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EmmaSage



Emma ~ One who Heals Sage ~ One with Great Wisdom Emma Sage is our little girl that is blessed with a little extra ~~ chromosome that is ~~ on her 21st pair.



Updated: 2017-10-23T23:46:43.814-07:00

 



Rememberance.....

2014-09-11T07:18:08.377-07:00

Thirteen years ago..........September 11, 2001Thirteen years ago.............our world shook. It wasn't because of a natural disaster, like the Tsunami or Hurricane Katrina or Sandy, As it was a far worse disaster ~ because it was created by human hatredLife 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 quiet 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 School 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 a 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 the night before 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, close to my breasts, 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, and we were on the ground as his escape team. I dined at Windows of the World weekly for a few years, I traveled through the towers every day 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 after hours I 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, 200[...]



On her Twelfth Birthday.....

2013-05-08T19:59:12.070-07:00

This is the story of how Down syndrome entered into our lives,,,,,,,,presenting itself in the genetic make-up of our youngest child. We hope you Enjoy reading about our beginning of this journey........ The story of Emma SageEmma: One who healsSage: One with great wisdomAlexandra: See her birth story to find out the meaning of her third [unplanned] nameEven before her birth, Emma Sage has lived up to her name, by healing and teaching those around her the true meaning of life.Emma Sage is our fifth child. She was conceived one year to the day of our miscarriage. Before her conception I never fully understood the power of ones soul…….but the moment of her conception, I arose from a deep sleep, overcome by the most incredible sensation.….I sat up as I felt her soul enter into my body [I know you might question this experience, but it was the most profound moment of my life and one that has allowed me the greatest sense of peace.] I knew immediately that I was pregnant. I placed my hands on my lower belly and asked GOD for this baby to stay. It was a warm August night and the moon was full. I laid back down and watched the stars through the skylight thinking about what had just happened.About 10 days later I took a home pregnancy test and it was positive….I took three more just to be sure. I was very nervous because of our loss that I asked my midwife to check my HGH levels at around 4 weeks. The levels were high and my fears subsided a bit. It was around this time that I began having dreams. I kept dreaming of a little girl who looked just like a china-doll….so tiny and perfect. I had my first dream of having the baby on the side of the road…..Beginning my concern of missing labor and birthing [in my dreams it was everywhere]. My sister who is a L&D nurse would laugh at me when I would tell her of my dream and she brought me a cord clamp and told me to keep it with me. [As fate would have it, we needed to use that cord clamp!] At 8 weeks, we took a family vacation to Florida. While at Universal Studios, Rick, Katrina, Greta and I [Otto was at Disney World with my mother, sister and her family] we were sitting in NYC waiting for the Blues Brothers show…..when this powerful sensation came over me again. I was watching this beautiful little boy dancing around…he would come up to us and smile and then dance away back to his parents. After the show started I could not keep my eyes off of this little guy. I looked at Rick and told him that I thought that this little baby was going to be exactly like that little boy [that it would have Down syndrome]. Rick put his arm around me and said, “That would be just fine”. I told my sister about the incident that night at dinner and we both forgot about it.At my 13-week visit I was measuring big for dates, so my midwife asked if it was OK to do an ultrasound to rule out twins. Rick and I agreed [I was actually so nervous this pregnancy and wanted to take a ‘peek’ at little one]. The ultrasound was one of the worst experiences of my life….for the only reason being that the technician was cold and in the middle of the scan said “There is something wrong with this baby” and left it at that, even though I was asking her millions of questions. While I was wiping off the goop, she called my midwife and said, “I think we have a problem”…..Rick and I went right up to my midwifes office. There, my midwife Peggy told me that the technician had measured the baby’s neck and the measurement was abnormal. The baby’s nuchal translucency was 3.6mm and anything over 3.5mm was a soft marker for Down syndrome. Later that night Rick and I sat outside in the barn on his motorcycle and talked. I asked him at one point “what are we going to do?” and he looked at me and said “we are having a baby, we are not GOD, nor should we ever play GOD” [[man do I love this guy…..he is my best friend and he gives me such strength at times]] I was just so scared not knowing …….but this began[...]



Farm Kings

2013-01-03T20:28:42.775-08:00


"Mom, come quick!" Emma Sage shouts out to me from the other room.

My Mother's heart always pauses when I hear a cry out for me ~ unexpected and said with great urgency!.

I go quickly to see what she needs.

She is watching TV......with the biggest smile on her face.

"Look, Look" she continues pointing to the screen. "He has Down syndrome just like ME!!!"

I look towards the TV wondering what she is talking about.

All I see on the TV are these male Gods, with golden locks and muscles only a hard working man can develop.......picking corn.

Being of Farming Heritage.......I'm instantly in love.

I wait, and sure enough, one of these strapping young men is sporting an extra chromsome on his 21st pair. 

Farm Kings.

I had no clue. 

My little girl stumbled upon a show that I think this Momma who does not watch TV ~ might just find the time ~ to sit down and watch with her little girl.

Farm Kings?        Who Knew?



1 Comments

2012-12-21T10:05:13.614-08:00

A must see......

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31 for 21 -~ Day Seventeen

2012-10-17T12:11:47.683-07:00

“A character is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse.”  ― Arthur MillerToday is Arthur Miller’s birthday.   For nearly six decades of his life, Miller created characters that wrestled with power conflicts, personal and social responsibility, the repercussions of past actions, and the twin poles of guilt and hope.  I look at the above quote and I wonder about the personal struggles Arthur Miller, the man, had in his own life. You see, the Pulitzer Prize and multiple Tony Awards winner who always put into question "death and betrayal and injustice and how we are to account for this little life of ours." had a secret that he lived with from 1966 until his death in 2005.  Arthur Miller and his third wife,Inge Morath, had a son named Daniel.  Daniel was born with an extra chromosome. Daniel had Down syndrome.  He was born in November 1966 and at a week old, was placed in an institution and removed from Arthur Miller’s life. It has been noted that Inge wanted to keep the baby, but Miller was adamant that it had to be sent away. Daniel was institutionalized soon after his birth, spent his infancy at an institution in New York City, and the entire rest of his childhood at the Southbury Training School for retarded children in Connecticut. In an article in Vanity Fair, it is reported that Inge visited the boy regularly at Southbury, but his father never did, and eliminated him from his life entirely, never mentioning his existence in public nor in his autobiography Timebends.  Inge would visit her son often.  She never let him go.Despite the limitations of life in Southbury, Daniel grew up to be a very bright and charismatic young man.  Arthur Miller's decision was entirely common for people of his time and for society at large. Whereas, I had not the slightest hesitation ever about raising Emma Sage at home, my generation was very different in this regard from my parents' generation. Among the generation that grew up before World War II, it was normal to institutionalize developmentally disabled children, and in fact physicians often advised parents to do so. Arthur Miller, born in 1916, belonged to the generation which carried this mindset. Different axioms lead in a different direction, regardless of propriety. Anne de Gaulle, born in 1928 with Down syndrome, was the daughter of the young officer Charles de Gaulle and his wife Yvonne. Anne was never separated from her parents throughout her life, and her father always made time to spend with her. Famously chilly and formal in public, the General was reputed to be warmer and more outgoing with Anne. When she died at the family home of Colombey-les-Deux-Eglises, General de Gaulle said simply: "Maintenant, elle est comme les autres." [Now, she is like the others.] What produced these remarkable post-WWII changes in conventional social attitudes?   I don't understand how it took place in detail. But, like everything else associated with the "baby boom" generation, the clues must lie in the 1960s and 1970s, during which I spent my childhood and youth. Whilst the change has shifted to embrace our children with Down syndrome, the underlying fear of disability is still alive and well in our society.  Our children are out in the light……they are Living, Loving, Growing and Thriving and they are valued members of our families and communities. But there still lies darkness; as Eugenics is still ever present, especially in regards to the prenatal diagnosis of Trisomy 21/Down syndrome. Today we celebrate the birth of a man who wrote with conscience, clarity and compassion.  A man for whom it was not discovered until after his death held a powerful and tragic secret. “A character is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remors[...]



31 for 21 - Day Sixteen

2012-10-17T10:22:51.825-07:00




31 for 21 - Day Fifteen

2012-10-15T21:03:51.893-07:00

"One's Sister is a part of one's essential self, an eternal presence of one's heart and soul and memory."~Susan Cabill

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"Chance made us Sisters, hearts made us friends."~ Author Unknown

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"A sister is a little bit of childhood that can never be lost."~Marion C. Garretty

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"There's a special kind of freedom sisters enjoy. Freedom to share innermost thoughts, to ask a favor, to show their true feelings. The freedom to simply be themselves." ~Anonymous

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"Is solace anywhere more comforting than that in the arms of a sister"~Alice Walker

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Celebrating Sisters.  Emma Sage has been missing her Greta, so for today's 31 for 21, I thought I would post a moment in time of them sharing their special bond of  'Sisterhood'






31 for 21 ~ Day Fourteen

2012-10-15T20:34:18.843-07:00

21 Things you might or might not know about Emma Sage Get It Down~31 for 21 .....and a good way to learn a little bit more about our pixie.We knew, but we didn't know that Emma Sage had T21 during my pregnancy. I had premonitions and 'soft markers' and in my heart of hearts I knew.You are more than welcome to laugh about the 'premonitions' but they were actually right on and more accurate than the ultra sound scans.This was the first layer of preparation I had for embracing my daughters Down syndrome diagnosis.Emma Sage was born at home in the bath tub.No, it was not a planned home-birth, but again, this child has brought many pleasant surprises into our lives......and I hope that never changes.I was the first to say "Oh look, she does have Down syndrome"It took over 24 hours before anyone at the hospital confirmed my original diagnosis of T21....they all came and looked, but no one said anything. My sister and my Midwife both agreed with me that she had Down syndrome, but we did not have a doctor come and talk to us about the possibility for a day. That was fine by me, as my only focus was getting her to nurse.Emma Sage finally latched on and nursed almost 24 hours after her birth [even though she did latch on and nurse in the ambulance ride to the hospital. Emma Sage nursed until she was 3 years and 10 months old.Her favorite food is.........everything. This child loves to eat, from salad, to soup, to sushi, to pizza......you name it, and she will try it.Emma Sage loves to dance and has been taking dance lessons since she was threeHer first dance studio was our first experience with discrimination ~ her current dance studio is the epitome of inclusion and positive forward thinking.Emma Sage is now a 5th grader in middle school.  She has a locker and loves schoolShe is an awesome reader and excels at math [and this fact both delights me and surprises me]She plays the drums in her school band.  She tells me she is going to play in an all girls rock-n-roll band someday. When she gets tired she turns into a bear, Thank goodness she doesn’t get tired too oftenEmma Sage love to ride horses, her instructor told me that the easiest thing for her to do would be to limit her, but instead she took a leap of faith and this child trots and canters on her own.Emma Sage loves to model.  She has appeared in print media 14 times, including the Toys R Us big book.  When she was seven she was proposed to.  We told her she had to wait till she was 24 to get married [she never lets me forget that fact]Emma Sage is funny, witty and can be very sarcastic.  This is quite refreshing and at times annoying, as she loves to yank my chains.Emma Sage has always defied the statistics......she is her own unique person and we couldn’t imagine life without her.  [...]



31 for 21 - Day Thirteen

2012-10-15T19:44:57.278-07:00


" Think of me first as a person who hurts and loves and feels joy,”
--Dwight Core Sr.

My favorite child.

Dwight Core, Jr. the fifth child of the Core family and their first son.  This is a documentary that was made from home videos and current day filming that now resides in the Library of Congress.

The home movie, "Think of Me First as a Person," portrays the love a boy with Down syndrome shares with his four sisters, but also a heartache common to the era's disabled: leaving home for an institution.

I was born a few years after Dwight Core, Jr.  It breaks my heart to think of the society I was born into and how children with disabilities were encouraged to be placed into institutions.  We have come a long way in North America.

That is not so in other parts of our world.  I have dear friends who are working with those societies that place their children with disabilities into orphanages at birth and sadder yet, these children are destined to horrible institutions if they are not adopted by a certain age.  They are working tirelessly to change those society’s perceptions.  A daunting task, but one I know can change, as look at how far we have come as a society.

This is a must watch……..
Part One allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/YM1cPOzK7IA" width="420"> Part Two allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/OHUGQ_4SWQA" width="420">



31 for 21 - Day Twelve

2012-10-15T10:05:32.922-07:00


The Power of Siblings.



31 for 21 ~ Day Eleven

2012-10-11T21:16:20.510-07:00


'The StoreyMan' it is a must read, really it is.

You see, it is a story about David Hingsburger, who is a disabilities rights advocate and his  meeting a young man in London named Steven Storey and how he views disability [his to be exact] and other wonderful things.  The first thing that made me smile from ear to ear is the photograph of Steven, as he is holding a pint of beer.

Now I know you might think that is a funny thing to make me smile, but it is........because that was one of the weird things that crossed my mind when I was pregnant with Emma Sage [yes, pregnant] was the fact that I wondered if she would ever grow up to enjoy a glass of wine or a nice cold beer [or follow in her Momma's footsteps and have a passion for a Margarita once in a while]   For some strange reason, I always had this misconception that people with disabilities didn't drink. Don't ask me how that misconception crept into my mind, but it was there. The other big misconception I held was on the topic of S.E.X........yes, for some strange reason I'm a prude. Lol!!   Actually I'm not, far from it, but the thought of a healthy physical and emotional relationship was another topic that I really never thought about for Emma Sage given her diagnosis of Down syndrome.   Weird I know.  How uneducated and misinformed I had been.

People with Down syndrome are just that....people. They happen to have an extra chromosome on their 21st pair of chromosomes. This causes some common traits [phenotypes] amongst people with Down syndrome, but it is not all encompassing and each person with Down syndrome is as unique of a human being as any of us are.   They look and act more like their families than they would look or act like another non-family member with Down syndrome.

Each of us brings to this world our own special gifts........each of us has our own destiny to fulfill.......our own dreams to dream and achieve  ~~~ people with Down syndrome are no different than any of us in this regard……they tell jokes, they drink beer, they have relationships.

See how much I have learned in 11 short years!!!!!!





31 for 21 - Day Ten

2012-10-10T21:03:39.426-07:00

There was a wonderful article in the April 23, 2007 issue of People magazine titled “Finding my son at the Zoo” that touched me on so many levels.One line rang so true for me.“That awful night I wrestled with the idea of grief and realized it simply wasn’t my instinct.”The author, Thomas Fields-Meyer is talking about a moment in his life, just after receiving the diagnosis of Autism for his son Ezra, he and his wife, Rabbi Shawn Fields-Meyer were sitting at the therapist’s office when the counselor said to them…..“You need to mourn”“For whom?” I asked“For the child he didn’t turn out to be.”The author and father goes on to say….“I have never carried preconceived notions of what my children would become, and to this day, I have not wept over Ezra.”My heart leaped for JOYwhen I read this article, because Tom Fields-Meyer put into words exactly how I feel and exactly how I have experienced life since Emma Sage entered into it.I have always looked at people as individuals and I don’t think I have ever lumped a group or experience into a blanketed statement…..which brings me to one that I hear [read] often online in articles or groups related to Down syndrome. Even the famous poem 'Welcome to Holland' alludes to the fact that one will ‘always’ mourn the loss of the child you did not have [after having a child born with or developed a disability]. That it is a loss that “And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.”I cringe when I read  or hear people make a ‘blanket’ statement……“Everyone grieves at the diagnosis of T21” or “people who say they never grieved are in denial”I personally think that ‘blankets’ are great on beds, but should never be used as a statement to group an experience that is so unique and individual in one’s life journey.I do understand that some people [and that could be many, many people] grieve at the diagnosis of T21, and some take a long time to reach a point of acceptance,,,,and even some [as the poem states] carry that grief with them their whole life journey….and that is part of their journey.....but it is not everyone's journey. For me [and for the author Tom Fields-Meyer] my journey has been a spiritual one…..Emma Sage is exactly who she is supposed to be….and for that I celebrate. Yes, I work with her day in and day out…to help her develop all the skills she needs to live in our world, but that is not a form of grief or denial….it is what I believe all Mothers do. We nurture and care for our children, all of our children, helping them grow and develop into the best they possibly can be. The author writes about life with Ezra as a spiritual journey……my spiritual journey with Emma Sage began at her conception. I knew exactly the moment I conceived her ~ as I felt her soul enter into my body. One of the most powerful and profound experiences of my life….I remember telling my Mother a few days later about the experience and telling her about the incredible sense of peace I felt because this experience solidified my belief that our souls are eternal. At that point I did not even have a confirmed pregnancy test ~ I just knew in my heart of her existence because her soul was just so powerful that she was the one to tell me that she was on her way into our world.This spiritual journey is part of my daily life….this little soul just radiates….she teaches me daily about love and understanding…..she helps me see the miracles that surround us, a bird sailing through the sky, a tree toad croaking off in the distance….a wild flower – so tiny – so small – so perfect…..and at this moment right now in time…..nestled up next to me on the bed[...]



31 for 21 - Day Nine

2012-10-09T19:51:12.457-07:00

Camp PALS
Camp PALS West
PALS Tours

and this upcoming year,

Camp PALS Chicago


A flu bug has got a hold of this Momma, but for today's post, I wanted to start my discussion of a program that is beyond amazing.

My daughters met the founding directors of PALS the summer of 2004 when we were at the National Down syndrome Congress's conference in Minneapolis.

They immediately became friends.  Katrina was the first of my children to get involved in the original program that was PALS [Peer Assisted Learning Support] and became the national director of high school programs.

The next summer she began volunteering as a councilor at Camp PALS.

Two years later when she was old enough to volunteer, Greta became a counselor.

Each summer since they are back at Camp PALS volunteering [and it is the highlight of their year]

Katrina began counseling at PALS Tours the year the program began and now does both Camp PALS and PALS tours.

Greta boarded a plane this summer and headed out to California for the inaugural year of Camp PALS West [and had the time of her life]  So she now volunteers for both Camp PALS Original [East coast] and Camp PALS West.

and this past summer my Otto is now old enough to volunteer........

So I had three of my children at Camp PALS.

My heart swells with such  pride and joy.

Next year Emma Sage will be attending Camp PALS as a camper [we go each year to the dance and she gets to be an 'honorary camper' but not next year.....it is the real deal for her.

So please take a moment to watch this video [and when I am feeling better I will write more about Camp PALS, as it truly is an amazing entity [it is like it has a spirit all its own]

Peace and love,  Tara Marie [who is one sick gal]



allowfullscreen="allowfullscreen" frameborder="0" height="315" src="http://www.youtube.com/embed/hFMjgmz42zw" width="560"> P.S.watch for my Greta in this one.



31 for 21 - Day Eight

2012-10-08T19:43:51.572-07:00

Four years ago, on the first list serve I joined when I was pregnant with Emma Sage, a Mother posted a thread that touched my heart in many ways.I e-mailed the author of the post to first, say "Hello" and that I was so glad that she came out of 'just read' and posted to all of us on the list.Her words are very poignant and speak for so many in our community ~ A community of Mothers, Fathers, Family, Friends who love and care about someone that has Down syndrome.During this month, I have been sharing Emma Sage and her day-to-day adventures. I have also been sharing links that I have come across and news articles.....but I do believe that this post will be my most important post in sharing during Down syndrome Awareness Month [thanks to the permission of the author.......and my new friend, Mary Beth]As you read this post, know that even though some of our children have greater struggles than others, each and everyone of our children are our blessings and are loved dearly........and we are above all a community.Dear Friends,Although I go back many years as a member of this list, I have mostly been reading only for a long time. Like many others, my 18 year old son has autism as well as Down syndrome.As we enter the closing stages of "Down Syndrome Awareness Month", I wanted to take a moment to ask you to be aware of the entire community of those of us with Down syndrome or living with someone with DS.I know that there are families out there who have such seriously ill loved ones with DS who simply don't feel like celebrating much of anything right now. Those of us who have seen our loved ones though a life-threatening illness ourselves- can we take some time to just be with those families? And if our loved one with DS has never had such a crisis, all the more reason to see if there is some way you can show your gratitude- by reaching out that helping hand.Some of us have that family member with Down syndrome who is grown, or nearly so- and does not speak using words. True conversations will never be a reality. All the speech therapy in the world will not make it so. For these families it can be a stretch to want to join in with a charming list of accomplishments or funny anecdotes. For these families, celebrating DS awareness month means that some people care enough to learn the signs or communication methods that facilitate other ways to communicate.Some of us have a loved one with DS who "still" is not walking- or not using the toilet independently, or not able to eat be unhooked from a feeding tube, or eat what everyone else commonly eats. Some have a chronic and debilitating illness (such as diabetes or the effects of a stroke or other illness) that requires monitoring their health and well-being- 24/7. Down Syndrome Awareness month might mean taking time to slow down so that these loved ones can have their personal hygiene and/or dietary/and/or movement needs attended to with dignity and the extra time required.Some of us have a loved one with DS who is not able to leave the house due to agoraphobia or other anxieties, or perhaps has behaviors that cause injuries to self or others. I know that there are families on this list who have not been able to leave their loved one with DS even for a few hours - for over 20 years. Some of that is due to lack of funds but some of it is due to lack of energy to go find and train the right support person. Do you know of a family like this in your local DS community?Some of us have a loved one with DS who will not be going to college after high school. We have a young adult with DS who lives with us who does not comprehend what a job entails, or that you need money to buy stuff, or[...]



31 for 21 - Day Seven

2012-10-07T20:18:55.747-07:00

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Welcome to Holland
Emily Perl Kingsley 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


I also love this reading of the essay.



 
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31 for 21 ~ Day Six

2012-10-06T20:36:02.756-07:00

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

Indulge me for a moment, and imagine yourself to be a violet growing smack dab in the middle of a beautiful bed of daisies -- and all of your (short) life, the multitude of daisies surrounding you seem frustrated that you are different. They try endlessly, and to the best of their abilities to turn your into a daisy, despite the fact that you, while very similar in many ways, are also very different than the other flowers who share your life. Would it serve you to try to be a daisy when it is clearly true that you aren't one, and never will be? How would it feel when the well-intentioned daisies around you continually insist that you look and act more like a daisy than the violet that you truly are? And, have you ever picked a violet and suddenly found yourself wishing that it were a daisy instead? Wouldn't you be glad of its' violetness, and that be sufficient, or rather exquisite, in and of itself? Is it any different with people?

I imagine, dear teacher, your mind is now thinking, well, this world is predominantly of, for and by the daisies. And true, you have generously and with much self-sacrifice spent a good deal of your time patiently teaching the violet a few daisy tricks, so that she can function effectively in the daisy bed. After all, she is growing there. And my point is, that if she has to deny her essence as a violet, there is no value at all in learning daisy skills. If daisy skills, however are optional, and she can be accepted as the violet that she is, she will gracefully and sweetly unfold into the fullness of her beauty, warmed by the sun, and nurtured by the trust and open-heartedness of her surrounding daisies.
**Violets, beloved friend and teacher, are NOT impaired daisies.**

Excerpt from: VIOLETS and DAISIES by Kay Drais ~ Which is one of my most favorite essays on Inclusion.



31 for 21 - Day Five

2012-10-05T20:12:10.238-07:00

I love October.  Always have.Because of Emma Sage, and her very acute observations of life and living each day fully,  I love it even more now.  The air is more palpable to me….I sense the coolness, the early morning mist and the warm Indian Summer days….sometimes all within a 24 hour period.  I savor it.The colors are more vivid and intense.  I get giddy at seeing trees change right in front of my eyes.  I notice the last days of harvesting with a fond remembrance of my grandfather and the bushels of treats that abound when he was alive.Of pumpkins bigger than you can imagine…..and decorating for Halloween which always brings me delight.  I love magic and wonder and October is filled with it.It is also Down syndrome Awareness month….and now with the Internet humming with so many amazing souls, the awareness is taken to greater heights….of so much positive energy.I feel so alive.So today, as the phenotype of Brushfield spots popped up again and again on my Facebook feed, it made me recall a post that I did 7 years ago for 31 for 2 1.  [Sweet Maddy who is picture below had the most incredible Brushfield spots.]It is amazing how much has changed [and sadly, how much has remained the same in seven years]The topic was of editorials that still run of perpetuating the myth that Down syndrome is something that is ‘unfortunate’ and the prenatal tests that were just emerging at the time….to test earlier and earlier in gestation so that woman may opt to terminate at a time frame that is considered ‘easier and less evasive’.    Let’s just say this.    No woman who has ever had an abortion will tell you that it is ever easy or non- evasive.  It cuts at the very heart and soul of a woman.  Some pro-abortion activists will lead you to believe otherwise, but the truth of the matter is this.  Abortion hurts women at the time of the procedure and decades later their souls are still tattered.  Trust me on this one.So I leave you here at the beginning of a post I wrote 7 years ago.I remember with love all my friends whose precious children have left us too early…..and my heart weeps for their loss.***~~***~~*** written 7 years ago.....During the last few days I have reflected on the whole situation with Indy's Child magazine and editorials that still target our children that have Down syndrome as something 'unfortunate' and in need of earlier and earlier prenatal tests to eliminate the burden of continuing a pregnancy that is deemed 'imperfect'.While I watched Emma Sage playing with cousins and friends, celebrating the 4th of July, I kept thinking about all the people I have met during my journey with Emma Sage in our life, whose beloved children with Trisomy21 have died. Children whose lives were wanted, loved, cherished and missed dearly. I made this little banner in the memory of all of these beloved children and a reminder to all that all children are blessings.....those with 46 chromosomes and those with 47.   Our children are loved and wanted.....and cherished beyond what words can convey. We are fortunate...and truly blessed.This is Maddy.............she is an angel in heaven, but the love and joy she brought her family and friends will live on forever in their hearts.  [...]



31 for 21 - Day Four

2012-10-04T20:27:23.001-07:00

sar·casm   /ˈsɑrkæzəm/ Show Spelled[sahr-kaz-uhm] Show IPA noun 1. harsh or bitter derision or irony. 2. a sharply ironical taunt; sneering or cutting remark: a review full of sarcasms.  Yes, Sarcasm.  Not a word you would typically think of when you think of someone with Down syndrome. Myths abound.  They are so sweet.  They are so innocent. They woud never use wit, irony or sarcasm in a conversation. Busted - another Myth that is. Emma Sage has the most unique and loving relationships with her siblings.  In her relationship with Katrina it is a 'Love - Hate' full of wit and sarcasm and absolutely hysterical. Last night Katrina slept home [she is not home more than she is home these days, but not officially moved out].  As we were all getting ready for work/school I say to Katrina.  "I don't know how you do it, but you were only home for a few hours and your room looks like a tornado hit it" to which she replys  "I'll clean it" and Emma Sage walks by not missing a beat and says "Or you could move out" Badda-bing. She is quick on the uptake and always ready to taunt and tease her sister. They love each other, they really do!  [...]



31 for 21 - Day Three

2012-10-03T19:39:52.765-07:00

There are three classifications of Trisomy 21 [Down syndrome] ~Nondisjunction - If a sperm or egg with an abnormal number of chromosomes merges with a normal mate, the resulting fertilized egg will have an abnormal number of chromosomes. In Down syndrome, 95% of all cases are caused by this event: one cell has two 21st chromosomes instead of one, so the resulting fertilized egg has three 21st chromosomes.Robertsonian Translocation- Three to four percent of all cases of trisomy 21 are due to Robertsonian Translocation. In this case, two breaks occur in separate chromosomes, usually the 14th and 21st chromosomes. There is rearrangement of the genetic material so that some of the 14th chromosome is replaced by extra 21st chromosome. So while the number of chromosomes remain normal, there is a triplication of the 21st chromosome material. Some of these children may only have triplication of part of the 21st chromosome instead of the whole chromosome, which is called a partial trisomy 21. Translocations resulting in trisomy 21 may be inherited, so it's important to check the chromosomes of the parents in these cases to see if either may be a "carrier."The remainder of cases of trisomy 21 are due to mosaicism: Mosaic Down syndrome happens when a person has a percentage of cells with an extra 21st chromosome and the remaining cells are unaffected. This type of Down syndrome accounts for about 2%-4% of the cases of Down syndrome.Emma Sage has Mosaic Down syndrome.What is Mosaicism?from Dr. Len Leshin, MD, FAAPEvery cell in the human body comes from one initial cell: the fertilized egg, which is also called the zygote. After fertilization, the zygote then proceeds to divide. As new cells form, the chromosomes duplicate themselves so that the resulting cells have the same number of chromosomes as the original cell. However, mistakes sometimes happen and one cell ends up with a different number of chromosomes. From then on, all cells originating from that cell will have the different chromosomal number, unless another mistake happens. (All like cells originating from a single type of cell is called a cell line; for example, the skin cell line, the blood cell line, the brain cell line, etc.)When a person has more than one type of chromosomal makeup, that is called mosaicism, like the mosaic style of art in which a picture is made up of different colors of tiles. In Down syndrome, mosaicism means that some cells of the body have trisomy 21, and some have the typical number of chromosomes.Two very good resources regarding Mosaic Down syndrome are the International Mosiac Down syndrome Assocation and Mosaic Moments. [...]



Mirror ~ Mirror

2012-10-02T20:32:23.303-07:00

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31 for 21 - Day Two

2012-10-02T20:24:04.039-07:00


ad·vo·ca·cy :: [ad-vuh-kuh-see] :: noun, plural ad·vo·ca·cies.

the act of pleading for, supporting, or recommending; active espousal: He was known for his advocacy of states' rights ~  Active support, esp of a cause

One of the things that I take seriously as Emma Sage's Mother, is that as I advocate on behalf of her and other people with Down syndrome ~  I am also teaching her and giving her to tools by my advocacy for her to be able to one day raise her own voice......to speak her thoughts, her opinions, her ideas.     To follow HER dreams........

A favorite writer of mine on the topic of disabilities awareness is a gentleman named Dave Hingsburger.  He maintains a blog on disability advocacy at ‘Rolling around in my head’.

A post of his that touched me deeply is called ‘ChoicesIndeed’.  Upon reading this piece it became my hope that someday Emma Sage has the same spirit and drive as a self-advocate as this young man.

Take a read and tell me what you think.



31 for 21

2013-05-08T19:28:28.604-07:00

This is the story of how Down syndrome entered into our lives,,,,,,,,presenting itself in the genetic make-up of our youngest child. We hope you Enjoy reading about our beginning of this journey........ The story of Emma SageEmma: One who healsSage: One with great wisdomAlexandra: See her birth story to find out the meaning of her third [unplanned] nameEven before her birth, Emma Sage has lived up to her name, by healing and teaching those around her the true meaning of life.Emma Sage is our fifth child. She was conceived one year to the day of our miscarriage. Before her conception I never fully understood the power of ones soul…….but the moment of her conception, I arose from a deep sleep, overcome by the most incredible sensation.….I sat up as I felt her soul enter into my body [I know you might question this experience, but it was the most profound moment of my life and one that has allowed me the greatest sense of peace.] I knew immediately that I was pregnant. I placed my hands on my lower belly and asked GOD for this baby to stay. It was a warm August night and the moon was full. I laid back down and watched the stars through the skylight thinking about what had just happened.About 10 days later I took a home pregnancy test and it was positive….I took three more just to be sure. I was very nervous because of our loss that I asked my midwife to check my HGH levels at around 4 weeks. The levels were high and my fears subsided a bit. It was around this time that I began having dreams. I kept dreaming of a little girl who looked just like a china-doll….so tiny and perfect. I had my first dream of having the baby on the side of the road…..Beginning my concern of missing labor and birthing [in my dreams it was everywhere]. My sister who is a L&D nurse would laugh at me when I would tell her of my dream and she brought me a cord clamp and told me to keep it with me. [As fate would have it, we needed to use that cord clamp!] At 8 weeks, we took a family vacation to Florida. While at Universal Studios, Rick, Katrina, Greta and I [Otto was at Disney World with my mother, sister and her family] we were sitting in NYC waiting for the Blues Brothers show…..when this powerful sensation came over me again. I was watching this beautiful little boy dancing around…he would come up to us and smile and then dance away back to his parents. After the show started I could not keep my eyes off of this little guy. I looked at Rick and told him that I thought that this little baby was going to be exactly like that little boy [that it would have Down syndrome]. Rick put his arm around me and said, “That would be just fine”. I told my sister about the incident that night at dinner and we both forgot about it.At my 13-week visit I was measuring big for dates, so my midwife asked if it was OK to do an ultrasound to rule out twins. Rick and I agreed [I was actually so nervous this pregnancy and wanted to take a ‘peek’ at little one]. The ultrasound was one of the worst experiences of my life….for the only reason being that the technician was cold and in the middle of the scan said “There is something wrong with this baby” and left it at that, even though I was asking her millions of questions. While I was wiping off the goop, she called my midwife and said, “I think we have a problem”…..Rick and I went right up to my midwifes office. There, my midwife Peggy told me that the technician had measured t[...]



Reading

2012-07-05T21:31:44.170-07:00

“Reading is the sole means by which we slip, involuntarily, often helplessly, into another's skin, another's voice, another's soul.” ~ Joyce Carol Oates
Reading.

It is something I treasure and the one thing that I prayed to GOD for when I realized that Emma Sage was born with Down syndrome. I got down on my knees and prayed that she would learn how to read……as you see, for me, reading is magical. It is the key to many adventures.

So, reading is the basis of this little Emma Sage funny.

Last night, Emma Sage is chatting away with Greta and I. She turns to Greta and says “Truth or Dare”

Greta replies “Truth” and Emma Sage proceeds “Which do you prefer, a fun, sporty date or a quiet, romantic evening?” Greta turns to me like ~ wt????
She continues…..asking both Greta and I questions [and if we say Dare, she gives us silly things to do].

“Where is this coming from?” Greta asks me…..

I reply “She must have seen it on a Disney show” [as that is the only TV she watches, except when her PopPop is watching her and they watch I-Carley together…..My Dad likes that show! Lol!]

So the game continues…..with questions that are very sophisticated and well beyond the scope of my newly turned eleven-year-old girls realm.

Later that night Greta comes into my room laughing so hard…..

She states “I know where the ‘Truth or Dare’ questions are coming from……..come see”.

So I follow her upstairs to Greta’s room and there is Emma Sage sitting on Katrina’s bed, lounging and reading ~~~ Cosmopolitan

Yikes.

It is such a wonderful blessing she is such a good reader, but I must make sure that reading material that might not be ‘age-appropriate’ be kept out of her reach.

Now I know where all her ‘beauty secrets’ she has been giving me are coming from.

Bwahahahahaha……..

Silly Little imp of mine.



They had Security, but they Valued More

2012-07-04T09:19:43.203-07:00

**And for the support of this Declaration, with a firm reliance on the protection of Divine Providence, we mutually pledge to each other our Lives, our Fortunes, and our sacred Honor.**They Pledged their Sacred Honor..........Have you ever wondered what happened to the 56 men who signed the Declaration of Independence?Five signers were captured by the British as traitors, and tortured before they died.Twelve had their homes ransacked and burned.Two lost their sons serving in the Revolutionary Army; another had two sons captured.Nine of the 56 fought and died from wounds or hardships of the Revolutionary War. They signed and they pledged their lives, their fortunes, and their sacred honor. What kind of men were they?Twenty-four were lawyers and jurists. Eleven were merchants, nine were farmers and large plantation owners; men of means, well educated. But they signed the Declaration of Independence knowing full well that the penalty would be death if they were captured.Carter Braxton of Virginia, a wealthy planter and trader, saw his ships swept from the seas by the British Navy. He sold his home and properties to pay his debts, and died in rags.Thomas McKeam was so hounded by the British that he was forced to move his family almost constantly. He served in the Congress without pay, and his family was kept in hiding. His possessions were taken from him, and poverty was his reward.Vandals or soldiers looted the properties of Dillery, Hall, Clymer, Walton, Gwinnett, Heyward, Ruttledge, and Middleton.At the battle of Yorktown, Thomas Nelson, Jr. noted that the British General Cornwallis had taken over the Nelson home for his headquarters. He quietly urged General George Washington to open fire. The home was destroyed, and Nelson died bankrupt.Francis Lewis had his home and properties destroyed. The enemy jailed his wife, and she died within a few months.John Hart was driven from his wife's bedside as she was dying. Their 13 children fled for their lives. His fields and his gristmill were laid to waste. For more than a year he lived in forests and caves, returning home to find his wife dead and his children vanished. A few weeks later, he died from exhaustion and a broken heart.Norris and Livingston suffered similar fates.Such were the stories and sacrifices of the American Revolution.These were not wild-eyed, rabble-rousing ruffians.They were soft-spoken men of means and education.They had security, but they valued liberty more.Do you value Liberty?[...]



Have you ever read it? I mean Really read it?

2012-07-04T09:11:40.202-07:00

IN CONGRESS, JULY 4, 1776 The unanimous Declaration of the thirteen united States of AmericaWhen in the Course of human events it becomes necessary for one people to dissolve the political bands which have connected them with another and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. -- That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, -- That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing itspowers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn that mankind are more disposed to suffer, while evils are sufferable than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it istheir right, it is their duty, to throw off such Government, and to provide new Guards for their future security. -- Such has been the patient sufferance of these Colonies; and such is now the necessity which constrains them to alter their former Systems of Government. The history of the present King of Great Britain is a history of repeated injuries and usurpations, all having in direct object the establishment of an absolute Tyranny over these States. To provethis, let Facts be submitted to a candid world.He has refused his Assent to Laws, the most wholesome and necessary for the public good.He has forbidden his Governors to pass Laws of immediate and pressing importance, unless suspended in their operation till his Assent should be obtained; and when so suspended, he has utterly neglected to attend to them. He has refused to pass other Laws for the accommodation of large districts of people, unless those people would relinquish the right of Representation in the Legislature, a right inestimable to them and formidable to tyrants only.He has called together legislative bodies at places unusual, uncomfortable, and distant from the depository of their Public Records, for the sole purpose of fatiguing them into compliance with his measures.He has dissolved Representative Houses repeatedly, for opposing with manly firmness his invasions on the rights of the people.He has refused for a long time, after such dissolutions, to cause others to be elected, whereby the Legislative Powers, incapable of Annihilation, have returned to the People at large for their exercise; the State remaining in the mean time exposed to all the dangers of invasion from without, and convulsions within.He has endeavoured to prevent the population of these States; for that purpose obstructing the Laws for Naturalization of Fo[...]