A must read......

Posted on First Things:

By Amy Julia Becker
Monday, March 31, 2008, 6:24 AM


I remember how I felt two hours after my daughter Penny was born, when I first found out that she had Down syndrome. I sifted through my brain for some scrap of information about this “thing” that had just happened to our family. All I could come up with was early death and mental retardation. The doctors didn’t help much. In the hospital, we received a list of all the things that might go wrong with our baby–heart defects, leukemia, Celiac disease, developmental delays. Despite the hundreds of thousands of people with Down syndrome in America, even the medical professionals didn’t seem to know much about it.

Penny is two years old now, the initial shock and fear of having a child with an extra chromosome has worn off and I’m pregnant again. Yesterday morning, a colleague stopped me, “I didn’t know you were expecting!” she exclaimed. I grinned and patted my round belly, “Hard to miss. I’m at the halfway mark.” I opened my car door with the intention of driving away. But she continued, “I assume you’ve done all the screening on this one to find out, if, you know . . .” We went on to talk at length about the various prenatal tests I could undergo. I tried to explain why I wasn’t opting for an amniocentesis, why I was somewhat uncomfortable with the prenatal testing industry in general, and why I wasn’t particularly concerned about having another child with Down syndrome. But she didn’t seem to understand. ..................................

Please click the above link or here to read the whole essay.

Friendship

A friend is someone we turn to
when our spirits need a lift.
A friend is someone we treasure
for our friendship is a gift.
A friend is someone who fills our lives
with beauty, joy, and grace.
And makes the whole world we live in
a better and happier place.

- Jean Kyler McManus

These pictures say it all.............friendship, a very special gift!

Grateful......

My friend Christine does a weekly piece on her blog called 'Grains of Gratitude'.....and I always love reading her posts, as I too, am so grateful everyday for the day I have been given.

The word Grateful, or Gratitude makes me think of my Mamie, as she is the most gracious woman I have ever met. She has taught me that being grateful is one of the greatest attributes we can hold.

So, as my Mamie has been getting older and time is beginning to take its toll on her physical body, I am reminded of this word......Gratitude.

On Thursday, Greta, Emma Sage and I [and Brooke the little baby I watch] headed down to visit with Mamie, as over the last few days it had been getting very difficult for her two swallow.

As I sat with Mamie and talked, I was reminded over and over again how blessed we have been....how our lives have been filled with such unconditional love....a family that shares a bond of love.

Emma Sage adores her Mamie [almost as much as I do] and I took this picture of the two of them together.




as we rode home in the car, I played this song by Art Garfunkel..........

I've got a roof over my head
I've got a warm place to sleep
Some nights I lie awake counting gifts
Instead of counting sheep

I've got a heart that can hold love
I've got a mind that can think
There may be times when I lose the light
And let my spirits sink
But I can't stay depressed
When I remember how I'm blessed

Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful

In a city of strangers
I got a family of friends
No matter what rocks and brambles fill the way
I know that they will stay until the end

I feel a hand holding my hand
It's not a hand you can see
But on the road to the promised land
This hand will shepherd me
Through delight and despair
Holding tight and always there

Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful

It's not that I don't want a lot
Or hope for more, or dream of more
But giving thanks for what I've got
Makes me happier than keeping score

In a world that can bring pain
I will still take each chance
For I believe that whatever the terrain
Our feet can learn to dance
Whatever stone life may sling
We can moan or we can sing

Grateful, grateful
Truly grateful I am
Grateful, grateful
Truly blessed
And duly grateful

Truly blessed
And duly grateful.


Mamie....we love you dearly and are so grateful we got to see you on Thursday.

Sisters....

Emma Sage has been missing her sisters, considering both of them are together in Florida. Greta and her good friend Kristen headed to Florida to visit with Katrina at college and spend Easter together....it was very strange to only have two children at home for Easter this year [pictures to be posted later].

Here are two pictures that Katrina shared with me this evening....after the girls went to Brunch [Flagler College did not have an Easter break, so many of the students stayed on campus because they had classes Friday and Monday and not enough time to travel any distance] and then they went to the beach and took some pictures.

I just loved these. It is so wonderful to watch your children grow into adulthood.......




I'll share Greta's pictures when she returns.

Emma Sage is sure missing everyone, as her Daddy is also away....in Argintina. She keeps telling me that she is first going to Florida and then to Argintina.

Ah, Spring is in the air.....

"Just living is not enough" said the butterfly,
"one must have sunshine, freedom and a little flower." ~Hans Christian Andersen

Ah, Spring is in the air and Little Miss Emma Sage could not be happier!

This child loves to be outside...she loves to play, explore and just 'be' in the great outdoors.

Yesterday, we went to the park with my nephew Connor, Otto and Emma Sage. The boys had their skate boards and Emma Sage wanted to skate.

Here are a few pictures from our day...


Peeking down from the tunnel at the playground at the park.


My little Skater Girl....


This kid just melts my heart!


Of coarse you know she is eyeing this ramp thing that the skateboarders have set-up


....and you know she is going to have to try it herself [she is fiersly independent and determined]




....and this smile says it all.......she is so happy to be outside!!! Look at how dirty she got between skating and swinging. She met two little girls on the playground equipment and they had a blast playing together. Everywhere this child goes she makes a new friend [or two]

Bunny Hole - Oldwick Magic Shop

We have been going to the bunny hole since Katrina's first Easter. It is a family tradition of ours....and sadly, this year two of my children were not with me on our outing. Katrina is at college and Greta and her friend Kristen when to Florida during their Spring break to visit.

So Emma Sage, Otto and their cousin Mikey and I all headed off to the Bunny hole on Friday [World Down syndrome Day] and had a great little visit. The original Bunny hole was so cool....you went up steps to the second floor of the shop and in the dark went through the hole and witnessed little vignettes that 'peeked' into scenes right out of Beatrix Potter.....the bunny family having tea.....the fox family in their little den reading books...etc. Then you went through a two little slides, ending on the big long slide [that is still part of the Bunny hole] but now [I assume because of fire codes] the whole is just a dark little room that has Vignettes in the middle and a few around the sides of the circular room.

All-in-all......it is still Magical and a wonderful outing that I know that Emma Sage will take each year in the spring before Easter arrives.


Running up to the Magic Shop.....excited to get to the Bunny Hole

Hello Mr. Bunny


Sliding down the Bunny Hole Slide


One of the Vignettes




Shopping for a treat....



off to pay for her treat...




Off to find the cashier, as the first place she checked was not the check-out.......Of coarse I can't 'help' her as she has to do everything by herself [go away Mom]




This woman was so sweet and started 'Chatting' with Emma Sage.....


Even getting down to Emma Sage's level to talk with her......Emma Sage was just enjoying all this attention and her being able to shop by herself!!!


All Done......





General Store for a drink and a sandwich.....


aCatch me if you can.........this is Emma Sage's favorite thing [well, one of her favorite things] to do......run and make me chase after her!!!!

March 21............World Down syndrome Awareness Day

3 Things About Emma Sage that you might not know: She has a witty sense of humor ~ She loves to sing ~ She thinks that Hannah Montana/Miley Cyrus is the coolest thing since sliced bread [her favorite line from the movie Annie]

2 Things that inspire me: How Emma Sage embraces life everyday and makes you think that today is the greatest day ever! ~ How much all of my children love and care about each other.


1 Thing I wish everyone knew: That living life with a child with Down syndrome is an amazing and magical journey.

and the greatest video clip in celebration of World Down syndrome Day

Andrew's Season

A Walk on the beach........on a March day [today the 16th of March]

"It was cold and windy, scarcely the day to take a walk on that long beach Everything was withdrawn as far as possible, indrawn: the tide far out, the ocean shrunken, seabirds in ones or twos. The rackety, icy, offshore wind numbed our faces on one side; disrupted the formation of a lone flight of Canada geese; and blew back the low, inaudible rollers in upright, steely mist." - Elizabeth Bishop, The End of March

I want my daughters jeans.....

How come they have the greatest clothes for kids?

I want Emma Sage's jeans, but sadly, I couldn't get them over my ankle!!! ;) as she is just so tiny......at 6 years and 10 months old, she is all of 43lbs........

Something interesting to think about......

As we prepare Emma Sage to head off to public school......yes, sadly, I have to return to work, so I must send my sweet pea to school, as I can't do both and homeschool her. [This is not to say that I won't continue to school her on top of school [co-schooling I call it] as I have done with all of her siblings.

So the topic of Retarding Environments has come up, as Little Miss is very quick to assess the situation she is in and if she feels those around here do not presume competence or hold the bar too low, she will play right into it and give them 'exactly' what they assume.

This came to play this week at two different events. The first was at her first Special Olympic meeting. She was paired with two lovely teenage girls, who began to treat her like she was a 'baby' and BAM......Emma Sage was seen doing a 'flop and drop' on the track....something she NEVER does with us, as she knows better. I had to have a little talk with the girls to talk to her as they would any six year old and to know that she is to never behave like that again [they were giggling and thinking it was cute].

and then today, off to floor hockey we went. This is a program at the YMCA, where all the children are just grouped by age [5 & 6 year olds]......and here, no one treats her any differently than any of the other children...they are all just five and six year olds learning and playing the game of floor hockey. Guess what....no flop and drop......just a little girl who plays and plays, listens to the directions, talks with the other children and is having lots of fun.

So, I have written Emma Sage's Mission Statement, I have ordered the DVD from Norman Kunc called INCLUSIVE EDUCATION: Rediscovering Our Right to Belong and when I head to our first meeting on April 3rd, I will make sure that all those who work with Emma Sage at school will Presume Competence.


The girls.....these three are the only girls in the league........out of 20 some boys [who play like they are professional hockey players and are going for the Stanly Cup] They all get along so well.

Waiting for the puck to come out to back up the front line.


Playing the game.......right there, intense and loving it!!!


I love this photograph....this instructor is so good with Emma Sage, he always encourages and helps her play her position.


This photograph was so neat, as the sun shining on the wall looked like an arrow pointing at my little player as she is bathed in light. She is getting ready to do the 'end of the game, hand smack'....which is one of her favorite parts of the game.

A funny thing....all the children treat her just as they do everyone else. In warm ups today, Emma Sage would get her turn and then go to the line...but instead of going all the way to the back, she would 'cut'....which did not fly for all the boy players on her team, who pushed her back behind them....all the way till she was at the end. It is so great to watch children figure it out. After a few pushes towards the back, Emma Sage figured out all on her own that she should just go all the way to the back on her own [or be put there by her teammates! lol!!!!]

and this one is a picture that just breaks a Momma's heart......

My little girl got wacked pretty good in the thick of the game and her coach was consoling her........needless to say, as soon as she saw the puck come back towards her, the tears dried up and she was off running and hitting the puck!!!

In Loving Memory.....

May the road rise up
To meet you.
May the wind be always
At your back.
May the sun shine warm
Upon your face.
May the rain fall soft
Upon your field,
And until we meet again,
May God hold you in the palm of his hand.
~Celtic blessing, author unknown



Today, many miles away, in the land of my Mother, her Mother, my dear Grandmother was laid to rest.

Mary Scully Linehan
May 9, 1915 ~ March 10, 2008

It is so difficult being so many miles away and not being able to be there. I know my beloved Mother was waiting to greet her Mother, who would have said "Philly, what are you doing here?" as my Grandma Linehan did not know my Mother had passed away. My Grandma Linehan had Alzhemiers and would not have fully understood, but would have grieved such a loss, as she asked about Philly all the time. Since my Mother had come to America in 1959, her Mother was used to 'Philly' being so far away, so when she slowly slid into the grasps of Alzheimers, Philly was still on her mind as she would ask how she was.....so everyone told her she was fine.

Rest in Peace Grandma.

I AM.......

My dear friend at Chewy Mom, alerted me to this video...and I just had to share it with you all!!!

Oh this child of mine.....

Miss Emma Sage is just 'too' much.

This evening, Greta, Emma Sage and I went to Targets after we dropped Otto off at basketball practice. [yes Katrina, she got a new bikini!!!]

On the way home, she had a package of a treat she was eating and proceeded to throw it towards the front of the car [for Greta to put in the garbage]....but she KNOWS she is not to throw anything, especially in the car while I'm driving.

So I feel a package come whizzing by my arm and land right near the gear shift [I have a 5-speed]

I say "Excuse me......You know you are not allowed to throw anything in the car"

to which my 'spunky' little girl replies....

"I didn't throw it....I TOSSED it!"

Roll-on-floor and pee-my-panties.

Can you imagine how hard it is to NOT laugh and continue with our discipline conversation!

I don't know what I am to do....she is just too darn smart, and way to funny and she loves to push my buttons!!

The Joy of Family

We went for a walk on Sunday with our cousins.......


Princess Fiona


Connor


Miss Emma Sage


Miss Kelsy



Sisters........


Otto and Emma Sage....he is such a great big brother.....


Walking with Aunt Patti....



This is such a beautiful trail....it starts in the town I grew up in, follows along the river [it is the old train bed] and ends a mile up the road from our house. the trail is a little over 13 miles. When I was a young girl, we used to walk the tracks and pick raspberries and hop on the trains [I know, crazy kids....but the frieght trains would roll [lumber] through this area at a crawl]......the views from this trail are incredible. We are so blessed that this is now a part of our county park systems.

When I start training for the 1/2 marathon in June, I will run the trail for my training.