Thursday, October 29, 2009

31 for 21

I started this blog about our journey with our daughter, Emma Sage, six years ago as a way of sharing with the world the 'Normalcy of Difference'

Emma Sage is now eight 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' 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

Tuesday, October 27, 2009

31 for 21 - Pure Joy

Pure Joy…….

I'm not a wordsmith or writer by any stretch of the imagination. I journal about my life journey raising my children, more specifically in this blog, about my youngest daughter who was born sporting an extra chromosome on her 21st pair.

I find that photographs are the best way for me to help tell part of our story, as a photograph says a thousand words……..and these ones that I took the other day show the expression of 'Pure Joy' that Emma Sage exhibits daily.

Last night, after dropping Otto off at Boy Scouts we had one of those moments that just radiated her joy…..her pure joy of life.

Emma Sage is very independent and she likes to do things herself……and of course I oblige, as raising strong, confident and independent children is part of my focus as a mother [it is in the job description so I have read]. She wanted to stop and get 'nick-nacks'… ones. [ie Tick-Tacks] so we stopped at the pharmacy and Emma Sage grasped her money tightly in her hand and headed into the store on her own [we are able to park so we can watch her every move] .

She gathered up her 'nick-nacks' and something else we could not tell and paid for her purchase, chatting away with the clerks and then headed back out to us waiting in the car. She skipped out, smiling from ear-to-ear and brought her purchases to the car. A pack of gum for her sister "It is your favorite kind" she says……and a quick little 'shake' of her 'nick-nacks' and the giggle and smile that just melts your heart.

october2009thingsandsuch 041
Pure Joy……..the only words perfect enough to describe a moment in the life of my little girl.

Saturday, October 24, 2009

Post Cards for Emma Sage

Postcards for Emma Sage: Can you help my daughter collect a postcard from every state?

We have gotten cards from a few states & Countries [Thank you SO much!!!] but we are hoping to get all 50 states.

Emma Sage is fully included in her 2nd grade class and they are trying to get postcards from all the states [and other countries ~ The Philippines ~ Thank you Cheche!] as they are working on a geography lesson [and maps]. I would love for her to have a collection of all 50 states. Can you spread the word to family & friends who might like to help out.

The postcards should be sent to:

Emma Sage Hintz
212 Maple Lane
Califon, NJ 07830

The states we are missing are:

Alabama Alaska Arizona Arkansas Colorado Delaware Georgia Hawaii Idaho
Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland
Massachusetts Michigan Minnesota Mississippi
Missouri Montana Nebraska Nevada New Hampshire New Jersey New York
North Dakota Ohio Oklahoma
Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Utah
Vermont Virginia West Virginia Wisconsin Wyoming

Thank you so very much!!!

She got an envelope today from Washington, D.C. [with a postcard in it from Washington State} from the House of Representatives!!!! Thank you Congresswoman Cathy McMorris Rodgers!!!!

Wednesday, October 21, 2009

31 for 21 ~ Camp PALS

Camp PALS is a 1-week summer camp for teenagers and young adults with Down syndrome held at Cabrini College in Radnor, PA. Campers and volunteer counselors room together for the week in dormitories at the college.

My Katrina is now a head counselor and my Greta is a counselor. Both girls will attest to the fact that this is one of the greatest highlights of their year. While they come away from the week exhausted.........they also come away each years saying that it was the best experience ever......year after year.

A few weeks ago, Katrina brought Emma Sage with her to Princeton University to meet up with other campers and counselors from Camp PALS as they were trying to have Camp PAL 'reunions' throughout they county.

Of coarse Emma Sage had the best time hanging out with the campers and counselors [have I ever mentioned that this kid thinks she is a teenager?

Jenni Newbury, one of the founding Directors adores Emma Sage and told her that she can be a Mascot this year and come to camp on Friday afternoon and spend the night and I'll join them for closing ceremonies.

Well, a few days later, Katrina was trying to 'bribe' her sister into doing something she wanted her to do [like go get her a glass of O.J. or something] and she wasn't getting her little 'slave' to cooperate, so she said "Well, then you CAN'T go to Camp PALS" to which Emma Sage replied "Yes, I CAN, Jenni BLUEBERRY, said I could"


I guess Emma Sage told her sister 'what's what', and I love how she remembered her last name sounded like a 'berry'........

You have to check out Camp PALS.......and their blog too!!!!

Monday, October 19, 2009

Saturday, October 17, 2009

31 for 21..........Siblings

Well, I realize that I have not been 'writing' much about living and loving life with Emma Sage. So what is my excuse? Really, nothing, but everything.

Life has been busy, very, very busy.....and this Momma tends to file away all the photographs that I take daily [and let me tell you, the bandwidth for my .jpeg files is quite large] and say "I'll get to them later....I'll sit and post later." Well, later comes and this tired Momma is snuggled in bed before 9pm these days; as 6am rolls around way faster than it did when I was younger.

Yes, I'm getting old and not able to keep up with everything as well as I did in my younger days. This whole 40-something, 4 children, a house, a spouse [who looking for a job, ie. extra work for me assisting in this whole process] 3 dogs, 3 cats and lots of activities.....Oh, yeah, and I forgot, a job outside the home that now has me away from my beloved little cottage over 10 hours a day.

So ~ 9pm is bedtime and this blog has been neglected.

Good news is: this is the only thing being neglected!

But I realize every night, after Emma Sage is finished her homework, squeaky-clean from her bath and cuddling with me after her big pile of books and she begins to tell me stories of her days, of her adventures, of her likes and dislikes.....of her dreams!!!! I realize all the funny and delightful conversations that we have and that I really must be writing down and sharing on her blog [as this is her journal of her life] and as history has shown us all.......time has a way of letting us forget, especially the delightful and wonderful details of childhood.

So here is a little gem to share.

Emma Sage has found her siblings 'All About Me' books that they each made in 1st grade. She loves to read them and re-read them. She also has one that she made about herself........these are cute little books that the curriculum has included that each child is interviewed during their 'Star of the Week' and then their classmates write and illustrate a facet of their classmate. The books are then laminated and spiral bound. One of my favorite treasures of the kids school journey.

Well, this morning, Katrina is getting ready for work. She walks in on Emma Sage and I in the bathroom doing her hair and says "How does this outfit look?" and continues "My favorite color is black" I smile and say it is an adorable outfit [it was, cute and trendy and since she is managing the girls clothing store Justice....perfect for work].

Emma Sage on the other hand, stops completely what we are doing and says - very sternly "Black is NOT your favourite color, wait right here, I'm going to get Katrina's book"....she walks into the TV and Katrina and I start to giggle, as we realize what she meant......she gets out Katrina's 1st grade book and opens to the page that says "Katrina's favorite color is purple" and comes back into us to prove that she is write and that Katrina is wrong!!! hahahahahahaha

We laughed so hard!!!

Thank you Emma Sage for setting your sister right!!!!!

Friday, October 16, 2009

31 for 21 .....He is Ulysses, not Down syndrome

He is Ulysses, not Down Syndrome by Desiree Lowit.

Submitted by Jennifer on Wed, 03/02/2005 - 6:00am
Posted in POVReal LifeSpring '05

My son was born when I was 22 years old. He was conceived during one freezing winter in Lake Tahoe, CA.

When I discovered I was pregnant, my immediate reaction was that I was too young to have a baby and that I should have an abortion. When I spoke with Ethan, my boyfriend at the time and father-to-be, he did not share my concerns and thought having a baby was a great idea. Looking in a mirror, admiring my new, baby-full appearance, I considered what he said and immediately fell in love with our unborn child.

I got a great job as a waitress. I spent the entire summer eating healthy, taking my vitamins, practicing pre-natal yoga, hiking several miles every day, swimming in the lake, resting, reading and listening to beautiful music.

Wednesday, October 14, 2009

Towson Parents 2009 046

My two little Witches.......

31 for 21.....-Mom come quick-

Those were the words I heard last year as Greta and Emma Sage were watching 'So you think you can Dance?'.......of coarse as a Mother your first response to a scream like this ~ with such urgency ~ is to painic and pray nothing is terribly wrong as you go running towards the voice calling.

and here is what I saw:

I was hoping someone put it up on YouTube.....

and Emma Sage, my little dancer was dancing away, getting ready for the day when she auditions and Greta was sitting with the widest grin across her face and me, I cried.....tears of joy and happiness to see this young man on national TV.

How cool is this!?!

Saturday, October 10, 2009

31 for 21 - Reece's Rainbow

The primary goals of Reece's Rainbow is:

To raise awareness regarding the plight of children with Down syndrome in foreign orphanages and their availability to be adopted

To raise adoption grant donations for each of our waiting children

To seek new adoptive families for orphans with Down syndrome internationally

To provide adoptive families with additional fundraising opportunities.

To fund humanitarian aid opportunities and improve the quality of life of our children waiting to be adopted

To fund educational and therapeutic opportunities for orphaned children with Down syndrome living in foreign orphanages

To fund and facilitate the development of new Down syndrome birth parent support groups in foreign countries, thereby decreasing the number of children placed in orphanages

To enact social change abroad about children with Down syndrome and other special needs through the testimony of adoption

Grab Button

I know all of our pocketbooks are stretched thin these days, and my hope of hope at one point in my life journey, was to adopt another child with T21, but as I have aged. my dreams of adopting in our family fades a bit....BUT the one thing I can do, is give little bits to a waiting child's fund, so that when their forever family comes along, the cost of adoption is offset by Reece's Rainbows sponsorship fund.

Think about sponsoring a child that is waiting for a forever home this holiday season and get a beautiful ornament to hang on your tree to remind you of the gift of life!

If you have a moment: Visit this blog~
Newbold Family Adoption
as it is one of the sweetest tributes to Down syndrome and the power of love, faith and prayer. A precious angel named Chloe graced the Newbold's life, only to be taken from them so quickly.....but Chloe gave a great gift in her short life, a love and understanding to her parents who loved her so dearly, to adopt two orphans, John Paul and Dasha. I promise you, you will leave this blog with a heart that has swollen in size from reading about the gift of Down syndrome in a families life.

Friday, October 09, 2009

31 for 21......Welcome to Holland

Amongst the tulips

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.

Thursday, October 08, 2009

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 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.

Wednesday, October 07, 2009

31 for 21 - Wordless Wednesday


Oh, how I love this child of mine....................

Tuesday, October 06, 2009

Gnome Wisdom

As those who visit our blog have learned by now, we are very Blessed to live in a little Hamlet not too far from the big city [both New York City and Philadelphia]. Rick grew up a mile up the lane from our home, and I lived 10 minutes away. It truly is a hidden treasure on earth.

The Columbia Trail that we walk regularly on, is also the home of Gnomes. It has been such a treat through the years to find new homes scattered along the trail. One of Emma Sage's favorite things to do when we are out walking is to stop a moment and 'look and listen'.

Well, Jerome the Gnome has come out of hiding in the forest and shares is Gnome Wisdom with us all. Last week we got to meet Jerome at our local book shop and take a little 'Gnome' walk. I have many pictures to share of our outing, but alas, my time is pressed. It is 8:21 pm and this Momma has miles and miles to go before she sleeps.

I leave you with my little Gnome~ [can you find her hiding?]

Gnome Emma Sage

and a link to Gnome Wisdom

31 for 21 - Michael Jurogue Johnson

Emma Sage in water color

Michael Jurogue Johnson

The above watercolors of Emma Sage were painted by Michael Jurogue Johnson, an 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 cards, 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 they 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.

Monday, October 05, 2009

31 for 21 - Mosaic Down syndrome

Get It Down; 31 for 21

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.
Mosaic 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.

Sunday, October 04, 2009

31 for 21 - Violets and Daisies

Towson Parents 2009 136

"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.**

Saturday, October 03, 2009

31 for 21

Get It Down; 31 for 21

quiet moments.......

“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

Friday, October 02, 2009

31 for 21 - Our Beginning

Get It Down; 31 for 21

Emma Sage

The story of Emma Sage
Conceived one year to the day of our miscarriage, Emma Sage is our fifth child. Before that moment, I never fully understood the power of ones soul. It was a warm August night and the moon was full. Suddenly, I arose from a deep sleep, overcome by the most incredible sensation. As I, succumbed to a feeling of total peace, her tiny soul entered my body. I knew immediately that I was pregnant. I placed my hands just over my uterus and asked God for this baby to stay, as I looked up at the stars dancing in the moonlight through our skylight thinking about what just happened.

About ten days later, a home pregnancy test confirmed my belief. There would be three more tests, just to be sure. After losing our last child, I was anxious and just a bit nervous, so I asked my midwife to check my HCG levels. A result consistent with the current stage of pregnancy calmed those fears.

It was about this time I began dreaming about a perfect little girl who resembled a china doll. She was so beautiful. Subsequent dreams included a labor and delivery on the side of the road. It would be a reoccurring theme, a series of dreams, where her labor and birth happened everywhere. My sister, a labor and delivery nurse brought me a cord clamp and told me to keep it with me, just in case there was a need, as she laughed about all of my stories.

We had no idea that clamp would be used.

We took a family vacation to Florida at about eight weeks. It was during this trip that another powerful sensation overcame me. As we waited for the Blues Brothers to begin their show, I watched a little boy dancing around. He would come up to us, smile, and then dance his way back to his parents. During the show, I could not keep my eyes off him. I looked at Rick and told him that our little one would like just like him. He had a little bit of something extra on his twenty-first pair , by way of Down syndrome. Rick put his arm around me and said, “That would be just fine”. I shared this story later with my sister , and then forgot about it.

At my thirteen-week visit, I was measuring big, so I asked my midwife if I could have an ultrasound to rule out twins, Rick agreed. I was actually still so nervous about the pregnancy that I wanted a little peek at our little one. I did not know then that this would actually be one of the worst experiences in my lifetime. As the process began, the technician was cold and seemed rather unconcerned about my comfort. During the middle of the scan, she announced, “There is something wrong with this baby” and then immediately called my midwife. I remember hearing her say, “I think we have a problem”.

Instead of having a little peek, relieving me of some stress and reassuring me this woman sent us on our way feeling scared and confused. We left there headed straight for our midwife Peggy’s office. She told us that the baby’s nuchual translucency measurement, the thickness of the skin on the neck, was abnormal. Our baby was measuring at 3.6 mm and anything over 3.5 is considered a soft marker for Down syndrome.

It was a difficult day.

Later that night Rick and I sat outside in the garage on his motorcycle and talked. I was just so scared not knowing what the future held. At one point, I asked, “what are we going to do?” His response “we are having a baby, we are not God, nor should we ever play God”. Oh how I love this man, not only is he my best friend, he also provides strength and support. An amniocentesis was not an option we did not want one. We did schedule a level II ultrasound for nineteen weeks gestation at a hospital near us.

It was the beginning of my quest to find out everything that I could about nuchual translucency, soft markers, and Down syndrome.

The time between that day and the scan at nineteen weeks proved to be an enlightening. 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. Some would say things like “you will be truly blessed” other would say, “What are you going to do”, but the responses that were most difficult included “Your not going to have it are you?”

We gathered the children to discuss the upcoming ultrasound and the “choices” people make based on its results. My oldest daughter 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 that 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?”

Emma Sage’s tiny little soul was already teaching those around her about the true meaning of life, even before she entered the world.

My sister came with me for the level II ultrasound. She was experienced in this department, and I wanted her with so that she could keep her eyes on the scan—focusing on the baby’s heart and other major organs. The baby was free of any structural defects and the nuchual translucency was no longer an issue. There was a concern about a slightly abnormal pyelectusis. This changed my risk/ratio from 1/47 to 1/280. There would be another scan at twenty-eight weeks. The baby had no soft markers for Down syndrome at that time, but I knew in my heart already that she would be born with that extra little chromosome.

I celebrated this pregnancy. I shared the joy with everyone. The possibility of Trisomy 21 didn’t matter.

This was our baby, our perfect, beautiful baby.

My dreams continued to intensify. At least once a week I had dreamt of the baby’s unexpected birth and my sister always laughed at my stories about the unusual places the baby was born. I kept the cord clamp with me, as I kept dreaming of an angel—that I thought might have been the baby we lost reassuring me everything was going to be fine.

On my due date, I checked out “Babies with Down Syndrome” from our local library, along with a bunch of books about gardening. When my mother in law saw it she looked at me and said, “you’re not going to need this book”, I just smiled and said, “I know, it’s just in case”.

On Tuesday May 8, three days after she was due, I was helping my daughter with a science project. When it was complete, everyone headed to bed early, as Rick had to leave by 3:00 a.m. I was having a bout of indigestion, and headed down stairs to take a warm bath. After the bath, I felt better and went out to the recliner, and fell asleep. About an hour later, I woke up in pain, and took another bath. This happened three times. The next time I woke up, it was 1:00 a.m. and I thought I might have been having contractions about fifteen minutes apart. I called my sister and told her what was going on; by this time, I was in a great deal of pain. She told me to call my midwife and she would get dressed and meet me at the hospital.

I left a message for the midwife at about 1:25 a.m. and waited for her call. During this time, the contractions seemed to be coming in waves, never really ending, just continuing. When she called back, the phone woke up Rick. He jumped out of bed and dressed because he knew something was going on. I told her I was not sure that this was the start of labor, and that I felt so weird. I thought it might be possible that she would check me and send me back home, but we agreed to meet at the hospital anyway. We woke up the children and I began dressing Otto. That was when a contraction that really scared me hit. I managed to get him dressed and then began dressing myself.

As I began pulling up my overalls, I got another contraction that hit me like a ton of bricks.

I remember thinking that if this was only the beginning of labor I was not going to be able to handle what happened next. I walked down the stairs as Rick and the children were already on their way out the door. Just before I reached the bottom, I had a strong sensation to go to the bathroom. I yelled for Rick, just as I realized this baby was well on its way, and I began pulling off my clothes. “Where do I go?” I ask Rick. I thought maybe the living room or back up to bed, but Rick told me to get into the bathtub, as he throws in a bunch of clean clothes while calling 911.

I listened as he asks the children “Kids, quick, what is our address again”, it had changed from a rural route just a few years back and he couldn’t remember the new one.

All those dreams, they had a meaning, they were my preparation for Emma Sage’s birth. I didn’t know where she would arrive, but I knew it was just going to be us, and that we weren’t going to be at the hospital. Rick helped me deliver her, surrounded by our children. As I raised her to my chest, I looked at Rick and said, “Oh look honey, she does have Down syndrome!”

Her birthplace was not only unexpected, it also shared an amazing coincidence. Rick’s grandfather died, sitting on a closed toilet in this very space. It was a gateway for souls enter and leave this worldly place. To honor her great grandfather Alexander, Emma Sage was given a third name—Alexandra.

Her birth was peaceful and joyous, not overrun with medical intervention or invasion. We welcomed her into this world alone, as a family.

When the emergency team arrived the loaded us into the ambulance, and we were off to the hospital. When we arrived, my sister and midwife were there to greet me. My midwife looked at me, smiling and said, “If it is nothing you can send me home”. We laughed aloud as Emma Sage had arrived just fourteen minutes after we talked about whether or not I was in labor.

Most newborn babies go to the nursery, but not our Emma Sage. Because she was born outside of the hospital, she was considered a dirty baby and had to stay with us. I would have had it no other way, because most children with Down syndrome are quickly whisked away from their parents for precautionary medical intervention—not our Emma Sage.

We all laugh to this day about the dirty baby who was born in a bathtub. I knew right away she had Down syndrome and my midwife and sister agreed. Many doctors came to peek at her. Hypotonia made her little body weak and unable to maintain her temperature, so the brought in a warmer for us. She was a quiet sleepy little one.

I tried nursing her but she was unable to latch on. I began pumping right away, as I didn’t want them to supplement with formula. I was going to breastfeed her, as I did all of her siblings, for as long as she wanted to. Those first feedings included a syringe, until she was able to latch, but once she figured it out, she nursed like a champion.

So many other unexpected things have happened since the birth of Emma Sage, so many subtle reminders about the true meaning of life.

Emma: The one who heals.

Sage: One with great wisdom.

Emma Sage, a name that she has lived up to since the before she was born.

Thursday, October 01, 2009

October is National Down syndrome Awareness Month

and I am joining in the 31 for 21 ~ where I am going to write 31 blog posts in the Month of October to Celebrate my daughter Emma Sage and everyone else who was born sporting a little extra [chromosome that is] on their 21st pair.

So in the spirit of awareness, check this out:


Josh & Bernadette's Ceremony Highlight from AndyCam Productions on Vimeo.

Someday I envision my daughter, Emma Sage walking down the aisle with her beloved Ryan. Last summer at the NDSC Convention in Boston, Ryan got down on his knees, with a fresh picked petunia in hand and asked Emma Sage to Marry Him!!!! She said YES!!!! Click Here to see photographs of the precious moment.

and then last year at the New York City Buddy Walk, they had their first 'official' date, as they decided that they were going to sit by themselves at the HardRock Cafe'

NYC Times Square Buddy Walk Video

NYC Times Square Buddy Walk Video

and here they are greeting each other after not seeing each other for over a half-a-year......

Kelsey's Birthday August 1 2009 005

All I can say after looking at Josh & Bernadette's Wedding is ~ Mark your calendars for 2025, as Ryan & Emma Sage will be following in the footsteps of this beautiful couple!