31 for 21 -~ Day Seventeen

“A character is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse.”  ― Arthur Miller

Today is Arthur Miller’s birthday.   For nearly six decades of his life, Miller created characters that wrestled with power conflicts, personal and social responsibility, the repercussions of past actions, and the twin poles of guilt and hope. 

I look at the above quote and I wonder about the personal struggles Arthur Miller, the man, had in his own life.

You see, the Pulitzer Prize and multiple Tony Awards winner who always put into question "death and betrayal and injustice and how we are to account for this little life of ours." had a secret that he lived with from 1966 until his death in 2005. 

Arthur Miller and his third wife,Inge Morath, had a son named Daniel.  Daniel was born with an extra chromosome. Daniel had Down syndrome.  He was born in November 1966 and at a week old, was placed in an institution and removed from Arthur Miller’s life.

It has been noted that Inge wanted to keep the baby, but Miller was adamant that it had to be sent away. Daniel was institutionalized soon after his birth, spent his infancy at an institution in New York City, and the entire rest of his childhood at the Southbury Training School for retarded children in Connecticut. In an article in Vanity Fair, it is reported that Inge visited the boy regularly at Southbury, but his father never did, and eliminated him from his life entirely, never mentioning his existence in public nor in his autobiography Timebends. 

Inge would visit her son often.  She never let him go.

Despite the limitations of life in Southbury, Daniel grew up to be a very bright and charismatic young man. 

Arthur Miller's decision was entirely common for people of his time and for society at large. Whereas, I had not the slightest hesitation ever about raising Emma Sage at home, my generation was very different in this regard from my parents' generation. Among the generation that grew up before World War II, it was normal to institutionalize developmentally disabled children, and in fact physicians often advised parents to do so.

Arthur Miller, born in 1916, belonged to the generation which carried this mindset.

Different axioms lead in a different direction, regardless of propriety. Anne de Gaulle, born in 1928 with Down syndrome, was the daughter of the young officer Charles de Gaulle and his wife Yvonne. Anne was never separated from her parents throughout her life, and her father always made time to spend with her. Famously chilly and formal in public, the General was reputed to be warmer and more outgoing with Anne. When she died at the family home of Colombey-les-Deux-Eglises, General de Gaulle said simply: "Maintenant, elle est comme les autres." [Now, she is like the others.]

What produced these remarkable post-WWII changes in conventional social attitudes?   I don't understand how it took place in detail. But, like everything else associated with the "baby boom" generation, the clues must lie in the 1960s and 1970s, during which I spent my childhood and youth.

Whilst the change has shifted to embrace our children with Down syndrome, the underlying fear of disability is still alive and well in our society.  Our children are out in the light……they are Living, Loving, Growing and Thriving and they are valued members of our families and communities.

But there still lies darkness; as Eugenics is still ever present, especially in regards to the prenatal diagnosis of Trisomy 21/Down syndrome.

Today we celebrate the birth of a man who wrote with conscience, clarity and compassion.  A man for whom it was not discovered until after his death held a powerful and tragic secret.

“A character is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse.” ― Arthur Miller

Just before his death, Miller did something that indicates that he was validating his son.  By acknowledging him by changing his Will to include Daniel as his rightful heir and son.  A full quarter share of the estate, no more or no less than his three siblings.  It is also noted that Miller visiting his son in the last years of his life.  In my heart-of-hearts, I hope that is true.

The most important part of this story is that Daniel transcended his father's failures: "He's made a life for himself; he is deeply valued and very, very loved. What a loss for Arthur Miller that he couldn't see how extraordinary his son is." States the woman who Daniel has lived with most of his adult life. 

It was a loss that Arthur Miller may have understood better than he let on………and I wonder if this story could have been Arthur Miller’s greatest unwritten play.

 

"Maybe all one can do is hope to end up with the right regrets." ~Arthur Miller

Click Here for the Vanity Fair article: Arthur Miller's Missing Act

31 for 21 - Day Sixteen

31 for 21 - Day Fifteen

"One's Sister is a part of one's essential self, an eternal presence of one's heart and soul and memory."~Susan Cabill



"Chance made us Sisters, hearts made us friends."~ Author Unknown



"A sister is a little bit of childhood that can never be lost."~Marion C. Garretty



"There's a special kind of freedom sisters enjoy. Freedom to share innermost thoughts, to ask a favor, to show their true feelings. The freedom to simply be themselves." ~Anonymous



"Is solace anywhere more comforting than that in the arms of a sister"~Alice Walker




Celebrating Sisters.  Emma Sage has been missing her Greta, so for today's 31 for 21, I thought I would post a moment in time of them sharing their special bond of  'Sisterhood'

31 for 21 ~ Day Fourteen

21 Things you might or might not know about Emma Sage

Get It Down~31 for 21 .....and a good way to learn a little bit more about our pixie.

1. We knew, but we didn't know that Emma Sage had T21 during my pregnancy. I had premonitions and 'soft markers' and in my heart of hearts I knew.
2. You are more than welcome to laugh about the 'premonitions' but they were actually right on and more accurate than the ultra sound scans.
3. This was the first layer of preparation I had for embracing my daughters Down syndrome diagnosis.
4. Emma Sage was born at home in the bath tub.
5. No, it was not a planned home-birth, but again, this child has brought many pleasant surprises into our lives......and I hope that never changes.
6. I was the first to say "Oh look, she does have Down syndrome"
7. It took over 24 hours before anyone at the hospital confirmed my original diagnosis of T21....they all came and looked, but no one said anything. My sister and my Midwife both agreed with me that she had Down syndrome, but we did not have a doctor come and talk to us about the possibility for a day.
8. That was fine by me, as my only focus was getting her to nurse.
9. Emma Sage finally latched on and nursed almost 24 hours after her birth [even though she did latch on and nurse in the ambulance ride to the hospital. Emma Sage nursed until she was 3 years and 10 months old.
10. Her favorite food is.........everything. This child loves to eat, from salad, to soup, to sushi, to pizza......you name it, and she will try it.
11. Emma Sage loves to dance and has been taking dance lessons since she was three
12. Her first dance studio was our first experience with discrimination ~ her current dance studio is the epitome of inclusion and positive forward thinking.
13. Emma Sage is now a 5^th grader in middle school.  She has a locker and loves school
14. She is an awesome reader and excels at math [and this fact both delights me and surprises me]
15. She plays the drums in her school band.  She tells me she is going to play in an all girls rock-n-roll band someday.
16. When she gets tired she turns into a bear, Thank goodness she doesn’t get tired too often
17. Emma Sage love to ride horses, her instructor told me that the easiest thing for her to do would be to limit her, but instead she took a leap of faith and this child trots and canters on her own.
18. Emma Sage loves to model.  She has appeared in print media 14 times, including the Toys R Us big book. 
19. When she was seven she was proposed to.  We told her she had to wait till she was 24 to get married [she never lets me forget that fact]
20. Emma Sage is funny, witty and can be very sarcastic.  This is quite refreshing and at times annoying, as she loves to yank my chains.
21. Emma Sage has always defied the statistics......she is her own unique person and we couldn’t imagine life without her.

 

 

31 for 21 - Day Thirteen

" Think of me first as a person who hurts and loves and feels joy,”
--Dwight Core Sr.

My favorite child.

Dwight Core, Jr. the fifth child of the Core family and their first son.  This is a documentary that was made from home videos and current day filming that now resides in the Library of Congress.

The home movie, "Think of Me First as a Person," portrays the love a boy with Down syndrome shares with his four sisters, but also a heartache common to the era's disabled: leaving home for an institution.

I was born a few years after Dwight Core, Jr.  It breaks my heart to think of the society I was born into and how children with disabilities were encouraged to be placed into institutions.  We have come a long way in North America.

That is not so in other parts of our world.  I have dear friends who are working with those societies that place their children with disabilities into orphanages at birth and sadder yet, these children are destined to horrible institutions if they are not adopted by a certain age.  They are working tirelessly to change those society’s perceptions.  A daunting task, but one I know can change, as look at how far we have come as a society.

This is a must watch……..

Part One Part Two

31 for 21 - Day Twelve

The Power of Siblings.

31 for 21 ~ Day Eleven

'The StoreyMan' it is a must read, really it is.

You see, it is a story about David Hingsburger, who is a disabilities rights advocate and his  meeting a young man in London named Steven Storey and how he views disability [his to be exact] and other wonderful things.  The first thing that made me smile from ear to ear is the photograph of Steven, as he is holding a pint of beer.

Now I know you might think that is a funny thing to make me smile, but it is........because that was one of the weird things that crossed my mind when I was pregnant with Emma Sage [yes, pregnant] was the fact that I wondered if she would ever grow up to enjoy a glass of wine or a nice cold beer [or follow in her Momma's footsteps and have a passion for a Margarita once in a while]   For some strange reason, I always had this misconception that people with disabilities didn't drink. Don't ask me how that misconception crept into my mind, but it was there. The other big misconception I held was on the topic of S.E.X........yes, for some strange reason I'm a prude. Lol!!   Actually I'm not, far from it, but the thought of a healthy physical and emotional relationship was another topic that I really never thought about for Emma Sage given her diagnosis of Down syndrome.   Weird I know.  How uneducated and misinformed I had been.

People with Down syndrome are just that....people. They happen to have an extra chromosome on their 21st pair of chromosomes. This causes some common traits [phenotypes] amongst people with Down syndrome, but it is not all encompassing and each person with Down syndrome is as unique of a human being as any of us are.   They look and act more like their families than they would look or act like another non-family member with Down syndrome.

Each of us brings to this world our own special gifts........each of us has our own destiny to fulfill.......our own dreams to dream and achieve  ~~~ people with Down syndrome are no different than any of us in this regard……they tell jokes, they drink beer, they have relationships.

See how much I have learned in 11 short years!!!!!!

31 for 21 - Day Ten

There was a wonderful article in the April 23, 2007 issue of People magazine titled “Finding my son at the Zoo” that touched me on so many levels.

One line rang so true for me.

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

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

“You need to mourn”

“For whom?” I asked

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

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

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

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

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

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

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

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

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

This spiritual journey is part of my daily life….this little soul just radiates….she teaches me daily about love and understanding…..she helps me see the miracles that surround us, a bird sailing through the sky, a tree toad croaking off in the distance….a wild flower – so tiny – so small – so perfect…..and at this moment right now in time…..nestled up next to me on the bed, her book and glasses off to the side.  I sit mesmerized and in awe of her, watching her soft breathes flickering the covers as she sleeps soundly with Momma!”

31 for 21 - Day Nine

Camp PALS
Camp PALS West
PALS Tours

and this upcoming year,

Camp PALS Chicago


A flu bug has got a hold of this Momma, but for today's post, I wanted to start my discussion of a program that is beyond amazing.

My daughters met the founding directors of PALS the summer of 2004 when we were at the National Down syndrome Congress's conference in Minneapolis.

They immediately became friends.  Katrina was the first of my children to get involved in the original program that was PALS [Peer Assisted Learning Support] and became the national director of high school programs.

The next summer she began volunteering as a councilor at Camp PALS.

Two years later when she was old enough to volunteer, Greta became a counselor.

Each summer since they are back at Camp PALS volunteering [and it is the highlight of their year]

Katrina began counseling at PALS Tours the year the program began and now does both Camp PALS and PALS tours.

Greta boarded a plane this summer and headed out to California for the inaugural year of Camp PALS West [and had the time of her life]  So she now volunteers for both Camp PALS Original [East coast] and Camp PALS West.

and this past summer my Otto is now old enough to volunteer........

So I had three of my children at Camp PALS.

My heart swells with such  pride and joy.

Next year Emma Sage will be attending Camp PALS as a camper [we go each year to the dance and she gets to be an 'honorary camper' but not next year.....it is the real deal for her.

So please take a moment to watch this video [and when I am feeling better I will write more about Camp PALS, as it truly is an amazing entity [it is like it has a spirit all its own]

Peace and love,  Tara Marie [who is one sick gal]



P.S.watch for my Greta in this one.

31 for 21 - Day Eight

Four years ago, 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 - Day Seven

Welcome to Holland
Emily Perl Kingsley 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I also love this reading of the essay.

 

31 for 21 ~ Day Six

"If we could see the miracle of a single flower clearly, our whole life would change." ~Buddha

Indulge me for a moment, and imagine yourself to be a violet growing smack dab in the middle of a beautiful bed of daisies -- and all of your (short) life, the multitude of daisies surrounding you seem frustrated that you are different. They try endlessly, and to the best of their abilities to turn your into a daisy, despite the fact that you, while very similar in many ways, are also very different than the other flowers who share your life. Would it serve you to try to be a daisy when it is clearly true that you aren't one, and never will be? How would it feel when the well-intentioned daisies around you continually insist that you look and act more like a daisy than the violet that you truly are? And, have you ever picked a violet and suddenly found yourself wishing that it were a daisy instead? Wouldn't you be glad of its' violetness, and that be sufficient, or rather exquisite, in and of itself? Is it any different with people?

I imagine, dear teacher, your mind is now thinking, well, this world is predominantly of, for and by the daisies. And true, you have generously and with much self-sacrifice spent a good deal of your time patiently teaching the violet a few daisy tricks, so that she can function effectively in the daisy bed. After all, she is growing there. And my point is, that if she has to deny her essence as a violet, there is no value at all in learning daisy skills. If daisy skills, however are optional, and she can be accepted as the violet that she is, she will gracefully and sweetly unfold into the fullness of her beauty, warmed by the sun, and nurtured by the trust and open-heartedness of her surrounding daisies.

**Violets, beloved friend and teacher, are NOT impaired daisies.**

Excerpt from: VIOLETS and DAISIES by Kay Drais ~ Which is one of my most favorite essays on Inclusion.

31 for 21 - Day Five

I love October.  Always have.

Because of Emma Sage, and her very acute observations of life and living each day fully,  I love it even more now. 

The air is more palpable to me….I sense the coolness, the early morning mist and the warm Indian Summer days….sometimes all within a 24 hour period.  I savor it.

The colors are more vivid and intense.  I get giddy at seeing trees change right in front of my eyes. 

I notice the last days of harvesting with a fond remembrance of my grandfather and the bushels of treats that abound when he was alive.

Of pumpkins bigger than you can imagine…..and decorating for Halloween which always brings me delight.  I love magic and wonder and October is filled with it.

It is also Down syndrome Awareness month….and now with the Internet humming with so many amazing souls, the awareness is taken to greater heights….of so much positive energy.

I feel so alive.

So today, as the phenotype of Brushfield spots popped up again and again on my Facebook feed, it made me recall a post that I did 7 years ago for 31 for 2 1.  [Sweet Maddy who is picture below had the most incredible Brushfield spots.]

It is amazing how much has changed [and sadly, how much has remained the same in seven years]

The topic was of editorials that still run of perpetuating the myth that Down syndrome is something that is ‘unfortunate’ and the prenatal tests that were just emerging at the time….to test earlier and earlier in gestation so that woman may opt to terminate at a time frame that is considered ‘easier and less evasive’.    Let’s just say this.    No woman who has ever had an abortion will tell you that it is ever easy or non- evasive.  It cuts at the very heart and soul of a woman.  Some pro-abortion activists will lead you to believe otherwise, but the truth of the matter is this.  Abortion hurts women at the time of the procedure and decades later their souls are still tattered.  Trust me on this one.

So I leave you here at the beginning of a post I wrote 7 years ago.

I remember with love all my friends whose precious children have left us too early…..and my heart weeps for their loss.

***~~***~~*** written 7 years ago.....

During the last few days I have reflected on the whole situation with Indy's Child magazine and editorials that still target our children that have Down syndrome as something 'unfortunate' and in need of earlier and earlier prenatal tests to eliminate the burden of continuing a pregnancy that is deemed 'imperfect'.

While I watched Emma Sage playing with cousins and friends, celebrating the 4th of July, I kept thinking about all the people I have met during my journey with Emma Sage in our life, whose beloved children with Trisomy21 have died. Children whose lives were wanted, loved, cherished and missed dearly.

I made this little banner in the memory of all of these beloved children and a reminder to all that all children are blessings.....those with 46 chromosomes and those with 47.   Our children are loved and wanted.....and cherished beyond what words can convey. We are fortunate...and truly blessed.

This is Maddy.............she is an angel in heaven, but the love and joy she brought her family and friends will live on forever in their hearts.

 

 

31 for 21 - Day Four

sar·casm

   /ˈsɑrkæzəm/ Show Spelled[sahr-kaz-uhm] Show IPA

noun

1.

harsh or bitter derision or irony.

2.

a sharply ironical taunt; sneering or cutting remark: a review full of sarcasms.

 

Yes, Sarcasm.  Not a word you would typically think of when you think of someone with Down syndrome.

 

Myths abound.  They are so sweet.  They are so innocent. They woud never use wit, irony or sarcasm in a conversation.

 

Busted - another Myth that is.

 

Emma Sage has the most unique and loving relationships with her siblings.  In her relationship with Katrina it is a 'Love - Hate' full of wit and sarcasm and absolutely hysterical.

 

Last night Katrina slept home [she is not home more than she is home these days, but not officially moved out].  As we were all getting ready for work/school I say to Katrina. 

 

"I don't know how you do it, but you were only home for a few hours and your room looks like a tornado hit it"

 

to which she replys  "I'll clean it"

 

and Emma Sage walks by not missing a beat and says "Or you could move out"

 

Badda-bing.

 

She is quick on the uptake and always ready to taunt and tease her sister.

 

They love each other, they really do!

 

 

31 for 21 - Day Three

There are three classifications of Trisomy 21 [Down syndrome] ~

Nondisjunction - If a sperm or egg with an abnormal number of chromosomes merges with a normal mate, the resulting fertilized egg will have an abnormal number of chromosomes. In Down syndrome, 95% of all cases are caused by this event: one cell has two 21st chromosomes instead of one, so the resulting fertilized egg has three 21st chromosomes.

Robertsonian Translocation- Three to four percent of all cases of trisomy 21 are due to Robertsonian Translocation. In this case, two breaks occur in separate chromosomes, usually the 14th and 21st chromosomes. There is rearrangement of the genetic material so that some of the 14th chromosome is replaced by extra 21st chromosome. So while the number of chromosomes remain normal, there is a triplication of the 21st chromosome material. Some of these children may only have triplication of part of the 21st chromosome instead of the whole chromosome, which is called a partial trisomy 21. Translocations resulting in trisomy 21 may be inherited, so it's important to check the chromosomes of the parents in these cases to see if either may be a "carrier."


The remainder of cases of trisomy 21 are due to mosaicism: Mosaic Down syndrome happens when a person has a percentage of cells with an extra 21st chromosome and the remaining cells are unaffected. This type of Down syndrome accounts for about 2%-4% of the cases of Down syndrome.

Emma Sage has Mosaic Down syndrome.

What is Mosaicism?
from Dr. Len Leshin, MD, FAAP
Every cell in the human body comes from one initial cell: the fertilized egg, which is also called the zygote. After fertilization, the zygote then proceeds to divide. As new cells form, the chromosomes duplicate themselves so that the resulting cells have the same number of chromosomes as the original cell. However, mistakes sometimes happen and one cell ends up with a different number of chromosomes. From then on, all cells originating from that cell will have the different chromosomal number, unless another mistake happens. (All like cells originating from a single type of cell is called a cell line; for example, the skin cell line, the blood cell line, the brain cell line, etc.)
When a person has more than one type of chromosomal makeup, that is called mosaicism, like the mosaic style of art in which a picture is made up of different colors of tiles. In Down syndrome, mosaicism means that some cells of the body have trisomy 21, and some have the typical number of chromosomes.

Two very good resources regarding Mosaic Down syndrome are the International Mosiac Down syndrome Assocation and Mosaic Moments.

Mirror ~ Mirror

31 for 21 - Day Two

ad·vo·ca·cy :: [ad-vuh-kuh-see] :: noun, plural ad·vo·ca·cies.

the act of pleading for, supporting, or recommending; active espousal: He was known for his advocacy of states' rights ~  Active support, esp of a cause

One of the things that I take seriously as Emma Sage's Mother, is that as I advocate on behalf of her and other people with Down syndrome ~  I am also teaching her and giving her to tools by my advocacy for her to be able to one day raise her own voice......to speak her thoughts, her opinions, her ideas.     To follow HER dreams........

A favorite writer of mine on the topic of disabilities awareness is a gentleman named Dave Hingsburger.  He maintains a blog on disability advocacy at ‘Rolling around in my head’.

A post of his that touched me deeply is called ‘ChoicesIndeed’.  Upon reading this piece it became my hope that someday Emma Sage has the same spirit and drive as a self-advocate as this young man.

Take a read and tell me what you think.

31 for 21

This is the story of how Down syndrome entered into our lives,,,,,,,,presenting itself in the genetic make-up of our youngest child.

We hope you Enjoy reading about our beginning of this journey........


The story of Emma Sage

Emma: One who heals
Sage: One with great wisdom
Alexandra: See her birth story to find out the meaning of her third [unplanned] name

Even before her birth, Emma Sage has lived up to her name, by healing and teaching those around her the true meaning of life.

Emma Sage is our fifth child. She was conceived one year to the day of our miscarriage. Before her conception I never fully understood the power of ones soul…….but the moment of her conception, I arose from a deep sleep, overcome by the most incredible sensation.….I sat up as I felt her soul enter into my body [I know you might question this experience, but it was the most profound moment of my life and one that has allowed me the greatest sense of peace.] I knew immediately that I was pregnant. I placed my hands on my lower belly and asked GOD for this baby to stay. It was a warm August night and the moon was full. I laid back down and watched the stars through the skylight thinking about what had just happened.

About 10 days later I took a home pregnancy test and it was positive….I took three more just to be sure. I was very nervous because of our loss that I asked my midwife to check my HGH levels at around 4 weeks. The levels were high and my fears subsided a bit. It was around this time that I began having dreams. I kept dreaming of a little girl who looked just like a china-doll….so tiny and perfect. I had my first dream of having the baby on the side of the road…..Beginning my concern of missing labor and birthing [in my dreams it was everywhere]. My sister who is a L&D nurse would laugh at me when I would tell her of my dream and she brought me a cord clamp and told me to keep it with me. [As fate would have it, we needed to use that cord clamp!] At 8 weeks, we took a family vacation to Florida. While at Universal Studios, Rick, Katrina, Greta and I [Otto was at Disney World with my mother, sister and her family] we were sitting in NYC waiting for the Blues Brothers show…..when this powerful sensation came over me again. I was watching this beautiful little boy dancing around…he would come up to us and smile and then dance away back to his parents. After the show started I could not keep my eyes off of this little guy. I looked at Rick and told him that I thought that this little baby was going to be exactly like that little boy [that it would have Down syndrome]. Rick put his arm around me and said, “That would be just fine”. I told my sister about the incident that night at dinner and we both forgot about it.

At my 13-week visit I was measuring big for dates, so my midwife asked if it was OK to do an ultrasound to rule out twins. Rick and I agreed [I was actually so nervous this pregnancy and wanted to take a ‘peek’ at little one]. The ultrasound was one of the worst experiences of my life….for the only reason being that the technician was cold and in the middle of the scan said “There is something wrong with this baby” and left it at that, even though I was asking her millions of questions. While I was wiping off the goop, she called my midwife and said, “I think we have a problem”…..Rick and I went right up to my midwifes office. There, my midwife Peggy told me that the technician had measured the baby’s neck and the measurement was abnormal. The baby’s nuchal translucency was 3.6mm and anything over 3.5mm was a soft marker for Down syndrome. Later that night Rick and I sat outside in the barn on his motorcycle and talked. I asked him at one point “what are we going to do?” and he looked at me and said “we are having a baby, we are not GOD, nor should we ever play GOD” [[man do I love this guy…..he is my best friend and he gives me such strength at times]] I was just so scared not knowing …….but this began my quest on finding everything I could on nuchal translucency, soft markers & Down syndrome. We already knew we would not have an amnio and we scheduled a level II genetic ultra sound for 19 weeks gestation at a teaching hospital near us.

The time between the 13-week scan and the 19-week scan proved to be one of the most enlightening times of my life. Everyone who asked me about my pregnancy heard about the possibility that the baby might have Down syndrome and the responses I got amazed me….from “you will be truly blessed if the baby does” to “What are you going to do, your not going to have it are you?” One of the most profound comments came from my daughter Greta. While discussing with the children the ultrasound and ‘choices’ people make based on pre-natal testing Greta looked at me and said “So mom, if parents had a crystal ball [like the ultrasound machine] and found out that the baby they were carrying was perfect and when that baby was five it was in a horrible accident and became disabled and they had to take care of that child for the rest of their lives, could those parents choose to terminate that baby just because they didn’t want to deal with it later on?” [[See I told you Emma Sage was already teaching those around her the true meaning of life, even before she entered into our world]]

At the level II, my sister came with me. She used to work at St. Peters and I wanted her with me to also look at the scan to see if there were any issues with the baby’s heart or other major organs [I had come to accept the T21 very easily…it was health issues that I was scared of, because I wanted to make sure we delivered at the right hospital if little one need immediate medical care [how funny is this when fate had its hand on where Emma Sage was to be born]]. The baby was free of any structural issues and the nuchal translucency had corrected itself at this point. We did have a slightly abnormal pyelectusis, so another soft marker was found. This changed my risk/ratio from 1/47 to 1/280. At a 28-week scan the baby had no soft markers for Down syndrome, but I knew in my heart already that she would be born with that extra little chromosome.

I celebrated this pregnancy. I shared with everyone the joy we felt, even in light of the question of T21, because to me, that didn’t matter……this was a baby, a perfect and beautiful baby. My dreams kept intensifying. It seemed like at least once a week I would dream of missing labor and birthing where-ever…..my sister always laughed when I would tell her of my dreams and kept reminding me to keep the cord clamp with me. I kept dreaming of an angel…..I thought it was the baby we lost trying to reassure me that everything would be fine.

Three days before Emma Sage’s birth we were at the library and for some strange reason I found and checked out the book ‘Babies with Down syndrome’ When my mother-in-law saw the book I had checked out [along with a bunch of books on gardening] she looked at me and said “your not going to need this book”, and I just smiled at her and said “I know, it is for just in case”.

Emma Sage was due on May 5th……..on Tuesday, May 8th I was busy that evening helping my oldest daughter with her science project. We finished up the project and everyone headed to bed early [Rick had an early trip and need to leave the house by 3:00a.m.] I had bad gas and went down stairs to take a warm bath…..I would then sleep on the reclining chair for an hour or so and then wake up with ‘gas’, and take another bath…..this went on three times. After the last bath I feel asleep to wake to what I thought were finally contractions. It was 1:00 a.m. I timed them for 15 minutes and at 1:20 a.m. called my sister to say that I think was going into labor [at this point they were beginning to hit me fast and furious, but I could still walk and talk through them] She told me to call my midwife and she would get dressed and meet me at the hospital. I called the midwife at 1:25 a.m., getting her answering service, left a message and waited [timing what seemed to be waves of contractions, never really beginning nor ending]. She called me back at 1:33 a.m. {which awoke Rick, who jumped out of bed and got dressed because he figured something was going on}. I told her I was not sure if this was the start of labor, but that I felt so weird and that could she check me out and if it were nothing she could send me home. She said she was on her way to the hospital and would meet me there. We woke up the children and I dressed Otto, while I was bending over to put on his overalls, I was hit with a contraction that scared me. I asked him if he could put on his shoes, because mommy didn’t feel like bending over anymore. I got myself dressed and while I was pulling up my overalls, I got another contraction that hit me like a ton of bricks…..I got real scared because I thought to myself “If this is the way my labor is beginning, I don’t think I’m going to be able to handle it and is it a good thing to be bringing the children to the birth if I’m out of control”……I walked down stairs [Rick and the kids were on their way out the door] and when I got to the bottom I had this strong sensation to go to the bathroom. I told Rick I had to go to the bathroom….pulling off my clothes. When I got in there I realized that I was going to have the baby. I yelled for Rick telling him that I thought I was going to have the baby right away. I asked him “Where should I go?”,,,thinking living room floor or back up to my bed and Rick tells me “Get in the bathtub”….he throws down a bunch of clean towels and he calls 911. I hear him on the phone and he yells, “kids quick, what is our address again?” [Our address had changed a few years back for 911 but he could never remember the street number as opposed to our old RR#]

Now this is where fate steps in again………I knew this was going to be Emma Sage’s birth….I just did not know where, but I knew it was going to be just us. The most amazing thing about Emma Sage’s birthplace is that it is exactly the same area that Rick’s grandfather died [his grandfather died on the toilet in the same bathroom within inches of where Emma Sage was born,,,and actually Rick was sitting on the closed toilet, on the phone with 911 helping me deliver her….I think that there must be a gateway for souls to enter and leave this world at that spot….[and this is where Emma Sage’s third name comes from, her Great-grandfathers name was Alexander and we decided to add Alexandra to her name to honor her great-grandfather and the location of his death and her birth] Anyway, I truly believe that the dreams I kept having were a premonition to prepare us for birthing her alone. I also think that divine intervention was there, keeping her birth a peaceful and joyous occasion and not one that was over-run by medical inquiry. We were the ones to deliver her and welcome her into this world. I was the one who said upon her birth as I raised her up in my arms to my chest “Oh, look honey, she does have Down syndrome!”……..The children were there and we were a family.

We got to ride to the hospital in an ambulance and waiting there at the emergency entrance was my mother, my sister and Peggy, my midwife. Peggy looked at me and said “If it is nothing you can send me home?” and laughed out loud because Emma Sage was delivered into our world within 14 minutes of my telling her that.

Because Emma Sage was born outside the hospital she was considered a ‘dirty baby’ and had to stay with us [I would have had it no other way, but because of her Down syndrome if she had been born at the hospital they would have taken her away from me…..so see I told you there were greater forces at hand helping us at her birth!]……we all laugh to this day about her being the ‘dirty baby who was born in a BATHTUB!’

I knew right away she had Down syndrome and my midwife and sister both said that they too thought she did….we had many doctors come in to take a peek at her. I was scared at first because she was hypotonic and chilly so they had a warmer brought in for her….she wouldn’t latch on to nurse right away [even though she did on the ambulance ride over] and went into a deep, deep sleep. I started pumping right away because I would not allow them to supplement her with formula. She would nurse from a syringe those first 24 hours and then she latched on and has been a champion nurser ever since [I still breastfeed her and will most likely continue till she is 4 or 5 [that is if she wants too!] like I nursed all of her siblings.

There are so many things that have happened since Emma Sage entered into our world. She was the source of comfort for everyone in our family the week following her birth, when my brother tragically died. She filled every ones arms with love and hope. She carried our whole family through that very sad time.

If Emma Sage had not been born with Down syndrome, I would have been at the World Trade Center on September 11, 2001 [I was scheduled to attend a conference where a few of my friends perished] but I refused to leave her.

When we were in Montreal the summer after she was born we had this older gentleman walk right up to us [Emma Sage was in my sling so you couldn’t really see her but the top of her head] he placed his hand right on her and said “you have a very special baby here” We looked at this kind, old stranger and said “thank you, we think she is very special” and he said “No, she is very special and will touch many peoples lives…..I’m not positive how she will do it, but she will touch so many people”……the kids and I took a moment to think about what he said and he smiled and walked away……we looked back to the park were he was headed and could see him anywhere. To this day I believe he was a messenger. And I must agree with him. In Emma Sage’s short two years of life, she has touched so many people. Her bright smile, her sweet disposition and charm captures everyone she meets. I know her life will be filled with inspiring others, because she inspires us every day.


I can not imagine our lives with out Emma Sage. She has brought so much love and laughter, faith and compassion to our family.  She has brought enlightenment and frustration.  She has brought wisdom and understanding.  She has brought perspective and clarity. She teaches me lessons about life everyday.  We are truly blessed by the gift of  Emma Sage!

Celebrating Down syndrome Awareness Month.........as having Emma Sage in my life has truly made me aware of the sacredness of our lives and that each journey is magical.