Tugging on the heart-strings

As a Mother, there are times that you just pause and think 'my heart is going to break apart'......

The other evening, I was on the computer in Greta's room. Emma Sage was cuddled on the bed with Greta just chatting away and watching T.V.

Great and I were talking about 'College' and doing searches of different schools that Greta might like to look at this summer and next fall.

Hearing our conversation about Greta going off to college, Emma Sage sits up and gets real serious and then starts to cry.....

Greta leans over to hug her and asks her "What is wrong?" [since this came out of now where as they were just giggling and chatting a few moments earlier]

and Emma Sage says "I DON'T want TWO sisters away at college"

awe.....now that is a way to break a Mommas heart, as you know that it is going to happen. In a year and half, Greta will be off to her freshman year of college and Katrina will be starting her junior year.....and both her sisters WILL be away.

I really don't want to think about it....as I know this little girl will be lost. She thinks of herself as a teenager, and her sisters are her bestest friends.

Thank goodness for cellphones and the Internet....they can stay in touch much easier than we were able to when we were younger.

When you wish upon a star.....

Emma Sage loves the night-time sky. So do I.

We watched the lunar eclipse the other night.....reading books [I had taken out a bunch of different books at the library last week that had the 'moon' as their main topic] and then did our own 'science' project with a flashlight and some balls to show her exactly how the moon was getting 'covered' by the earth.

So tonight, we were outside and she looks over towards the east to see the moon [last nights moon rising was just beautiful] and it is not there yet. She looks up into the night sky and exclaims.......

"A shooting star....I see a shooting star"

As I turn to look up, she proceeds with:

"I have to make a wish upon the star" she then clasps her hands in prayer and says

"I wish I was not afraid of the big wolf"........I had to hold in my giggles....as she was so very serious.

She has had this obsession with the 'wolf' since we went to the symphony the other week to see 'Peter and the Wolf'....and the costume the boy wore who was the wolf, was quite amazing....and a bit ~ scary.

So, now I am hoping that that lucky star grants her her wish......as little girls should not be afraid of the big, bad wolf!

Traffic......

This child always makes me smile:

The other day we were heading to New York City.....listening to music, talking. We get off of the turnpike and 'bam'...Traffic.

I say "Oh no, we hit traffic"

a few moments later I get a question from Emma Sage.

"Mommy, what is traffic?"

I turn back to look at her, and her sweet little face is full of interest.

I explain that all the cars trying to merge together and get into on lane [and not moving] is traffic. She then asks me "How I hit it" to which I explain that it was just a figure of speech, that I really did not 'hit' it, but we approached it and are now stuck in it.

She is just so observant. We live in a rural area, and don't travel often in the car to congested areas, so she really did not know what 'traffic' was......

But now she does!!!!

On the Upside of Down

OK....I've been on YouTube [Greta has been showing me some of the funniest videos I have ever seen] and I decided to type in Down syndrome....I found this wonderful song and video created for the 2006 World Down syndrome Congress by one of Emma Sage's favorite performers, Fred Penner.

I am so looking forward to attending the 2009 World Down syndrome Congress in Dublin, Ireland [the home of my beloved Mother]

BELONG

My dear friend Betsy over at, Bits of Betsy, has a MeMe she posted, tagging all of us in the Down syndrome communtiy.

I have been working on writing my post, but in the meantime, I encourage you to read her post 'JAKE' and to view this wonderful montage with a very important message.

Floor Hockey Season has begun!

Emma Sage just loves to play sports.

So we signed her up for Indoor Floor Hockey at the YMCA. Today was her first practice/game.

She had a blast....she knows 'hockey' from watching her sisters play Field Hockey, and she has great stick control from playing with her own little field hockey stick and ball...so on the floor today, she had so much fun!


This was the little 'pow-wow' they had before the game [just after their half-hour of instruction]


Tenacity....this little girl kept her own with all the boys....she was right there in the thick of it all......this was also her 'first' goal as the group of them got it in the goal at this point!!!!

Her favorite part was giving 'high-fives' after they scored [for her it didn't matter which team......a goal and she was all thumbs-up and high-five'ing it!!!]

and my favorite picture of the day........Pure Delight!!!!


So, you will know where we are for the next 8 weeks.....at the YMCA having a great time!

To the outside world, we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other's hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time.
~Clara Ortega

One of Emma Sage's favorite things to do....

Is to feed the Seagulls at a parking lot that is near where we go shopping.

Here is one that we took the other day from the car [it has been so very cold that we feed from teh warmth of the car].....a storm was about to roll through and the clouds made our pictures so very beautiful!

So please enjoy.........



We can lift ourselves out of ignorance, we can find ourselves as creatures of excellence and intelligence and skill." ~ Richard Bach 'Jonathan Livingston Seagull'

Victoria's Day....

This week, while we were at the library getting our weekly supply of books [Emma Sage takes out between 30 and 40 books a week] as part of our homeschooling curriculm to read.

We are using a literature based homeschooling program and we learn many of our lessons from the fast variety of books that we are blessed to be able to access at our local library.

As we were walking through the shelves of children's books, [up on the top of the shelves, the librarian always has a collection of books set up to look at and take] I hear Emma Sage exclaim.....

"Look Mommy, she is beautiful just like me" pointing up to a book on the top of the shelf.

We take it down to add to our pile, and I get this huge smile across my face.

This is the book that Emma Sage found:



It is called Victoria's Day by Maria de Fatima Campos

This book just made my heart soar, first because my daughter noticed right away the beauty of the child on the cover as possessing the same unique beauty she also possesses.

The second facet of the book that is amazing is that it never talks about Down syndrome or difference.....it is a celebration of a Day in the Life of Victoria [and the exact reason I have this blog for Emma Sage, to share with the world the Normalcy of Difference]. The last page has resources and information on inclusion.

So, please don't mind Emma Sage's bed-head in the picture, but she was so excited about her library find and we wanted to share!

Peter and the Wolf.....

Today, we met with my sister and her children to see the Hunterdon County Symphony and the Franklin Players perform Russian Music, including 'Peter and the Wolf'

Emma Sage enjoyed every moment of the performance [although she was a bit afraid of the wolf....who wore an incredible costume] and she stopped one of the violin players after the show to tell her how much she 'loved' the music and that she wanted to play just like her. Emma Sage is still learning the violin and with the way she beamed during the performance today, I know she has her heart set on being up on stage like that someday.

The Mother at the Swings.....

The beautifully written piece below came to me at such a perfect time, as this week I had a difficult week. I was sick, Emma Sage was sick, Otto was sick and a few of the children I watch were sick. So when I had a friend whom I thought was a rock, turn out to be a 'ginger-bread man' my heart became so heavy, but this piece helped me realize that not everyone 'gets-it' and sometimes if we are lucky, we will happen upon a mother at the swings.

~~~~~~~~~~~~~~~~~~~~~
The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home
drawing cartoons with my husband and I'm swinging my six-year-old son
Evan at the park. Evan laughs and giggles and with each wide arc of
the swing, his smile grows ever larger. The mother next to me smiles
herself and says, "Boy, he really loves that, doesn't he? I mean,
kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to
swing isn't the same reason her daughter, in the swing next to us,
loves to swing. My son loves to swing because he is blind and non-
verbal, because he has what is termed "sensory integration
dysfunction" and requires enhanced "vestibular input." Swinging gives
my son the kind of stimulation other kids, those who can see and talk
and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs
louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's
not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how
high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he
definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a
pound. His twin sister died four days after birth when we removed her
from life support. Evan was hospitalized for six months and came home
blind, with feeding difficulties, chronic lung disease and global
developmental delays. Soon after that, he developed a serious seizure
disorder and was on medication until his fourth birthday. He did not
walk until he was five, still does not eat anything other than pureed
baby food and formula from a cup, and has only a word or two --
variations on "muh muh" -- which he uses indiscriminately for "more"
or "mama" or "open." I have watched my friends' newborns become
toddlers and school-age children who can walk and laugh and talk and
read, all while my son continues to function at the level of a two-
year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow
only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a
handout, a road map for the potential reactions of friends and family
members to our new status as parents of a super preemie. Potential
support people came divided, according to the handouts, into the
following categories: the rocks, the wanna-be-theres, and the
gingerbread men. It warned us that people we might think were "rocks"
could unexpectedly turn out to be "gingerbread men." Just like the
story, they run, run as fast as they can from you when they hear of
your baby's birth.

I quickly found that the guide was right, that I was supported by
only one or two rocks, and that the rest of my friends and family
members had become gingerbread men. As Evan's disabilities became
more obvious, after he left the hospital and in the time that
followed, I found new rocks and said goodbye to the gingerbread men.
And I found a new category for the characters in the social worker's
handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her
observations, and why she pretends there is nothing different,
nothing dissimilar about her child and mine. All kids love to swing.
The mother at the swings would like for me to tell her what it's
like, how my son is different, and how he is the same. She wants to
know about the cane he uses, and the challenges of having a non-
verbal child, and how I manage to understand my son and communicate.
She'd like to ask, What does his future look like? And How are you
with all this?

She wants to know but she doesn't know how to ask. And so she tells
me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the
swings, and how to say it. To reveal the truth, graciously. To let
her in and help her understand. To tell her that yes, all children
love to swing, and my son loves to swing and the reasons are both the
same and different. That it's hard to watch her daughter, with her
indelible eye contact and winning smile, and not mourn for what my
son can't do. That some days my grief over my son is stronger than my
love.

It has taken me even longer to appreciate the mother at the swings,
to know that she and I have more in common than I once thought. To
know that her curiosity is a mother's curiosity, one borne out of
love and tenderness and a desire to understand a child, my son, one
who happens to be different. That she will listen and sympathize when
I offer my observations. That her compassion and thoughtfulness mean
she will take the knowledge I share and use it to understand other
mothers like myself, some of whom could be her neighbor, her cousin,
her sister, her friend. And, finally, that she wants to know so that
she can teach her own child, who also loves to swing, how to embrace
and treasure what makes us all different.