I started this blog about our journey with our daughter, Emma Sage, four years ago as a way of sharing with the world the 'Normalcy of Difference'
Emma Sage is now seven years old and is an amazing little girl. Her life journey has been filled with so many exciting adventures. She loves life and is not shy about living it to the fullest.
For us, Down syndrome has been a different journey, but one that has been embraced and celebrated and one that I would not change for the world, even if I had the opportunity to do so.
Emma Sage has a way of touching people’s lives……and that I believe is one of her greatest gifts.
I get e-mails and notes, that bring me such great joy.......from parents who have found their way to this blog and by doing so, it has given them a special gift, a glimpse in my daughters life, which is a life well lived......because it is her life and we are here to love her, nurture her and celebrate her for exactly who she is. These notes and e-mails are the reason I blog, as when I first was alerted to the fact that my baby might have Down syndrome, I wanted a 'glimpse' and at that time, the Internet was new and there were not many family blogs/websites out there that focused on their child with Down syndrome. I had found a wonderful online community at ParentsPlace, but there were really not any other communities out there....slowly that began to change.
One website that I found, and visited again and again, was the site of my dear friend Betsy. Betsy has a wisdom about life that is so powerful and beautiful. Her daughter Paige is a beautiful little girl who is loved dearly.
So, as I finish up this months celebration of Trisomy 21 [aka. Down syndrome] I wanted to say 'Thank you' ......to all the Mothers, fathers, sisters, brothers, aunts, uncles, grandparents, friends....I have met along this journey.
I want to thank Barbara Patton, who through sharing the love she had for her little brother, my first real 'glimpse' into Down syndrome. I want to thank the producers of 'Life Goes On' for producing a mainstream TV show staring a young actor with Down syndrome and a wonderful 'glimpse'....I want to thank Nicole, who was the first person to reach out to me when I posted a question about 'nuchal translucency' and for sharing your precious daughter with me and giving me a 'glimpse' and I want to thank all the people who are now blogging and journaling about Down syndrome, as I believe, this is the greatest way to advocate and celebrate.
Happy Down syndrome Awareness Month...........may the awareness last all year long.
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.
Friday, October 31, 2008
Thursday, October 30, 2008
31 for 21
Where you lead, I will follow........
My little Viking, heading to her sister's field hockey game.
This journey she is taking us on has been one amazing journey so far......and I look forward to where it will lead.
Words have been escaping me today. So, I leave you with this image.
Emma Sage has a Viking soul, be prepared to see where her spirit takes her, as I know she will travel wide and far, and even if she does not get very far from home, the journey will be well lived and experienced. [and I'm excited to be along for the ride!]
Wednesday, October 29, 2008
31 for 21
Emma Sage and her Momma [yes, I look old & tired...that is what no make-up looks like! lol!!!]
I've been thinking a lot about life today. How truly precious and fragile it is.
Emma Sage loves life. She truly does.
She embraces it, she takes each day in stride and lives it to the fullest, her fullest.
There are times when words escape me [that is often....my thoughts are racing in a million different directions, but my fingers don't seem to be able to place those thoughts logically on paper.]
But I do know one thing.....I too embrace life. I give thanks often though out my day, for the gift of living another day. I love my children dearly, each one of them. They are my most precious gifts from GOD and I treasure them. I will be honest, Emma Sage takes my breathe away......she makes me stop and marvel at her existence often. She truly has a magical aura about her and there is just something that makes me so appreciative that she is my child, exactly the way she is. She might have an extra chromosome.....but that does not make her any more or less than any of us. She is just .........perfectly the soul she was destined to be.
for today's 31 for 21, I would like to share two links. [I find Micheline Mason to be absolutely brilliant] and I am so thankful that Emma Sage is surrounded by family, friends, community and teachers who 'get-it'
and
Have a blessed evening......hug your children, kiss your spouse, rub the dogs belly and scratch behind the cats ears, and know that today was a gift and if we are lucky, tomorrow we will be bestowed another!!!!
31 for 21
Community........my house is full right now, with teen-agers. This is a common occurrence over the last 6+ years, since my older children became teenagers, so did their friends, and gathering together is something teenagers like [and I believe need] to do.
Tonight, there is some laughter, but sadly it is dispersed between bouts of tears and deep sobbing. You see, one of Greta's friends, an beautiful young man, a friend from toddlerhood, tragically died last night. This was a young man, who along with Greta, was offered a scholarship to attend school in Germany next year [for a year, a 5th year of high school, as German students complete 5 years of high school before University] a young man who was a Honor student, taking challenging classes throughout high school [Greta and he [along with one other classmate] were scheduled to finish an AP Calculus project tomorrow evening after her field hockey game] a gymnast and just a brilliant soul.
I'm trying to stay strong [but this Momma is having a very difficult go of it right now ~ as emotions that I have yet to reconcil over the death of my own beloved brother ~ keep overwhelming me] But for the kids, I'm trying to provide a shoulder and guidance as they might need it [and food.....lots of munchies]
I went for a three mile walk earlier.....I needed to get the cool, fresh air deep within my lungs to help clear my mind.
So, if you pray......please say a prayer for all those involved. If you don't pray and can offer up some positive thoughts, that would be greatly appreciated. I truly believe in the power of prayer and positive thoughts..............
Tonight, there is some laughter, but sadly it is dispersed between bouts of tears and deep sobbing. You see, one of Greta's friends, an beautiful young man, a friend from toddlerhood, tragically died last night. This was a young man, who along with Greta, was offered a scholarship to attend school in Germany next year [for a year, a 5th year of high school, as German students complete 5 years of high school before University] a young man who was a Honor student, taking challenging classes throughout high school [Greta and he [along with one other classmate] were scheduled to finish an AP Calculus project tomorrow evening after her field hockey game] a gymnast and just a brilliant soul.
I'm trying to stay strong [but this Momma is having a very difficult go of it right now ~ as emotions that I have yet to reconcil over the death of my own beloved brother ~ keep overwhelming me] But for the kids, I'm trying to provide a shoulder and guidance as they might need it [and food.....lots of munchies]
I went for a three mile walk earlier.....I needed to get the cool, fresh air deep within my lungs to help clear my mind.
So, if you pray......please say a prayer for all those involved. If you don't pray and can offer up some positive thoughts, that would be greatly appreciated. I truly believe in the power of prayer and positive thoughts..............
Tuesday, October 28, 2008
Monday, October 27, 2008
31 for 21
We had our local Buddy Walk this past weekend.
Emma Sage made it just in time......as she had a Birthday Party earlier in the day and then Greta 'jet-setted' her from the party to the walk [the party was about 30 minutes east of our house and the Buddy Walk was 30 minutes west of our house....so Greta had an hour drive after the party]
The rain came down and down........we decided that we were going to just have to try to get the walk in and we all put up our umbrella's......
and the wind decided to blow a bit.....
and the sky was black and angry.....
and then.......it started to let up and the sky brightened....
and the umbrella's came down and the girls clasped hands and walked....
and then Emma Sage decided that she was going to walk alone.....and quickly.
She went from the last group, to finishing first. I tell you, I should skinny as a rail keeping up with this child.
and the most fun of the day, was watching Emma Sage jamming with John.....he started to play a blue's riff....and little Miss got the microphone and sang a blues song. It went like this [it was hysterical, she was singing to his playing] "It is raining all day.......the rain won't go away" "Oh, its is raining all day".......
Emma Sage made it just in time......as she had a Birthday Party earlier in the day and then Greta 'jet-setted' her from the party to the walk [the party was about 30 minutes east of our house and the Buddy Walk was 30 minutes west of our house....so Greta had an hour drive after the party]
The rain came down and down........we decided that we were going to just have to try to get the walk in and we all put up our umbrella's......
and the wind decided to blow a bit.....
and the sky was black and angry.....
and then.......it started to let up and the sky brightened....
and the umbrella's came down and the girls clasped hands and walked....
and then Emma Sage decided that she was going to walk alone.....and quickly.
She went from the last group, to finishing first. I tell you, I should skinny as a rail keeping up with this child.
and the most fun of the day, was watching Emma Sage jamming with John.....he started to play a blue's riff....and little Miss got the microphone and sang a blues song. It went like this [it was hysterical, she was singing to his playing] "It is raining all day.......the rain won't go away" "Oh, its is raining all day".......
Sunday, October 26, 2008
31 for 21
The other day, on the first list serve I joined when I was pregnant with Emma Sage, a Mother posted a thread that touched my heart in many ways.
I e-mailed the author of the post to first, say "Hello" and that I was so glad that she came out of 'just read' and posted to all of us on the list.
Her words are very poignant and speak for so many in our community ~ A community of Mothers, Fathers, Family, Friends who love and care about someone that has Down syndrome.
During this month, I have been sharing Emma Sage and her day-to-day adventures. I have also been sharing links that I have come across and news articles.....but I do believe that this post will be my most important post in sharing during Down syndrome Awareness Month [thanks to the permission of the author.......and my new friend, Mary Beth]
As you read this post, know that even though some of our children have greater struggles than others, each and everyone of our children are our blessings and are loved dearly........and we are above all a community.
Dear Friends,
Although I go back many years as a member of this list, I have mostly been reading only for a long time. Like many others, my 18 year old son has autism as well as Down syndrome.
As we enter the closing stages of "Down Syndrome Awareness Month", I wanted to take a moment to ask you to be aware of the entire community of those of us with Down syndrome or living with someone with DS.
I know that there are families out there who have such seriously ill loved ones with DS who simply don't feel like celebrating much of anything right now. Those of us who have seen our loved ones though a life-threatening illness ourselves- can we take some time to just be with those families? And if our loved one with DS has never had such a crisis, all the more reason to see if there is some way you can show your gratitude- by reaching out that helping hand.
Some of us have that family member with Down syndrome who is grown, or nearly so- and does not speak using words. True conversations will never be a reality. All the speech therapy in the world will not make it so. For these families it can be a stretch to want to join in with a charming list of accomplishments or funny anecdotes. For these families, celebrating DS awareness month means that some people care enough to learn the signs or communication methods that facilitate other ways to communicate.
Some of us have a loved one with DS who "still" is not walking- or not using the toilet independently, or not able to eat be unhooked from a feeding tube, or eat what everyone else commonly eats. Some have a chronic and debilitating illness (such as diabetes or the effects of a stroke or other illness) that requires monitoring their health and well-being- 24/7. Down Syndrome Awareness month might mean taking time to slow down so that these loved ones can have their personal hygiene and/or dietary/and/or movement needs attended to with dignity and the extra time required.
Some of us have a loved one with DS who is not able to leave the house due to agoraphobia or other anxieties, or perhaps has behaviors that cause injuries to self or others. I know that there are families on this list who have not been able to leave their loved one with DS even for a few hours - for over 20 years. Some of that is due to lack of funds but some of it is due to lack of energy to go find and train the right support person. Do you know of a family like this in your local DS community?
Some of us have a loved one with DS who will not be going to college after high school. We have a young adult with DS who lives with us who does not comprehend what a job entails, or that you need money to buy stuff, or cannot work with more than one or two others nearby. Some of us have a loved one with DS who loved being in school but became lost after those full, planned days were behind them. They saw their siblings or classmates move away and then the constraining arm of lack of people support, financial support, transportation support, etc., cast a harsh light on an uncertain future. Or their own self awareness about having Down syndrome makes it unlikely that they will drive a car or have a baby or, or, or....and the depression crashes down and colors everything quite differently.
This is not to diminish or downplay anyone's accomplishments or dreams for the best possible future. In truth, I LOVE hearing my friends share their stories and I love the "brags" - most of the time. I don't want to rain on my friends' parades with sorry stories of my son's life sounding -um, a little grim some days. But my friends who have e-mailed or called saying,"are things going any better? Can we get together for a little fun? Or just, "I am sending virtual chocolate by the case!" just acknowledge that my son's accomplishments are going to look quite different by comparison.
So help us celebrate every step forward, even if it be millimeters and not feet. Call us if we haven't been seen at community events for a while, or if our child is now in a segregated school program due to that thing that happened last school year.
My reason for writing this is that I am ALWAYS aware of our somehow having to declare our children's "worthiness", for lack of a better word. We are always declaring that they CAN talk, walk, make good choices, go to college, get a job, live on their own, etc. We take offense at anyone implying that the vast majority of people with trisomy 21 are developmentally disabled, (oops, wrong lable) -or cognitively impaired (well, can't use that word impaired, either....) We decide to take offense if someone wonders out loud if our children are taking "life skills" instead of academic courses, or if they are doing those demeaning jobs that "no one else wants", [so our kids shouldn't either], or that we should insist that they go on to college, even though the last few years of high school were a bust.
We ARE afraid to say very much about some of the tough spots some of us face, because we don't want to scare the new parents. (And I don't blame us for not wanting to do that, but...) we can't pretend that everyone will grow up to be the prom queen or nationally known actor or even the young adult that hits the speaking circuit with their mom or dad for their local DS association.
I suggest to parents of very young children with DS: get to meet adults with DS, and their parents and families, if you can. Spend time with them and cultivate a relationship with them. While their early childhood experiences will not be the same as the opportunities afforded yours, you will likely get the stories that can help you along the way for what your child's future might look like.
Most importantly, you will find that some families who appear to face the most daunting challenges somehow find a way to laugh, or develop or a sense of dark humor, or deep faith, or other way to cope. Some families do succumb to what seems like insurmountable pressures and challenges.
During Down Syndrome Awareness month, how can we simply walk with some of our DS community members who struggle or have dropped out because they have lost their sense of belonging? Perhaps the simple act of calling that mom you haven't seen for the past year and asking " how are you doing these days?" and then listening could be the first step to your own awareness in a new way.
God Bless Us, Every One!
Mary Beth Paul
PS. The most amazing book that should be on every new and old parent's must read list is Mental Wellness in Adults with Down Syndrome. Google the title for more info. Its authors paint a loving, practical, and very real portrait of the similarities and variations among those with T21.
Reprinted with permission from the author.
Mary Beth......Thank you!
I e-mailed the author of the post to first, say "Hello" and that I was so glad that she came out of 'just read' and posted to all of us on the list.
Her words are very poignant and speak for so many in our community ~ A community of Mothers, Fathers, Family, Friends who love and care about someone that has Down syndrome.
During this month, I have been sharing Emma Sage and her day-to-day adventures. I have also been sharing links that I have come across and news articles.....but I do believe that this post will be my most important post in sharing during Down syndrome Awareness Month [thanks to the permission of the author.......and my new friend, Mary Beth]
As you read this post, know that even though some of our children have greater struggles than others, each and everyone of our children are our blessings and are loved dearly........and we are above all a community.
Dear Friends,
Although I go back many years as a member of this list, I have mostly been reading only for a long time. Like many others, my 18 year old son has autism as well as Down syndrome.
As we enter the closing stages of "Down Syndrome Awareness Month", I wanted to take a moment to ask you to be aware of the entire community of those of us with Down syndrome or living with someone with DS.
I know that there are families out there who have such seriously ill loved ones with DS who simply don't feel like celebrating much of anything right now. Those of us who have seen our loved ones though a life-threatening illness ourselves- can we take some time to just be with those families? And if our loved one with DS has never had such a crisis, all the more reason to see if there is some way you can show your gratitude- by reaching out that helping hand.
Some of us have that family member with Down syndrome who is grown, or nearly so- and does not speak using words. True conversations will never be a reality. All the speech therapy in the world will not make it so. For these families it can be a stretch to want to join in with a charming list of accomplishments or funny anecdotes. For these families, celebrating DS awareness month means that some people care enough to learn the signs or communication methods that facilitate other ways to communicate.
Some of us have a loved one with DS who "still" is not walking- or not using the toilet independently, or not able to eat be unhooked from a feeding tube, or eat what everyone else commonly eats. Some have a chronic and debilitating illness (such as diabetes or the effects of a stroke or other illness) that requires monitoring their health and well-being- 24/7. Down Syndrome Awareness month might mean taking time to slow down so that these loved ones can have their personal hygiene and/or dietary/and/or movement needs attended to with dignity and the extra time required.
Some of us have a loved one with DS who is not able to leave the house due to agoraphobia or other anxieties, or perhaps has behaviors that cause injuries to self or others. I know that there are families on this list who have not been able to leave their loved one with DS even for a few hours - for over 20 years. Some of that is due to lack of funds but some of it is due to lack of energy to go find and train the right support person. Do you know of a family like this in your local DS community?
Some of us have a loved one with DS who will not be going to college after high school. We have a young adult with DS who lives with us who does not comprehend what a job entails, or that you need money to buy stuff, or cannot work with more than one or two others nearby. Some of us have a loved one with DS who loved being in school but became lost after those full, planned days were behind them. They saw their siblings or classmates move away and then the constraining arm of lack of people support, financial support, transportation support, etc., cast a harsh light on an uncertain future. Or their own self awareness about having Down syndrome makes it unlikely that they will drive a car or have a baby or, or, or....and the depression crashes down and colors everything quite differently.
This is not to diminish or downplay anyone's accomplishments or dreams for the best possible future. In truth, I LOVE hearing my friends share their stories and I love the "brags" - most of the time. I don't want to rain on my friends' parades with sorry stories of my son's life sounding -um, a little grim some days. But my friends who have e-mailed or called saying,"are things going any better? Can we get together for a little fun? Or just, "I am sending virtual chocolate by the case!" just acknowledge that my son's accomplishments are going to look quite different by comparison.
So help us celebrate every step forward, even if it be millimeters and not feet. Call us if we haven't been seen at community events for a while, or if our child is now in a segregated school program due to that thing that happened last school year.
My reason for writing this is that I am ALWAYS aware of our somehow having to declare our children's "worthiness", for lack of a better word. We are always declaring that they CAN talk, walk, make good choices, go to college, get a job, live on their own, etc. We take offense at anyone implying that the vast majority of people with trisomy 21 are developmentally disabled, (oops, wrong lable) -or cognitively impaired (well, can't use that word impaired, either....) We decide to take offense if someone wonders out loud if our children are taking "life skills" instead of academic courses, or if they are doing those demeaning jobs that "no one else wants", [so our kids shouldn't either], or that we should insist that they go on to college, even though the last few years of high school were a bust.
We ARE afraid to say very much about some of the tough spots some of us face, because we don't want to scare the new parents. (And I don't blame us for not wanting to do that, but...) we can't pretend that everyone will grow up to be the prom queen or nationally known actor or even the young adult that hits the speaking circuit with their mom or dad for their local DS association.
I suggest to parents of very young children with DS: get to meet adults with DS, and their parents and families, if you can. Spend time with them and cultivate a relationship with them. While their early childhood experiences will not be the same as the opportunities afforded yours, you will likely get the stories that can help you along the way for what your child's future might look like.
Most importantly, you will find that some families who appear to face the most daunting challenges somehow find a way to laugh, or develop or a sense of dark humor, or deep faith, or other way to cope. Some families do succumb to what seems like insurmountable pressures and challenges.
During Down Syndrome Awareness month, how can we simply walk with some of our DS community members who struggle or have dropped out because they have lost their sense of belonging? Perhaps the simple act of calling that mom you haven't seen for the past year and asking " how are you doing these days?" and then listening could be the first step to your own awareness in a new way.
God Bless Us, Every One!
Mary Beth Paul
PS. The most amazing book that should be on every new and old parent's must read list is Mental Wellness in Adults with Down Syndrome. Google the title for more info. Its authors paint a loving, practical, and very real portrait of the similarities and variations among those with T21.
Reprinted with permission from the author.
Mary Beth......Thank you!
Saturday, October 25, 2008
31 for 21
The other day, Emma Sage, says to me...."I love Mike"
So I ask?, "Is Mike a friend from school?"
"No" she replies...."your brother Mike"
laughing I say, "You mean your Uncle Mikey"......
"Yes, your brother, my Uncle" she responds.
Still laughing, I ask her if she wants to call him and tell him that.
She does, and she calls.....leaving a cute [but I do believe an intelliable message on the other end] as tonight she gives Uncle Mike a big hug and ask's "Why didn't you call me back?"
Aunt Victoria thought it was Emma Sage but the connection was bad [as we used the cell phone and the headset that does not fit on Emma Sage's ear properly and she had to hold it up, covering up the mouth piece section] so Victoria *69'd the number and got our cell number which did not ring a bell with her so she figured it was a mistaken call [thus, no call back to Emma Sage]
It is so wonderful how Emma Sage adores her family [we spent a lovely evening tonight at my sister's as it was her hubby's birthday and the cousins just played and played.
Here is Emma Sage with her beloved Uncle Mikey....
What is also so very precious, is that she talks about my brother Kenny often. She does not know the circumstances of his tragic death....she just knows that he has died. She always will tell me that she 'Loves Uncle Kenny, too" when she is talking about Uncle Mikey.
My brother Kenny passed away a week after Emma Sage was born. He only got to see a photograph of her. I so wish he had the opportunity to hold her.....and to watch her grow. You see, my brother Kenny always rooted for the 'Under dog' and he would have adored Emma Sage.
This is an old picture of 'Uncle Kenny' holding up the world!!!!
So I ask?, "Is Mike a friend from school?"
"No" she replies...."your brother Mike"
laughing I say, "You mean your Uncle Mikey"......
"Yes, your brother, my Uncle" she responds.
Still laughing, I ask her if she wants to call him and tell him that.
She does, and she calls.....leaving a cute [but I do believe an intelliable message on the other end] as tonight she gives Uncle Mike a big hug and ask's "Why didn't you call me back?"
Aunt Victoria thought it was Emma Sage but the connection was bad [as we used the cell phone and the headset that does not fit on Emma Sage's ear properly and she had to hold it up, covering up the mouth piece section] so Victoria *69'd the number and got our cell number which did not ring a bell with her so she figured it was a mistaken call [thus, no call back to Emma Sage]
It is so wonderful how Emma Sage adores her family [we spent a lovely evening tonight at my sister's as it was her hubby's birthday and the cousins just played and played.
Here is Emma Sage with her beloved Uncle Mikey....
What is also so very precious, is that she talks about my brother Kenny often. She does not know the circumstances of his tragic death....she just knows that he has died. She always will tell me that she 'Loves Uncle Kenny, too" when she is talking about Uncle Mikey.
My brother Kenny passed away a week after Emma Sage was born. He only got to see a photograph of her. I so wish he had the opportunity to hold her.....and to watch her grow. You see, my brother Kenny always rooted for the 'Under dog' and he would have adored Emma Sage.
This is an old picture of 'Uncle Kenny' holding up the world!!!!
Friday, October 24, 2008
31 for 21
The Golden Chromosome.....[I really like the title of that award!]
Litchfield man with Down syndrome who was the first person with Down's syndrome to complete the London Marathon has been honoured with a special award from Germany.
Simon Beresford collected The Golden Chromosome award on one of his increasingly frequent visits to the country.
He has now completed the Berlin Marathon twice among his many achievements.
And his inspiration kick-started a pioneering running club for Germans with Down's, which ran the marathon for the first time this year alongside Simon.........................[click above link to read the whole inspiring story!]
Wow........I just love reading articles like this.
What strikes me the most about these types of articles is this fact: How many of us here, reading right now have accomplished such a goal? Running a marathon is on my life list. I'm working on completing a 1/2 marathon first....you know, baby steps. lol!!!
So, when I read about people with Down syndrome, setting goals, working hard, and then achieving them....my heart just about leaps out of my chest. Because in actuality, that is all I truly wish for all of my children. Is that they have dreams, set goals, work hard towards those goals, and by the Grace of GOD.....they achieve some of their dreams.
To me, that is the beauty of life. Something as simple as that. Dreaming, working, reaching and hopefully achieving that dream. What ever it may be.
Litchfield man with Down syndrome who was the first person with Down's syndrome to complete the London Marathon has been honoured with a special award from Germany.
Simon Beresford collected The Golden Chromosome award on one of his increasingly frequent visits to the country.
He has now completed the Berlin Marathon twice among his many achievements.
And his inspiration kick-started a pioneering running club for Germans with Down's, which ran the marathon for the first time this year alongside Simon.........................[click above link to read the whole inspiring story!]
Wow........I just love reading articles like this.
What strikes me the most about these types of articles is this fact: How many of us here, reading right now have accomplished such a goal? Running a marathon is on my life list. I'm working on completing a 1/2 marathon first....you know, baby steps. lol!!!
So, when I read about people with Down syndrome, setting goals, working hard, and then achieving them....my heart just about leaps out of my chest. Because in actuality, that is all I truly wish for all of my children. Is that they have dreams, set goals, work hard towards those goals, and by the Grace of GOD.....they achieve some of their dreams.
To me, that is the beauty of life. Something as simple as that. Dreaming, working, reaching and hopefully achieving that dream. What ever it may be.
Thursday, October 23, 2008
Wednesday, October 22, 2008
Can you take a moment to VOTE?
Well, yes in 13 days, that is part of our civic duty [I believe it is our civic honor and privilege to do so on election day] BUT this is by far a much more delightful vote.
Please VOTE for Sir Kaden, as he is one of the finalists in the 5 minutes for Mom's Sleeping Angel contest.
He is number #18 Kaden and Angel Ava's Mommy
Emma Sage's says "Thank you for voting for my friend!"
Please VOTE for Sir Kaden, as he is one of the finalists in the 5 minutes for Mom's Sleeping Angel contest.
He is number #18 Kaden and Angel Ava's Mommy
Emma Sage's says "Thank you for voting for my friend!"
31 for 21
"Help one another, is part of the religion of sisterhood." ~Louisa May Alcott
Katrina e-mailed me this picture last night....she had been playing with it in a photoprocessing program. When I opened it, of coarse my heart paused....to see two of my girls enjoying some together 'camera' time. But what stuck me the most, was that this image is such a powerful reminder of our story....Emma Sage's story, because a huge part of her life [and our life] is the bond of siblings. Sisters.....and brother.
Emma Sage is truly blessed [as are her siblings] because all four of my children are bonded....by this connection of family that is so strong. They love each other [sometimes they can bug the daylights out of each other] but as a whole, my children truly love each other....so much so that the bond at times can seem palpable.....like an aura of siblinghood that is so strong that you can literally see the connections between them, like I see in this photograph.
Tuesday, October 21, 2008
Blessings of Friendship
As with any of our children, we hope that their lives are blessed with the joy of friendship.........here are some images from Emma Sage's first 'official' classmate party with friends from school.
I have lovingly coined my daughter my 'Good Will Ambassador to Humanity' and I have done so because of how she radiates such happiness and joy with others. Since she was a baby, she has reached her hand out in friendship [to everyone she has met] and she smiles a smile that makes you feel that 'all is good with the world'.
As I snapped pictures [Caroline's Mother as appreciative, as you know how impossible it is to photograph your child's party and run it at the same time] I was so blissfully content, watching Emma Sage interact with her school peers. These children genuinely like her and she them. Caroline wanted Emma Sage to sit opposite her at the head of the table [the two little queens] and she was so sweet assisting all her friends in the project and handing out food. When she would stop with Emma Sage though.....Well.....just look at the photographs, the pictures say it all!!!
Have present will travel.....
Listening to the instructor and their craft projects....this was a really cool place called Studio U.
The opposite side of the table....
The beginning.........
This is the look.....that just melts my heart.
One of the few stops to wash their hands......messy, but, oh, what a fun project!!!
Working, working,working [Emma Sage loves to paint and create!]
Emma Sage's favorite part.......the glitter!!!
A girl scull.....the boys had boy sculls...too cute. They also decided that they were going to boycott the Hannah Montana napkins. I just LOVE 6 & 7 year old boys. Actually 8 to 10 year olds are my favorite age for boys.....and then 18, 19, 20....40, 41, 42....lol!!!!
and one of her three BEST friends in the whole world....her sister Greta [and Katrina and Otto]
I have lovingly coined my daughter my 'Good Will Ambassador to Humanity' and I have done so because of how she radiates such happiness and joy with others. Since she was a baby, she has reached her hand out in friendship [to everyone she has met] and she smiles a smile that makes you feel that 'all is good with the world'.
As I snapped pictures [Caroline's Mother as appreciative, as you know how impossible it is to photograph your child's party and run it at the same time] I was so blissfully content, watching Emma Sage interact with her school peers. These children genuinely like her and she them. Caroline wanted Emma Sage to sit opposite her at the head of the table [the two little queens] and she was so sweet assisting all her friends in the project and handing out food. When she would stop with Emma Sage though.....Well.....just look at the photographs, the pictures say it all!!!
Have present will travel.....
Listening to the instructor and their craft projects....this was a really cool place called Studio U.
The opposite side of the table....
The beginning.........
This is the look.....that just melts my heart.
One of the few stops to wash their hands......messy, but, oh, what a fun project!!!
Working, working,working [Emma Sage loves to paint and create!]
Emma Sage's favorite part.......the glitter!!!
A girl scull.....the boys had boy sculls...too cute. They also decided that they were going to boycott the Hannah Montana napkins. I just LOVE 6 & 7 year old boys. Actually 8 to 10 year olds are my favorite age for boys.....and then 18, 19, 20....40, 41, 42....lol!!!!
and one of her three BEST friends in the whole world....her sister Greta [and Katrina and Otto]
31 for 21
Shifting Perspectives.......
You MUST click on the above link......as it has to be one of the most incredible projects I have seen on Down syndrome. I am in awe of the project, inspired by it and completely moved by the images and answers to the question this year 'Does Down syndrome exist in every race?'
Poke around the site a bit.....it is an amazing project.
You MUST click on the above link......as it has to be one of the most incredible projects I have seen on Down syndrome. I am in awe of the project, inspired by it and completely moved by the images and answers to the question this year 'Does Down syndrome exist in every race?'
Poke around the site a bit.....it is an amazing project.
31 for 21
Football Legend Would Pick His Down Syndrome Son Over ‘Normal’ Child
Tuesday, October 21, 2008
By Penny Starr, Senior Staff Writer
Coach Gene Stallings and his son Johnny – Legendary football coach Gene Stallings made history as the youngest college coach at the helm of his alma mater, Texas A&M, and a perfect 12-0 season during his reign at the University of Alabama. But he says raising his son Johnny was his greatest reward.
“My life wouldn’t have been nearly as rich without Johnny, no question about it,” Stallings told CNSNews.com of his son, who was born with Down syndrome in 1962.
Johnny outlived his doctors’ prediction that he wouldn’t live past the age of two because of heart problems, and when he died at 46 on Aug. 2, the accolades poured in.
Click here to read the rest of the story.........
Tuesday, October 21, 2008
By Penny Starr, Senior Staff Writer
Coach Gene Stallings and his son Johnny – Legendary football coach Gene Stallings made history as the youngest college coach at the helm of his alma mater, Texas A&M, and a perfect 12-0 season during his reign at the University of Alabama. But he says raising his son Johnny was his greatest reward.
“My life wouldn’t have been nearly as rich without Johnny, no question about it,” Stallings told CNSNews.com of his son, who was born with Down syndrome in 1962.
Johnny outlived his doctors’ prediction that he wouldn’t live past the age of two because of heart problems, and when he died at 46 on Aug. 2, the accolades poured in.
Click here to read the rest of the story.........
I agree with Coach Stallings.......while my life has been an amazing journey, and all of my children are the jewels of my life, I know that Emma Sage has added a facet, a sparkle that radiates in all of our hearts and I know I am a richer Mother, Woman and Human Being because of her.
Monday, October 20, 2008
31 for 21
Michael Jurogue Johnson
The above watercolors of Emma Sage were painted by Michael Jurogue Johnson, and inspirational young man with Down syndrome, who is a wonderful painter.
Please go visit his site on the link about and visit all the galleries of his work.
If you are wondering what to do for your Christmas/Holiday cards this year, please consider purchasing some of Michael's, as they are just beautiful and all sales go to help him continue to purchase the supplies he needs to paint.
Christmas and Note Cards Link
I also know that if you e-mail Robin, Michael's Mother, she might have a selection of a box set of Holiday cards...I had seen them in the past, but I couldn't find them scrolling through last night [life has been so very busy, I have had no time to even stop and 'think', but I know there were there in the past]
P.S. aren't those paintings of Emma Sage just wonderful!!!! I look at them an marvel at Michael's talent.
Saturday, October 18, 2008
Friends......
Just a little preview [as this Momma is too tired to upload more pictures or write about the day] but here is one shot from the Birthday Party that Emma Sage attended today.
Let's just say it was so much fun and quite magical to watch the interactions of all the children.
"When I find myself fading, I close my eyes and realize my friends are my energy." ~Buddha
Let's just say it was so much fun and quite magical to watch the interactions of all the children.
"When I find myself fading, I close my eyes and realize my friends are my energy." ~Buddha
31 for 21
Photo Sharing - Video Sharing - Photo Printing - Photo Books
"To dance is to be out of yourself. Larger, more beautiful, more powerful. This is power, it is glory on earth and it is yours for the taking." ~Agnes De Mille
Emma Sage LOVES to dance......since she was a baby, she has been moving to the beat. She has rhythm in her little soul.
I was able to go into class today to video tape this little section of their routine, for her to practice at home. [all the other parents want a copy too, so their little dancers can do the same thing]
I hope you get as much joy as I do, watching her dance......she is the first little dancer off to the left of her teacher.....the one with hips that love to wiggle!!!!
Friday, October 17, 2008
31 for 21
A conversation with Nick.
Nick is a young boy that comes to play with us after school three days a week with his big sister Cori.
It just happens that Nick's Mother had contacted me this summer [as she was referred to me by a few people for childcare]......we met and it was a good fit.
Well, lo-and-behold, I believe GODs hand was involved in Nick coming to our home. You see, Nick is seated right across from Emma Sage at their table in 1st grade. They have become good friends, and Nick is just a delight.
So on Tuesday, we were chatting and Nick says to me....
"Emma Sage is doing great at school....she always does her work and only sometimes does the other teacher have to help her"
I smile and say "Oh Nick, that is great to hear"
he continues...."and she is the most popular girl in class. Everyone likes Emma Sage and are so nice to her and she is so nice to us"
a bigger smile from me "Well, Nick, I think Emma Sage is so blessed to be in class with you and all those other children"
Nick smiles and says "Yeah, we are"
and one more Nick story.
Emma Sage had her tonsils and adenoids removed two Wednesdays ago. I usually have Nick and Cori on Wednesdays, so we had to make other plans.....so Nick did not get to see Emma Sage until the following Monday.
On his own [and his Mother said he was so determined to do this and so very concern about his friend] went and got a old Rita's Italian Ice card he had [his Mother say's there is like a $1.62 left on it] but he wanted her to have something cold for her throat. He wrapped the present in tissue paper, made a little note and taped it all together.
How precious is that?
and now off to being a popular little girl. Emma Sage has a birthday party tomorrow for her friend Caroline and one next week for her friend Alexandra [the little girl on the bus].
As I look at my daughter, I realize, just as it is for all of us. Our life is the here and now....it is the journey [it is not some off distance dream or goal....while those are great to have, they are not your life] it is the living in the moment....it is each step of the journey that is what makes our lives. The end goals or dreams are wonderful,,,,,but we need to be living and celebrating each step of the way.
So my little girl is living and celebrating and making her steps towards her dreams......
and I'm so blessed to be here watching her go.......
Nick is a young boy that comes to play with us after school three days a week with his big sister Cori.
It just happens that Nick's Mother had contacted me this summer [as she was referred to me by a few people for childcare]......we met and it was a good fit.
Well, lo-and-behold, I believe GODs hand was involved in Nick coming to our home. You see, Nick is seated right across from Emma Sage at their table in 1st grade. They have become good friends, and Nick is just a delight.
So on Tuesday, we were chatting and Nick says to me....
"Emma Sage is doing great at school....she always does her work and only sometimes does the other teacher have to help her"
I smile and say "Oh Nick, that is great to hear"
he continues...."and she is the most popular girl in class. Everyone likes Emma Sage and are so nice to her and she is so nice to us"
a bigger smile from me "Well, Nick, I think Emma Sage is so blessed to be in class with you and all those other children"
Nick smiles and says "Yeah, we are"
and one more Nick story.
Emma Sage had her tonsils and adenoids removed two Wednesdays ago. I usually have Nick and Cori on Wednesdays, so we had to make other plans.....so Nick did not get to see Emma Sage until the following Monday.
On his own [and his Mother said he was so determined to do this and so very concern about his friend] went and got a old Rita's Italian Ice card he had [his Mother say's there is like a $1.62 left on it] but he wanted her to have something cold for her throat. He wrapped the present in tissue paper, made a little note and taped it all together.
How precious is that?
and now off to being a popular little girl. Emma Sage has a birthday party tomorrow for her friend Caroline and one next week for her friend Alexandra [the little girl on the bus].
As I look at my daughter, I realize, just as it is for all of us. Our life is the here and now....it is the journey [it is not some off distance dream or goal....while those are great to have, they are not your life] it is the living in the moment....it is each step of the journey that is what makes our lives. The end goals or dreams are wonderful,,,,,but we need to be living and celebrating each step of the way.
So my little girl is living and celebrating and making her steps towards her dreams......
and I'm so blessed to be here watching her go.......
and now a KING........
Senior with Down Syndrome Crowned Rocky King
By Chris Minor
Posted: Oct 17, 2008 04:23 PM EDT
Rock Island, IL --History was made at Rock Island High School's homecoming coronation when senior John Garlock, born with Down syndrome 18 years ago, was crowned homecoming king.
''They (the kids) were screaming, John, John. I was loving it'', said John.
He won the most votes from the 1,555 member student body and the crowd went wild.
John's been in the public school system in Rock Island since daycare, and it wasn't always easy.
''The battles to get him included in school, and then to have the whole student body behind him'', his mom Janis said, with a couple tears streaming from her face. ''It was heartwrenching, it really was.'' ......................click to read more
.......what a glorious fall this has been. A King and a Queen!!!!!
By Chris Minor
Posted: Oct 17, 2008 04:23 PM EDT
Rock Island, IL --History was made at Rock Island High School's homecoming coronation when senior John Garlock, born with Down syndrome 18 years ago, was crowned homecoming king.
''They (the kids) were screaming, John, John. I was loving it'', said John.
He won the most votes from the 1,555 member student body and the crowd went wild.
John's been in the public school system in Rock Island since daycare, and it wasn't always easy.
''The battles to get him included in school, and then to have the whole student body behind him'', his mom Janis said, with a couple tears streaming from her face. ''It was heartwrenching, it really was.'' ......................click to read more
.......what a glorious fall this has been. A King and a Queen!!!!!
Circle Game.....
I love Joni Mitchell.....I grew up listening to her music and many of her songs have such special places in my memories....
My life is like the Circle Game right now....
"And the seasons they go round and round
And the painted ponies go up and dawn
Were captive on the carousel of time
We cant return we con only look behind
From where we came
And go round and round and round "
I"m going round and round on that carousel.........so busy with all of the children, my own and those that I care for.
So, I've been a bit remiss in my posting, lots of thoughts running around in my head, not enough time to put them all down.
Things to come to post about:
Emma Sage's IEP meeting
Emma Sage's dance card being filled up with Birthday Parties
Greta's Field Hockey team.....an incredible season so far, they had four games this week alone [so Momma has had no time]
Otto's first school dance
Greta's college search and scholarship searches [so exciting]
Katrina busy at college and the joy of being able to keep up with her via cell phone and Internet.
So.....embrace this season.
Give thanks for the many blessings we have and how incredibly precious life is....every moment, every season.......and as Joni Mitchell sang, these seasons come round and round so very quickly and before you know it, your babies are grown and riding alone. [not really, you know we Mommas are always watching them and waiting to see if they need a hand]
Yesterday a child came out to wonder
Caught a dragonfly inside a jar
Fearful when the sky was full of thunder
And tearful at the falling of a star
Then the child moved ten times round the seasons
Skated over ten clear frozen streams
Words like, when youre older, must appease him
And promises of someday make his dreams
And the seasons they go round and round
And the painted ponies go up and dawn
Were captive on the carousel of time
We cant return we con only look behind
From where we came
And go round and round and round
In the circle game.
Sixteen springs and sixteen summers gone now
Cartwheels turn to car wheels thru the town
And they tell him,
Take your time, it wont be long now
Till you drag your feet to slow the circles down
And the seasons they go round and round
And the painted ponies go up and dawn
Were captive on the carousel of time
We cant return we can only look behind
From where we came
And go round and round and round
In the circle game
So the years spin by and now the boy is twenty
Though his dreams have lost some grandeur
Coming true
Therell be new dreams, maybe better dreams and plenty
Before the last revolving year is through.
And the seasons they go round and round
And the painted ponies go up and down
Were captive on the carousel of time
We cant return, we can only look behind
From where we came
And go round and round and round
In the circle game
Wednesday, October 15, 2008
Crowned High School Queen
Senior With Down Syndrome Crowned High School Queen
Kristin Pass Treats Peers Like Royalty, Friends and Family Say
By EMILY FRIEDMAN
Oct. 14, 2008
Stories like this just warm my heart. It makes me so happy to know that there are communities that embrace differences and celebrates those differences, as like it is nothing uncommon......just what you would do if a girl like Kristin Pass was part of your Senior class and you had to choose the one girl who represents your spirit....your school.....your community.
The tag line says it all..............Kristin Pass Treats Peers like Royalty, friends and family say ~ so who better to be crowned the QUEEN, but the one who acts like a queen to all and for all.
Way to go Aledo High School !!!!!!!!!!
Kristin Pass Treats Peers Like Royalty, Friends and Family Say
By EMILY FRIEDMAN
Oct. 14, 2008
Stories like this just warm my heart. It makes me so happy to know that there are communities that embrace differences and celebrates those differences, as like it is nothing uncommon......just what you would do if a girl like Kristin Pass was part of your Senior class and you had to choose the one girl who represents your spirit....your school.....your community.
The tag line says it all..............Kristin Pass Treats Peers like Royalty, friends and family say ~ so who better to be crowned the QUEEN, but the one who acts like a queen to all and for all.
Way to go Aledo High School !!!!!!!!!!
Tuesday, October 14, 2008
31 for 21
My post today is not about Emma Sage.......it is about a little boy named Joe.
Joe's story was shared over at Mosaic Moments the other day, and I have watched this photo montage a dozen times since then.
After you see it, you will agree with me, Joe is one incredible young boy!!!!
Warning: Have tissues near by and be prepared to have your heart swell with love.
Joe's story was shared over at Mosaic Moments the other day, and I have watched this photo montage a dozen times since then.
After you see it, you will agree with me, Joe is one incredible young boy!!!!
Warning: Have tissues near by and be prepared to have your heart swell with love.
Monday, October 13, 2008
Lily Rose
Lily Rose, that is the color Emma Sage would choose if she is the lucky little girl that is chosen in the 5 minutes for Mom's Win a New Bedroom Set.
Emma Sage has the tiniest room [but that is OK, as she is the tiniest little girl] but does not have a bedroom set. She has a toddler bed and an armoier.....so this bedroom set would be so cool for her to have to hold her clothes and her treasures and to rest her little soul upon in sleep.
My little sleeping angel.....do you think she is dreaming in colors of 'Lily Rose'?
I do!!!!
Emma Sage has the tiniest room [but that is OK, as she is the tiniest little girl] but does not have a bedroom set. She has a toddler bed and an armoier.....so this bedroom set would be so cool for her to have to hold her clothes and her treasures and to rest her little soul upon in sleep.
My little sleeping angel.....do you think she is dreaming in colors of 'Lily Rose'?
I do!!!!
Sunday, October 12, 2008
31 for 21
"You don't choose your family. They are God's gift to you,as you are to them."
~Desmond Tutu
Saturday, October 11, 2008
31 for 21
I have been fall cleaning....something that needs to be done. Not dusting or such, I do that everyday. But cleaning of my stuff. ~ as you see, I am a pack rat. I can't let go of things that have been given to me from others [especially things that my dear Mother gave me] and this includes every note, card, picture I have received over the coarse of the last 44 years. Yes, I have every one tucked away. On top of that, I have books....book, upon book. [and yes, you are thinking, "but you take about dozens of books every week from the library", and I do] but I also have books that I have collected through the years.
So I'm cleaning. Something that needs to be done in a tiny house, and something that is challenging me to 'let go' so I can be free to adopt the 'Be ~ Do ~ Have' paradigm of life. [Whilst cleaning I cam across my “Conversations with God” books by Neale Donald Walsch.
This is how Emma Sage lives.....she has things, but she is not extremely connected to them as I am....she is rather a more 'here in the present' type person. She would rather by doing or giving, than receiving.
and this image brought me to that place of 'being'..........
So I'm cleaning. Something that needs to be done in a tiny house, and something that is challenging me to 'let go' so I can be free to adopt the 'Be ~ Do ~ Have' paradigm of life. [Whilst cleaning I cam across my “Conversations with God” books by Neale Donald Walsch.
This is how Emma Sage lives.....she has things, but she is not extremely connected to them as I am....she is rather a more 'here in the present' type person. She would rather by doing or giving, than receiving.
and this image brought me to that place of 'being'..........
31 for 21
Homecoming 2008
Tonight is the night........for Greta's senior Homecoming dance.
She looked like a princess and she was so excited to be dancing the night away with her friends....
and a thousand miles away......a dear online friend of mines daughter is attending her Homecoming dance, as the Honorary Homecoming Queen.
Meet Laney..............
How cool is that.....what a wonderful school to embrace Laney and fully include her, especially in this Homecoming Ceremony.
My heart is so full of joy for Laney and my hopes and dreams are racing at the thought of Emma Sage attending her first Homecoming dance in eight years,,,,and who knows, in eleven years, I could be sitting her posting a picture of Emma Sage in the Homecoming court!!!
Congratulations Greta and Laney....you both are princesses!!!!!
Tonight is the night........for Greta's senior Homecoming dance.
She looked like a princess and she was so excited to be dancing the night away with her friends....
and a thousand miles away......a dear online friend of mines daughter is attending her Homecoming dance, as the Honorary Homecoming Queen.
Meet Laney..............
How cool is that.....what a wonderful school to embrace Laney and fully include her, especially in this Homecoming Ceremony.
My heart is so full of joy for Laney and my hopes and dreams are racing at the thought of Emma Sage attending her first Homecoming dance in eight years,,,,and who knows, in eleven years, I could be sitting her posting a picture of Emma Sage in the Homecoming court!!!
Congratulations Greta and Laney....you both are princesses!!!!!
A Change of focus......
Appropriate for the 1/2 way mark of 31 for 21.
On October 15th, I will not be blogging about Down syndrome, instead, Emma Sage and I will be doing two things for Blog Action Day to end Poverty. [actually three things, but Emma Sage will be assisting in two of the actions]
So check back here on the 15th [actually, late on the 15th] to see what action we will be taking.
and if you have a moment.....here is a beautiful post written by a young man that really touched my heart. Click here to read Poverty of the Heart
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