Sunday, April 29, 2007

Sitting at Otto's ballgame yesterday, I watched my little social butterfly flitter about. Emma Sage has all the father's on the team wrapped around her little finger. They all seem to adore her, and she is quickly becoming the teams she cheers the loudest and for every play [good and bad!]

At one point, she was sitting playing in the dirt along the pathway........and children from precious games would walk by [on their way to the concession stand........which brings me to this question ?????? "Why do hot dogs smells so darn good at baseball games?"]

As the children walked by they would remember playing with her from games past and say "Hello, Emma Sage" which she would look up and say "Hello __________ back" remembering all of their names. This just brought a huge smile to my face, for one, she remembers [much better than her Momma] and two....these children remember her and take the time to say "hello".



Go Phillies.....

Spring is here.....

and Emma Sage has induldged her Momma in her passion for photography. The clouds were beautiful yesterday, so before Otto's baseball game we ran out quickly to snap a few pictures.....she actually had her skirt and leggings on under this dress.....

So enjoy my fun.............I just love to shot pictures, and Emma Sage usually does'nt mind her silly Momma [actually, these days I get more funny faces, but oh, well.....she has to humor me]






and just too cute....while we were at the park, a father and daughter came to take a walk on the path....the little girls says "Look Daddy, a fairy princess" as they walked by they were returning back around, Emma Sage had to run and give the little girl a flower she had picked.


Saturday, April 28, 2007

The most beautiful thing we can experience is the mysterious. It is the source of all true art and science. ~Albert Einstein

Me and my Daddy.....

Emma Sage just adores her Daddy. Today she got to spend a bunch of time with him at Otto's game........

Daddy rode is motorcycle to the game....everytime Emma Sage would hear a bike go down the road she would say "My Daddy's here"....finally he came and she ran off to get him.


Cheering on Otto's team....

Off to the concession stand to get a pretzel and a blue blowpop!!!!
There was a wonderful article in the April 23, 2007 issue of People magazine titled “Finding my son at the Zoo” that touched me on so many levels.

One line rang so true for me.

“That awful night I wrestled with the idea of grief and realized it simply wasn’t my instinct.”

The author, Thomas Fields-Meyer is talking about a moment in his life, just after receiving the diagnosis of Autism for his son Ezra, he and his wife, Rabbi Shawn Fields-Meyer were sitting at the therapist’s office when the counselor said to them…..

“You need to mourn”

“For whom?” I asked

“For the child he didn’t turn out to be.” The author and father goes on to say….

“I have never carried preconceived notions of what my children would become, and to this day, I have not wept over Ezra.”

My heart leaped for JOY when I read this article, because Tom Fields-Meyer put into words exactly how I feel and exactly how I have experienced life since Emma Sage entered into it.

I have always looked at people as individuals and I don’t think I have ever lumped a group or experience into a blanketed statement…..which brings me to one that I hear [read] often online in articles or groups related to Down syndrome. Even the famous poem ‘Welcome to Holland’ alludes to the fact that one will ‘always’ mourn the loss of the child you did not have [after having a child born with or developed a disability]. That it is a loss that “And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.”

I cringe when I read people make a ‘blanket’ statement……“Everyone grieves at the diagnosis of T21” or “people who say they never grieved are in denial”

I personally think that ‘blankets’ are great on beds, but should never be used as a statement to group an experience that is so unique and individual in one’s life journey.

I do understand that some people [and that could be many, many people] grieve at the diagnosis of T21, and some take a long time to reach a point of acceptance,,,,and even some [as the poem states] carry that grief with them their whole life journey….and that is part of their journey.....but it is not everyone's journey.

For me [and for the author Tom Fields-Meyer] my journey has been a spiritual one…..Emma Sage is exactly who she is supposed to be….and for that I celebrate. Yes, I work with her day in and day out…to help her develop all the skills she needs to live in our world, but that is not a form of grief or denial….it is what I believe all Mothers do. We nurture and care for our children, all of our children, helping them grow and develop into the best they possibly can be.

The author writes about life with Ezra as a spiritual journey……my spiritual journey with Emma Sage began at her conception. I knew exactly the moment I conceived her ~ as I felt her soul enter into my body. One of the most powerful and profound experiences of my life….I remember telling my Mother a few days later about the experience and telling her about the incredible sense of peace I felt because this experience solidified my belief that our souls are eternal. At that point I did not even have a confirmed pregnancy test ~ I just knew in my heart of her existence because her soul was just so powerful that she was the one to tell me that she was on her way into our world.

This spiritual journey is part of my daily life….this little soul just radiates….she teaches me daily about love and understanding…..she helps me see the miracles that surround us, a bird sailing through the sky, a tree toad croaking off in the distance….a wild flower – so tiny – so small – so perfect…..and at this moment right now in time…..with a blue blowpop in her mouth, her sweet little hands clasping the metal link fence at Otto’s baseball game……her yelling to her brother on the field [as his team is loosing by quite a bit]…..”Good job Otto…..I LOVE YOU!”


Shiny New Shoes.....

Shiny New Shoes….. one of our favorite CDs that usually has a place in the top five in the CD player is by Susan Salidor titled, Shiny New Shoes. The song always reminds me of my own fascination with shoes......

Since I was a little girl, I’ve had a fascination with Shiny New Shoes…..patent leather Mary Jane’s.

Black or Red ~ those were the only two colors I liked, so you can imagine my disappointment the spring when all I could purchase were white patent leathers because I needed them for my First Holy Communion. Those shoes sat in the box, for what seemed like eons to me….I couldn’t even wear them for Easter that year, as my Mother didn’t want the dirtied [she knew me too well!]. I on the other hand couldn’t stand their shiny whiteness…..I wanted black or red!

Much to my Mother’s dismay ~ I left them white for my communion [and my baby brother Michael’s baptism] but as soon as I got home for the party, I figured out if I rubbed the black soles on the shiny white….I could make cool black smudges….so I almost got what I desired. I had a pair of shiny – black smudged new shoes!

To this day….I still adore little girls in shiny new Mary Jane’s. I think that they have to be the cutest, sweetest little thing ever ~ especially with lacey, ruffled white ankle socks…..There is something so precious about little girls in socks and shiny new shoes.

Today my little girl wears Crocs…..they look like Mary Jane’s. They are black [and she has pink, green and yellow] but these shoes don’t leave smudges.

They are: …1.) Really soft, super comfortable, molds to your feet
2.) Barely there, weighing only 6 ounces
3.) Vented so air passes through, keeping feet cool
4.) Non-marking slip-resistant soles*
5.) Bacteria and odor resistant
6.) Ultra-hip Italian styling
7.) Port holes allow water and sand to pass through
8.) Can be sterilized in water and bleach
9.) Easy maintenance, just wipe clean
10.) Orthotic molded foot bed for ultimate comfort and support

And with a pair of lacey ankle socks…..

Just too darn cute!!!




P.S. I also have pictures of my 'white' shoes that I will have to find and scan.....along with a picture of my Mother.....who also had a love of shoes!!! Mom....I miss you so very, very much.

Firedog Across America

There is a wonderful contest being sponsored by FireDog Across America and Circuit City.....out of 5,000 submissions, 10 finalists have been chosen to win the grand it is time for all to vote.

We are big supporters of our local volunteer fire [and rescue] departments........I actually volunteer for our local rescue squad, and believe that our volunteer firefighters and rescue squads are one of the greatest unsung heros of our great nation.

But of coarse you know what is coming of the finalists is a submission by a Mother of a young man with Down syndrome. She writes about her local fire department, the Chickahominy Volunteer Fire Department Station 10 in Ashland, VA and how they have embraced her son and given him the greatest gift in the world.....a belief in him, as a human not judging him by his disability, but embracing him for his abilities.

So please, take a moment to read this essay and if you would, vote....

Friday, April 27, 2007

"Mommy, I have a new best friend"

were the words that came out of the mouth of a sweet, new little girl in Emma Sage's dance class. Her name is Julianna and she switched from the 4 to 5 pm class, to our 1pm to 2pm class.

Guess who she was talking about when she made that statement!

Yup, you guessed it......

Here next words were this.......

"Her name is Emma Sage"


These are the simple, yet so powerful things that makes this Momma's heart sing with JOY!!!!

Life is a Blessing......

That has always been my mantra. Life is truly an amazing blessing.

So, when I was given this book by my Mother a few weeks after Emma Sage's birth, I dug right in to read it. It has been to date, one of my most favorite books on the subject of Down syndrome.....for one main reason, Dr. Jerome Lejeune looked upon people with Trisomy 21 as amazing gifts.....he saw them for the beautiful people they are, and he worked very hard to open the worlds eyes to this gift. Life is truly a Blessing.

Here is a current article about Dr. Jerome Lejeune [and the main reason that I usually refer to Emma Sage's diagnosis as Trisomy 21, as he is the genetitist who identified what the real reason was for the syndrome that Dr. Langdon Down classified many years before, a triplication of the 21st chromosome.

Life is truly a blessing....and I am so blessed that Emma Sage is part of mine.

Sunday, April 22, 2007

Sweet Sisters.....

After our planting of trees, Greta and Emma Sage were playing on the I had to share these two sweet images from their time together.



Celebrating Earth Day

We do not inherit the earth from our ancestors, we borrow it from our children. ~Native American Proverb




Emma Sage was very excited about Earth her, every day is Earth Day as she truly marvals in all of the wonders of the world. She stops often to point out to me the sounds of different birds, or tree frogs.....she is the first to spot a deer, or fox, or ground hog. So this morning she woke up and told me that she had to 'Plant a Tree'......a Birthday Tree. I knew right away what she meant .
Every other week we go to the library to take out our stash of books for the upcoming weeks......the limit is 50 books per card. Emma Sage always reaches her limit [and sometimes goes over, but she has the librarian's wrapped around her sweet little fingers].
I am always amazed at the recall this child has of the books we read together....she is a sponge.
About two cycles ago we had one book called "Megan's Birthday Tree" when she told me this morning that she had to plant a 'Birthday Tree' I knew what she was referring to.
So, I used the moment as a teaching lesson. I started inquiring about the reason for the tree, and she said "It is Earth Day.....and I want a tree just like Megan". She then began to retell me the whole story. That Megan was adopted, that she had a birth Mommy and an adopted Mommy and that she had a special birthday tree that her birth Mommy planted to celebrate who much Megan would grow year after year.
So, the picture above are of Miss Emma Sage Celebrating ~ Earth Day....planting a Birthday Tree. Actually, she planted five Red Maples. We collect the saplings from my In-laws [huge] Red Maple and help them along in containers for a year or two and then plant them on our property. Today we planted five.......and we will now take a picture of Miss Emma Sage in front of her 'Birthday Tree's' each year on May 9th to see how big both have grown in the past year!
The neat thing about Emma Sage and Red Maples as they are both slow growing species!!!!! It won't be until she is close to 20 that these little trees get taller than her.

Saturday, April 21, 2007

Batter Up......

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Oh my, oh my.....

Three pictures from some more firsts.......

These are of the flood in Clinton [after the Noreaster of Monday]. I have lived in this area for 33 years and this was the first time I ever saw the river flood over as it did here.

I will try and find some old photographs to show the area before....

Where the water is a waterfall here, is not where the water fall should be. I have been to weddings where the water is spilling over onto the platform of the Art Museum....

and here is the Red Mill of Clinton......there is a water fall in front of the mill, but not where you see it in this photograph. When I can find other pictures I will post them side-by-side.


and a very special first......the first time we got to visit with Miss Brooke McKenzie

This is A.J.'s brand new baby sister [I have watched A.J. for the last year and a half].....Isn't she just beautiful!



This has been a week of many Firsts......

First, we had a terrible NorEaster.....a storm of storms. We lost power for 13 hours and the children had a 'snow' day from school because of flooded roads and down'd trees.

This was on Monday....the weather was cold, rainy [over 7 inches] and windy. This was also the very tragic day of Virginia Tech. I did not hear of the fateful event until late in the day. That was a good thing, as my heart was so heavy at the news that I thought I would fall over. My cousin attends Virgina Tech and because of my hearing so late in the day, the news was already available to me that he was safe.

Actually, it is a funny story about his letting my Uncle know he was safe and sound. My Uncle was also unaware of the events that had been unfolding [a tragic first in our history] when he answered the phone at home, Wayne said:

"Hi Dad, its me, I just wanted to let you know I'm fine".

My Uncle John replied "That's good, I'm fine too!" not realizing at all why Wayne was calling to just say "I'm fine"

So Wayne says "No, Dad, I'm OK" and then realizes that his father's response must be because he does not know what was going on.

He says "Dad, have you heard the news today?"

"No" replies my Uncle. So Wayne fills his father in and what a sigh of relief. My Uncle was so thankful that he did not know earlier, as it took Wayne a few hours to finally be able to get a phone call out to let them know he was OK...and my Uncle knows how much fear he and my Aunt would have experienced during that time.

Sadly, a young man from our County perished. I have not been able to bring myself to watch the news, and from what I have read, that has been a good thing, as many of the news programs released information and video clips, that in my opinion just continued the violation of the gunman.

There were many other positive Firsts for my family this week.

Greta got a gold medal in a major track relay competion.


"Don't bother just to be better than your contemporaries or predecessors. Try to be better than yourself." ~ William Faulkner

Greta also broke three personal bests [or personal records ~PRs as it is known in track] this week, in the 400, 100 and long jump. We are so very proud!

Otto had two Firsts this week [and one last] His last was his last inter-mural Basketball game....where he made the 'Hall of Fame'....... His first First of the week was his Reading Olympic Team taking FIRST place in the County compition. His second First was his First Little League game where he pitched and they won 13 to 11!

On first base.......more pictures and video clips to be added to his blog [when this tired Momma gets a chance]

Emma Sage had a big FIRST......Her First T-Ball game......and boy was it too darn cute.

First cool thing.....she is on the Cardinals.....the same team as Albert Pujols. I just found this connection to be Albert Pujolis is not only an outstanding baseball player [one of the best ever] but his an outstanding advocate for people with Down syndrome.

Here are some pictures celebrating this very special first.

She got up three times.....and hit three times. First time she made it to second, but was tagged out, the next two at bats, she made it all around the bases....

Otto has been helping out the team and today he was first base coach.

Look how excited she was to make it to first base....she lost her hat, so Otto was busy making sture that he got it back on her.

This was the first time she made it to second base.

Fielding.....does fielding mean, getting down on the field and playing down low? LOL!! Actually, Emma Sage loved squatting and keeping her mitt on the ground to catch 'grounders'....that was her favorite way to play out in the field....her team-mate is trying to figure out a new way to combine an army crawl with a baseball play!

Waiting to bat......too darn cute!
Go Cardinals!!!!
The end of a wonderful First Day!!!!!!

and one last first for Miss Emma Sage......meeting a new friend at Otto's baseball game today. She was very independant [she is one social butterfly] and today she met this little girl named 'Lily' and they played togethre and chatted for most of the game. I took these from a distance, and my heart was so full of joy watching my little girl experiencing such a wonderful 'first'

and lastly,,,,,,a first for me!

While I was pushing Emma Sage on her tryke over to the concession stand, I notice a young umpire look down at Emma Sage and smile and then after he passes us, I notice him mulling around. At first I think it might be a friend of my brothers [as my brother's played baseball at these same fields many years ago] or an old neighbor from my we are walking back to Otto' game he comes up to me and says "Hello.......I have a son with Trisomy 21 and just wanted to say "HI"!"

I have only had two encounters in my life where someone has come up to me to share in the joy of our children.....and this was the first male!

He was a delightful young man whose son is 15 months old.....and the light of his life. He was so happy to see Emma Sage in her Cardinal uniform and to know that she was playing T-ball. He lives not too far away in PA, so I hope that we get to meet again at the ball field and that one day soon I can meet his lovely wife and precious son!

Now, how cool has all of our firsts been this week?!?

Oh, and the list goes on and on......Today was the First amazingly perfect spring of many to come. Greta had her First camp out with friends [still to early in the season for me to be sleeping out in tents]. and this is my first post in almost a week.......that is a first I wish to change,,,,,,,,,so let me be the first to say "I want to blog more often"!!!

Sunday, April 15, 2007

Happy Birthday Mom

Today was my Mother's birthday. She would have been 65 years old. She had always looked forward to this day, as she was excited to be able to retire and spend more time with her children and grand-children and garage saling. [is that the right way spell it?]

Yesterday and today were both very hard days for me. I found myself crying.....deep profound tears. At one point I was so thankful for the nor-easter we are having that the rain that is pounding down, as my tears felt like they had welcomed company.

I went to the grave yesterday to do some spring cleaning before the storm. Her grave had settled and there were gaping holes. I got 5 bags of top soil and two bags of manure/hummas and filled and raked and seeded. I planted our Easter flowers [white tulips] in the planter and 'tidied up' the beautiful tributes to Mom that have been left by family and friends. I then went to Country flowers to pick up an arrangement for my Mom's dearest friend RoseMary [who is on vacation in Florida] and brought them to the grave....I took pictures in the beautiful afternoon light [so RoseMary could see how wonderful they were]. I laied down for a bit and talked with Mom.......God I miss her so much.

I realized upon lying there, what a beautiful, peaceful spot she is at......birds chirped in the trees, a grey squirell entertained me by leaping from tree to tree. The quite sounds of our little valley....the church bells rang and I realized I had been visiting for quite some time. I watched the sun setting and realized that the storm would be approaching that evening and I better protect the flowers. So I headed down to the store and got a plastic Rubbermaid clear container. It fit perfectly over the arrangement. I found some fieldstones at the edge of the graveyard and Mr. Nagy's field....and placed them on top. Making a little fortress for such beautiful flowers from such a beautiful friend.

Today I clipped coupons. My Mother always clipped coupons out for my sister, brother and I.....she loved to be trifty....and I follow in her footsteps. So I clipped, crying remembering all the times she would sit with me and ask me if I would use such and such a product...and then clip it for me.

Greta and I {I was spoiled this weekend of getting some time out alone, as Rick is home and he was playing with Emma Sage and Otto} went to Shoprite....taking a side trip to T.J. my Mother loved to shop at T.J.Maxx and everytime I'm in that store, I fell like she is right there with me.....looking at all the items, finding the great deals.

When we returned, we quickly put the cold things away and then headed up to the little Chinese resturant in Long Valley [the roads were flooded when we came home and had to detour] to meet with my sister and brother and their families to celebrate my Mothers special day.

The children are all so beautiful...I know my Mother smiles down from heaven everyday at their sweetness and innocence. We sang for Mom [even though we did not have cake] but the song was so powerful and moving....each voice, of every person gathered, was rich in song......I truly felt like my Mother was there.

We then all headed to BaskinRobbins for Ice Mother when I was younger always looked forward to her weekly outing with the girls to go bowling and then stop for Baskin Robbins ice cream [Katrina is now working at this one, but she was off tonight as she is house/pet sitting for a family]

We came home and got ready for bed....and here I am.

No pictures to upload.....only memories.

I had heard a dedication on NPR in the car on the ride was for Kurt Vonnegut who passed away this week. They read a passge from Slaughterhouse-Five......and the reference to "And So it Goes".

Truly a message for the struggles I have been having over the last two days working through the grief I carry at the loss of my Mother.

"And So it Goes".......our precious moments that we have shared in time still exist. Mom is in heaven now, but I will see her again....and her passing does not alter the moments we have shared....they are still as precious today as they were when we were living them.

and Mom.....I relive those moments over and over again. I can see your smile and hear your words. I watch the generous hearts of my children and I see their Nana in them.......

I love you.

Easter 2007

Here are some pictures from our beautiful Easter Sunday......

Like the holidays that came before this one, it has been such a hard time to celebrate a moment in time that always gave my Mother such joy. Being with her family and celebrating the sacred moments.

Mom is always with us in spirit......and there is not a moment that I don't puase and think "Mom would have loved this"..."Mom would have made this"...."Mom would have been so happy with all of us gather together".

Anyway.....I have been so crazily busy, so I please enjoy Emma Sage's holiday in pictures.

My bunny girl.....

Emma Sage, Greta and Gabriel....I just love the lighting in the movie theatre-room at Ed and Svitlana's is quite magical.

Sir Gabriel

A portrait of Mamie....isn't she just beautiful. This is Emma Sage's great-grandmother, my father's mother. She got to spend the week with my sister [as she has an extra room and bathroom right next to it, so it makes having guests quite delightful [we have a very small home and only one bathroom]...but we got to spend lots of time together. My cousin just had his second little girl, so my Aunt was visiting her new Mamie came to visit with us! Emma Sage loves being with her Mamie [as do I]

Cousins......identical cousins! Well, they all have those magical blue eyes!!! Rori, Fiona, Emma Sage and Kelsy. I know Nana was smiling down from heaven at the sweetness of these four.

and it is off for the egg hunt...over 200 eggs,,,,but burr, was it cold outside. I just love this capture of Emma Sage jumping up in look how cute Ronan's wink is!!!! lol!!


Silly bunny even hid them in the trees

Finished with eggs, now on to the real business of playing....

and sliding....
and swinging....

and flying.......wheeeeeeeeeee
and realizing it is just too darn cold outside for playing on swings....

so it is on to check the haul of eggs......what a lucky little girl.

I just love this sweet.


Miss Kelsy and her basket....

Sir Connor.....isn't he just adorable! He actually came home with us and had a sleepover, as he and Otto are busy collecting and trading baseball cards these days.
Sir Ronan....I just love his spiked hair-do!

Princess Fiona......she is such a beauty.

There were so many of us, that not everyone could eat at the diningroom view....DSC05342
and the other....

"Donna Reid"...I mean Victoria in her apron. She is expecting baby number three in the beginning of July!!!! I'm so excited!

Emma Sage and Arthur and Lola going for a walk.....

Emma Sage and Arthur....she truly has a heart of gold [even though she sometimes forgets that you can't push someone down the stairs]

OK, this just cracked me up. Sir Ronan didn't want to be part of the group pictures that follow. I isolated this one out as I couldn't stop laughing at his expression. I know Mom was laughing so hard in heaven!!!

We had 10 of Mamies Great-grandchildren gathered, so we tried to do a group to impossible to get everyone looking at one time [especially! watch the next picture and you'll see,,,,,children moving and looking all over!]



Rick and Katrina...I can't believe she is graduating and off to college in the fall.

Emma Sage and Daddy [her most favorite guy in the whole wide world]

Little Miss shuffleboard player.....who sadly....

Hurt her finger
and what does this Momma do? Take a picture of coarse!!!!

But big sister Greta is quick to offer some loving [they were playing on the same side]
A sisters love....
and if you notice,,,she has her disc already in hand to keep on playing. "I"m really not a bad Momma!"
3 generations...I so wish I had gotten my Dad in the picture so I could have done four generations shots.
Sleepy boy.....

So the eggs are gathered and what else is there to do?

The temperature reads....

So the kids put on their winter jackets.....

Well, Miss Rori puts on hers...
and the rest put on bathing-suits and jump in the hot-tub!!!!! Burrrrrrr


Look at the ruffley-butt.....Emma Sage's new suit for the upcoming season...and Rori is eyeing that tub...not sure if she dares take the coat off and jump in.

The temptation was too great....and in her birthday suit, Miss Rori joins in the fun!
and Emma Sage says "She hopes you all had a magical day filled with family and friends"