Wednesday, October 31, 2007

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Happy Halloween

Sunday, October 28, 2007

Saturday, October 27, 2007

Friday, October 26, 2007

31 for 21......

Well, life and a crashed computer have seemed to get in the way of my goal of posting everyday for 31 days in Celebration of Down syndrome Awareness.

I saw this posted on Betsy Biskets' blog about two websites that offer wonderful gift items in support of their local community for those with Down syndrome.

They are wonderful gift ideas and with the upcoming holiday seasons quickly approaching, a great way to get a jump start on shopping.

Simply Adorable Blankets

Creekside Cookies and More



Tuesday, October 23, 2007

Where have we been?

We have been visiting with friends, both far and near.

Emma Sage and I headed out to Indiana to celebrate Down syndrome Awareness Month with friends [who also traveled from all over the country, including our neighbors to the north in Canada] What fun we had.

Sadly, my computer crashed when I got home, so pictures will be forthcoming.

Here is one of Emma Sage and friends.....

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We also had our local Buddy Walk this past weekend......

and Homecoming Dance, and football, and Field Hockey, and schooling.....

and well, this Momma has to figure out a way to catch up with it all online.

and hopefully share pictures soon.

The Child King

I have just ordered this DVD.....it was recommended on one of the Down syndrome lists......

The Child King
dvd

It is the story of a determined young man with Down syndrome, who takes his non-believing brother on a quest to find Santa Claus at the North Pole.

Take a moment to view the trailer and flip through the book.

I can't wait to recieve our DVD and watch it with all of my children, especially Emma Sage!

Thursday, October 11, 2007

31 for 21........Road Trip

Emma Sage and I are heading out tomorrow morning at the crack of dawn.....actually, even before the sun begins to rise.

We are heading west....to visit with lots of friends who are traveling this same journey we are.....living with and loving someone with Down syndrome.

Some of the friends we will be meeting up with, are friends we met online, whilst I was pregnant with Emma Sage......with only 'soft markers' and a Mother's intuition to know that the precious little one I was carrying deep within my womb and under my heart was going to enter our world and change all of us in the most profound ways. These woman understood that Mother's intuition.......they also welcomed me with open arms, telling me that if I was wrong, that they would still love for me to visit the Down syndrome board at Parents Place, as I was counted in as one of their own.

On May 9, 2001.....I officially became a member of this amazing group of kindred souls.....by the birth of our sweet Emma Sage.

So, keep us in your thoughts and prayers for safe travels.....

and I'll have lots and lots of pictures and stories to share of our weekend, early next week.

Peace and love, Tara Marie & Emma Sage

Wednesday, October 10, 2007

31 for 21....Think of Me First As A Person

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Think of Me First As A Person

You look at me with pity,
concern or indifference,
for I am a retarded child.
But you only see the outside of me.
If I could express myself,
I would tell you what I am inside.


I am very much like you.
I feel pain and hunger.
I cannot ask politely
for a glass of water, but I know
the parched dry feeling of thirst,
I itch when mosquitoes bite me
and run when I see a bee.
I feel cozy drinking cocoa in the kitchen
when a snowstorm blusters outside.

I had a heaviness inside
when I left my mother
to board the minibus for school.
My eyes darted back and forth,
seeking escape,
but knowing there was none.
When my sister takes me to the
playground and children call me names,
she cries and takes me home.
Then I feel warm and dizzy,
and it is hard for me to breathe.
Mother's eyes are wet; she holds me
and tells me a story, and
I forget the children's jeers.
When I dress myself and Mother
pats my head, saying, "Good job,
Jim!" I feel...big. As big as Greg,
who goes to second grade.

I am a child -
in age now, and in ability always.
I find the touch of soft toys
and snuggly dogs comforting.
I love the toys of childhood -
a kite, a balloon, a wagon to pull.
I like to let go at the top of a slide
and after dizzy seconds find myself at
the bottom.
I like sleds on soft snow,
the wetness of rain on my forehead.

Though it is comfortable to be babied,
I am less dependent
when people treat me as a big boy.
I don't want their sympathy;
I want their respect for what I can do.
I am slow, and many things
you take for granted are hard for me.
I can hardly understand
what "tomorrow" means.
It took me months to learn
to pedal the tall blue tricycle,
but I was so proud when at last
both feet pedaled in the same
direction and the wheels went forward.
How happy I was
when I turned on the right faucet
to get a drink of water.
I didn't want to ever turn it off.
If I can learn at my own pace and still
be accepted,
I can fit into a world
where slowness is suspect.

Think of me first as a person,
who hurts and loves and feels joy.
And know I am a child to encourage
and direct.
Smile, and say hello -
even that is enough.

- Rita Dranginis

Tuesday, October 09, 2007

Get It Down ~ 31 for 21

Abortion: The perfect 'cure' for Down syndrome?
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Posted: February 22, 2007
1:00 a.m. Eastern

By Mark P. Mostert, Ph.D.


Dwight Core Jr. is 47, reported the Virginian Pilot Feb. 11. He likes to color using crayons from a Ziploc bag. Watching TV is fun, too. Dwight has Down syndrome.

"Think of Me First as a Person," a 7 1/2 minute home movie of his life, filmed by his father and collated by his nephew, has been the talk of the film festival circuit. It documents happy times, but also the heartbreak of Dwight's institutionalization for most of his teen life. Last December, along with Alfred Hitchcock's "Notorious," it was added to the highly selective National Film Registry by the librarian of Congress. Dwight is one of the lucky ones – he is loved. And alive. Alive to smile when he recognizes himself on the screen. Alive to enjoy coloring.

The Nazis called people like Dwight "useless eaters." The American College of Obstetricians and Gynecologists, or ACOG, calls them a disagreeable symptom of a less than perfect pregnancy.

Last month ACOG recommended that all pregnant women, regardless of their age, be offered screening for Down syndrome because improved diagnostics now more accurately detect Down syndrome earlier in pregnancy. Conveniently, this makes the option of choosing abortion easier. Or, as ACOG delicately puts it, screening allows OB-GYNs "to best meet the needs of their patients." Here, of course, getting rid of the mother's pregnancy is the "need" that has to be met.

The reality is that once a Down diagnosis is given, counseling of the parents is often biased against completing the pregnancy. Parents are much more likely to be told that a Down child will have a low quality of life or that he will require expensive medical care over his entire lifespan. A positive counterbalance is rare.

Essentially, ACOG's latest recommendation has taken a giant leap toward making the abortion of preborn children with Down syndrome socially acceptable, using the "it's for the best" excuse.

The tragic result? More of these children's lives are ended before they even draw their first breath than ever before.

Unborn Down children now are considered a medically negative symptom of pregnancy.

That's what we used to think of them decades ago: Imperfect beings with mental retardation and chronic medical problems that needed to be shut away because they were different. No school. Few, if any, friends. No real life to speak of.

Parents and other advocates have fought long and hard to have people with Down included in all aspects of society. Their efforts have meant increased tolerance and respect for the differences associated with the syndrome. Today, people with Down in the U.S. are arguably better served and included than ever before. Their increased public visibility has helped us all become more mindful of our common humanity.

Yet these humanitarian gains may be slipping from our grasp. Times have changed, and not for the better. If recommendations such as those of ACOG are followed, children with Down syndrome, in increasingly large numbers, will literally disappear – from our schools, our malls, our businesses, and our lives. In the oxymoronic world of "bioethics," this entire group of people would be denied the right to exist because they are unable to make the case for why they should even be born.

So, is ACOG really trying to rid the world of people with Down syndrome?

Undoubtedly.

In fact, we can safely say that they finally have found a perfect cure: Without exception, every case of Down syndrome can be cured by abortion. What better way to address the dreaded symptom of an imperfect pregnancy than to simply get rid of it?

This is exactly what ACOG's recommendation makes clear: This defect must be eradicated. Entirely. Killing as a preferred medical treatment. Killing for the greater good. What's not to like?

So, for an increasing number of Down children, their individual and group identity is being obliterated by the zealous over promotion of unblinking medical tests. The justification of whether they live or die is made for them – without their consent – by medical organizations like ACOG who've added a sophisticated insanity to the now-quirky notion of "Do no harm."


--------------------------------------------------------------------------------

Related special offer:

"Struggling for Life: How our Tax Dollars and Twisted Science Target the Unborn"


--------------------------------------------------------------------------------

Mark P. Mostert, Ph.D., is director of the Institute for the Study of Disability and Bioethics at Regent University in Virginia Beach, Va., where he is also professor of special education.

Monday, October 08, 2007

Perseverance

Perseverance: /ˌpɜrsəˈvɪərəns/ - [pur-suh-veer-uhns] –noun
1.
steady persistence in a course of action, a purpose, a state, etc., esp. in spite of difficulties, obstacles, or discouragement.
2.
Theology. continuance in a state of grace to the end, leading to eternal salvation.

Emma Sage can be defined by the above word......in both contexts.

She is always in a continuance state of grace...........and she teaches me life lessons every day.

But the greatest way she is defined by perseverance is that she is exactly that....a steady, persistent course of action, in spite of difficulties, obstacles or discouragement.

She never gives up.

At the Harvest Festival they had this big inflatable climby-thing. It was difficult at the end [as you will see by the following pictures] but this child never gave up. She actually got the attention of a young girl, who was there to lend a hand and make sure she succeeded [it was such a sweet gesture]. After the first try [which she kept sliding back down, get up half-way and then slide down again, she got it!]....and boy did she get it, as the next time and the next time and the next time, she just improved her style and was literally flying up that 'rock' wall.

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Her first time approaching the 'rock' wall

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She is not quite sure on how to get up it....

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She slowly inches her way up....

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Only to slide back down....

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and she climbs back up....
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only to slide back down again....and this is the young girl who stops to help her....

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She brings her to the other side [where there were less children climbing up and around Emma Sage] and she gets the hang of it...
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higher.....

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and higher [she the young girl on top, she was waiting for Emma Sage]
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She is almost there....

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V*I*C*T*O*R*Y

After a bit, Emma Sage figured out it was much easier to tuck her dress up [she could care less that her undies were showing] and she was able to just climb away.

Everyday, I give thanks for the Gift that is my daughter Emma Sage.

Sunday, October 07, 2007

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No spring nor summer beauty hath such graceAs I have seen in one autumnal face.~John Donne

This is one of the pictures I took today at the Harvest Festival.....this is when Emma Sage and I sat by the river and 'talked'.....as you can see by her eyes, she had just finished her tears [mine were just as red]

Observation, Understanding and Empathy

I think one of the greatest misconceptions the general population has about people with Down syndrome is that they do not fully understand typical conversation's, that unless you stop and talk directly to them, and in more simplistic terms, they don't pick up what is going on [fast paced] around them.

I think this, because I know I have been; and still can be, guilty of it. Sometimes, I think that Emma Sage will not pick up on adult conversation [that is going on around her] and time and time again, she proves me wrong by bringing the topics up at later dates and conveys to me that she not only heard the conversation, she has thought about it and discusses it with me [or others].

Which brings me to the title of this post.....Observation, Understanding and Empathy.

Last night, I was talking to Rick, whilst Emma Sage was busy playing near by. She was not part of the conversation and was engrossed in the activity she was doing.

I was telling Rick that the friend of Otto's that I was picking up to bring to the Fall Harvest Festival [the boys were playing in an Xtreme Wiffleball tournament, that was a fund raiser for a local child that had cancer] had a very troubled past. When this little boy was a baby, his father murdered his Mother and older brother and left him to die. I won't go in more details here, but I had told Rick the whole story.

I didn't even think that Emma Sage would have picked up on the conversation, as she was busy playing and didn't respond or ask me any questions.....boy was I wrong.

Which troubles me greatly, as she was thinking about it......Because after we picked him up, she proceeds to say "Your Mommy died in Florida" Thank goodness the boys were busy chatting [Otto's cousin was also with us] and I covered it up quickly [and because her diction is not the strongest with outsiders able to quickly pick up on what she is saying in busy conversation] I said "Yes, we took your sister to Florida" to which Emma Sage replies, "But his Mommy died"

I am really starting to sweat this conversation out, as it also caught me off-guard as I really did not think she had heard or understood the topic.

My recovery at that point [and thankfully the boys were excited chatting about the upcoming tournament to be paying attention to a six year old sister] I said "Yes, your Kitty died"

At this point, it seemed like Emma Sage picked up my uneasiness and 'weird' come backs to her conversation and stopped the topic.

I thought that would be the end of it.

It was not.

The whole afternoon as she and I played at the Harvest Festival, she would bring it up. She heard EVERYTHING I had said, and she had lots of questions about it.

At one point she said to me "Why did his Mommy die?" so I told her that GOD needed her in heaven [something I have told her about my own Mother's passing]

Then she said to me "Mommy's should never be shot" with tears streaming down her face.

I almost fell over.....and of coarse I started to cry. I replied "Yes, honey, Mommies should never be shot. No body should ever be shot"

We talked a little more [while we sat by the river] and she seemed to be satisfied with our conversation as she never mentioned the topic for the rest of the day, or this evening.

So, never think that because someone has Down syndrome, they don't observe your conversations, that they don't understand a conversation and that they don't process the information and feel empathy for sad topics. I know it is something that I seem to have to relearn over and over again.....and hopefully I will learn my lesson.

And on one positive note....the boys WON the tournament and got a trophy....they were so excited!



Get It Down ~ 31 for 21

An article in the TimesLeader

Down syndrome
One extra chromosome at the root
By Mark Guydish
Education Reporter


Do not underestimate Quinn Crispell as she blurts out “goo” for the glue used in making her paper bat. Do not consider this 4-year-old’s condition rare when you watch her walk with a wide gait and wider smile. Do not ignore her numerous life-long risks of health complications as she struggles to step up with her left leg onto a bench and plop a stuffed frog through a kid-size basketball hoop during therapy.

Don’t dismiss the importance of those therapies, which began almost from birth, and don’t assume her abilities will plateau someday as she struggles to learn things most children grasp instinctively.

Do not underestimate Down syndrome, or the people who have it.

Quinn is one of roughly 145,000 Pennsylvanians diagnosed at birth with Down syndrome every year. She is one of 210 Luzerne County residents currently receiving therapies and assistance through the county Mental Health/Mental Retardation office, at a cost of roughly $600,000 this year. Much of that goes to early intervention, with therapy starting within weeks of birth and never stopping. It works. At first blush, without being told, you could easily assume Quinn is any 4-year-old charmer.

She is doing so well that Allied Services, where she receives her weekly therapy, made her a “pediatric ambassador,” a sort of poster child for what happens when children with special needs get them fulfilled.

October is Down syndrome Awareness month, and advocates, such as Quinn’s father, Scott, will tell you there is a lot the general public ought to know.

Down syndrome strikes quite literally through the blueprints of life: The
chromosomes containing our genetic code. A person normally has 46
chromosomes, 23 from each parent. Down syndrome is caused when a person has
three copies of chromosome 21, technically called "trisomy 21." All the
chromosomes are normal, there is just one too many.
There are three variations on this problem, though the outcomes are pretty
much the same, according to Lehigh Valley Hospital Pediatrician Dr. Donald
Levick. "The vast majority of children with Down syndrome have standard
trisomy 21."

A second variation is "translocation trisomy," when all the cells have the
right number of chromosomes, but "a piece of chromosome 21 attaches to
another chromosome, so there is extra chromosome 21 material in the cells
This happens in 3 to 4 percent of the cases."
The third variation is called "Mosaic Down syndrome," which occurs when some
cells have the normal 46 chromosomes while others have the extra one. This
also happens in 3 to 4 percent of Down syndrome cases, and can be a bit
harder to detect at first because "the physical features may be mild and
therefore tougher to pick up at birth."
Those features include the facial distinctions most people associate with
Down syndrome: eyes slanting upward and outward with a fold of skin on the
inner side and a narrower slit to the eye. The face appears flatter, the
head smaller, the ears lower and the lips thinner.
There are non-facial traits as well, including pinky fingers that turn in
slightly and what was once called - with political incorrectness
demonstrating how unkindly the world once viewed children with Down syndrome
- a "simian crease." That's a single crease across the palm rather than the
two creases most people see when they open their hands.
The therapy children with Down syndrome are most likely to need is speech,
Levick said. In all cases there will be "some degree of delay both in terms
of cognitive skills and motor skills, but that's variable and you can't
predict it at birth." Still, "there's no such thing as having a more severe
or less severe case of Down syndrome. You either have it or you don't.
"As with most genetic problems, there is no real known cause," Levick said,
though the risk goes up with the age of the mother. There is also no known
cure. "The most promising line of help is aggressive therapy and
socialization." In the decades since society adopted the idea of therapy
started near birth and inclusion of students with Down syndrome into regular
classrooms, people with Down syndrome have been living longer, more
traditional lives, often on their own. Some marry and have children (it is
not hereditary). They learn to play musical instruments and dance, they hold
jobs and keep house. In short "they are doing remarkable things," compared
to the low expectations foisted on them in decades ago, before Down syndrome
was really understood.
And by the way, Levick noted, it's "Down syndrome," not "Down's." Don't make
the mistake amid parents and advocates can react harshly when you use the
latter. "I've learned that from personal experience."
http://www.timesleader.com/news/20071007_07Down_side_mg_ART.html

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I usually refer to Emma Sage's genetic make-up as Trisomy21.....but many people don't know the correct term, but know what 'Down syndrome' is.

When I post pictures on Flickr.com, I use the following tags, T21, Trisomy21, Down syndrome and Down's syndrome BECAUSE, people in England, Ireland and many other parts of the world know the diagnosis to be Down's........so I don't even bother correcting people [as the Doctor stated in the article] because outside of the United States, it is correct to use the latter. Plus, I figure, we American's have butchered proper English over the years, so if they want to use Down's...it is fine by me! :)

Saturday, October 06, 2007

Mr. Blue Sky............A New Movie

Mr. Blue Sky
is officially in theatres starting Novemeber 9th at Babylon Clearview Cinemas in Long Island New York.It's starting as a limited engagement and hopefully it will spread to a much wider release across the nation following.It will play initially for 1 week, twice a day.

Mr. Blue Sky Plot Synopsis:

An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present.Mr. Blue Sky is a ground-breaking film that explores the romantic relationship of a woman born with Down syndrome and a "normal" male, as perceived by today's society. Mr. Blue Sky attempts to break down society's barriers, much like "Guess Who's Coming To Dinner?" did in the 1960's, as it aims to "change lives" through "changing minds."Mr. Blue Sky is a heart-grabbing story that will ultimately change the way society views all people as "individuals" first and foremost.The title is derived from a little girl's hope and love through the sun (Mr. Blue Sky.)

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You have to click on the link above and learn more.....you also have to go see the photos from filming.........just incredible!

Get It Down ~ 31 for 21

Emma Sage has been ill for two days. She has what appears to be a stomach/intestinal bug.

Even though she is ill, she still tries to be such a trooper.

On Thursday, she was just starting to get sick. When I would ask her if she was OK, she would look at me with her sweet eyes and say "I'm OK Mom, don't worry"

But I'm a Momma, that is what Mommas do.....we worry.

In spite of her being under the weather, she still radiates her sweet, beautiful self.

At Greta's field hockey game she realized that I was taking pictures and video clips of Greta's game.....and my little model did what she does best ~ She popped in front of the camera.

I couldn't get mad at her....as you can see by this pictures, she is just too darn precious! lol!

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Can't you see in her eyes that she is not her 100% self.
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What a ham-bone

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Getting up close to make SURE Momma was taking her picture.
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and Greta, whom I was trying to capture with the camera and Little Sis was getting a wee bit jealous that the camera was not focused on HER!!!!
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Notice the boys in the background....I think it is so cool that boys take the stats for the girls games....when I was in school, you wouldn't find a boy anywhere near the girls sports teams.....times have changed and that is such a good thing!

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Greta's team is 9-1 in the regular season and were undefeated in preseason.

So, I guess my post today is to just share how much we love and adore our little girl. How absolutely funny she is.....and how typical she is in her emotions and sibling rivalry.

and the last note.....

We had to run out to get Greta new shoes tonight and then made a stop at Targets to pick up a few things.

While at Targets we passed the Halloween section and Emma Sage has decided that she wanted to be a Witch for Halloween [which she is so excited about and asks me a few times a day how long before 'Trick or Treat']

We found a few different costumes and she showed them to Greta but told us that she wanted THIS Witch.....
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So guess what Emma Sage is going to be for Halloween.

She KNEW exactly what she wanted and which costume she wanted [even though Greta and I had other ideas]

This little Witch is uniquely herself.....and we love her dearly.

Friday, October 05, 2007

A 31 for 21 contest......

One of Emma Sage's online friends Prince Vince is having a contest on his Momma's blog. You see, she just opened this very trendy and adorable shoe store.

The contest is a pair of Wellies......Pink Wellies

and you know me and Wellies. Emma Sage loves to play in the mud and rain and Wellies remind me of my Mum, so we have entered a chance to win.

Please click on this link and visit Prince Vince.

21 Things you might or might not know about Emma Sage

I saw this on Unringing the Bell, and thought that it would be a good post for Get It Down~31 for 21 post.....and a good way to learn a little bit more about our pixie.

  1. We knew, but we didn't know that Emma Sage had T21 during my pregnancy. I had premonitions and 'soft markers'.
  2. You are more than welcome to laugh about the 'premonitions' but they were actually right on and more accurate than the ultra sound scans.
  3. This was the first layer of preparation I had for embracing my daughters Down syndrome diagnosis.
  4. Emma Sage was born at home in the bath tub.
  5. 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.
  6. I was the first to say "Oh look, she does have Down syndrome"
  7. 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.
  8. That was fine by me, as my only focus was getting her to nurse.
  9. 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.
  10. Emma Sage has always defied the statistics......she is her own unique person
  11. Emma Sage nursed until she was 3 years and 10 months old.
  12. Her favorite food is.........everything. This child loves to eat, from salad, to soup, to sushi, to pizza......you name it, she will try it.
  13. We opted out of Early Intervention.
  14. We were told we were depriving our child.
  15. Emma Sage has blossomed wonderfully on her own.
  16. Emma Sage is home-schooled
  17. She is currently following a First grade curriculum and loves to learn. She is working hard on reading and spelling and math seems to come easy for her [go figure]
  18. Emma Sage loves to dance
  19. She has been taking dance lessons since she was three
  20. Her first dance studio was our first experience with discrimination
  21. Her current dance studio is the epitome of inclusion and positive forward thinking.

Wednesday, October 03, 2007

Celebrating.........Day number Three of Get It Down

Get It Down; 31 for 21



Art.......

Art is a passion of mine. At the moment, photography is my window into my soul...a way of looking at the world around me and capturing what I see in an artistic way.

I grew up surrounded by Art. My father is an Artist...........actually a fine artist, a Master Art Restorer. He had a little art gallery in our town and most days after school I walked downtown to visit him and just sit in the gallery and take it all in.

Emma Sage loves art. She has started taking pictures and will sit for hours drawing.

This makes her Mommas heart sing, as I know she will always have an outlet for her creativity....a way of showing the world what she sees....a glimpse into her soul.

Today I celebrate another Artist.....a young man with Down syndrome named Michael Jurogue Johnson. If you have never seen his work, you must. Just click on the link which is his name. Also, if you are looking for that perfect gift, why not commission Michael to paint a picture for you. He loves animals and children.....a perfect mix.....and don't forget to check out his list of note cards for the Holidays or just plain old written correspondence!

Here are two pictures that Michael painted of Emma Sage. These are small versions that are made into magnets for my refrigerator. I have both paintings as note cards.

Emma Sage in water color

Tuesday, October 02, 2007

Blessings


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Originally uploaded by nicora
Since my theme today for '31 for 21' is Life is a Blessing......I just had to share this incredible photograph that is one of my favorites on Flickr.com

Life is truly a Blessing......

Gabriel is One


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Originally uploaded by annikaleigh
Can you believe it, my nephew Gabriel is One......he was born two days after we laid my Mother to Rest.

He is just he sweetest little guy [with a determination to pull hair! lol!]

Emma Sage and I got him his hat....isn't it the cutest!

Happy First Birthday Gabriel....We love you SOOOOOOO Much!

Life is a Blessing

Get It Down; 31 for 21



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These flowers were from Emma Sage's Dance Recital last spring.....the cross-stich print was from her Great-Aunt Jan.

What a perfect sentiment for our sweet little girl....as she truly is a Blessing.

In the book, Life is a Blessing ~ A Biography of Jerome Lejeune-Geneticist, Doctor, Father, by Clara Lejeune, Dr. Lejeune's daughter recounts her fathers life. A man who was the first to discover the exact cause of 'Down syndrome' [a triplication of the 21st chromosome] but more importantly.....a man who lived his life with integrity and deeply held principles..........and championed for our children, long before others did. He looked upon people with Down syndrome just as he did all human beings.........as blessings.

My own dear Mother found this book for me......and brought it for me read not long after Emma Sage's birth.

Today, Emma Sage and I celebrate Dr. Jerome Lejeune............as Life truly is a Blessing.

Celebrating.....Day number two

Get It Down; 31 for 21



Books, Books, Books.....

I love books. So I guess that is where Miss Emma Sage gets her love of Books.

So, in honor of Celebrating National Down syndrome Month, I will focus on some of my most favorite books on the subject of Trisomy 21.

Monday, October 01, 2007

Get It Down; 31 for 21

Happiness

Happiness

Since this is Down syndrome Awareness Month, one of the things I am going to do is to share with you all in words and pictures, what life is like with Emma Sage [like that is not what my blog as not been all about already.....lol! But for the next 31 days.........I am going to share a little bit more!]

Like everyone, Emma Sage has her own unique personality and perspective on life. I sit in awe, often, as I watch her going about living and loving life. She truly LOVES life. She wakes up most days with a smile on her face. She is quick to give a kiss to us all. She sometimes wakes up a bit grumpy, and even on those days, her compassion and giving spirit, usually over-rides her tired grumpy self.

I tried to think of one word to discribe her spirit.......of coarse I could not. So, I will pick words and images to share with you the many facets of Emma Sage.

Happiness.......this word is one that always shines through. She can take a cloudy day and make it sunny, she can take a simple activity and make it the most glorious activity ever. She can make you laugh and laugh.....buy her infectous giggle.

Not only is Emma Sage happy, she radiates happiness and makes those of us around her happy too!

I thought these images captured on film perfectly what I was talking about. I took these yesterday at my sister's house at Gabriel's First Birthday Party.

Emma Sage and Rori [she is sitting off to the right of Emma Sage and I will include her, as her expressions were different than Emma Sage's as she was determined to blow a bubble and it was just not working for her...she is just a little bit over two]

Enjoy!

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Dipping the wand......

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Beginning to laugh at me, because the bubbles were hitting my camera!
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This is my most favorite of Emma Sage'-ism's.......as you see that sweet chubby hand of hers going up to her mouth.....she does that everytime she cracks herself up...she giggles into her hand [what a little lady I have!]

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and there you have it....'Pure Happiness'

"Remember that happiness is a way of travel — not a destination" ~Roy M. Goodman

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October is National Down syndrome Awareness Month

It is official.....today is the First of October and that kicks off National Down syndrome Awareness Month

If you click on this link, you can see a post about Down syndrome awareness and visit a few featured blogs [Emma Sage's blog is included].

While we have been a bit laps in our posts of late, please be assured we are all healthy and well.......life has been very busy of late and there are some life issues [for Momma] that have been keeping me from uploading pictures of our days and sharing in our adventures.

But adventures we have been having.

Emma Sage made a road trip to Florida to take her big sister to college. Her Grammy could not believe how wonderful of a road traveler our little girl is.......she was a dream. Emma Sage did not complain once about the time spent strapped in the seat of the van [and having a dvd player playing her favorite movie 'Annie' didn't hurt the situation at all].

She loved the ocean and was getting brave towards the end of her day on the beach.

Emma Sage has been busy with First Grade [yes, can you believe I just typed 1st Grade]. I have so much to add to her homeschooling blog....and as soon as life settles back down for me, I will make sure we upload videos and pictures, as this little girl just LOVES to learn.

So, here is my vow...........for the month of October, I am going to make time in our day to post, post about life here on Maple Lane and what it means to be blessed with a little pixie who just happens to be sporting an extra chromosome on her 21st pair.

Help us Celebrate National Down syndrome Awareness Month..........at some point during this month, have a conversation with someone you know about Down syndrome......and let's see where all the conversations lead!

Peace and love, Tara Marie