A Mother's Love.

A mother's love.  Something we take for granted.  As a parent, we treasure moments with our children.  First  smiles, first words, first dates........  Here is a very sad Mother's Day story.  But a story of love and courage.

This is what being a mother is all about.

Courageous cancer patient, 32, who lived for her baby with Down syndrome passes away on Mother’s Day 

Jorie Rogers of Ladue, Mo., was thought to be infertile when she became pregnant with son Tristan. The family celebrated the boy’s first birthday in March.

BY SASHA GOLDSTEIN / NEW YORK DAILY NEWS

SUNDAY, MAY 12, 2013, 7:46 PM

On Wednesday, Jorie said on Facebook that she had been given one to two weeks to live.

Jorie Rogers just wanted to live long enough to celebrate her son’s first birthday.

She got her wish, but the mother who wasn’t supposed to be a mother, the mother who wanted only the best for her miracle baby with Down syndrome, lost her battle with cancer on Sunday, her second and final Mother’s Day.

After the birthday party, Jorie said she wanted Tristan to know how hard she fought to be with him.

"It's very special because not only are we celebrating my son's first year and everything that he had to go through to get here, but it's the one birthday that I'll get with him," Rogers said in March when she held a carnival-themed party for her son, Tristan. "And we get to celebrate the one year that we had together."

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Jorie Rogers was believed to be infertile after her radiation treatments but, after marrying high school sweetheart George Rogers, discovered she was pregnant.

She had stopped treatment in March after doctors told the Ladue, Mo., mother that her paraganglioma, a rare form of cancer that caused dozens of tumors in her body, had advanced to a point of no return.

KSDK

The charity 3 Little Birds 4 Life made the birthday party come true. The Illinois-based nonprofit’s founder has vowed to continue helping the family “in any way possible.”

“They’ve given me one to two weeks left,” Rogers wrote on her Facebook page on Wednesday. “I guess if anyone wants to drop by for a visit sometime now would be the time to do it. I also realize that death is just too (scary) for some people to face in person and if that’s you, that’s ok too.”

Rogers’ story is both heartbreaking and heartwarming — a life lived to the fullest but one also cut short.

KSDK

Jorie Rogers took to Facebook on Wednesday to ask people to make their final visits with her.

The 32-year-old’s radiation treatments were supposed to leave her infertile. But after marrying her high school sweetheart, George Rogers, Jorie found out that she was pregnant. After their baby was born, the couple learned that Tristan had Down syndrome.

KSDK

Dad George holds Tristan as Jorie and the family enjoy the birthday party.

Plagued by medical bills, the Rogers called upon Illinois-based nonprofit 3 Little Birds 4 Life, an organization that grants people with cancer a wish. Jorie’s was for little Tristan to have a first birthday to remember, a carnival with popcorn machines, snow cones, clowns, jugglers and a bounce house.

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Tristan with dad George Rogers.

Her wish — and Tristan’s — came true, and during a stretch of dreary late March weather, the skies cleared for the big day, leaving the 70 guests basking without jackets in the Midwestern sunshine.

"I want him to be able to look back on videos and pictures from today and hear the stories about today and for him to know how much his mom loved him,” Jorie then told KSDK-TV. “And for him to know how hard his mom fought to be here for him."

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Reflecting on the birthday party’s significance, Jorie offered, “I want (Tristan) to be able to look back on videos and pictures from today ... and for him to know how much his mom loved him.”

Less than two months later, cancer claimed Jorie’s life. On Mother’s Day, no less.

Ashley Swip, 3 Little Birds 4 Life’s president and founder, said Jorie had been suffering the last few weeks. Jorie’s husband, George, called Swip on Sunday morning and broke her the news.

ABBIE RUDOLPH/ABBIETAKESPICTURES.COM

Burdened with medical bills, Jorie Rogers called upon a charity that grants cancer patients one wish in order to provide her son a carnival-themed first birthday in March. It would be the only birthday she’d be able to spend with Tristan.

“Jorie was really special, and today’s been really bittersweet,” Swip said. “I’m so glad we were able to meet her and her family. And we will continue to help the family in any way possible.”

Jorie was a member of a cancer support group on Facebook. The group’s leader, Tisa Perra, remembered Jorie on Sunday.

“Today, the world lost a valiant and courageous Pheo Trooper,” Perra wrote. “Jorie Wilson Rogers, was a loving mom, wife, sister, daughter and friend. She fiercely loved her son Tristan like a lioness. Her fighting spirit was an inspiration to many. She lived her life fully despite disease and suffering. May she rest in peace. May she be free from suffering.”

Be gentle.

Meaningful employment for those with disabilities?

My son is not old enough for a full time job.  He is still a full time student.  But a question that I am sure must nag all parents who have a child with a disability is how will my child support themselves when they are older?  We all also want to enjoy our career, so how do I make sure he has a career that he actually enjoys and feels like a productive member of society?  He is an interesting article I found this morning.

Finding meaningful employment a challenge for those with developmental disabilities

By Shaun Hittle

April 29, 2013

Ryan Banning looks through one of his vending machines at the Lawrence Airport. Banning has operated his own vending machine business, Ryan's Vending Services, for more than a decade. Banning has Down syndrome, a condition that can limit employment options.

Lawrence man Ryan Banning is in every sense of the word an entrepreneur. For more than a decade, Banning, 36, has operated his own business, Ryan’s Vending Service, managing a dozen or so vending machines in Lawrence.

He’s always looking to expand, he said as he loaded the soda and snack machines at the Lawrence Municipal Airport recently.

And the bottom line for Ryan, who has Down syndrome, is that he enjoys the work and turns a profit.

“He’s earning, he's paying taxes," said Martha, his mother, who helped conceive of the business idea when Ryan finished high school. "It's been a really good fit for him."

'School to the couch'

Ryan needs a little help with his small business. A job coach drives him to pick up supplies at Sam's Club and to several local locations, including Visiting Nurses Association and a Kansas University fraternity. Ryan’s father, Bob, helps obtain the vending machines and supplies, and runs the financial side of the business.

While Ryan has found work that he enjoys, he's the exception for those with developmental disabilities, said Judith Gross, a research associate with the Kansas University’s Beach Center, which advocates for those with disabilities.

“They graduate from school to the couch,” missing out on socialization and a general sense of self-worth, Gross said. “Work is an important part of everyone’s life.”

And it's the type of work that makes a big difference, according to Rocky Nichols, executive director of the Disability Rights Center of Kansas.

While many with developmental disabilities find sub-minimum wage work in very structured workshop settings, that shouldn't be the goal, Nichols said. The focus should be on employment in a typical job setting where those with developmental disabilities work alongside those without disabilities.

But finding jobs, and employers willing to work with those with developmental disabilities, isn't easy.

According to a 2011 report from the National Association of Councils on Developmental Disabilities, only 14 percent of adults with a developmental disability are employed in the competitive workforce.

Overland Park woman Tracey Dickey knows the struggles firsthand. Her son, Cole, a student at Blue Valley Northwest, has one year left in school, and she’s been fighting for the past several years to find Cole a job when when he graduates.

“It’s scary,” she said. “He has one year left, and then what? It keeps me up at night.”

Tracey and her son have explored a variety of options, such as supported employment programs, but such programs have waiting lists. And her son has limitations, such as not being able to work a full shift.

“The job market is tough,” she said. “And he’s competing with people who probably can pull an eight-hour shift.”

FEAT

Gross and the Beach Center launched Family Employment Awareness Training, or FEAT, in 2010 to help families like Cole’s navigate the complex social service of job coaches, supported employment programs and other benefit services. At trainings for those with disabilities, Gross invites those such as Ryan and his family to speak to other families facing hurdles.

The biggest hurdle, Gross said, often is convincing families that those with a developmental disability can and should work in a meaningful job.

There will be struggles, and it takes a dedicated support system. But Martha Banning said the work is well worth it for Ryan and his whole family. “It’s so important to his quality of life,” she said.

Martha’s advice to other families is to keep fighting, find work that your child enjoys and connect with other local families facing similar barriers.

Ryan, meanwhile, has become accustomed to the perks of operating his own business. He likes to finish his 20 to 30 hours of work early in the week if he can and cut out by Thursday, enjoying a long weekend.

While he performs all the day-to-day work of the business, his goal is to eventually hire employees so he can focus on overseeing the operation.

“Someday, I want to be the boss,” he says.

As only the boss can do, he’s quick to offer guests a soda from his machine.

“It’s on me,” he says.

Be gentle.

Don't use the word, it's just mean! End the use of the r-word NOW!

Be gentle.

National Down Syndrome Registry. Research and progress

National Down Syndrome Patient Registry

What is the National Down Syndrome Patient Registry?

The NIH-supported National Down Syndrome Patient Registry will allow people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe, confidential, online database. Users will be able to create and edit their customizable online profiles, share their profiles with other Registry users, and set reminders for medical care and other appointments and events. The Registry will also provide access to general information about Down syndrome, as well as de-identified statistical data based on user responses to survey questions.

When will the National Down Syndrome Patient Registry be available?

Currently, the anticipated launch date for the Registry is July 2013.

Who can access the Registry?

Those with Down syndrome and their families will need to provide their consent for the Registry before they can create their password-protected profiles. If a user gives permission to be contacted, then clinicians and researchers who are authorized will contact these individuals to see if they are interested in participating in research studies. The Registry will comply with all regulations and laws governing privacy, personally identifiable information, and health data.

Why do we need a National Down Syndrome Patient Registry?

Creating a national registry was a primary recommendation of the 2007 NIH Down Syndrome Research Plan, which helped set goals and objectives for the Down syndrome research field. The development of the national registry was also supported by the Down Syndrome Consortium, a public-private partnership established in 2011 to further the exchange of information on Down syndrome research and to implement and update the Research Plan.

http://downsyndrome.nih.gov/registry/Pages/default.aspx

Be gentle.

Breaking barriers. It takes just one.

Today in the baseball world, one brave man is celebrated.  That man, Jackie Robinson, broke the color barrier and became the first black man to play in major league baseball.  An amazingly brave man, or just a man out to play the game he loved, Jackie Robinson is a hero in my mind.  How the world would be a different place today without him.

Apr 15, 1947:

Jackie Robinson breaks major league color barrier

On April 15, 1947, Jackie Robinson becomes the first African-American in the major leagues when he plays his first game with the Brooklyn Dodgers.

Jack Roosevelt Robinson was born into a family of sharecroppers on January 31, 1919, in Cairo, Georgia. He attended UCLA, where he became the first athlete to letter in four varsity sports: baseball, basketball, football and track. He served in the U.S. Army from 1942 to 1944 and was honorably discharged after facing insubordination charges for refusing to move to the back of a segregated bus.

After leaving the military, Robinson played shortstop for the Kansas City Monarchs in the Negro League. In 1945, he was recruited by Dodgers president and general manager Branch Rickey, who was determined to end the unwritten segregation rule in the majors. In 1946, Robinson joined the Dodgers’ farm team, the Montreal Royals, and went on to lead the league in batting. On April 15, 1947, 28-year-old Jackie Robinson made his Major League Baseball debut with the Dodgers, against the Boston Braves, in front of more than 25,000 spectators at Ebbets Field in Brooklyn, New York. Robinson played first base and went zero for three at the plate.

During his first season in the majors, Robinson encountered racism from opposing teams and fans, as well as some of his own teammates. However, the abuse didn’t affect his performance on the baseball field. Robinson played in 151 games, hit .297, stole more bases than anyone else in the National League and was awarded the first-ever Rookie of the Year title. In 1949, Robinson, who had switched to playing second base, was named the National League’s Most Valuable Player. The next year he became the Dodgers’ highest paid player, earning a salary of $35,000. In 1955, Robinson helped the Dodgers defeat the New York Yankees to win the World Series. He retired from baseball after playing his last game on October 10, 1956, with a career batting average of .311, 1,518 hits and 137 home runs.

After leaving baseball, Robinson worked as a business executive and continued his involvement in civil rights causes. On October 24, 1972, he died at age 53 from heart problems and complications related to diabetes. Robinson became the first African-American inducted into the Baseball Hall of Fame in 1962, his first year of eligibility. In 1997, on the 50th anniversary of his historic first game in the majors, Robinson’s uniform number--42--was retired by Major League Baseball.

As a parent of a child with special needs, I would love to see our children accepted into society the way Jackie Robinson finally accepted Jackie Robinson.  It was a LONG HARD road for Jackie and those that supported Jackie.  I guess this road is the road taken by us parents of a child with a special need, since our children need to be part of today;s world and a active participant in the society in which they live.

Jackie Robinson, I salute you.

Be gentle.