Turkey Trot, Flemington, New Jersey ~ 51:11.............

Fifty one minutes and eleven seconds. That is the time of Emma Sage's FIRST 5K.

She DID it!!!!


Just before the race....


She is just too funny......



She ran and ran....and walked. But she did it......she kept on going. She thought the water break was cool and she was jogging and drinking and then tossed her cup off to the side like an old pro.

There were lots of volunteers on the corners [who remembered Emma Sage from Special Olympics so they really cheered her on] She was also the greatest cheerleader, as she would pass people and say "Come on...you can do it!"

On Main Street she started sprinting and had a smile bright across her face [ I so wish I was able to get a picture of that, but I was running with her and there was no way to carry a camera].....and she was waving and blowing kisses to everyone along the streets cheering her on.

Her first Turkey Trot. How cool is this first milestone?

My cousin [actually it is my first cousin once removed......I figured out how

to do all that on a Google search once when I was trying to figure out how to classify cousins.

Man do I love the Internet and how easy it is to research the most random topics]......

Anyway, the quote below was posted on my Cousin Beth's CaringBridge website.

She was going through some clippings and it is from Nelson Mandela's 1994 inauguration address. The quote moved her greatly now [and I know when she first found it, as that is why it is in her clippings....and something I realized that I share with her, as I have clipped and saved things my whole life...so it must be a genetic thing!].

My Cousin Beth is a bright light...she has a smile that is dazzling and a personality that is just as radiant. So, I wanted to share her post with you all here.....as she asked that we read the passage ~ "this truly explains how I feel today. There is such a natural "high" in it that I want you all to hop aboard" and then I added my own piece to the post.....a photograph of my little light to share with you all.

"Our deepest fear is not that we are inadequate.
Our deepest fear
is
that we are powerful beyond measure.
It is our light, not our darkness
that most frightens us.
We ask ourselves,
who am I
to be brilliant, gorgeous, talented and fabulous?
Actually, who are you not to be?
You are a child of God.
Your playing small doesn’t serve the world.
There’s nothing enlightened about shrinking
so that other people won’t feel insecure around you.
We were born
to make manifest
the glory of God that is within us.
It’s not just in some of us;
it’s in everyone.
And as we let our light shine,
we unconsciously
give other people
permission to do the same.
As we are liberated from our own fears,
our presence
automatically liberates others."

Me and My Best Friend

I did not take this photograph......it was taken at the NDSC Convention in Boston this past summer.

I was looking at their website tonight and stumbled across this, that I just had to share.

These two adore each other and I am so Thankful that they live close enough that they get to share their friendship in real life play dates. We will be seeing Devany this upcoming Sunday at the Princeton University Disability awareness conference.



and I realized that I have photographs to go through from this past spring, up until now......I must find some time to go through them and upload them here. as Emma Sage has had lots of adventures and I really must share!

The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome


A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a "treatment" for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.



Please, please, please click on this link and read the entire article. LINK



Thank you Nicole for sharing this.

Bwtifl

So what do you think the above word is?

Well, to me, it is one of the sweetest words I could have read, as you see, it was written by Emma Sage on a paper from school and she wrote it all on her own in a sentence.

The paper went like this: Thanksgiving is a time for being thankful. Draw a picture of someone or something that you are thankful for. Write a sentence telling why you are thankful for that person, pet, or thing.

Well, I was given this paper last night at my Parent/Teacher conference, and Emma Sage's teachers were so proud of this paper, as it was a drawing of me [thank you Emma Sage for making me very skinny] and written on her own following the classroom prompt, was

"I am thankful for my MOM bekas she is bwtifl"

Emma Sage is beginning to love to write. She still gets fatigued after a while and multiple sentences are still a struggle for her....but single sentences and using a whole word process, she is writing on her own.....sounding out words and writing them!

I am just so excited to see this, as this is truly the beginning of her being able to independently express herself. She is good at prompting and copying text, but this is independent writing......

So, it was very funny for me to see, a paper she decided to write on her own at home for her brother Otto. They were playing and on his encouragement, she got a little out of hand and hit him. She felt bad, although when he got this paper from her, he was actually the one who apologized to her, as he knew it was an accident.

She felt bad that she had hurt her brother that she wrote.....

"I am sorre"

and as Thanksgiving approaches, I am so very thankful for all the blessings in my life....and I'm overjoyed with Thanks on this new development in Emma Sage's writing.

Come Vote for Emma Sage

I submitted this image to
the catagory of 'Beloved'
in JPG magazine.....
if you click on the image
it takes you to the voting page.

Emma Sage [and her Momma] hope you'll vote for us!

Peace and love, Tara Marie & Emma Sage

This is for Nini

Emma Sage was home from school today. She had a very rough week.......completely exhausted and complaining that her stomach hurts [but no indication of a stomach virus/intestinal bug] and a few inappropriate behaviors at school [not like her at all].

So last night she was in bed by 7 pm.....at 7 am this morning I went to wake her. She wouldn't budge. She was like a zombie.........and she has been as pale as a ghost and her eyes have been red around the edges [she looks like a zombie] We had a blood draw to check her wbc, and we are going to the doctors tomorrow.

I let her sleep.....which was another three hours. She also took a 3 1/2 hour nap this afternoon, and after I post this, we are headed into bed to read books and go to sleep.

But during her awake time, we took a nice walk [to fill our lungs with fresh air] We stopped by the river where the kids throw leaves and rocks over the wall of the little bridge. Little miss was sitting on the stone wall and told me to take this picture to send to 'Nini'

So Katrina,,,,,her is your little 'Peace' girl. She misses you and loves you dearly!

Have a great weekend.

Your children are not mere lumps of clay
waiting for your expert hands.
They are the very energy of the universe
and will become what they will become
They are sacred beings.
If you tamper with them
you will make everyone miserable.

They will find success
and failure.
They will be happy,
and sad.
They will delight you,
and disappoint you.
They will be safe,
and at great risk.
They will live,
and they will die.

Stay at the center of your own soul
There is nothing else you can do.

~The Parent's Tao Te Ching
by William Martin

Hunterdon/Warren Field Hockey Champions

Well, this has been an incredible week....[with events and emotions ranging all over the spectrum]

Two years ago I wrote this post: Hunterdon/Warren Field Hockey Champs

and then last year, I wrote this post: Hunterdon/Warren Field Hockey Champions

and now today, I write: Hunterdon/Warren Field Hockey Champions for the 3rd Straight Year [and a new tournament record]

Voorhees High School beats Warren Hills 1 to 0


and the MPV of the game......................


Our dear, sweet.....
Greta Hintz


Two years ago, the MVP was Greta's cousin, Erica Hintz [who is playing division one Field Hockey at Rider University.......


How amazing and wonderful this is...to have two of our our girls as part of the history of Voorhees Field Hockey and for both to be chosen MPV of the game.

and in the above picture, one of the teams great FANS, Grammy. The girls are blessed to have many fans....parents, grandparents, aunts, uncles, friends, who have been at every game cheering the girls on.




This was one of the best games I have ever seen on the high school level....both teams are phenomenal in their stick work and team work. This was truly the elite of high school field hockey this afternoon. Just incredible!

The girls also had a big game on Thursday, which placed them as the Group Champions in their division and on Monday the start of the State Playoffs begins.

If you can send off well wishes on Monday at 2 p.m., I know that there is a team of dedicated, hardworking and tenacious girls who would greatly appreciated them.



Congratulations Girls........Yeah Vikes!!!!!!!!!

31 for 21

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.

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!]

"Love does not consist of gazing at each other, but in looking together in the same direction." ~Antoine de Saint-Exupery

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'

Inclusive Education

and

The Breaking of Relationships

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!!!!

Today my daughter received some tragic news.....if you can keep her and her friends close in healing prayers and positive thoughts I would be greatly appreciative. I truly believe in the power of prayer and this Momma's heart is just so heavy right now.

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..............

“Any time a thought, a sentence, or paragraph inspires you, or opens up your thinking, you need to capture it like a butterfly in a net, and later, release it into your own field of consciousness.”-Steve Chandler

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".......

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!

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!!!!

"Treasure your relationships, not your possessions" ~ Anthony J. D'Angelo