Thursday, March 26, 2009
Do you think she is a little gun shy of doctors from her 5 day hospital stay?
Saturday, March 21, 2009
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.
Audacious: An Acrostic
Enjoy this glorious day........and celebrate Trisomy 21.
Friday, March 20, 2009
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.
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........
Friday, March 13, 2009
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.
Click Here: From Fear to Awe II
Thursday, March 12, 2009
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.
Wednesday, March 11, 2009
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.
Friday, March 06, 2009
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]
Tuesday, March 03, 2009
Monday, March 02, 2009
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.
Sunday nights......gotta love it!
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.......
Click here to read the entire article
Beverly Beckham has the gift to express in words, what I feel in my heart.
Sunday, March 01, 2009
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
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 Mauzy said 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.