Emma ~ One who Heals
Sage ~ One with Great Wisdom
Emma Sage is our little girl that is blessed with a little extra ~~ chromosome that is ~~ on her 21st pair.
Wednesday, June 17, 2009
"I hope your dreams take you to the corners of your smiles, to the highest of your hopes, to the windows of your opportunities, and to the most special places your heart has ever known."~Author Unknown
Last night, our Greta donned a mortarboard and gown and walked with her classmates as graduates of Voorhees High School, class of 2009. She graduated with honors, and wore the black/red/gold cord for National German Honor Society and the golden cord of National Honor Society.........a golden ribbon was pinned on each students gown in memory of their classmate Tucker, who left their sides way too soon on this journey.
Rick graduated from the same school in 1977 and I in 1981.......as well as her Aunt Heidi 1979, Uncle Kenny 1982, Uncle Mikey in 1989, Aunt Patti in 1991 and her big sister Katrina in 2007...........it was a cloudy evening and quite chilly,,,,,,but the sun began to shine upon the graduates halfway into the ceremony and I was looking for a rainbow to appear.
I had tears of joy.......and a few of sadness, as this moment in time has begun to hit me hard.....harder than I had thought. I think that the realization that my Greta is now off on her life journey [like her sister Katrina] and the reality that there will be greater periods of time before I get to see her, has tugged hard on this Momma's heartstrings.
Emma Sage was the first to let the tears fall.......as she fully understands that Greta is leaving soon, just like Katrina did and she is not all that happy about it.
What a great class of kids this group was.....they headed to Project Graduation and partied the night away. When Greta returned this morning at 6:30 a.m. she gave me a big hug and the greatest smile and said she had the 'Time of Her Life'..........
This is just the beginning my dearest Greta.....Make each day the 'time of your life' and celebrate all the little things ~ as they truly are the treasures of life.
I love you.............
Tuesday, June 02, 2009
We don't see things as they are, we see them as we are. ~Anaïs Nin
A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life. ~Isadora James
Well, actually, we omitted the cinnamon this time around......while I really wanted to 'try' Emma Sage's recipe, I also did not want to ruin a perfectly, delicious rainbow trout.
If you notice, little Miss has a runny nose mustache. She as ill this week with a cold and cough. Feeling better now, especially after a trout dinner.
Today was a delightful day for me......as I slept in a little later than usual, was greeted with lots of loving wishes and hugs.
A great big cup of java and a day that was picture perfect.
I spent the day cleaning and organizing, whilst Emma Sage went grocery shopping with her Daddy. Otto got to go play at his cousins, and Greta caught up on her sleep before work.
Katrina sent lots of love through the phone and we dined with my sister and brother and their families.........truly a perfect day.
Of coarse, Mother's Day is much more difficult when your own beloved Mother is absent, as it reminds you how much she is missed and loved and that having a Mother as loving and giving as your own is one of the most precious things in the world......and it hurts when there is such a void of love.
Emma Sage's class made an adorable cookbook to share with their Mothers........it was such cute to read each child's contribution.
Here is Emma Sage's....I know it will make you smile as much as it did for me.
and if you are ever in the neighborhood, stop by, and we'll pop on over to the river and catch a fresh trout to cook up for you. [we actually had five beautiful rainbow trout fresh caught from the river two weeks ago]
Enjoy!!!
P.S. I've never tried cinnamon with my trout...that was Emma Sage's idea! lol!!!
.....and on the back page it continued:
broccoli, salt and pepper in the the trout pan. Cook it for 2 minutes on high heat. Wait 3 hours on low heat and then it is done cooking. Finally it is time to eat it. Enjoy the food!!!!!
I hope you had a beautiful Mother's Day....one filled with quiet moments, tender thoughts, belly laughs and trout!!!!!
My baby girl is Eight years old.....oh, how can that be?
It seems like yesterday, it was a realization that your little soul was on its way into our hearts.
Just like her, Emma Sage's 8th Birthday was a Magical one. This child truly radiates joy.
She started her day going to her dancing class, which she adores....music and movement, what could be a more glorious combination.
She got a phone call from her beau, Ryan,,,,,,,and you should have heard her giggling during the call, and how sweet the two of them are with each other.
Trying on Daddy's helmet
Our little biker chick:
We then headed home for lunch and she asked to attend the Art and Music festival along the river by our home.......so off we went.
Down by the river......
and she danced, danced, danced......
Playng Lucky Ducks......and she is one Lucky Duck!!!!
It was so cute....a little girl came up to Emma Sage and said "Oh, you have the most perfect dress" She loves it because when she dances it spins......
One of her favorite things....getting her face painted.
Oh, how this child melts my heart.
She got a phone call from her other beau, Nash, and this is a picture I captured of her on the phone....too cute!!!! One the phone with Nash.....sorry Ryan, I was driving when she was talking to you on the phone and couldn't take a picture of the big smile she had on her face for you.
Then her request for her favorite food in the world.....Japanese.
Happy Birthday Emma Sage........We love you dearly and are so blessed that you are our daughter!
This was taken at Emma Sage's favorite Ice Cream shoppe.
Now, every time we pass Gronsky's Milk House, Emma Sage informs us that is where she is going to work when she grows up.
So, the other day, Emma Sage announces to Greta that "she is going to work at Gronsky's when she grows up!"
Greta asks "Why do you want to work there?"
and Emma Sage says "Because I can get free ice cream!"
Greta says "You don't want to do that, you'll get fat!"
to which Emma Sage replies "I'm not going to EAT IT ALL!!!!!"
lol.
We have been well, just very, very busy. I have been finding I have a hard time getting everything together this time of the year. Busy taking photographs, busy planting flowers and vegetables, busy with children and school and activities.
We are here.....thinking of you all, and hoping you'll keep popping by as I promise lots of updates soon.
Today is my dear Mother's Birthday......she would have been 67 years old.
I can not believe it has been two an a half years since you left your earthly bounds......and how much it aches to not have your physical presence here.
I miss you Mommy.........and I love you, oh so, very very much!
Happy, Happy Birthday Mommy, I can't seem to stop crying today. We all miss you so dearly.
A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. ~Washington Irving
You know, it is truly amazing how technology has enabled us [as a society] to create some amazing things.
Watch this video.....it is so inspiring. It is a group of 200 dancers whom had only a few rehearsals and pulled off this amazing routine in the middle of a train station in Belgium.
I do believe that I would have clapped and danced along in my spot if I were lucky enough to witness this random act of creativity.
I know that there are other groups around the world that have been organizing and creating random acts of creativity.......how truly incredible!!!!
This is a topic I feel strongly about. Our society has gotten much better at recognizing and ending Racism......but we are a long, long way off from recognizing and ending Disablism [our President is clear proof that most of society, even the most intelligent and well-versed members, just don't get Disablism and how entrenched it is in our society.
On this same topic, watch this video clip and see how we, as a collective whole, pre-judge others:
Lately, I have been struggling a bit. It is very unlike me to waver in my faith or my resolve to always stay positive. It has not been a difficult waver, just a knowing in my heart and soul that I have lost my way a bit.
So this morning, as I stood in the cool morning air, listening to the Easter Sunrise service [thinking to myself that I should have not packed away the winter gloves and hats so early] I closed my eyes and allowed my heart, soul and mind to open and listen.
and then I found it.........a beautiful epiphany.
As these words were being spoken, and the pastor [I was at my mother-in-laws church this morning] spoke of GOD not always being in the same place, in the same pew, week after week, but that GOD was ahead of us, leading the way......that our service, our duty, our living, our faith was constant, ever flowing, not just on Sunday, not just in our church, but in the very being of the universe.
These were the words I needed to hear:
"And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you" ~Matthew 28:7
and I as my heart, mind and soul embraced these words, the sun began to shine.....brightly on my head. I was at the exact angle needed ~ so that when the sunrise finally peeked over the mountain [this is the same exact location that I look towards every morning when I watch the sunrise...only a mile up the road from me] I was bathed in glorious sunshine.
Clearly an epiphany for me.
So, this subtle waver....that keeps trying to creep over me these last few months was vanquished ~ and I am beginning to see clearer.
GOD is good................and we are so blessed on this Easter day.
My little girl was so excited all week, as first she was the Star Student of the week and she had to make a poster all about her, bring in some of her favorite things and then get up in front of the class and talk about 'HER'.
Her teacher called me to tell me that she did an incredible job, that it was just precious. She got up in front of the class, spoke clear as a bell [the best she has ever heard her] and talked all about Emma Sage. The teacher said the students were all so very interested, thought that her modeling was so cool and loved looking at all the Toys R Us ads she has appeared in. They loved her ribbon from riding her horse and asked lots of questions about horseback riding. She brought in her Madeline dolls [her favorite toy] and her Madeline books [that she is so excited that she can read independently now]..........and her poster [I'll take a picture of it when it returns home....but she did it all herself, and you will laugh, but in them middle of the poster in a big star was the question: "I am a star because......." and Emma Sage wrote [all on her own]I AM HAPPY!!!!!lol. I know my friends who cringe at the 'stereo-type' of people with Down syndrome always being so 'happy' will get a good laugh at my little girl and her observation of herself and what makes her a 'star'!!!!
and then tonight, her classroom was a buzz......all the children were so excited to introduce her to their parents.
I will upload pictures tomorrow....as I got some cute shots.
Enjoy one of the songs from the Valley View First Grade Class.
"In the video, you will notice Emma Sage put her hands up to her mouth in the beginning....she was asking me 'Where is Daddy?' as he was right next to me, but there was someone in front of him and she could not see him.
I have to tell you.....her smile at the end is her smile that just melts my heart as you can see how 'happy' she truly is.....and then the 'blowing of kisses'!!!!
Last night Greta had on her TV in her room an episode of "House"......Emma Sage came in, started looking at the TV and then said to Greta "Please turn this off, I don't want to watch this.....Doctors Freak me out!"
LOL!!!
Do you think she is a little gun shy of doctors from her 5 day hospital stay?
Today is a very special day.....it is a day to celebrate the triplication of the 21st chromosome, which results in a person being born with Down syndrome, or more appropriately classified as Trisomy 21. Thus the date: 3 - 21
While I have much to say [don't I always] I have little time to sit and collect my thoughts......and you really don't want to read my rambling thoughts as you will get sea-sick on how fragmented I can be [until I have the time to properly sit and 'think']
The sun is shining......my little girl is still in P.J.s and in bed, where she has been for almost two weeks now. But she is smiling, she is drawing in her 'dream journal' and watching videos and reading books. She has not regained her energry or desire to 'move, move, move' which is her normal self. [oh and you will laugh, but her dream last night was that I made her 'corned beef' and she ate 10 lbs of it.....lol!!!!] So for Emma Sage to be in bed for two weeks is so unlike her....
Usually she is just like 'Poetry in Motion' So, on the venue of poetry I leave you [to go get my hands in the earth and get my gardens ready for the upcoming glory of growing and blooming and fruiting...of giving forth bounty to nourish my families bodies and souls] with a poem.
My dear friend Amy is part of a poetry group and had requested in a project to have this date to share her poem [in honor of her beautiful Stella who is Emma Sage's friend and also sports that designer gene on her 21st pair]
So please click on this link and read the words my friend has penned.
Bad Cripple ~ "Obama's joke was not funny and highlights an inherent bias against all people with a disability in American society. This bias, a gross and largely unrecognized civil rights problem, is part of the American social structure........."
Special Olympic training started two weeks ago for Emma Sage. Sadly, she was in the hospital the evening of the first session and missed the second session as she is still recovering from her illness.
I wanted to write a little bit about Emma Sage and how blessed we are that she has the Special Olympics to participate in. To date, she has fully participated in sports and activities with all of her peers, but I do know as time rolls forward, she will continue to participate along side her peers without disabilities, but she will also have the opportunity to participate with her peers that have disabilities like her......a way for a 'level' playing field [so-to-speak].
As you all might have heard by now, President Obama made a 'joke' last night on The Tonight Show. Most people don't even think twice when someone 'jokes' about people with disabilities, especially cognitive disabilities. But that is where our society is completely wrong ~ and something that NEEDS to change.
My dear friend Julie wrote a letter from her heart to President Obama. I believe this letter was written not only to him, but for the majority of our society. My most sincere hope is that hearts and minds will be opened by the high level of this faux-pas.
Dear President Obama,
I hope this does not get lost among the thousands of emails you will probably get on this subject. But I want to make you an offer. So keep reading, it will be worth it I promise!
You are human, and even as President, more like people in this world than you are different. That was one of the brilliant parts of your campaign strategy.
However, on March 19th, you proved just how alike you are to all too many people in this world who try to get a laugh out of disparaging people who are different than yourself. Worse yet, you likened yourself to them because you felt inept, that you had not risen to the level of expectation you set for yourself or others set for you.
It is a shame that people love to get a laugh at the expense of the cognitively disabled. It is an even bigger shame that you, Mr. President, did not have the opportunity to learn this lesson before you got on national TV and demonstrated how little you understand about the lives of people with cognitive disabilities.
Oh, Mr. President, if you could spend one week with a person with a cognitive disability you might learn more than you ever dreamed possible. You would learn lessons about dignity, how to stand in the face of injustice, prejudice and discrimination and get back up day after day to prove you are worthy and valuable member of society. As an African American you may think you have experienced a great deal of this. I invite you to learn about it from the perspective of one who lives it day in and day out.
So, here is my offer. The next time you and your family decide to take a little vacation over to Camp David. Invite my 9-year-old daughter to come along. We don't live far and I can guarantee you, if you let her, Emily will teach you more in one week or probably one day than you have learned in 47 years. She will teach you lessons about the value of human life, the ability to stand in the face of injustice and move forward with dignity and pride, and she will teach you and your family about love, kindness and acceptance of people - no matter their race, religion or dare I say their cognitive ability. For, she has taught this to me. You see, Mr. President, I was a person who valued high education and status as proof of a person's worth in the world. Then nine years ago a little person came into my life that changed everything about how I look at, judge and value the human race.
Mr. President, if you accept my offer you will learn that it is not about putting others down to lift yourself up, for you will find yourself in darkness. It is about lifting others up, so that they may shine brightly and in doing so - their light will shine down on you, illuminating a path for you, you might not ever have taken.
Feel free to contact me to make arrangements. Id love for you to experience even a fraction of the joy and understanding I am privileged to receive every day.
Sincerely,
Julie E. Arthur Mother to a wonderful child, who also happens to be a Special Olympian
As I read my friends words, my heart swelled and a few tears rolled down my cheeks. Prejudice comes in many forms. Prejudices that are swept under the carpet, or 'spun' to put the own-ness on oneself, are still prejudices.
While this is not a political issue at all for me, I find it quite ironic that the video clip I'm sharing below is made by Sara Palin for the opening of the 2009 Special Olympics. This is not about politics....this is about humanity.
Pope John Paul II said a basic moral test of a society can be found in the way it treats its most vulnerable members.
Let us all remember that words are powerful........
Today, Emma Sage slept the day away. She was only up a few times, and then off to sleep she would go. When she was awake, she would flash me a sweet smile and try so hard to 'perk' up.
I sat for a long time just watching her. I find that I have done this from the moment she was born.....I stare at her in awe. I marval at her, as I see perfection. It always makes me wonder how others can see our children with Down syndrome as anything less. I look at her sweet face, her little fingers, her soft skin. I am always struck with awe at her being........
So, while the children all napped, I took a little 'me' time and visited some of my favorite blogs to read.
I was struck by this post and how it touched me so ~ as I read it right after my moments of sitting and watching my sleeping little girl, in awe of her being.......and with great thanks that she was home with me, safe and healing.
I highly recommend this post to read......it will truly touch you and leave you in awe of life.
First, I am so humbled by the outpouring of love, support and friendship being offered up to my little girl. She [and we] are so Blessed.
Secondly, we have great news, in the fact that the doctor believes it is viral and not leukemia.
They did find one 'blast, abnormal cell' in the marrow, but one is not considered leukemia, so they truly believe we are dealing with a viral infection. What it is, they don't know.
I am sighing a huge sigh of relief......keeping my faith that in a little while, this virus will be behind us, and my little dancer will be back to dancing.
I had mentioned in my post below on how my eyes, heart, mind and soul have been clouded and I needed clarity to see the signs around me.....and after praying it is amazing the signs I am seeing.
The biggest sign.....The outpouring of love....how incredible and what a testament to friendship and community.
as I sat yesterday after the call that said that the smear had found two abnormal cells/blasts I picked up the newsletter I had grabbed in the lobby of Goryeb's Children and open it up.......and this bright glimmer of hope came to me as I saw the smiling face of Melissa Riggio, and an article on how the Down syndrome community has come together to provided the Valerie Fund Children's Center with the largest gift ever to benefit the fund.....it went on to say "Some contributed because they were moved by her story, but many other parents of children with Down syndrome gave because they were awed by her many accomplishments."
It was such a huge sign, I realized that Emma Sage is part of this incredible group of human beings, those born with an extra chromosome on their 21st pair.........our children have a gift, one that touches humanity and brings such clarity to everyday life.
I know my little girl is going to be OK......I just know it.
I know she still needs prayers, but I know GOD has already begun to answer the biggest one I had, "Please let this be viral and not cancer"
My heart is also so very sensitive right now to every parent who has to face medical challenges with their children........I am forever changed.
Over the last few days, my heart has paused, my breathe taken away for a moment and my soul strengthened by the bravery of a little girl.
"Mommy, I didn't cry......I just breathed in and out" were the words spoken to me early yesterday morning as Emma Sage called me from her hospital bed after another blood-draw.
and here is my wish to all of you who visit our blog.
Can you please keep Emma Sage surrounded in positive thoughts and prayers, as she has been in the hospital since Sunday and the doctors are working hard to figure out what is making my little girl so sick.
I was blessed to be able to be with her from Sunday morning, when this unexpected journey began and sadly had to come home Monday night as I have commitments to my job [and with Rick out of work, that luxury to even think of taking off is gone] so Daddy has been with her around the clock and Greta, Otto and I [and Katrina has been on the phone with her continuously] are able to go in the evenings to spend time with our sweet Emma Sage.
I firmly believe in the power of prayer and positive energy...........and I pray that from all points of the world, my little girl is being lifted in prayer during this uncertain time.
I also believe in signs........and I've been so worried of late that my eyes, heart, soul has not been as open as they should be and I stopped to pray this morning for clarity.
But the signs have been there...........Bob, who stopped by on Monday morning to pray with me, my dearest friends who have started prayer circles and sending an outpouring of love and positive thoughts and kind words, to two little boys names 'Nash and Ryan' who were on a gift of tulip cookie bouquet that made my little girls eyes sparkle and her smile broaden from ear to ear, when she tells the nurses that the gift was from her 'Boyfriends'.....to a pile of cards, hand-written with love from her teachers and classmates. So many signs of the love that surrounds my daughter and family.
and then When I opened my inbox this morning, a lovely note was there from two wonderful men I got to personally meet this fall, John DeMasi and Chris Burke.
This is the link that was in the message:
"Yes, I Can".....................I know my little girl will continue to be strong and I know her being will be surrounded with love and prayer and this journey will have a happy ending.
Literally, she cooked the fish. Greta got a goldfish that was leftover from an anatomy lab at school and brought it home to live here.
We boiled water [we have a well] and set it off to the side to come down to room-temperature so that we could eventually transfer the fish into his new home.
Well, little Miss Emma Sage did not realize that the water had been boiled, thought she was helping and let's just say, Sir Goldfish met an untimely death.
............and boy did she cry when she realized what she had done [her crying actually broke my heart because she was sobbing and so sorry for what she had done]
I have always loved this photograph from the series I had done......as Little Miss Emma Sage's lip can get 'real' pouty from time to time [see, she is not always happy......]
Let me say this.......I loved it. I laughed and laughed and delighted in the whole experience.
I actually have vision's of Emma Sage being a reporter someday on 'So How's your news?' , as I think she would just eat up that kind of experience, and I know with how witty and comical she is at 7 years old, by the time she is a young adult, she will be asking the hard questions and vying for Barbara Walters job.
I'm not a big fan of MTV [except for the time when all they played were videos] but this is such a great show and I'm so glad that MTV is carrying it in their programing.
Smiles, songs for a granddaughter who is just right By Beverly Beckham March 1, 2009
Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout. My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.
She and her mother and I were on our way home from New York City. We had taken her to see her 19-month-old cousin. We had been to parks and museums, bookstores, and toy stores. We had walked and shopped and eaten and played.
I was thinking about this, about what a great kid she is, when I walked into my house and read the cover of the Boston Globe Magazine, which had come while I was away: "Pregnancy and Down syndrome; the agonizing decisions." Lucy has Down syndrome, so I sat and read it.......
I know I've said this before, but I am truly blessed by an Angel.
My dear friend Fran found Emma Sage on my flickr.com account and asked me if she could use some of my photographs to do her digital scrap booking. Of coarse I said 'yes' ~ as sharing my little girl with others is the reason I blog and capture her life in photographs.....it has been my way to advocate, to help other understand the 'normalcy of difference'.
I know the reason why I started blogging and photographing Emma Sage's life........as I grew up in a time when people with Down syndrome were hidden, not seen often in public. That to me was a tragic thing, and I know that by the simple act of journaling and photography, I can help change that for current and future generations.
Emma Sage is Emma Sage.....she is as human as the rest of us....her journey is her journey and it is to be lived and celebrated. I am doing that for her in words and photographs.
My dear friend Fran is helping by her beautiful art.............Thank you Fran!
Emma Sage loves to dance....she has been dancing under instruction since she was three. You have to see her choreograph her own routines ~ she is good,really good.
This is her dance class this year. They are studying Hip Hop - Jazz........and they are all just too darn cute.
Their outfits for the recital are a cute little denim coloring with red gingham in a 'train' style. There is one little boy in the class, so they got a outfit with a matching boys. Usually, the poor boys just go with a solid white or black, so it is nice to see that this little troop are coordinating and that sweet little boy gets to be the 'train engineer'.....chooo-choooo
"There is a privacy about it which no other season gives you.... In spring, summer and fall people sort of have an open season on each other; only in the winter, in the country, can you have longer, quiet stretches when you can savor belonging to yourself." ~Ruth Stout
So, I've been quiet this winter.......and as I looked back on my blogging, it seems every winter my post become less and my desire to just hibernate comes through.
It is not that we are not busy, we are. It is just that sometimes I don't know how to put in words the emotions, feelings, activities we are doing. We just are doing.
Emma Sage has been such a delight. My friend Mauzysaid it well in a post on our online Trisomy21 community titled 'Normal for Down syndrome' in where she described her son Nash as "He is happy (but I will never be a “they are always happy” spokesperson!)" .....and I realize that I am usually reporting the same thing. Emma Sage is a delight and she is such a happy girl. Not always happy, but then again, who is. But her happiness is contagious and it just permeates her entire being.
So during this 'gray' time for me, I have this ray of sunshine illuminating my days........reminding me often that life is the journey, the day to day journey, and to smile and be filled with joy and happiness is surely a grand way to travel.
One thing we have been doing is looking through our gardening books. What a fun way to spend the cold days, dreaming of the warmth and the endless possibilities that lie ahead in our upcoming gardening seasons.
I've been savoring this time to myself.......recharging my soul.
It was a bittersweet moment last evening, as my little girl informed me that she did not 'need my help and I can do it by myself' as she gathered up her Valentine Cards, her class list, a tray to write on and a pencil and set-off to address her Valentine Day cards for her class.
She didn't need me.
That is why it is so bittersweet.....it is so wonderful she is so independent and capable,,,,,but so sad that Momma had to sit off on the sidelines and just watch.
She signed her name on each card first.....then she took the list and envelopes and addressed them.....making a little check mark after each name [on her own, I didn't even have to suggest it....and yes, I teared up a bit to see her tackle this project on her own]
Then she picked the right design for each child [she had three to choose from] and now she did not pick Hannah Montana, she picked a very sweet card that were very Mary Engelbreit like/
Then she licked each one [I was sure she was going to get a paper-cut, but alas she did not] and then placed a sticker on the front of each one [they were cute bubble stickers that looked like the candy heart confections that say things like 'Be Mine' 'Your Cute'
She then went downstairs, got a large zip-lock bag, placed them inside, went to her backpack and put them inside and was done.
Momma sat back and smiled [and teared up a bit too]
My Katrina is a head couselor and my Greta is a couselor at Camp PALS and Miss Emma Sage is a camp MASCOT!!!!!
If you have a teenager or young adult with Down syndrome, we highly recommend the Camp PALS experience. Emma Sage is counting down the years till she can be an 'offical' camper. We are hoping that she has the opportunity again this year to spend the night and 'pretend' to be a camper.
There is nothing more precious than a baby......especially a baby cow. This little one just wanted to be nuzzled and loved. Emma Sage just loves baby cows.
This was a moment of the sunrise that I witnessed the morning my cousin Beth left her earthly bounds.
I love to watch the sunrise.......because I am usually up before it and get to marvel at the splendor of it....from the beginning sounds of the wildlife that is also anticipating its arrival, to the incredible colors that only last a short while, swirling and changing as the brilliance of the sun finally pushes through.
My cousin Beth spent the last few weeks of her life at a Hospice Hospital right on the Long Island Sound....with a great big window that overlooked the water and the perfect view of the sunrising in the east.
The sunrise was a connection that the two of us could both witness and feel, and then share our thoughts together later in the day, via her Caringbridge site.
So, on Wednesday morning, while I was out walking one of the dogs and gathering kindling.....this was the view that unfolded in front of me. I had to capture this one on film. [I don't always carry my camera with me, especially in the cold, icy weather, as I don't want to slip and break it] but this morning I had a feeling it was going to be a beautiful one.
Around 8 a.m. that same morning the phone rang..........it was my cousin Fred [the man with my cousin Beth in the photograph below] to tell me that Beth had left her earthly bounds at 5:48 a.m. that morning......about 10 minutes before the sunrise.
So, see this sunrise for what it is.........a beautiful reminder that life is very precious.
of the Internet to me, is this incredible ability we have to share, with ourselves, others, the world ~ thoughts, feelings, ideas, emotions.
One of my favorite bloggers shared a piece called 'Turn the Lens Around' and shared the video below......she found the video on the site of another of my favorite bloggers in her piece,'Outside the Box' ......who found the video because of another of my favorite bloggers. and so it goes...isn't the internet incredible.
If you have been a visitor of Emma Sage for a while, you might see a theme that has been a driving force for me in writting this blog and sharing our life with our daughter with others.
In my daugther I see................beauty, grace, faith, hope, joy, laughter, strength and even weakness. In my daughter I see HUMANITY.
Thursday, February 05, 2009
Emma Sage and I went for a quiet walk in the snow last night, just as the day was ending........it was that beautiful kind of snow that blankets the earth, clinging to every branch and limb.....softening the sounds of the world. I was walking to reflect on a passing in my life. My dear cousin Beth, who I have posted about before in the blog, gained her wings this morning, just as the Dawn was breaking. So, what could be more fitting than a quiet walk at Dusk to say 'Good-bye'. Emma Sage delighted in the snow.........so I must share a few images I took while we walked and talked about life.
Oh! the snow, the beautiful snow, Filling the sky and earth below, Over the housetops, over the street, Over the heads of the people you meet. Dancing, Flirting, Skimming along.Author: J.W. (Joseph Warren) Watson
She knows she has 'Down syndrome'.....she has friends with Down syndrome.....but this comment cracked me up and made me realize that she truly does not see 'Down syndrome' as 'limiting'
Abbie [who also has Down syndrome] and Emma Sage were having snack after school and were watching the Disney channel while they ate home-made nachos and salsa.
On comes a clip about a 'kid doing their thing' and it is about a young girl who has volunteered her time to help children with special needs play sports. My thought that it is like the 'challenger league' not Special Olympics type volunteering. Towards the end of the segment, which has shown this girl who is about Abbie's age [13] helping different children at T-ball, soccer, basketball, the young girls says how much she has gained from this experience and when she grows up she wants to teach students with special needs.
Emma Sage pipes up and says "Hey me too, when I grow up I want to teach children with Special needs!"
I started to crack up at how funny that comment actually sounded, because I truly don't think Emma Sage thinks she is a child with special needs.
So I say to her, "You want to be a teacher like Ms. Weiss is?" [she is the special ed teacher in Emma Sage's co-teaching classroom'] and Emma Sage says: "No, we don't have any special needs kids in my class"
How wonderful is this........the kid at this point does not think that there are any special needs kids in her class ~ all she see's are peers. I hope she maintains this sense of self for a long, long time.
and I do believe if she puts her mind to it, she WILL be a teacher for students with special needs someday, if that is what she truly wants to do.
Saturday, January 31, 2009
"You cannot perceive beauty, but with a serene mind." - ~Henry David Thoreau
"We can all be angels to one another. We can choose to obey the still small stirring within, the little whisper that says, Go. Ask. Reach out. Be an answer to someone's plea. You have a part to play. Have faith.......' We can decide to risk that He is indeed there, watching, caring, cherishing us as we love and accept love. The world will be a better place for it. And wherever they are, the angels will dance." -Joan Wester Anderson Used with permission from the author Joan Wester Anderson from her website ~ Inspirational StoriesThank you!
This child is just too funny. She loves to read and write [what a glorious thing] and she has been into writing 'notes' lately.....I find them everywhere.
This is what I found today...do you think she is feeling better? [she has had a stomach bug and hasn't really kept food down, and I've not been out to the store, so we are running out of basicis.....I guess she figured she'd leave me a note so I didn't forget we need food.
Now bless her little soul....the soda is really for her Momma, as I love Fresca, and we've been out for a few days, so I've been drinking way too much coffee!
The cool thing is that she is really getting good at spelling. A month or so ago, 'Ice Cream' was spelt 'Ice Creem' so she is really learning lots!!!!
Thanks for sharing in my joy!!!!! These notes truly tickle me pink!
Emma Sage so enjoyed my cousin's babyshower......as we all did, as it was a precious time with family and friends and the anticipation of a new little soul on our family tree.
Sunday, January 25, 2009
Generations.......my children and Mamie. We stopped to visit Mamie on our way to Florida to take Katrina back to college this past August. I can't believe it is coming up on six months since the last time we saw Katrina. Thank goodness for cell phones and the ability to call free.....as we talk daily [and most times 2 or 3 or 4 or 5 times a day]
Sadly, we won't be seeing Katrina until she comes home to volunteer for Camp PALS in June. Yikes, I can't believe it is still so far away.
There are times when I feel like my heart will burst.....from such joy! This was one of those times, as Emma Sage was just in heaven at this wedding as was I, as we were all together as a family. With Katrina away at college and not seeing her for so many months, I was looking back at this moment and treasuring the precious time we had together.
Friday, January 23, 2009
Our friends over at Daniel Drinker posted about this series from Australia that is being picked up by HBO called, Summer Heights High. I am looking forward to watching the series. Thanks Dan and clan!!!!
To be with this child is such a joy.......we were outside on the pond when I took this, and she was captivated by the snow on the ice, when I took this shot. She had just brushed the snow off the frozen pond and could see how thick the ice was and the leaves underneath......
I have been spending the last few weeks in quiet reflection.....hibernating in a way,cocooned ~ surrounded by everything precious and familiar to me. I have been cherishing this 'alone' time.....listening to beautiful music, reading, baking and cooking warm nourishing food ~ watching the wonder of nature, as we have had beautiful snow falls that keep my scenery blanketed in white, giving a perfect backdrop for birds to come to my feeders and my children to squeal in delight sleigh riding and ice skating.
We have had some unsettling news [and I know so many in our great nation are experiencing the same feelings in this shaky economy] and I have been searching deep ~ re-examining my comfort zone and praying that Rick finds a job in his industry soon.
During this time, my dear cousin Beth has been battling a beast ~ and all through her fight, her spirit and resolve have given me strength and clarity. She recently shared with me an essay she wrote about her 'Easter Basket' and how, even through 38 moves in her lifetime [yes, you read that right - 38 moves] this basket found its way with her in each move.....a basket that held memories more valuable than any materialistic object could hold. It had a resounding effect on me, as so many thoughts, scenarios and "what-ifs" have been racing through my head, but after reading this essay and learning about Beth's life journey in greater detail has made me realize that change and uncertainty are fine - as it is just part of the ebb and flow of our lives and that we need to feel and experience all of our emotions....but what is most important is how we ultimately respond to these emotions.
So while hibernating this winter - I have realized the core truths of myself - that I need very little - that I have the world in my children, husband, family and friends - that if I must change where I live - where I work - it is just an external change, it does not change who I am, it only strengthens me.
While I've been quietly reflecting......my little imp has been busy celebrating her life. This child is truly the most incredible little thing I have ever known.....as she has this way about her that just sparkles and puts everything into perspective.
A sweet comment from her: At Christmas we traveled to my brother and sister-in-laws upstate New York. At dinner, she was telling friends gathered at the table about herself.....she told them she is in First grade, that she models, she swims and that she is a 'Cupcake!!!'......laughing, I realized she meant to say 'Brownie' Girl Scout.
That is my little girl.....she is the sweetest 'Cupcake' around!
