Mirror ~ Mirror

"It's important that someone celebrate our existence... People are the only mirror we have to see ourselves in. The domain of all meaning. All virtue, all evil, are contained only in people." ~Lois McMaster Bujold, "Mirror Dance", 1994

"Take the hand of your child and invite her to go out and sit with you on the grass. The two of you may want to contemplate the green grass, the little flowers that grow among the grasses, and the sky. Breathing and smiling together-that is peace education. If we know how to appreciate these beautiful things, we will not have to search for anything else. Peace is available in every moment, in every breath, in every step."
Thich Nhat Hanh,

My greatest hope and wish for my children is that they can always come to a place of PEACE. That they will always marval at the world around them and realize that there is really no other place to search for joy, as it is always within their hearts.

I love when the window is open at dance.....

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As I get to see my little dancer in action.......

The first week of every-other month, the window is open to see our little dancers, which makes it much easier to see, as the rest of the time, there are blinds, and let me tell you, it is hard to get a good view peeking through the teeny-tiny whole where the string that laces the blinds up! Yup, that is how I peek-in on Emma Sage the rest of the time [as I just love to see her dancing!]


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and Peanutbutter, Jelly, Crackers.....Emma Sage practices this one all the time at home! Then she tells me she wants a peanutbutter and bread sandwich! Power of suggestion? lol!


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May you always dance my sweet dear, may you always dance!

In My Own Language.....

I first saw this video, from a link on Trisomy21online.com, that Monica posted.

I sat mezmerized by the whole video, the beginning language, a beautiful, spiritual chant, and the interpertation of what I was witnessing.

There is an interesting discussion going on at T21online regarding the woman in the video, Amanda Baggs and looking at our own built in 'interpertations of life'.

My dear friend Betsy also wrote about how this piece has challenged her to think about the message....it has also done the same for me. I am actually having a hard time putting into words how this video and how Amanda's blog has reached deep down inside of me, challenging me to really think.

At the same time, I'm reading 'The Measure Of A Man ~ a spiritual autobiography' by Sidney Poitier and I recalled a passage in the beginning where he writes about our spiritual interaction with the world and how words don't always have to deliver the message.

pg 13 "This watchful way extended to human nature ~ words, motivations, actions, and consequences. The quiet and simple atmosphere of my childhood enabled me to focus down to the level of the subtle body language that came at me from my parents and siblings. On that tiny island I had gotten to know these signals really, really well. I had learned to read them just as I had learned to read the cliffs and the tides. I didn't understand them all, but over time I could use them as a reference point in trying to understand what others were saying, what they were doing, why they were behaving towards me as they were. I think that this is the basis for what has come to be called "Emotional intelligence.". It's a capacity that's nurtured by silence and the intimacy, and by the freedom to roam."

My hope and dreams for Emma Sage have been exactly the same as for her siblings. I want my children to love life, to celebrate the blessings of a new day. I want them to dance, to sing, to learn, to explore, to challenge themselves, to cherish everything that makes their hearts soar.

To that end, I have embraced Emma Sage and nurtured her from home. We opted out of outside early intervention services.....mostly because I saw the structure of the sytem to be foreign to what I was comfortable with. I never saw Emma Sage as being broken and needing to be fixed.

Loved, nurtured, encourage, taught, stimulated, just the same as her siblings have. Providing the 'freedom to roam'.........and I am the one who learns lessons everyday......life is truly a blessing and I'm so thankful for my little sage to help me see the way....my sweet, Emma Sage.

Stone Soup......

Emma Sage has been quite the busy little girl. So has her Momma, so here are two little clips of her cooking some soup the other day.........Stone Soup, and boy was it yummy!



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Amazing.....

I have always been in awe of talent. What a blessing to recieve special GIFTS and use those gifts to create. Whether it is painting, drawing, photography, writing, singing, gardening, sewing, Mothering.........when a GIFT is used, I am always amazed.

Here is a link that someone posted on the DSList.

I know you will be as amazed by this gift of talent as I have been.

Click Here to see Amazing Hand painting art............WOW, what a incredible gift!

Also, here is a link to the artists website [.Guido Daniele]....I'm just sitting in awe of his incredible talent. So cool.

National Down syndrome Congress

*~*~*~*~*~*~*~*~*~*~*~*~

After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:


FOR IMMEDIATE RELEASE

Contact: David Tolleson
770/604-9500 January 23, 2007

ATLANTA - The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.

The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.

Among the concerns cited by the medical doctors comprising NDSC's Professional Advisory Committee:

The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in "at risk" pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.

Based on ACOG's figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.

All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual's wishes and not overtly or covertly pressure patients to undergo undesired screenings.

Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG's recommendations do not address this situation, nor how it will be corrected.

Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.

Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.

NDSC Executive Director David Tolleson notes that "Down syndrome is a serious diagnosis; however we have seen families thrive." "We empathize with obstetricians who fear 'wrongful life' lawsuits," Tolleson adds, "but the cure for that problem is tort reform, not preventing the births of a whole class of people."

Jeff Mattson, a man with Down syndrome, agrees: "People with Down syndrome want to live life to the fullest."

According to Tolleson, "the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child."


*~*~*~*~*~*~*~*~*~*

I know now where to send my donation dollars. Thank you NDSC for taking a stand for our children and all people with Down syndrome.

Life is truly a blessing...........and Little Miss Emma Sage is living her life to the fullest!

A Tea Party.....

"Life itself is the most wonderful fairy tale." ~Hans Christian Anderson

Emma Sage had sent a Fairy Tea Party invitation to her friend Devany. The date was set for last Monday, but sadly, Devany was ill.

All week my little girl patiently waited till Saturday, till her friend would come over for tea!

Here are a few pictures of two little girls enjoying an afternoon spot of tea and friendship!


'Would you like a spot of tea my dear?'




Ah, the Joys of Friendship!



What a glorious day.....thank you Devany for coming over to play!

Golly What Did Jon Do?

The Attack on Kids With Down Syndrome
By George F. Will
Newsweek

Jan. 29, 2007 issue - What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.

Born in 1972, Jon has Down syndrome. That is a congenital condition resulting from a chromosomal defect that causes varying degrees of mental retardation and some physical abnormalities, such as low muscle tone, small stature, a single crease across the center of the palms, flatness of the back of the head and an upward slant to the eyes (when Jon was born, Down syndrome people were still commonly called Mongoloids). There also is increased risk of congenital heart defects, childhood leukemia and Alzheimer's disease. Down syndrome, although not common, is among the most common congenital anomalies—47.9 per 100,000 births (compared with 77.7 with cleft lips or palates, which also can be diagnosed in utero, and which sometimes result in abortions)................................[please click here to read the rest of this wonderful column]


I've been writing my piece regarding the new ACOG recommendations. It is titled 'Seek and Destroy' and it recounts my experience with the "NEW" recommendations and the "INTENT" of the sonographer we had who was intent on intentifying my child with T21 and how appalled she was when we showed up back in her office at 38 weeks gestation and "STILL" pregnant.

Life has been very busy of late [Rick is in Costa Rica] and the children are busy, busy, busy....hence, so is Momma!

OpEd ~ Siblings

My brother with Down syndrome spreads kindness
By Melissa Hart
Published: Wednesday, January 17, 2007

My 31-year-old brother has Down syndrome and lives at home near Los Angeles. He stays with me a few weeks a year to give our mother respite from chauffeuring him to Special Olympics, to movies with friends, and to either of his two jobs if he fails to catch the bus.

"I miss him," she tells me when I call from the Eugene Airport to say that he's arrived safely, if not entirely sober (Horizon Air offers complimentary microbrews).

"Live it up," I remind her. "He'll be back in a week."

Gail Udell, co-president of Emerald Family Down Syndrome Network, notes in a Jan. 11 letter to the editor that the termination rate for prediagnosed, prenatal Down syndrome is 80 percent to 90 percent. I watch my brother haul his suitcase off the airport carousel and wonder how my life would differ without him. He waves to the couple he's been sitting with on the plane....................

Apodechomai

Apodechomai is the Greek word for Acceptance ~ Which means :

"To receive heartily"; "To Welcome by deliberate and ready reception what is offered."


Mama Says Om has this very special word as the word of the week to reflect upon......so I reflect upon this image of Emma Sage.

"By The Grace of GOD, I am what I am"

If you could use one word to describe what you see when you look at me, What Would It Be?


The word I would love to hear is..........Apodechomai ~ Acceptance


Acceptance I ask? YES, Acceptance.


Now take a moment and think. Would Acceptance be a word you would use when you look at me?


What a beautiful world it would be if everyone accepted me!



Sadly, that is statistically not true......for you see, over 90% of woman who find out that they are carrying a baby just like me choose to terminate my life before I am even born.


That is not Acceptance, that is Eugenics.


So please take a moment and think about the word Acceptance, as it is a very important word to someone whom society does not deem fit to be allowed to be born.





"It's when we're given choice that we sit with the GODS and design ourselves." ~ Dorothy Gilman


Choice is a spiritual gift......there is no more precious a gift than free will.

So Mom, what are you telling me?

So Mom, What are you telling me????



That these two birds are my, what? Dinner????


You are joking??? Aren't you? {Look at that face!!! lol!}


OK, so you are NOT joking........and now I have to pick them up and do WHAT?


Hey, this is not soooooo bad,,,,and you are quite the cute little bird, aren't you?!?


OK, Bird, it is you and I...........

And Emma Sage helped her Momma pluck them, and dress them and roast them.....and eat them. Yum!!!!!

Me and my Girls.....

What a lucky Momma I am, to be blessed with three beautiful and precious girls.


This was taken on Christmas Eve, at my sister Patti's. It was such a difficult evening, as My Mother was such a huge part of our lives....and Christmas Eve was one of her most favorite family times.

My father gave all of us girls a golden heart locket with an Irish clover in the center and the open locket to place a picture of Nana.

Emma Sage wears her heart and tells me that she is 'Wearing Nana's Heart Forever and ever'

Did you know?

Did you know I'm a Hip Momma?

Yup, I'm a Crazy Hip Momma, have been one for quite some time now. I actually have been a Hip Momma since the 80's, twice in 90's and once in the 2000's......wow, that is a long time of having babies. I wore my babies....back when people gave you weird looks, as you little one is snuggled in the sling [most likely nursing....now those were weird looks!] Today, I'd join the ranks of all the stars who are wearing there babies....she it really is a Hip thing to do!!!

But if you asked my kids if they thought I was a Crazy Hip Momma, they might agree to Crazy, but Hip....well, you will most likely be greated with a good belly laugh.

I don't have a cell phone [this to my children makes me living amongst the dinosaurs and very un-hip]....but in actuality, I do own a cell phone, as I have a monthly bill to prove that point. But the cell phone has been commandeer'd by Greta, as her sports schedules, club activities and social calendar [would make even the busiest butterfly's head spin] calls it her own....and that makes perfect sense, as I'm always home [waiting for her call] to come pick her up at her next activity.

So I think that if I were to win the Crazy Hip Blog Momma's nifty, out-of-sight PINK Nintendo~DS Lite my kids just might not fall over laughing at the thought of their Momma being Hip....they would smile and say "That's my Crazy Hip Momma and you should see her play tetris!"

Rubba-Dub-Dub

Rubba-Dub-Dub.......Look who likes to jump in the tub!

Yup....Lucy!

Emma Sage thinks it is the funniest thing.......the dog will stay in there the whole time....and as you can see, it is Emma Sage's rubber-duckies that she is after [also I think she likes the warm water, as she actually swims around!] too funny!

Do you have a crazy pet?

Bringggggg.........goes the phone

"Bringgggg....."goes the the phone

"Hello, whose calling?" is how Emma Sage answers [I knew it was Daddy as I saw the caller ID

then I hear.....[which melts my heart]

"Daddy, I'm home, where are you?"

"Savanah? Why Daddy?"

"OH"

"Daddy, you come back home to me?"

"OK"

"Bye Daddy.....kissing the phone"

"I love you SOOOOOOOOOOOOOO MUCH"

and then she hangs up [without letting me talk!] That little stinker

So I call back.

Can you say precious! This child just melts my heart, and can you tell she truly is a 'Daddy's Girl'

This little girl just loves to dance.....

Emma Sage has been dancing since she was 3......first at Ms. Denises studio and now at Broadway Bound.

Last week we were allowed to look through the two way mirror......and these are the images that I was able to catch of my sweet little dancer.....


Sweet little feet!


Mommy, can my kitty come to class?


This smile just melts my heart....

Waiting to put on her tap shoes....Emma Sage is really working hard on tieing her shoes....too cute.




tap,tap,tap




She smiles from beginning to end....



May Always Dance Little Girl......May you Always Dance!

From the Hearts of Others.....

This is Emma Sage's most favorite Christmas gift......



This very special gift arrived on our doorsteps, the night before Christmas.....A gift given out of love.

After my frantic search for Emma Sage's newest [I mean the only thing she was asking for from Santa] list item....an ELMO [ you know Mom, the one that laughs and laughs] I was contacted by a Mother of a new little one on my Trisomy21online board.

She said she told her Mother my story about Emma Sage's newest, impossible, request and her Mother just laughed and laughed.

The next thing I know, I am gifted with the most wonderful gift. My friends Mother became my missing Mother and got the Elmo for Emma Sage.

I can't begin to tell you how touched I am by this gesture.

From the kindess of others.....what a glorious world we live in. Thank you!

In Loving Memory......

I met Ms. Denise when Katrina and Greta took dancing lessons at her dance studio, Dance Sensations, in High Bridge [the little town I grew up in and where my Dad still lives.] She was a dynamic person and always had a smile on her face.

As years passed [and my girls traded their ballet slippers in for cleats, basketballs and field hockey sticks] I would meet Denise out-and-about.

We both followed a local band [CAIRO] and would meet up at various bars, like the Long Valley Pub & Brewery and Pattenburg House, and dance the night away. Denise was always so full of joy!

Years roll forward, and after a few years of not having our paths cross, I come to find her without realizing who she was, and it was all because of Down syndrome.

When Emma Sage was 3 and she was registered at Dance Dynamics in Long Valley, I just registered her. She and her bestfriend Claudia were registered and attended class together. After the second class, the instructor came up to me and said that she couldn't teach Emma Sage. When I asked "why?" she said "We just don't teach children like her."

I was dumbfounded and quite upset. I didn't know what to do or say, so I just left. Of coarse, on the way home I thought of every advocacy thing I could have said ~~~ and a few unpleasant thoughts too!

But by the time I got home, I realized that I was not going to fight this type of prejudice, I just didn't have the energy or the desire to fight to keep her some place where she was not wanted.

I called a friend, who suggested I call a dance school at the Glen Gardner Youth Center, who she knew had a few girls with T21 in their classes.

I make the call and right off the bat, explain that my daughter has Down syndrome and that her school was recommended to me and did she think she could enroll my daughter [and her friend, as Claudia's Mother refused to stay at the old school].

She said, "Of coarse....to not would be disgraceful". After a few more minutes of details, she tells me the name of her school 'Dance Sensations'....to which I say "Denise Alexander?"

We chat for a bit and low-and-behold, guess who also has a daugher with T21? Denise [who married John from the band we both loved] had a little girl two months younger than Emma Sage, Anhay who was also born blessed with a little extra!

Fate.....what an amazing thing!

So, tonight I put on some music and danced........

As Denise just loved to dance.

Denise loved to smile and she made all she met feel like they were the most amazing and special person in the world.

We will miss you dearly........and may you always dance!

******************
Denise Alexander Male
Denise Alexander Male, 48, of Stroudsburg, passed away in her home on Saturday, January 6, 2007, after a long illness. Born: She was born in Greenville, Pa. Personal: She was a devoted wife, a loving mother of four and "Mama" to many. She was a dancing diva who enlightened every soul whose path she crossed. She was inspired to follow her passions by loving parents, Norman Alexander and the late Rozell Alexander. An early love for dance paved the way as she twirled through Greenville High School and pirouetted into a Bachelor of Arts degree in dance and liberal arts at Denison University. After college, she tapped her way into a successful career as a dance educator, teaching at theater workshop for 25 years. She launched her own successful studio, Dance Sensations, in 1994. She performed in the New Jersey Tap Ensemble and the Mock Turtles Marionette Company, founded a dance program at Blair Academy, served on the board of Warren County Community College, acted as president of Norwescap, collaborated with Arts Genesis, directed the Northampton Martin Luther King celebration and was a dedicated member of Shiloh Baptist Church. Survivors: her husband, John; her father, Norman and step-mother, Miss Charles Hampton; her children, Kenya, Anwar, Anyah and Jonathan; as well as by Nana Banks and sister, Doretta Bryant. Services: 11 a.m. Wednesday in the church, Easton. A viewing will be held 6 to 8:30 p.m. Tuesday and 10 a.m. to time of service Wednesday in the church. Arrangements are under the direction of Robert W. Snyder Funeral Home, Riegelsville, Pa. Memorials: to Shiloh Baptist Church, 403 Pastor Fred David St., Easton, PA 18042. Published in The Express Times on 1/8/2007.

The Value of a Human Life.....

Prenatal test can't measure the value of a human life
Christine Fraizer

The prenatal test that doctors are recommending to detect Down syndrome has me running horrified to the keyboard. My son has Down syndrome and I am afraid the tests, which doctors want all pregnant women to take, will end the lives of individuals before they begin. And it's all out of fear. This is not a pro-choice, anti-abortion issue to me. I am fairly liberal in my thinking and would never condemn a woman for her choice to end a pregnancy. This is about my love for my son and the way some may perceive him................................


Please read this wonderful article......the author, Christine Fraizer, touches upon my feelings on this topic so eloquently. I'm pro-choice, pro-educated and compassionate choice. I fear that my daughter is part of an amazing group of human-beings that will become extinct....at the hands of our medical community.

Emma Sage is a radiatant and amazing little soul......she has so much value and worth [just as we all do] and to think that one would kill a little soul just like her because of a prenatal test that measures her neck fold. Which by-the-way, Emma Sage's was 3.6mm [0.1mm over what is considered 'normal']

Anyway..........please read this article....it is wonderful!

C*O*N*G*R*A*T*U*L*A*T*I*O*N*S

Congratultions to Katrina. She is one of SIX winners in a 'Pay it Forward' scholarship essay contest, sponsored by radio station WPST and New Jersey CURE

Over the next six weeks, one essay will be read from one of the SIX winners. At the end of the six week program, all SIX winners will be honored at a reception in Princeton and awarded gift/gifts. At the reception, one winner will be awarded the grand prize....$25,000 college scholarship [oh what a blessing that would be!]

The Essay to nominate Katrina, will be read on-air, on Monday, January 8th between 6am-10am.

94.5WPST which broadcasts across New Jersey [into NY and PA] and the station we always have on the car radio [you know, it is the 'coolest' teenage station around!] I must admit, I listen to 99.9 the Hawk [which to my teenage daughters, plays the OLDIES!!!..........now, I thought the OLDIES were the music of my parents generation,,,you know from the 50's]

So I have been wondering [How did I get to be a hip-Momma listening to an OLDIES station!] lol!!

Anyway.....Katrina has a big interview in the next two weeks and we could use all the positive thoughts and prayers....as this scholarship would truly be a big blessing in her life.

Katrina's essay and, volunteer work of coarse, have been inspired by her little sister. We are so proud of the work Katrina does and how she inspires others to see people for their abilities and not focus on their disabilities.

I know that there is so much in the news these days about 'pre-natal' testing and Down syndrome and one point always seems to come up "How will having a child with Down syndrome IMPACT our other children".....

Well, Katrina [and Greta and Otto] are living proof that having a sibling with Down syndrome is a very positive thing and a gift that has allowed them to spread their wings and fly!!!! My children are such amazing young women and little man due to the fact that they have a special bond with their sister....a sister that has given them a voice and spirit that they might not have found if it were not for this gift of an extra chromosome.

Spreading Good Will.....

The Voorhees Field Hockey team had an amazing year....the girls won all of their division and conference championships and came in 2nd place in the State final.

In the Spirit of the Season and a way to count their own Blessings, the team purchased items for the Hunterdon County Youth Shelter as a way of giving Thanks for their Blessings. The Youth Shelter is a home for teenagers between the ages of 12-17 who have a journey that is much more difficult. The girls realize their blessings and wanted to reach out and give thanks for the shelter, as it is a safe-haven for young people who need a place to stay......

Here is a clip of Greta and her cousin Erica [and two team-mates, Lara and Tori] after they brought the gifts to the shelter and got a tour.

Merry Meadow Music Maker......

Emma Sage just wanted to share this with her friends......it is a fun little music activity!

Merry Meadow Music Maker [just click on the link]

Have fun....it is a snappy tune that gets stuck in your head! [Don't say I didn't warn you! lol!]