.  Thank you, Kayla, for all that you bring into my life.

You bring opportunities that I never imagined possible the first time I held you in my arms.  Life-long friendships have been made because of you.  Hearts melt with every smile and opinions change with every “hi, I’m Kayla…what’s your name?” {in your cutest voice}.

Those that met you with fear are now believers.  They are filled with love and hope for your future.  Those that did not understand Down syndrome now understand.  We all understand that while you have Down syndrome, it does not define who you are or who you will grow up to be. 

While some of our first moments together have faded, the guilt of not accepting you fully from the beginning is real and powerful.  I feel it from the core of my soul.  For as long as I remember those moments, for as long as I breathe, I promise you this…

I will never treat you different, expect less of you or stop pushing you to try harder. I will never allow anyone to disrespect you. 

I will always encourage you, respect you, be your biggest fan, your advocate and your supporter.  I will always hope for a brighter, more accepting tomorrow.  But above all, I will always love you for who you are...my beautiful, amazing, intelligent, fun-loving daughter with designer genes.  And you are rockin’ those genes. 

Happy 5th Birthday, Kayla!  Our five-year journey has been filled with the most incredible memories…

some of the most amazing moments of my life and I look forward to each and every moment in our future.  You are exactly who you were meant to be and I have no doubt you will make the most incredible impact in the lives of many.  Shine bright, little star.  Shine bright.

You will always be my perfect princess.

Love,

Mommy