Tuesday, September 30, 2008

Prom King with Down syndrome goes to college.....

I just have to share this link from an article on CNN Health.

Prom King with Down syndrome goes to college..........

I think one of the best lines in the article was this....

"She credits the teachers who were "out-of-the-box thinkers" for helping her son in school."

This is what I believe is so very important for all of our children [especially the ones with an extra chromosome] to have teachers who believe in their fullest potential and help the learn and achieve success, in the classroom and out.

Emma Sage currently has an amazing team.....she is in a co-teaching classroom with a regular education teacher and a special education teacher. Both teachers are amazing human beings, who have been blessed to have the gift for teaching. My hopes are that, as she goes through the grades in school, she will have teachers like Mrs. Pupa and Ms. Weiss who are "out-of-the-box thinkers" and will provide her with the tools to succeed....to reach higher.....to never give up.....and to continue through life with a love of learning.

Monday, September 29, 2008

Life on line.....

Gregg Thompson is a 1972 graduate of Paris High School, former sports writer for The Paris News and currently director of corporate communications for Chick-Fil-A in Atlanta, Ga.

Gregg Thompson, *Contributor* Published August 4, 2008

*All I ever really needed to know, I learned from Johnny Stallings.*

You can go to the finest schools and get any advanced degree they offer. Or you can read all of the business and self-improvement books you want. But for a Ph.D in true wisdom, take a look at the life of Johnny Stallings.

You may have never heard of Johnny. He had Down Syndrome. When he was born, 46 years ago in Alabama, the doctors said he wouldn't live even a year or two because of a severe heart defect. Other well-meaning doctors advised his parents to put him in an institution. "In a year," they said, "you'll forget you ever had him."

But fortunately for all of us, Gene and Ruth Ann Stallings didn't take their advice. They chose to treat Johnny as a vital part of their family.

And we are all the better for it.

As his father advanced his football coaching career - first at Alabama, then to Texas A&M, the Dallas Cowboys, Arizona Cardinals and finally to a national championship in 1992 at Alabama - Johnny was an integral part of the team. To Johnny, the most important person was the trainer.

Trainers take care of the players," he once said. "You can't win without trainers."

To the day he died, Johnny Stallings wore a massive, diamond-encrusted National Championship ring on his frail fingers, which were tinged a grayish blue from the lack of oxygen caused by his heart condition.

Johnny was front and center in that National Championship team photo. In fact, he was a part of every team his father coached, including the storied Dallas Cowboys. The players drew inspiration from him. When Johnny turned 40 years old, for example, his birthday party was
attended by a Who's Who of former NFL stars.

Johnny had some accomplishments of his own. He was featured with his father on a popular national United Way TV commercial, has a playground named for him at the RISE center in Tuscaloosa, had the athletic training facility at Alabama named for him, and won a "Change the World" award from Abilene Christian University.

But perhaps the most important thing that Johnny Stallings accomplished is this: he taught us that it doesn't matter what awards you win, or what worldly accomplishments you achieve, it is how you live your life that matters most.

So what can we learn from Johnny Stallings?

** Every life matters.*

The life of Johnny Stallings teaches us that God can use anyone, no matter how insignificant in society's eyes, to make an impact on others. Johnny had none of the things that you and I take for granted, but Johnny touched countless lives in ways none of us can even begin to imagine. Our materialistic, success-driven culture doesn't really know what to do with people like Johnny. Society certainly didn't know what to do with Johnny when he was born 46 years ago. But God did.

** See the good in everyone. "Be my friend."*
When Johnny got to know you, you became his "friend." And he never forgot you. Despite being mentally disabled, Johnny never forgot a name or a face. Johnny literally saw no evil in people. Johnny had more friends in his short lifetime than any of us will ever enjoy.

** Walk openly, simply and humbly with God.*

The Bible tells us, "And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God." That describes the way Johnny lived. He could barely read or write, but Johnny Stallings prayed the sweetest prayers you ever heard. He didn't necessarily know the fine points of theology, but you could tell that he knew God. He walked with God, openly, simply and humbly. And everybody knew it, whether they acowledged that God or not.

** Love unconditionally.*

In Johnny's world, you didn't keep score or attach strings to love. He loved unconditionally, all of the time.

** Smile. Laugh. Hug.*
The last time I saw Johnny, we brought him a T-shirt from Dreamland Barbecue in Tuscaloosa, one of his favorite places to eat. Johnny hugged us. He patted us. He smiled all of the time. Johnny was one of these people who always made everyone feel better just for having been
around him. Who among us can say that about ourselves?

** Treasure every moment*.

Johnny, of course, was supposed to be put away in an institution. Doctors told them Johnny wouldn't make it to age 4, and when he did, they then said he wouldn't live past 11 because of heart and lung issues common to people with Down Syndrome. Then we always heard that Johnny wouldn't live past 16. And on and on. So with Johnny, you treasured every moment.

** Little victories are the ones that matter the most.*

Everyone focuses on the championships, but with Johnny, you celebrated all of the little victories. Then, after a while, you realized that those are the ones that really matter the most.

**Trust God because He really does know best.*

Despite being frail and disabled, Johnny Stallings wore a National Championship ring. Every member of that 1992 Alabama team will tell you of Johnny's impact on that team. Johnny Stallings literally changed the world and made everybody he met a better person - if only for that moment.

Gene Stallings, a star football player, championship coach and tough enough to be one of Bear Bryant's legendary Junction Boys, probably used to dream of a son who would be an impact player, who would change the world, make a difference and someday maybe - just maybe - wear a National Championship ring.

"I prayed to God that He would change Johnny, but He changed me," Coach Stallings once said in a speech. He added that if God offered him the choice of going back and having a "perfect" son without a disability or having Johnny, "I'd take Johnny every time."

Friday, September 26, 2008

Do you ever get the feeling that fate is ever present in your life?

I do......

as things present themselves to me, it seems as at the most appropriate time. [when I truly need a message]

I believe fate has been at hand orchestrating Emma Sage's upcoming surgery. I've been a bit of a nervous wreck, wildly thinking of how to get everything in its place, and it all just feel into place.

Her surgeon had called and said he had scheduled 'October 1st' as the day of her surgery and admittance [she has to stay overnight due to her ongoing blood issues and how severe her sleep apnea is].........and as I go to look at the calendar, I realize that fate was placing its hand on this event.

I had originally worked on having Sam and Brooke [little ones I watch] to be watched in the morning because I had an IEP meeting at Emma Sage's school. I had chosen that date because Charlie [the little guy I watch on Wednesday's and Friday's] was scheduled to come to me on that Thursday and Friday, because his Momma was going to a conference. So my day was clear to be free to be with Emma Sage.

Rick happened to take vacation [which I did not know at the time of the surgeons call] from the 1st to the 7th [as he is visiting with college roommates in Pittsburgh area that weekend] and he will be here to stay overnight with Emma Sage.

So.........fate laid her hand on this Mommas heart and allowed this very nervous time for me, to not be soooooo nerve wracking [well, I'm nervous about the surgery, but not worrying about the care of my little charges]

then I get the following note in my inbox this afternoon......and it spoke directly to my heart on this day of remembering the loss of my Mother.

This is from the Daily OM, one of my most favorite daily reading sources.

When you read it [I recommend it] you will see how fate is speaking to me on this day filled with sadness and memories....but also of hope, happiness and joy, in the process of moving forward from such a difficult loss.

September 26, 2008
Becoming Whole Again
The Process of Grieving
When we experience any kind of devastating loss, whether it is the loss of a loved one, a dream, or a relationship, feelings may arise within us that are overwhelming or difficult to cope with. This sense of grief can also come up when we are separated from anyone or anything we have welcomed into our lives. And while it may feel like we are caught up in a never-ending spiral of sadness and emptiness, it is important to remember that the grief we are feeling is not a permanent state of being. Rather, grief is part of the process of letting go that in many ways can be a gift, allowing us to go deeper within ourselves to rediscover the light amidst the seeming darkness.

The emotions that accompany any kind of loss can be intense and varied. A sense of shock or denial is often the first reaction, to be replaced by anger. Sometimes this anger can be directed at your loved one for “abandoning” you; at other times you may feel outrage toward the universe for what you are enduring. And while there are stages of grief that people go through – moving from denial to anger to bargaining to depression to acceptance – the cycles of grief often move in spirals, sometimes circling forward and then back again. You may even experience moments of strength, faith, and laughter in between. While these emotions seem to come and go sporadically, it is important to feel them, accept them, and allow them to flow. With time, patience, and compassion, you will eventually find your center again.

As we move through our grief, we may find ourselves reluctant to release our pain, fearing we are letting go of who or what we have lost. We may even regard our movement toward healing as an act of disloyalty or giving up. Know that while the hurt may fade, the essence of what you had and who you loved will have already transformed you and forever stay with you. If anything, once you are ready for the pain of your loss to subside, their memories can then live more fully within you. Remember, that healing is a part of the spiraling cycles of grief, and that in letting yourself feel restored again, you are surrendering to a natural movement that is part of the dance of life.


The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.

U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.

NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. “With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths”, states Hoppe.

NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives—Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.

Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.

NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.

NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.

About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.

About NDSC
The National Down Syndrome Congress is America’s oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world’s largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.

Two years ago.....

Two years ago today, my beautiful and dear Mother left her earthly bounds.

At times it seems like it was just yesterday, and other times it seems like it was an eternity ago that we were traveling the journey of loosing someone so precious and dear.

My Mother was such a beautiful soul. She was they type of person who always put others before her......she would literally take the clothes off her back or give the last dollar in her purse to those in need.

She cared deeply about her family and friends......she made everyone feel special, like they were the most important person in the world.

I still go to pick up the phone to call her....not as often as I had done right after her passing, but I still do, and then I stop and pause and cry, because I know that I can't just talk to her. But I do talk to her often at her grave.

Emma Sage does the same thing. I hear her chatting to Nana from time to time. It is so precious to see, my little girl with her hands clasped in prayer......looking towards the heavens talking to her Nana.

I know Emma Sage understands that Nana has left her earthly bounds, as I was reminded of her knowledge just the other day. Emma Sage asked me "Where is my PopPop?" and I told her that he was in Heaven with GOD. She let out a little shriek of pain and started to cry and said "I don't want my PopPop to be dead like Nana".......

Oh bless her little heart. I think that the pain of knowing that PopPop is also really gone sank into her heart and soul at that moment.

So, today, on the anniversary of my beloved Mother's passing, I have been sitting and reflecting. The weather today here is gray....and a light, steady rain. It is truly beautiful, as I always think of my Mother when it rains, because growing up, every time it rained, my Mother would tell me that it reminded her of home [Ireland] so for me....the rain was a beautiful thing because it made my Mother smile and remember her home and family.

Ar dheis go raibh a anam ~ May she rest in Peace.

I love you Mom.

On a wing and a prayer...
I did this series of photographs last year, just before my Mothers anniversary. In these two, I had asked Emma Sage to talk to Nana in Heaven.....and this was the image that I captured.

after a few moments of prayer, this is the next image that I got.....my sweet little girl, breaking down in tears at the realization that her Nana was in Heaven.
Crying angel.....

Dance, dance, dance.......

First day of class.....

Dance is the only art of which we ourselves are the stuff of which it is made. ~Ted Shawn, Time, 25 July 1955

My little girl is back to dance class......she is taking Jazz ~ Hip-Hop this year. She picked the class, as she told me she "loves 'hip-hop' and Jazz is cool."

She has taken ballet and tap [a combined class] since she was three......she loved the tap, but ballet was beginning to get a little too disciplined for her linking. She is loving this class. She gets excited because she is dancing like they dance in High School Musical and Camp Rock!!!!

One adorable thing happened after the first class, a little girl who is also in first grade at Emma Sage's school came out of class all excited to tell her Mother that Emma Sage was a friend from school. There are not too many children at this school [which is a phenomenal dancing school, but a little distance from our house, and most of the children that go to this school live in different townships and school districts from us]

So stay tuned to hear how class is progressing and when her recital will be [and what cute outfit they get to wear this year]

Friday, September 19, 2008

October is National Down syndrome Awareness Month

Get It Down; 31 for 21

and Emma Sage and I will be blogging each day in celebration!!!

Thursday, September 18, 2008

"There is no hope of joy except in human relations."~ Antoine de Sainte-Exupery

and what could be more joyful ~ than having a friend who is also your cousin!

Tuesday, September 16, 2008

Riding Lesson

I know these video are not too exciting, and I had to shoot them from far away.....and in one you can hear the doves cooooing at me, and the other, when I shake a bit and you hear that loud bang, it was a goat trying to buck me! lol!!!

But, I find them to be so delightful, because I stand off in a distance and watch my little girl participate ~ on her own, in her group riding lessons........The first one she is just walking and following the instructions of her teacher {Ms. Bonnie, whom we adore} and the second one I caught a little bit of her trotting and then stopping on command.....I just love how she pats her horse to say 'Thank you!!!'

So enjoy a bit of our Monday afternoons.....

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Photo Sharing - Video Sharing - Photo Printing - Photo Books

Friday, September 12, 2008

'If we could see the miracle of a single flower clearly, our whole life would change' ~Buddha

Thursday, September 11, 2008

Seven years ago..........September 11, 2001

Seven years ago.............our world shook. It wasn't because of a natural disaster, like the Tsunami or Hurricane Katrina, but it was a far worse disaster ~ because it was created by human hatred

Life for our family is good [we are truly blessed] and the morning of September 11, 2001 found us in our typical daily routine.........up early, breakfast, drive the children to school and then Emma Sage and I would come home to a quite morning.

Rick was in Montreal, Canada, for school [we had been up to see him a week earlier and spent a glorious vacation touring Montreal, driving home Labor Day weekend.........because of the terror attacks Rick was not able to return home to us for days.]

I dropped Katrina and Greta off at Woodglen and then drove down the valley to drop Otto off at school at Valley View. On the way to Valley View I noticed a plane flying very low..........lower than I have ever seen a commercial flight on the flight pattern we see from our area heading to Newark Airport. I notice planes all the time because of Ricks career in aviation. I shrugged it off as maybe I was just off my bearings that morning.

It was truly a glorious September day,,,,,,,,,,,,,the sky was bright blue, the air was dry and warm, the landscape was draped in light that just made it look like a Rembrandt painting.

Emma Sage and I got home and went inside to hear the phone ringing. I answered the phone and it was my sister Patti, telling me to turn on the news as a small plane had crashed into the World Trade Center. I had a brief moment of fear..............I had worked for years in the area and at one point in my life, had dinner at least once a week at Windows of the World,,,,,,,,,,,,,and then another sinking fear, I was supposed to be at a financial conference put on by Risk/Waters magazine this morning, but I had turned the job down because I just couldn't leave Emma Sage.

I watched the TV,,,,,talking with Patti on the phone. I said to her that I couldn't believe a small plane could have done such damage. I started to cry...........holding Emma Sage in my arms, pacing back and forth, kissing her sweet head and talking with Patti.........
and then BAMM!!!!

In horror my sister and I [on the phone with each other] watched the second plane crash into the second tower. I knew as I watched the plane that it was a big commercial plane and at that exact moment I knew this was a calculated attack.

Patti and I were both crying,,,,,trying to come to terms with what we just saw. All along I clutched this precious child of mine to my chest. Not wanting to let go of her, afraid of what was going on.

This was familiar territory to me..........buildings that were an important part of my life. I watched these buildings being built,,,,,my father driving us to the city from time to time to marvel at the progress of the towers going up,up,up,,,up. A fellow skydiver friend of mine jumped off the Trade Center. I dined at Windows of the World weekly for a few years, I traveled through the towers everyday to the American Express tower in the Financial Trade Center and the building I worked in for Merrill Lynch was the last building to fall on that fateful day. As I watched the TV screen, I was paralyzed by fear and overcome by a sadness that was, to this day, so utterly profound.

I tried to call Rick and was finally able to get through to him in Canada to let him know what was happening in the states.

I then I felt so alone. Watching the horror unfold............talking to my sister and crying, and holding my precious little girl.

As time has moved forward, I realize that there is a reason for everything [sometimes many reasons] and I know that Emma Sage is a blessing in multiple ways..........but one incredible feeling I will never release is the feeling that I have knowing that her extra chromosome [her Down syndrome] is a major reason I was not at the World Trade Center on September 11, 2001.

Her birth made Rick and I realize that my being home with the children [but especially this child],,,,giving up much in the way of income,,,,meant that she would have only family to care for her..........to work with her,,,to help her develop to her fullest potential, and it kept me home on that fateful Tuesday in September.

Today I remember a dear friend, David E. Rivers,Editor of Risk/Waters Magazine.......You were truly an amazing man, editor, writer, friend, husband and father. David, you are missed dearly and will never be forgotten.

Memorial park ~ 9/11

This is the memorial at our township park.....these are beams from one of the World Trade Center buildings.

3,715 flags.......

Otto helped place these flags on the field on Wednesday evening with his Boy Scout troop.......he said that each flag he placed, he had to hold back tears......

Writen by a child........may we always remember.

Sunday, September 07, 2008

Romp For Research

On Sunday, September 14, 2008, Emma Sage and her family [and friends] will be RoMPing in New York City at the Down syndrome Research and Treatment Foundations ~ Romp for Research fund raiser.

We would love for you to join us.....

at the world-famous Asphalt Green, 555 East 90th Street (York Avenue between 90th and 92nd Streets) in Manhattan at 2:30 on Sunday, September 14th.

There will be ~ music, games, arts and crafts, food, drink, goody bags and prizes for people of all ages, compliments of Ringling Bros. and Barnum & Bailey.

If you can't join us in person, Emma Sage [and her family] would be honored if you could help her reach her fund raising goal of $500.00

You can donate at her team page here: Romping with Emma Sage

Holding hands for a little while, hearts forever

My Name is Sarah

Emma Sage has added a link to her blog list.

I urge all of you to go visit My name is Sarah and read her first blog entry.

Sarah left a comment for Emma Sage and I, under her Day of Firsts.....and shared with us the link to her blog.

When I clicked over, my heart just leaped out of my chest, as I read the accounts and saw the photographs of Sarah's high school graduation.

Here my baby girl was just beginning her public school journey, and there was Sarah finishing up her public school journey.

My most sincere wish in this world ~ is to watch Emma Sage make a similar blog entry in 12 years, as she uploads the pictures of her graduation and tells of her high school journey!!!

To be inspired, come click on this link and go meet, My name is Sarah!!!!

Saturday, September 06, 2008

My Sweet Baby

My Sweet Baby who makes my heart sing and brings me such great joy!!! She is growing up into such a lovely young girl.

Down syndrome

What is Down syndrome?

I know that those of you who visit our blog, know that Emma Sage has Down syndrome.

It is part of who she is, but it does not define her, just like one aspect of our being does not define us.

Patricia E. Bauer has a wonderful piece answering questions that seem to be popping up about Down syndrome because of the introduction of the Republican V.P. Candidate, Sarah Palin and her 5 month old son Trig Paxson Van Palin.

I think it is a great piece for all to read, as believe it or not, we still sometimes get questions like the one's highlighted in her piece.

My biggest hope out of this new focus on Down syndrome is that the general population of the United States finds out the truths about Trisomy 21 [ie. Down syndrome] and many of the myths that have perpetuated through the years are finally put to rest.

Please go here...........Questions, we get Questions!

Friday, September 05, 2008

This afternoon, I was waiting for the bus and as it pulled up, I noticed that Emma Sage was not in the front seat as she had been all week [I had suggested that would be a good placement so the driver could watch her closely and she could chat with the driver]

I look and she is in the third row and smiling and waving excitedly at me.

The bus driver opens the door and must have seen my expression, because she goes to me....

"I hope you don't mind, but Alexandra asked if Emma Sage could sit with her, as they are in the same class and Emma Sage said she would love too!"

I smile a huge smile and say "No, I don't mind at all....THANK YOU!!!"

and the other cute thing is that after the kids get off the bus [at our stop there is from 5 to 7 on average that get off] all week the kids have been waving and yelling "Good-bye Emma!"

So, the end of the first 'full' week [minus Monday for Labor Day] it has been wonderful.

Her Friday folder had all her work with nice notes and the little note for the week was "Emma Sage is just delightful and LOVES to participate in class!" [[That's my girl!!!]]

So......I will breathe a sigh of relief and pray that the next 10 months go as well.

I see my Greta in Piper in this clip.....Greta was always holding Emma Sage, and she was always the little Mother/Keeper.

Is this not the cutest thing ever.

A classic child moment!!!!

Thursday, September 04, 2008


Our aspirations are our possibilities. ~ Robert Browning

I took this of Greta on our roadtrip to bring Katrina back to college and to search out colleges that Greta might like to attend next year. This is her favorite choice to date....and a place where I know she will excel and reach her dreams.