Saturday, April 26, 2008

May 1st.......please join in.....

Blogging Against Disablism Day

Blogging Against Disablism Day, May 1st 2008

Today I'm joining many other bloggers for Blogging Against Disablism Day hosted by Diary of a Golfish.

I have always tried to be an ‘aware’ human being. From the time I was little, I was ‘aware’ of differences, but also aware of ‘similarities’………to me, this is what makes life interesting.

So when my daughter Emma Sage entered into my life, I was aware of her ‘differences’ but also acutely aware of her ‘similarities’……and as life has moved forward…………..the differences and similarities have seemed to just blend together and I actually just see Emma Sage. So, that has been my mission in life, to see the whole person, not focus on their differences or their similarity…..but to see the person, for exactly who they are….the unique individual. I always thought I was ‘aware’……but as I travel this journey as Emma Sage’s Mother, I realize that I also have a long way to go to become fully aware. I try and I guess that is what I would hope all people would do, to try to live their lives ‘aware’ of others.

But I see…………..the looks, the trying to figure out exactly what it is about Emma Sage that is different. That is the most common experience we have had to date. That look……that double take. I can almost hear their thoughts ‘What is it about that little girl that I notice is different’…..another look. Sometimes a smile of recognition, other times a look of pity. The most common comment I get from strangers that do engage with us in conversation is “She must be very tired”……to which I want to say ‘No, it is just her sleepy looking eyes from her extra chromosome’…..but usually I don’t, I just smile and say nothing.

She has only had one blatant act of discrimination [and the way I look at it, one is one too many]. To this date, it still makes me sick to my stomach. When Emma Sage was three I enrolled her in a 3 year old dance class. I never mentioned that she had Down syndrome, as I truly did not think of it as being an issue. She has always behaved as any typical child, even at three. She follows directions, listens and was capable of performing the activity…….so the thought of mentioning her extra chromosome did not even cross my mind. At the first class, she and her best friend Claudia went joyfully into class. There were about four little girls that were just freaking out….crying, wanting their Mommies….but not Claudia and Emma Sage…they, along with the majority of the class stood at the bar, listened and followed the dance movements. Class ended, everyone excited with smiles. The following week, we arrive, the girls bounce into class…..they listen, they follow directions and they dance. On their way out of class, the teacher and director come up to me.

The director says “I’m sorry, but we don’t take children like your daughter.”

I was dumbfounded…..”Don’t take children like my daughter?” runs through my mind again and again. “What do you mean?” I ask.

The director begins to say that she is just not able to teach a child with Down syndrome. She continues on to say that she had ‘years and years’ of experience working with children with Down syndrome at the Midland School and that she just does not teach children like Emma Sage at her school.

I didn’t know what to say…..I was truly speechless.

On the way home, I thought of a million things to say……..but at that moment, I was broadsided by this blatant discrimination that I actually thought I was going to throw up.

I had two choices for my daughter…..I could fight this discrimination [and have her in a place that does not want her] or I could just find her a place that accepted her, for who she was. A dance school that saw Emma Sage, not her diagnosis. I chose the later and my little girl has been a dancer ever since…………and has been embraced and accepted for who she is.


As a Mother, I must advocate on behalf of my daughter, but I also need to keep in mind her happiness and what I believe is important to she ages, I know that she will have the strength to raise her own voice to advocate on hehalf of herself.....and I can only pray that the choices I made on her behalf when she was young are exactly the choices she would have made for herself.

Sweet Girl

The night before the tree incident, I took Emma Sage and her friend AJ to see Midieval Times dinner show.

I has so many wonderful images to share from this fun event, but will have to upload the pictures when I'm not so tired.

But I do have to say that Miss Emma Sage was in her element at the castle.....she was truly a princess. She curtsied to everyone she passed.....people were stopping to say 'hello' and the King of the show took a liking to her and treated her like she was truly his 'Princess'......

But this image is the one that really caught me, as Emma Sage is a very spiritual girl and always pauses to pray.....and this time I caught her on film praying......for the knight 'the Kings son' who got captured. She was very concerned and stopped to pray to GOD that he was safe.

Does that not just melt your heart?


By the Grace of God

On Thursday morning, the weather was sunny and beautiful, but the wind was a bit brisk.

It was like a slow motion horror film as I watched the random incident unfold.

Emma Sage was around back [we live in a bank house, so the front of the house and first floor of the house which is on the ground level out front, is actually the second level around back. She was back hula-hooping [like you couldn't guess that was her current favorite past-time these days] and I was standing on the front walkway, waiting for Ben to get off the bus.

Our neighors down the field had a big dump truck picking up building debris [so there was noice and some loud bangs coming from their house]......the wind had picked up and was quite brisk.

All of a sudden I hear this very loud noice......a creeking. I quick turn towards the neighbors house to see what could be making that noise, and as I'm looking I realize that it is coming from the huge Sugar Maple next to our porch. The noice was so loud, but I could not fathom exactly what was happening, as I saw nothing moving....just hearing what soundled like a huge wooden board being smashed. I look over and there is Emma Sage hula-hooping and looking up in terror.

A third of the tree gave away in the woods [and under the weight of all the blossoming leaves] and was heading right towards where Emma Sage was playing.

My heart stopped and I screamed......


At this point I could not see Emma Sage, but just witnessed the tree falling exactly where she was standing.

By the Grace of God she was I saw her crying hysterically and escaping the branches that surrounded her.
This is the view that I watched......I was standing exactly where I am when I took this picture later.......Emma Sage was down a level right smack in line where the tree fell.

Thank goodness she was down a level, as I believe that [and the angels who surrounded her] are what saved my little girl from an unspeakable accident.

Emma Sage came crawling out of all these branches up towards me.....crying.

When she got up to me she said "My heart is Beeping"......

I can just imagine how hard her heart was 'Beeping'.....

and here is where my little girl was hula-hooping as the tree came crashing down around her........
It was a like a halo that surrounded her, keeping her safe.

The pile of wood that Rick cut up as he was trying to clean up from this freaky accident.

All I can say is that I am so grateful that my little girl was safe and unharmed.....

and that it took 10 years off my life watching the events unfold.

Doing the Hula Hoop

This has been a crazy week, and I wanted to post these last weekend when I took them, but needless to say, the week got away from me.

If you want to take a little walk down memory lane, you can click this link and scrool down towards the bottom so see images of Emma Sage the first time she figured out to Hula-hoop three years ago.....this was a big day for her, as she tried and tried all summer long to get the hang of it and she finally got it.

The kid has been hula-hooping ever since.

Last weekend she was busy hula-hooping and I took some current pictures of my little girl.....boy is she getting big compared to the little nymph who first learned so many years ago.

and as a foreshadowing of the events to come later in the little girl and her hula-hoop had angels watching over them.

Here are a few of my favorite from our time together last weekend just hanging out and hula-hoopin'

I love watching her go, as she makes the cutest faces when she is concentrating.

Like her tongue sticking out to give her balance! lol!!!

Hula Queen
My little Hula-Queen

Sweet, sweet girl, we love you so!

Hula Hoop.......

Photo Sharing - Video Sharing - Photo Printing - Photo Books

(Donna Kohler / Carl Maduri III / J. Testa)

Georgia Gibbs - 1958
Teresa Brewer - 1958

Hula hoop, hula hoop
Anyone can play the hula hoop
Hula hoop, hula hoop
Anyone can play from three to a hundred and ten

(Hula, hula, hula)

From LA to New York, from Georgia to Duluth (Hula hoop)
Everyone is playing with the hula hoop (Hula hoop)
A-red ones and the green ones, yellow, white, and blue (Hula hoop)
Young and old, rich or poor, are spinning them too

(Hula, hula, hula)

Hula hoop, hula hoop
Everyone is playing with the hula hoop
Look at them spin, tryin' to win
Anyone can play from three to a hundred and ten

(Hula, hula, hula)

Oh, what fun to see them run
And to see them sway (Hula hoop)
Trying to keep the hula hoop
From, ah, slippin' away (Hula hoop)

Now if they rock when they should sway,
It would fall to the ground (Hula hoop)
Then again, once again
The hoop spins around and 'round

(Hula, hula, hula)

Hula hoop, hula hoop
Everyone is playing with the hula hoop
Look at them spin, tryin' to win
Anyone can play from three to a hundred and ten

(Hula, hula, hula)

Hula hoop, hula hoop
Everyone is playing with the hula hoop
Look at them spin, tryin' to win
Anyone can play from three to a hundred and ten

Saturday, April 19, 2008

Infinite Possibilities......

My creation

At birth your children are filled with possibilities.
It is not your job to limit these possibilities.
Do not say, "This and that are possible for you.
These other things are not."

They will discover on their own what is and is not
It is your job to help them stay open
to the Marvelous Mysteries of Life.

~ The Parent's Tao Te Ching by William Martin

I took this yesterday afternoon before Otto's baseball game. I am so lucky that this little girl is willing to allow her Mother to dress her up and take her to interesting settings to shoot photographs.......she knows that this is her Momma's passion and she is more than willing to assit me in my creating.

I fell in love with many of the shots that I took, but this one had touched me, as she is so little against the background, but she is also very confident in her being.

Infinite Possiblities.......

So today, on Trisomy 21 Online, I saw that the Governor of Alaska welcomed a new baby into her family.....a precious little boy named Trig Paxson Van Palin.

Here is a link to the story: Gov. Sarah Palin gave birth to her fifth child at 6:30 a.m.

and looking upon the picture of sweet Trig, I caught a glimpse of the magic of my Emma Sage.....and I was also so very touched by his parents announcement of his birth:

"Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

What a blessed child he is to be welcomed into the hearts of his family unconditionally and with great joy!!!!!

and it got me thinking about this image of Emma Sage on the shore of the resovior and the quoted text about Infinite Possiblities.....

Trig has infinite does every one of our children, and as parents and as a society, we need to realize that our children need to reach for those dreams, to be given the opportunity to try and be supported along the way and embraced for the unique people they are.

We are all filled with infinite possiblities........and that is such a glorious thing!

Thursday, April 17, 2008

The wonder.....

Springtime, what a glorious time of the year.....everything is blossoming and blooming and there are lots and lots of little babies to marval at.

Emma Sage was just captivated yesterday at Ms. Bonnie's farm watching the newborn babies of every shape and bunnies, new goats, new calfs, new horses.

When Ms. Bonnie asked the girls in her riding class what they should name the new born foal, Emma Sage replied 'EMMA'!!! I think we don't have a self-esteem problem at to make she she doesn't get too sure of herself!

Lost in thought

Where you lead, I will follow.....

Where you lead, I will follow

Wednesday, April 16, 2008

The joy of spring time....planting seeds


Package of Seeds

They can't see their pictures,
they can't read the label --
the seeds in a package --
so how are they able
to know if they're daisies
or green for the table?

It sounds like a fancy,
it sounds like a fable,
but you do the sowing,
the weeding, the hoeing,
and they'll do the knowing
of how to be growing.

Aileen Fisher


The Seed
by Carol Simpson

I'm planting a seed.
I hope it will grow.
I'll water it carefully.
And one day I know
That something will happen.
Just wait and see.
That tiny little seed
Will grow into a tree

Wordless Wednesday.....


Monday, April 14, 2008

Generation to Generation

Generation To Generation

In a house which becomes a home,
one hands down and another takes up
the heritage of mind and heart,
laughter and tears, musings and deeds.
Love, like a carefully loaded ship,
crosses the gulf between the generations.
Therefore, we do not neglect the ceremonies
of our passage: when we wed, when we die,
and when we are blessed with a child;
When we depart and when we return;
When we plant and when we harvest.
Let us bring up our children. It is not
the place of some official to hand to them
their heritage.
If others impart to our children our knowledge
and ideals, they will lose all of us that is
wordless and full of wonder.
Let us build memories in our children,
lest they drag out joyless lives,
lest they allow treasures to be lost because
they have not been given the keys.
We live, not by things, but by the meanings
of things. It is needful to transmit the passwords
from generation to generation.

Antoine de Saint-Exupery

Friday, April 11, 2008

There are times.....

There are times as a Mother, that your heart just pauses....filled with so many emotions, you're not sure if you can ever breathe again. Once your breath returns, your mind starts to race.....with many thoughts.

I happen to have these 'Mothering' moments often with Emma Sage.......I have them with all of my children throughout the years, like just recently ~ when Greta was inducted into the National German Honor Society....or realizing that Katrina will be finished her first year of college in two weeks, or watching Otto go off with friends to clean the garbage from the sides of the road [as he and his friends really care about their enviroment and are picking up after others who litter]....moments when you realize that these little beings that were born of your heart and are now out in the world, doing their thing.

This image was one I took the other I sat off in the distance watching my littlest girl at her riding lesson.


Tears started to roll down my cheeks, as I watched my little girl in her group lesson, independantly riding her horse, following directions and at the same time, giving directions to her horse to follow. She moved her horse, weaving in and out of cones.........brought him to stops....started him to go....and even trotted, all on her own commands [after her teachers instructions]. And here I am with tears streaming down my face. My heart flittering and trying to remind myself to breathe........and this image of my little girl off in the distance, doing her thing!

and this image says it all......Ms. Bonnie just adores Emma Sage [and Emma Sage just adores Ms. Bonnie]. A teacher who believes in Emma Sage and is helping her be the best she can possibly be. Thank you Ms. are giving Emma Sage one of the greatest gifts possible, the gift of believing in herself!


Wednesday, April 09, 2008

Wordless Wednesday.....


Locks of Love

Today, Emma Sage had her first 'official' haircut and donated her hair to 'Locks of Love'

I donated 19 inches of hair in December and Emma Sage was so excited about the whole process......and told me that she also wanted to donate.

Her long braids at the beginning.....

All combed out and waiting for the 'cut'

The pony-tail....she thought this was funny, as she had just had her riding lessons before the hair appointment.
The cut.....she was giggling when Lisa cut it!
Her donation!!!! What a sweet pony-tail! Emma Sage's hair is just so soft!

Getting it trimmed up.....

Lisa put a ribbon in her hair and Emma Sage thought she looked like Snow White.....

My sweet little girl and her new 'do'...........isn't it adorable?!?

Tuesday, April 08, 2008

Melissa Riggio.......

It is with a heavy heart that I share this post from a friend:

Melissa Ann Riggio, 20-year old daughter of our CEO Steve and his
wife, Laura, and sister to Laura and Christina. Melissa passed away
peacefully this morning, Monday, April 7, at 6:00 a.m. at University
Hospital of Columbia and Cornell in Manhattan. She was surrounded by
her parents, sisters, aunts and uncles, and cousins. There will be a
funeral service on Friday in New Jersey. Details will be forthcoming.

As so many of you know, Melissa was diagnosed with leukemia last
summer and since that time she fought long and hard to overcome the
disease. Last June, she graduated from Bernards High School in
Bernardsville, New Jersey, where she was crowned Prom Queen. Melissa
was so grateful to the many people who reached out to offer their
support by donating blood, platelets, and sending cards and letters.
Through it all, Melissa remained strong and optimistic. She was an
inspiration to everyone who had the opportunity to know her.

Although Melissa was born with Down Syndrome, she lived a full and
extraordinary life. Melissa worked at the YMCA in Bernardsville and
recently talked about entering a post secondary program so that she
could become a counselor at the YMCA. She loved to read and listen to
music, and she loved to write. Melissa was a poet and songwriter.
Melissa was taking voice, drama, and dance lessons as she also
aspired to become a singer one day. Some of Melissa's songs were
recorded by singer/songwriter, Rachel Fuller.

In her song entitled, "The Ring," Melissa expresses her thoughts on
being a woman and her purpose:

I'm in the Ring outside
I'm following my belief
I'm looking at the sky
I saw God following my heart
I'm an ordinary woman

The Ring is falling down my way
The wind is blowing me away
The Ring is falling down,
Down my way
The wind is blowing me away

And so I came back to
The center of the Ring
Am I just a broken angel?
God has sent me here to heal
To be an ordinary woman.

Love is a Potion

Love is everything
Love is all around
Love is not hopeless
Love is passion
Love will not stop
Love is an ocean

~Melissa Riggio

Here is a wonderful article about Melissa and her father Steve that I had posted last year.
Message Born of Hope and Dreams

and a link to her song with Rachel Fuller

The Ring

Emma Sage and I got to meet Melissa last year, and my heart, mind and soul can not fathom the pain her family and friends are feeling....I know that those of us in the Trisomy 21 Community will feel her she was an amazing gift of a human being and an incredible advocate for all people with Down syndrome.

Melissa loved the YMCA [as does my Emma Sage] and tonight we have our swimming class at the Hunterdon County YMCA.......not too far from the Y that Melissa loved to attend.

All of our loving thoughts and prayers to the Riggio's and everyone whose life Melissa touched and enriched in her short 20 years.

Rest in Peace Melissa......Rest in Peace


Here is a beautiful piece on Melissa's life that was written by Pamela Wilson, one of the greatest 'Mother' voices out there writing about life with a child with special needs:

Melissa Riggio Made a Difference