Today we has a special visitor......

Emma Sage's teacher, Mrs. Pupa came to visit.

She brought with her the butterfly house, with two Chrysalis still waiting for the butterfly to emerge.....and it looks like one might just might emerge this weekend [how cool is that]. Mrs. Pupa asked Emma Sage if she would like to babysit the butterfly house [which she happily agreed] and she also brought with her the following..........








Emma Sage has been so excited to read all of her 'Get Well, We Miss You' cards.......How precious is this?

Thank you Mrs. Pupa's and Ms. Weiss's Class.....Emma Sage Misses you all also!!!

31 for 21

Princeton Down Syndrome Conference

November 23, 2008

Register for the Second Annual Princeton Down Syndrome Conference sponsored by Princeton Disability Awareness (PDA) and held on Sunday, November 23, 2008. The conference is open for all families with children with Down Syndrome. The conference will have speakers, workshops and exhibits on various topics regarding education, including Early Intervention, Inclusion, Transition and Building an IEP. During the conference, each child will be paired with a Princeton student volunteer and taken to a carnival. A nursery is available for children under the age of 2. Brunch and dinner will be served. Register by October 23

For more information contact Jenni Newbury at pda@princeton.edu.

We attended this event last year.......and I was part of the group of Mothers from 'Gifts' to make a presentation during the opening session.

This was one of our most favorite of all events that we have attended that focused on Down syndrome.

If you live close enough by, I highly recommend for you to attend.

The day is truly magical........and so inspiring to see all the Princeton students volunteering their time to make the day a day full of fun for our children.

and Jenni Newbury is one of Katrina's good friends from Camp PALS......she is one amazing young lady!!!!!

31 for 21

Emma Sage and Nini [Katrina]


Growing up, there have been many people who have had a strong impact on my life. I have had lots of role models and people to look up too, but the one person who has had the biggest impact on my life and who has helped make me the person I am today is my seven year old sister, Emma Sage.

The life lessons I have learned while growing up with her as my sister have helped me; choose a career path, made me more accepting of others, and opened up my eyes to a whole new world. I was never once upset at the fact that my sister had Down syndrome, but I was upset that she was going to grow up in a world that is not always accepting of differences or kind to people who have disabilities. If people would take the time to get to know someone who has a disability they would find out that they are some of the greatest people they will ever meet.

My sister has opened up so many doors for me, and I find myself learning something new from her everyday. I have met some of my greatest friends because of her, and have had some of my fondest memories because of her. Every summer I am a counselor at Camp PALS, which is a camp for teenagers with Down syndrome. I can honestly say that this is not only the highlight of my summer, but also the highlight of my year. Although it is only a weeklong camp, the memories, friendships and lessons I take away are ones that will stay with me forever. Being around all the campers changes your perception on life, you see how they live each day to its fullest, laughing and being care free and you realize that this is how we should all live our lives. I don’t think my sister will ever realize the impact she has had on my life, but I know I would not be the person I am today without her.

Thank you Emma Sage, you are such a wonderful and inspiring little sister.

I love you soooooooo much!!!

31 for 21

This child's smile says it all........she just radiates love.

I took this yesterday afternoon, and yes, that kitten has clothes on.....they did a video clip of 'The Weather Cat' [which I will post about soon, as I just returned home from the hospital and don't have the time to do so tonight]

Today at the hospital, she greeted everyone with this smile and a big 'Hello'.......this child is truly a 'Good Will Ambassador' as she has to make a connection with everyone she meets.

The nurses in pre-op adored her....she was drawing them pictures, telling them stories, and had everyone coming to visit her.

I put on a gown and was able to escort her into the Operating Room......I actually had to carry her in, to make it easier for the switch from the pre-op bed to the OR bed. At this point, she became a bit scared, but even in her trembling voice, she had to say 'Hello' to the OR staff she had not met yet......she gave me the sweetest hug and kiss as we placed the mask on her face. Watching your child go under is a very scary thing......a pure leap of Faith.

I held my tears and fears back till I was well out of the room [and she was already deep in sleep].....and we waited.

The surgery went well, and her recovery has been slow and steady and when I left her this evening [Daddy is with her for the night] she was really improving, so tonight I may get some sleep [as last night I tossed and turned all night long]

Thank you all for your well wishes.....It means the world to us.

and my thought tonight about Down syndrome is this.......I consider the facet of Down syndrome in my life, to be one of the great blessings.....and watching Emma Sage, I realize that Down syndrome is just a small facet of who she is, but it is a facet that brings unique aspects to her being....and incredible insight to mine.

This child radiates pure joy and love......even when she was in pain, she would pause and 'Thank' those that were assisting her. She teaches me everyday.....like today, that even when we are uncomfortable, or scared, we move forward with Grace and acknowledge those around us.

She has taught me that being human, is an amazing thing.

31 for 21

Gifts........

I believe Emma Sage is my greatest gift.......a gift from GOD, just as her siblings, but a gift that has given me so much ~ and will continue to bestow me.

Perspective, joy, love, insight, understanding, compassion, patience, strength and made me more human....to name a few. [this month I will be exploring the many gifts this child has brought with her and how they have impacted our life.

Tomorrow, Emma Sage is going in for her first surgery [a tonsillectomy and adnoidectomy] and I'm a bit of a wreck......because this child is just too precious to me, and the thought of handing her over to others is a bit unsettling. I know that she is in good hands and that the greatest of hands 'GODS' are in control, but still, this Mommas heart has been racing [as you can see, I'm still up and I need to be up in less than six hours. My Mother-in-law sensed my nervousness this afternoon [and knowing how much I've been missing my own Mother of late] offered to come with me. Rick will be able to come later in the day and then he is going to be the one who spends tomorrow night with her at the hospital.

Which leads me to this Gift.......



Today, as Emma Sage got off the bus, her bus driver ~ Mrs. Dalmas, handed her this gift and gave her a big hug and told her that she would be thinking about her tomorrow. As the bus pulled away, there was my little girl blowing kisses.....

This child touches so many people..........what an incredible gift that is, to be loved by others.

But, I believe the greatest Gift that has come to me from the birth of Emma Sage is my opportunity to be part of this project.



Gifts...............if you have not read the book yet, I encourage you to do so. You will find a treasure within the covers and be forever touched by the Gifts that are shared inside.

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.

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."

Straight out of the Camera Saturday

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.

FOR IMMEDIATE RELEASE

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 Dé go raibh a anam ~ May she rest in Peace.

I love you Mom.


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.

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

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]

October is National Down syndrome Awareness Month

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

"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!

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

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

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.





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.

My Voice.....

Sharing two Op-Ed pieces........

Trig's Breakthrough......


What Trig can teach America........

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

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!!!!

My Sweet Baby

Make video montages at www.OneTrueMedia.com

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!

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!!!!

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.

Brilliant

A Day of Firsts.........

A day of Firsts……….

Today, Emma Sage put on her pink backpack, kissed me on the cheek and told me “OK, let’s go”



Blowing Momma a kisss........



We drove the 2.5 miles to her school and we parked around back. On the way in she was greeted by many teachers who have known her since she was snuggled deeply within my womb. There were lots of hugs, hellos and high-fives. This child is such a little social butterfly. I have no doubt that she will be a politician when she grows up….or an ambassador, because it is just a fluid, natural part of her personality to interact with everyone she meets.



Hugging Mrs. Gross, her gym teacher and a family friend.


[This is Ms. Weiss, who is phenomenal and I know has great expectations for Emma Sage]


She got right in line with all the other children who had been driven to school [her school is K through 4th] and turned and waved ‘good-bye’ to me. At that point I spotted her teachers in the gym and waved to them and turned and walked away…..and you know what started to stream down my face. Tears……tears of joy.



At 10:22 am [while I was out for a run, alone…….can you imagine that, me, alone in the morning without any little ones at my feet] and the message when like this:
“Hello Mrs. Hintz, this is Ms. Weiss. I just wanted to give you a call, as the children are down at Music and let you know that Emma Sage is having a fantastic first day. She is following directions, interacting and all smiles. She is such a joy and we are going to have a great year with her in our class.”

Ah………more tears.



At 1:36 pm when the bus pulled up at the bus stop……….a smiling bus driver [I love the children’s bus driver, she is just such a wonderful and happy woman] told me that she was chatting away to her on the way home and was so excited to be riding the bus.




Emma Sage and Abbie [such dear friends]


Too cute, they both wanted me to take a picture of their backpacks!!!


This is the smile she had on all day......she was just so excited!!!!





Taking papers out of her bag....


Our big First grader and one of our new 7th graders [Abbie is in 7th grade with Otto]

Emma Sage was non-stop chatting about her day. She sits next to “Ava, you know her?” she asks as she is telling me.

“No," I said, "is she nice?” .

“Oh yes, she has red hair and curls” she adds [obviously the red haired trait makes for a nice girl! Lol!!!]

She continues to tell about her day. She went to music and she sang me the song she learned. She LOVES music.

She ate lunch in the cafeteria and “Lily has a Hannah Montana lunch box that is shaped like a guitar”

So I ask her “Do you want a lunch box like that?”

“No, she likes her pink bag like Greta!” she tells me. [whew...good, I hate all that marketing/gimicky stuff....but want to make sure she 'fits in'....if that is what she wants to do. Thank goodness she could care less]

She loved the bus ride and is so excited to go again tomorrow.

Later in the night, she was quite disappointed that she did not have homework like Greta and Otto had……so I had to go pull our homeschooling bin out and give her homework!!! Don’t you just love it, a kid who wants homework!

A day of Firsts…….

What a glorious day!

An artists gift....

How amazing this video is....created by an eighth-grade girl who is wiser than I ever could hope to be.

What a blessing, to be able to see the gifts hidden within each human being.........we are all a work of art and may our canvas of life be unlimited.

My Godmother, Bernadette, sent me this beautiful link and I just had to share.

Of coarse you know I had tears streaming down my face when I watched it, as the sweet memories of my beautiful Mother came flooding back to me whilst watching.

My father-in-law, Otto, had always said he wished he could have traveled to Ireland with my Mother and his wife, Lorraine, to see Ireland through the eyes of my Mother and her family.

We are planning on doing that next summer......the whole family are going to travel to Ireland for the World Down syndrome Congress in Dublin.

Enjoy this beautiful piece titled 'An Irish Blessing'........may we all be blessed with this wisdom.

Irish Blessing Link

The Mountain sat upon the Plain by Emily Dickinson

The Mountain sat upon the Plain
In his tremendous Chair --
His observation omnifold,
His inquest, everywhere --

The Seasons played around his knees
Like Children round a sire --
Grandfather of the Days is He
Of Dawn, the Ancestor --

Blessings.......

My life is filled with so many blessings.

Here are the four greatest blessings in my life.




Amen
means ah so
and so be it
that's the truth
and I see it.

Amen to my children....I love you all so dearly.

A Wish......

I have this primitive star pillow on my couch....it has little rusty bells and stitched in the middle is the word 'Believe'

Emma Sage loves this pillow....she has since she was a baby.

Tonight, after we walked home from my in-laws [I still can't believe my father-in-law has passed on] Emma Sage came in and sat on the couch and waited for me to tidy up before we headed upstairs to tackle her latest collection of books from the library [two huge bags full today].

I'm in the bathroom and hear her chatting away...first singing a song from the Jona's brothers. Then she is jingling the star pillow and I hear her say

"Star-light, star-bright...first star I see tonight...I wish I may, I wish I might, make a wish tonight"

then she proceeds to say......"Ummmmmm....let me think"

Then she goes "I wish I had hair like Hannah Montana.......pants like Hannah Montana....shoes like Hannah Montana...Thank you!!!"

I started cracking up.

Little does she know, I can take her to Targets or Walmart and her little wish could be full-filled 10xs over...she could even get Hannah Montana undies!!!!!!

This child just fills my heart with such joy.

The Power of Words.

Ruhe in Frieden

We have been away.........to take Katrina back to college, visit Mickey Mouse and rest a bit with our feet in the ocean. [This was the first real vacation I have had in a long time]

When you travel, you expect to return home to the way things have always been.

Sadly, this trip we returned home to the loss of our beloved PopPop. I adored my father-in-law and my heart is so heavy at this loss. Emma Sage is having a hard time dealing with this loss, as she just does not fully understand why she saw him when she left and that he is not back at home with Grammy.

Otto Hintz was an amazing man. He was the 'salt of the earth' and I am honored that my son is named after him.

Ruhe in Friden ~ Rest in Peace

"If a child is to keep alive his inborn sense of wonder, he needs the companionship of at least one adult who can share it, rediscovering with him the joy, excitement and mystery of the world we live in."~Rachel Carson


...............and I was blessed to be that adult in Emma Sage's life this past week, where I watched her marval at the magic and wonder of the Magic Kingdom.

All the names I know from nurse:
Gardener's garters, Shepherd's purse,
Bachelor's buttons, Lady's smock,
And the Lady Hollyhock.
Fairy places, fairy things,
Fairy woods where the wild bee wings,
Tiny trees for tiny dames--
These must all be fairy names!
Tiny woods below whose boughs
Shady fairies weave a house;
Tiny tree-tops, rose or thyme,
Where the braver fairies climb!
Fair are grown-up people's trees,
But the fairest woods are these;
Where, if I were not so tall,
I should live for good and all.

~ The Flowers
From Child's Garden of Verses

and if you look closely, you will see that Miss Emma Sage has flowers in her hair. She thinks this is the greatest thing to do...to put flowers in your hair!!!

I agree!!! Look and see....

Life in Perspective......

We are all healthy and fine. I am sorry if my post about going fish'n scared anyone......but two events happened last week that made me put up the 'Gone Fish'n' sign and really savor the moments of summer with the children [and turning off the computer for a bit]

One of the events was the sudden death of an online friends son. Vicki Forman is a wonderful Mother and an enlightening writer.......and a friend to all. She wrote a piece that I adore called 'The Mother at the Swings' and in a tribute to sweet Evan.........we are all placing flowers on our own children's swings to celebrate his life.

Evan Kamida (July 30, 2000 – July 24, 2008)

Ar dheis Dé go raibh a anam ~ Rest in Peace Sweet Boy




There is a tribute to Evan being gathered at Flickr.com of 'Flowers on the Swing'

Evan loved to Swing..........and what a glorious thing to love.

Evan's death was unexpected..........the other event this week was one that was expected and sadly planned for.

One of my sisters friends was pregnant with a little boy who was diagnosed in-utero with anencephaly........after being counseled to terminate, this little boys parents knew that ~ that was not their choice. The pregnancy continued......and this little boy grew in his Mother's womb knowing how much he was loved, adored and wanted. My sister [being a labor and delivery nurse] was asked to be present for his birth......also present was his whole extended family.

Sweet little Will [named for God's Will] entered out word surrounded in love. He was held and cherished for the hour that he lived. His family [all of his family, aunts, uncles, grandparents, cousins and siblings and parents] were there to let him know that God's Will was done, but in the spirit of love and happiness.

We can not decide destiny......all we can do is embrace our lives, embrace those around us in love and friendship and savor the moments that each day brings to us.

Day by Day......

Gone Fish'n

We've gone Fish'n

Actually, we are doing a little fishing and a lot of swimming.

I've been working on some major home improvement projects and the children are busy with activities and the barefoot and care-free summer days of childhood.

So, while I've neglected our blog, I have been snapping pictures and writing down my thoughts.

I hope to be back posting updates soon........

but after two events this week that make you really stop and reflect on the preciousness of life.....it might be a little while till we are back.

So savor the moments of each day........tell those you love, that you love them, every single chance you get.

Take time to smell the flowers and pick the berries.........and marvel in all the creations of this world........especially fireflies, as they truly are incredible summer time delights.

Peace and love, Tara Marie & Emma Sage and her very busy siblings.

The Power of a Mother's voice.....

Well, actually, the power of 63 Mother's voices.........

I had heard the accounts of this moment right after it happened from some of my friends who were able to attend the session at the NDSC Convention on 'Welcoming your new baby with Down syndrome'......and I got chills at the time.

Now you are able to read about Baby Grace and how the book [which Emma Sage and I are a part of] GIFTS ~ has touched lives....especially the unborn life of a sweet little girl named Grace.

Read Beverly Beckham's piece in The Boston Globe here......titled Learning Love from Baby Grace.

Sisters by chance.....

Lisa, Jan, Me, Nicole and Laura [Emma Sage's furture Mother-in-Law!]
This was taken in Boston at the NDSC annual convention.

These woman are some of my dearest friends.....and we met because of the blessing of Down syndrome in our life, and the incredible paradigm of the Internet.

All of these woman I met online before Emma Sage was even born. Nicole I met when I was 13 weeks pregnant with Emma Sage and we had our first soft marker for T21. I had asked a question on a pregnancy forum at ParentsPlace about 'Nuchual Translucency' and she provided answers and a warm welcome to come visit the Down syndrome parenting board there to meet the other parents and their children.

I lurked and visited often, as I knew in my heart of hearts that the little one I was carrying [our precious Emma Sage] would indeed be born with a little extra. [birth story click here].

I watched as Jan introduced herself and her little boy Nash and when the time came, I was on that board posting the joyful news that our little girl made it safely into our world [born unexpectely at home] and blessed with an extra chromosome. These were the woman [and a bunch more that were not in Boston, but always in my heart] that welcomed our little girl with such joy and warmth!!!

So here we are, Sisters by chance............

Mark your calendars for 2025.......

Puppy Love.....Emma Sage and her beau Ryan


Taking time to smell the flowers......as he courted her


What a little gentleman.......Ryan got down on his knees and in all seriousness, asked Emma Sage 'Will you Marry Me?"

and the answer is......... "YES"

So mark your calendars for 2025......as we figure this gives them both time to graduate high school, attend college or technical school.....and then settle down to Wedded Bliss!!!!!!

The future Mr and Mrs. Ryan Quinn........

"Hey........"

We arrived in Boston safely and only about a half hour longer than our estimated time of arrival because of some traffic. One thing I noticed was that people in Conneticut do not know how to drive. The traffic had no rhyme or reason....it only took one or two brake lights to go on and the traffic came to a snarl before it would release and start flowing again. Very, very frustrating.

We are staying at the Boston Westin Waterfront, a beautiful hotel overlooking the Boston harbor.

After we had checked in, Otto, Emma Sage and I had to run down to our car to get somethings. On the way back up to our room the funniest thing happened.

We were waiting for the elevator and there were a few guests also waiting to go up to their rooms.

As we entered the elevator behind a group of people, I asked Emma Sage to push button number 9.....which she gladly did. After she pushed 9, a teenager on the elevator [who also happened to be sporting an extra chromosome] put his hand up to give Emma Sage a 'high-five'......as she goes to give him a 'high-five' she looks at him and exclaims quite loudly....

"Hey, you have Down syndrome JUST like me"

We all chuckled in the elevator as it was just too darn cute. The other teenagers/young adults with this boy were laughing at how sweet this encounter was.

and of coarse....I start to tear up, as the emotions of attending this conference come gushing foreward.

If you have never been to a National Down syndrome convention, I highly recommend it. There is such an aura and incredible feeling being around so many people [of all ages] with T21.......a very powerful experience.

and 'hey'......my little girl recognized someone who had something in common with her!!!!

Want a Good Laugh?!?

We are in Boston, to attend the National Down syndrome Congress's Convention........and Emma Sage's clothes are packed in her bag, back home on our bed.....YES, we left Emma Sage's clothes at home.

So, tomorrow, after I register early, I have to venture into downtown Boston and find a store to buy her something to wear for the next three days.

So......Did that make you laugh????? I cried at first when we realized our mistake...but now I'm laughing!!!

Oh, and can I tell you how amazing it is to see so many people with T21....I'm in heaven!

Happy 4th of July

This was taken two years ago......but I forgot my camera today [and it was too bad, because little Miss was in her element, as she loves parties and is the Belle of the Ball]



4th of July is my most favorite of days, as I cherish the fact that we live in a country that values freedom and human rights.

I hope you all had a wonderful day celebrating freedom.