I’m beginning to suspect that my daughter Sophie no longer believes in Santa Claus.
Sophie is 11 (or as she’ll quickly correct you, 11 and a half) and preoccupied with the trappings of tween life – One Direction, cheerleading, mascara, boys. She recently announced that purple is no longer her favorite; now she’s into blue, a “grown-up color,” she tells me.
In many ways, though, my little girl is still just that. A little girl. Sophie sucks her thumb and carries around an old, stuffed Piglet. I had to get her Velcro-fastened tennis shoes for cheer, since she can’t tie her shoes. And for years, she’s dictated her Santa letter to me each December, afraid, she explains, that he’ll never be able to decipher her handwriting. She’s right, her handwriting is terrible, despite years of therapy.
Sophie has Down syndrome.
My husband, Ray, and I didn’t know Sophie had it before she was born; she was the first person with Down syndrome I’d ever met, this tiny, jaundiced baby with squinty eyes and a bad heart. In those early days, after talking to nurses and friends, I pieced together a few “facts,” sort of a playbook on D.S. Nothing particularly useful, as it turned out, but all I could handle at the time.
Sophie would be cheerful and loving, and maybe a little stubborn. She would never drive a car. She would probably be the Homecoming Queen in high school. She would live with us her whole life.
by Bill Kirkos CNN from WBST 42: (CNN) -
While most children wait and hope Santa visits them at home on Christmas Eve, this year dozens of Denver-area children went directly to the big man's Arctic home turf.
The children, many of whom are being treated for serious illnesses or are victims of abuse or homelessness, were flown to the "North Pole" this holiday season on a Fantasy Flight.
The Fantasy Flight program began in 1992 at Washington's Dulles International Airport, and has since spread to Los Angeles and other airports around the country. Though the destination may be fantasy, the flight is not. Airline employees and retirees volunteer their time, and United Airlines donates the jets.
Children are selected from the Make-A-Wish-Foundation, children's hospitals and various youth social service establishments.
from My Fox 8 Piedmont News:
NEW YORK — Not a hippopotamus. Not his two front teeth. All Elliot Shirback wanted for Christmas this year was cards.
It was a wish heard around the country.
A houseful of cards poured in for the 25-year-old New York man who has Down syndrome, according to his mother’s Facebook pages.
More than 1,800 have arrived, coming from nearly every state, CNN affiliate YNN reported.
“I’m, like, blessed right now,” Shirback told the network.
It all started because of his mother, Anne Daggett.
Shirback was sad one day. She wanted to make him feel better so she asked what he wanted for Christmas.
“A hundred Christmas cards,” he said, according to his mother’s Facebook post. “I said it might be a little too late for that and people have much things on the plate,” his mother wrote, “If anyone can send him a card He would love it!!!!!”
She included the address. Friends and family put the word out on Facebook and it exploded from there.
“I thought maybe he might get 35 cards at best. Next thing I know, it’s like a flurry and gone viral,” Daggett told YNN.
Their home is now covered in cards. One reads: “Elliot, you are loved.”
“It makes me happy,” he said. “It’s like a gift, like somebody loves and cares about you.”
Starry Night, a benefit concert presented by USU’s Alpha Tau Omega fraternity, will return to campus for its second year on Friday.
Featuring Christmas music in a variety of musical styles, the proceeds from the event will be donated to Racing for Orphans with Down Syndrome, a local nonprofit organization which aims to raise money to aid in the adoption of children who have Down syndrome.
“We hope this can be something people can come to to take a break from the hustle and bustle and spending of the holiday season to come out, listen to some good music and really remember what Christmas is all about,” said Joe Hill, the vice president of Alpha Tau Omega and the event chairman for Starry Night.
Last year’s concert, which Hill said raised $300 in donations for the Sub For Santa program despite not being a sanctioned fundraising event, lead Hill to the idea of using the concert as a philanthropic opportunity.
Tickets for the event, which requires semiformal attire for entry, are $7. Hill said Alpha Tau Omega hopes to raise more than $2,000 for RODS through the event, which will begin at 7 p.m. in USU’s Performance Hall.
by Holly Richards from Newark Advocate.com:
His eyes bulging, taking in hundreds of colorful ornaments adorning a bright Christmas tree, Sebastian Longstreth extends his tiny fingers to a glittering red bulb.
“None of our ornaments are on there — they’re all his,” said Shannon Longstreth, Sebastian’s mother.
For the past month, 11-month-old Sebastian has been receiving hundreds of Christmas cards and ornaments from around the country and world.
“His Facebook page has 7,829 ‘likes,’ and everybody was asking what to get him for Christmas,” Longstreth said. “I thought we should give him his own tree, and ask people to make, buy or take ornaments from their trees to send. There are a lot of handmade ones, and we have close to 400 now. We’ve even started hanging them on the banister.”
Longstreth said local people are giving, and mailboxes are filled to the brim daily with gifts from every state. International packages have been received from England, Ireland, Australia and other countries.
This is another example of support the Longstreth family has received, even before Sebastian was born. On Jan. 23, Shannon and her husband, Brandon Longstreth, welcomed their third child. She was five months pregnant with Sebastian when a blood test revealed he had Down syndrome. “I wasn’t shocked about the Down syndrome diagnosis, but it was the heart issues that bothered me,” Longstreth previously said. “That was heartbreaking. He has an atrioventricular canal defect, but he’s had surgery, and it looks great. He’s a fighter. I don’t treat him like he’s ‘special.’ I treat him like a baby.”
After Longstreth uploaded photos to Facebook shortly after Sebastian was born, they quickly received 112 “likes.” She started the Sebastian’s Journey page on Facebook, which had 82 “likes” in 15 hours. Now, he’s up to almost 8,000 “likes,” from a mix of familiar faces and strangers. “The public’s been great, and I pay attention to people I receive messages from,” Longstreth said. “I try to recognize them and respond to them all. These people really support me, and one — Phillip McCloud — gave us a new refrigerator. Without social media, I’d be lost. It’s amazing to have someone out there who is concerned about us.”
Facebook also has given Longstreth her “guardian angels,” Dona “Mimi” Joseph and Kelly Treadway. They started out as strangers who happened to live nearby, and now there’s almost no one Longstreth feels closer to. Each followed Sebastian on Facebook and reached out to Longstreth, wanting to be involved in the child’s life.
After Joseph’s husband died in July, she questioned if she would find love again. A month later it came in the form of young Sebastian. Joseph and Treadway have become daily visitors who sit with him so Longstreth can tend to her family and herself, giving her respite from Sebastian’s around-the-clock care.
“It’s a different world,’ Joseph said. “He’s a godsend to us. He was meant to come into my life when he did.”
“We’re here to help with whatever they need,” Treadway said. “I feel like he’s my grandchild, too.”
Angela Smith, a home nursing caregiver with Maxim Healthcare, of Newark, is at the Longstreth home 40 hours each week to assist with Sebastian’s needs. She already has seen him make great strides and looks forward to many more.
“He’s a remarkable client, so strong and happy,” she said. “He has the potential to get better. Being here gives me a sense of purpose, and this family has become my family.”
As Sebastian rested comfortably on Joseph, Treadway and Smith helped Longstreth open mail and hang the ornaments that continue to pour in. They are floored by the response so far.
“I feel the love on this tree,” Longstreth said. “He really is Zanesville’s baby. He’s touched so many people.” hrichards@centralohio.com 740-450-6772 Twitter: @hmrtr
by Richard Smith from Mirror:Proud mum posted message on shop's Facebook saying Seb "charms the pants off everyone he meets and his little face is full of magic and mischief"Little Seb White is a good advert for positive attitudes. The four-year-old’s mum had noticed how rarely Down’s syndrome kids featured in fashion shoots. So she wrote to Marks & Spencer offering him as a model and to her delight the company said yes. Seb will star in the M&S Christmas magazine. Proud mum Caroline, 39, who contacted the firm on Facebook, said yesterday: “He shows being ‘different’ isn’t any less wonderful – or even different.” Mum-of-two Caroline added: “When Seb was born I vividly remember seeing lots of ads with hundreds of beautifully perfect kids in them and it just added to my sense of isolation. “Then in July when we were shopping for Seb’s school uniform it occurred to me again that all the ‘different’ children out there are just not represented.” Caroline, of Bath, Somerset, posted a message on M&S’s Facebook page saying: “Seb has striking, unusual features, charms the pants off everyone he meets and his little face is full of magic and mischief. So here’s the thing. He also happens to have Down’s syndrome. When he was born I was shocked to my core. "I knew nothing about the condition and what should have been the happiest day of my life turned out to be the worst. “I could never have imagined how excited and proud I would feel about him starting mainstream school in a couple of weeks. I wouldn’t swap him for the world.” Product manager Caroline and husband Simon, 36, manager at a toiletries company, received a message asking them to call the store giant. Seb – who started school last week – was invited to a photoshoot in London.An M&S spokesman said: “We always look for kids who have fun in front of the camera and Sebastian was a pleasure to work with. We are really looking forward to seeing Sebastian in our Christmas magazine.”
When a widowed friend died suddenly in March, leaving her 37-year-old son with Down syndrome alone in the world, Robin Lungo became his adoptive mom — a deed that nine months later has renewed her Christmas spirit and provided her a gift she can’t buy at the mall.
Despite living on a meager disability check and battling breast cancer, Lungo, 58, a widow herself and mother of a grown daughter, kept her promise to her late 71-year-old friend Mary and took her son William Marshall Jr. into her small Somerville apartment.
She has dug into her savings to keep up William’s routines, taking him to the movies once a month and to his weekly bowling league, and splurging on the popcorn he loves at both. But Christmas was proving to be a hardship because Lungo knew William cherished the holiday and was used to a bounty of gifts his mom would leave under their tree on Christmas and Little Christmas, an Irish celebration on Jan. 6 marking the Feast of the Epiphany.
“He believes in Santa. He can’t wait for him to come. He’s got his list on the refrigerator. After Thanksgiving, he was sitting in the chair, and he says to me, ‘He’s coming. Santa’s coming.’ Every time I say it, I get goose bumps,” she said. “William is used to a big Christmas.”
“Derr Sante Clus,” begins the list that William penciled on loose leaf paper in a 6-year-old’s syntax and proudly showed a reporter, itemizing the things he needs (a new hat, gloves) and wants (Disney DVDs, CDs of oldies music).
“My husband died Thanksgiving 18 years ago. It hasn’t been happy Christmases for me for a while,” said Lungo, who said having William in her life has brightened her holidays. “He will come over and just rub my face and give me a hug and a kiss. He’s very affectionate.”
So she dusted off her artificial tree and, for the first time in years, strung lights and hung decorations to make her home more festive for William. But still she fretted about finding the money to buy him gifts.
A friend, however, wrote a local Down syndrome support group seeking help in buying gifts for the man with the boyish spirit who still believes in St. Nick. The group’s founder, Melanie McLaughlin, whose daughter Gracie, 4, has Down syndrome, was so moved she reached out to her network of moms and collected three bags of donated gifts and $150.
“It’s a beautiful thing that she did. She’s honoring her friend by caring for her son, whom she’s known for a long time and clearly loves. It’s not easy. She’s living paycheck to paycheck,” McLaughlin said.
A grateful Lungo said the presents will make William so happy today and make her smile as she watches him open them.
“The whole spirit of giving and Christmas has come full circle for Robin,” said Lungo’s friend, Jackie Murray, 56. “She’s always been a giver and with William she has received the true joy of Christmas. His gift to her is the gift of love.”
And, explained Lungo, a renewed purpose in life.
“He gives me a reason to be here, too. I’m a three-time cancer survivor. I think that’s why I’m here. To take care of William. It’s kind of my job. I promised I would do it and I’m doing it. Right, William?”
