Monday, November 28, 2005


This is our fun 'Matching Game' that I make for Emma Sage to learn *sight words*. This is from the Jan Brett website [I just LOVE her books and drawings and her activity pages provide us with hours and hours of fun]....under the Dolch Sight Word Lists [this is list One]. I print out the page 2Xs on card stock paper. Then we laminate the 2 sheets individually. We then cut the words out of one of the sheets and apply velcro dots on the back of the word and then on the main board next to the right word. Emma Sage has a blast playing this game of 'Matching' and she is learning sight words at the same time. Posted by Picasa

Friday, November 25, 2005

Sisters.......


My creation
Originally uploaded by annikaleigh.
like a breath of fresh air. Emma Sage and Greta at the Ravine.

Silly cousins....


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Originally uploaded by annikaleigh.
Emma Sage and Ronan had so much fun sitting and reading flash cards to each other....Emma Sage would ask Ronan "What's this" and he would answer and giggle and giggle.

Thursday, November 24, 2005

Thanksgiving 2005

Everyday blessings,,,,,,,,that is what I am truly Thankful for on this Thanksgiving Day.

We had such a wonderful day celebrating with my family. Rick is away with work [in the Bahamas poor boy] while we are up in the chilly cold. The children and I are used to not having Daddy home during the holidays and they are so good about accepting his absence by giving Thanks for his job that provides us with so much. We headed down to Aunt Jan and Uncle Jeff's and Mamies. The traffic was moving nicely and the kids and I had a blast in the car singing songs and talking. Miss Emma Sage is just a hoot and is just too funny, singing all the songs that her siblings love. We also listened to 101.1 which plays only Christmas songs and Otto reminded us quite a few times that it was only 31 days till Christmas.

We made a broccoli casserole [our specialty it seems] and a pumpkin Cheesecake.........so preparation for us was quite easy....and headed south.

The weather today is cold..........very cold [I'm not ready for this type of cold yet, but I guess I best get getting ready because it doesn't seem that it is going to change anytime soon..........and yes, I will be honest,,,the thought of Rick in the Caribbean doesn't seem fair when the wind chill is this low!]

Dinner was delicious,,,the blessings very beautiful.

The children had lots and lots of fun. I never had cousins my age when I was younger at gatherings so it is so delightful for me to see my children with so many cousins of similar ages to play with at family gatherings.

We arrived home safe and sound and with full belly's.

I give thanks for the abundance of blessings that are bestowed on my family.....we are so very lucky and very humbled by the gifts of health, home, family and friends.

I give thanks for my little girl who reminds me everyday of the beauty and gift of life,,,,and how the little things in life are truly what matters.

Smile.....


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Originally uploaded by annikaleigh.
Cousins....what fun!

Me & Uncle Ikey!


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Originally uploaded by annikaleigh.
Emma Sage calls Uncle Mikey, Ikey!! too cute. or Ikel!

I love this picture.

Grandma, grandma....


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Originally uploaded by annikaleigh.
Playing hand-games with Kelsy. Emma Sage just loves playing handgames...like Grandma, Grandma, Miss Mary Mac and Down-down baby!

The Family Tree....


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Originally uploaded by annikaleigh.
This is such a great tree at Uncle Jeffs and Aunt Jans and we always love to take group pictures in the tree, thus the name, The Family Tree. But today was so chilly that not all the children or adults wanted to venture out to take pictures. Here is Otto, Andy, Connor, Fiona and Emma Sage!

Katrina and Rori....


image21
Originally uploaded by annikaleigh.
OK...Nini,,,I felt guilty enough to share this blurry photograph of our Thanksgiving 2005 since they all seemed to come out blurry of you today! You are cute a bit fuzzy! lol!!! You are cute in complete focus too!

Look who is sticking out her tongue!


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Originally uploaded by annikaleigh.
Emma Sage is a ham-bone! I just realized that the only pictures I have of Katrina today were blurry! Sorry Katrina.....

My siblings.....


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Originally uploaded by annikaleigh.
My siblings and I and Mamie [our fathers mother]. Mamie is Cherokee Indian and it is a facet of Thanksgiving that I have always questioned since I was a little girl after I learned of the fate of the American Indians many years after the Pilgrams had arrived in North America.

We are missing our brother Kenny in this group shot as he passed away a week after Emma Sage was born.

I am so blessed to have a brother and sister that are as kind and generous with their hearts as Mike and Patti.....I love you guys so very much! And Mamie...I love you dearly.

Little Miss Rori....


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Originally uploaded by annikaleigh.
What magical eyes you have young lady. Isn't she just precious.

Sir Ronan....


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Originally uploaded by annikaleigh.
This little boy just melts my heart! This is my brother Mike's little boy and he is truly a gem! At first he didn't want his picture taken so I said "OK,,,,no worries Mate" and went about taking Fiona's picture...at one point Fiona was loosing interest in the photoshoot and Ronan [who had been watching off on the sidelines] came up to me and said "I have an idea Aunt Tara,,,,you can take MY picture!" lol!!!! He sings for his baby sister the theme from Evita changing the words from Evita, to Rori Margaret [his baby sisters name!]

Miss Kelsy the runner!


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Originally uploaded by annikaleigh.
Kelsy is my sisters oldest daughter and an incredible young girl. She ran a 5K race this morning at the Turkey Trot and she and her Daddy recorded the race in 23mins and change. Her Aunt AnnMarie took first place of all the woman [AnnMarie is an Olympian Runner and placed 3rd in the New York City Marathon in the past]....and it looks to me at 8 years old Miss Kelsy will be reaching for the Olympic Gold someday in the future.

Connor and his poison Imax!


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Originally uploaded by annikaleigh.
Poor Connor some-how got into some poison Ivy or Sumac [Imax is what he said....too cute!]. Ouch is what Aunt Tara had to say to his swollen eye and face. But he is a little trooper and it didn't even seem to bother him and he did like all the attention inquiring on his adventures that lead to the exposure of the poison Imax! :0)

Miss Fiona


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Originally uploaded by annikaleigh.
My neice Fiona [my sisters youngest little girl]....does'nt she had the most magical eyes. Today was two months since Griffen's passing and I know my sisters heart was heavy, although she had a smile on her face all day.

Happy Thanksgiving....


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Originally uploaded by annikaleigh.
Caught little Miss this morning waiting for us to head out for Thanksgiving Dinner at Mamies.

"The bond that links your true family is not one of blood, but of respect and joy in each other's life." ~ Richard Bach

On this day of giving Thanks we are so truly blessed and Thankful for our health, family & friends.

Tuesday, November 22, 2005

"I made Emma"


image8
Originally uploaded by annikaleigh.
My cleaver little cookie.

Today Emma Sage comes up to me and says "Mom, I made Emma"....she had been in at the refridge playing with her Leapster Fridge Phonic Letters [I highly recommend this product] and is grabbing me by the hand to come see....I'm thinking to myself [well there is not enough letters for her to make her name as it is only one each of the alphabet]. We get to the refridge and 'lo and behold' what do I see? Her name.

She cleverly flipped the W over to make it an M......and when I asked her to spell her name pointing to the letters she says "E, M, upside down W, A" and laughs....she knew it was the W all along!

Another perspective on the question....

What is Down syndrome? Here is a link to a post written by Rebecca, Mother to Elainah, regarding the thoughts I have been having lately on why are so many people afraid of T21. Thank you for reflecting Rebecca, that was wonderful.

Always Chaos at Our House: DIAGNOSIS DOWN SYNDROME

Monday, November 21, 2005

Lost in thought....


image32
Originally uploaded by annikaleigh.
"Down syndrome does not discriminate on the basis or race, religion, national origin, socio-economic
level, geo-political boundaries, height, weight, eye color, hair color, or damn near anything else except "advanced maternal age." a quote from the DSListserv.

What is Down syndrome/Trisomy 21? Technically it is an extra chromosome on the 21st pair..................reality, it is.......It just is.....It just is a variation of humanity. Not more, not less,,,,just a variation.

I've been asking this question to people I know that have children with Down syndrome, and/or those who know someone in their life with Down syndrome.

Why have I been asking this question? Because it seems to me that the general population really doesn't have a clue when you read articles from expecting mothers in National publications treating the prenatal diagnosis of Down syndrome as if it were the plague........something so horrific that the only 'cure' is to terminate the pregnancy.

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 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.

I share my life with my daughter with the world as to help shed light to what it truly means to have Down syndrome.

Emma Sage is unique and as diverse as her siblings are, or as her friends are.

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.

Sunday, November 20, 2005

Otto


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Originally uploaded by annikaleigh.
My little man.....You are such a great son and wonderful brother!

~Innocence~


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Originally uploaded by annikaleigh.
I look into the eyes of my daughter and I wonder why so many people are afraid of these eyes........

Two interesting articles this Sunday.

The first:

The New York Times Week in Review, titled, The Problem With an Almost-Perfect Genetic World

The second:

The Boston Globe, titled, An extra chromosome isn't awful

and for me, spending this beautiful Sunday with my children, all four of them....laughing, talking, singing, playing,doing chores, making Sunday dinner, celebrating our life together....all of us,,,,those with 46 chromosomes and our little one with 47. Life is truly a blessing!

Siblings....


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Originally uploaded by annikaleigh.
Otto and Emma Sage sharing a fun afternoon together.

Saturday, November 19, 2005

On our way to another photoshoot....


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Originally uploaded by annikaleigh.
Our day begins just as it ends.....a sleepy little girl. Today Emma Sage, Otto and I headed into Manhattan for another photo-shoot for Toys R Us [this is her 6th job since August]...and since it was nap time she took advantage of the car ride and took a nap! So keep your eyes out in the Toys R Us fliers.....you might get a glimpse of our little Sunshine!

Subway bound.....


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Originally uploaded by annikaleigh.
Heading to the subway....Emma Sage just loves the underground now, at first she is quite hesitant and a bit scared....but she settled in on my lap and let the experience grow on her......

Getting all dolled up!!!


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Originally uploaded by annikaleigh.
My little glamour girl!!! This is her most favorite part,,,,sitting in the chair, hair/make-up and a huge mirror to watch the action.

Shelley and Me!


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Originally uploaded by annikaleigh.
Emma Sage and Shelley!!! She just loves Shelley and has had her as her hair and make-up artist on a few of the last shoots we have done! This is such a tremendous and positive experience for this little girl....she just LOVES modeling.

A peek in on the set....


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Originally uploaded by annikaleigh.
Here is Emma Sage and the photographer and production manager chatting before the shoot. Emma Sage just adores Michael and is such a natural in front of the lens.....she just cracks me up!!!!

Precious Moments....


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Originally uploaded by annikaleigh.
This is my most favorite picture of the day,,,,and it was taken by Otto. Here I am getting Emma Sage dressed in the outfit that they had picked-out for her for the photo-shoot. She was on a warm weather product [a teeter-totter] so she was dress in capri's and a t-shirt.

I LOVE NYC....


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Originally uploaded by annikaleigh.
This was the view rightout side the Soho Studio where today's photo-shoot was held......I just love New York Ciy! I miss spending my days and nights there....but we are so blessed that we are within an hours drive to the Big Apple. Both Emma Sage and Otto love the city as much as their big sisters do.

What a 21st Century Gal.....connected!


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Originally uploaded by annikaleigh.
On the phone with her agent! lol! Only kidding [although how much this kid is modeling these days it could be]....actually she is on the phone with her Daddy to figure out the evening for her sisters and the big football game so Otto, Emma Sage and I could hang out in Manhattan for a bit!!! We shopped in Times Square and had a nice dinner and Ferris Wheel ride....wheeeee.....life is good!

Subway bound.....


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Originally uploaded by annikaleigh.
Riding the subway down to the photo-shoot from Times Square [we always park at the park-in-lock in Port Authority]....at first Emma Sage was hesitant about the subway....saying "I no like this" and after the first stop at 34th Street she proudly proclaims "I like the train!"

Mommy & Me....


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Originally uploaded by annikaleigh.
My peanut and I on the Ferris Wheel.....what fun!!! Otto said that it was one of the best[est] days of his life [I have to agree, the three of us had the greatest time on our NYC adventure!]

Joy of Reading.....


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Originally uploaded by annikaleigh.

Reading is such an important part of my life and my childrens and it is so exciting to see Emma Sage's love of books and reading develop. We took this picture whilst riding on the Ferris Wheel in the Toys R Us in Times Square.

When Emma Sage was born and it was confirmed that she in fact, did have Trisomy 21, I did pray to GOD......I prayed for her health and I prayed for one thing.....that she would be able to learn how to read, as for me, reading is the most precious gift of the human experience [outside of health]. So when we saw this display, I knew I had to capture the 'joy of reading'.


Madame Tussaud's Wax Museum


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Originally uploaded by annikaleigh.
After the photo-shoot, we headed back to Times Square and I caught Emma Sage and Otto with a wax sculpture of Bernie Mack! Emma Sage thought he was real at first and kept saying 'HI!!!' lol!!!

Asleep again.....


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Originally uploaded by annikaleigh.
Little Miss at the end of a very long day in New York City! This picture just melts my heart.....my precious little girl, Mommy loves you dearly!

Stolen Kiss


Stolen Kiss
Originally uploaded by balloonist33.
No words needed to discribe this moment!!

Bride Waiting


Bride Waiting
Originally uploaded by balloonist33.
When I asked to use permission for this photo on my blog the owner told me this......"I like that your flickr site
mentions that you are trying to help people see the
""sameness"" of people with disabilities. This is
one of my primary objectives in life. We are more alike
than different and almost every one of us will one day know
what it is like to live with a disability. I just wish
everyone understood that different isn't bad, or a problem,
or wrong - it's just different."

I couldn't agree more.

I think that the greatest gift of having Emma Sage in our life is this new vision and amazing journey we are traveling and the incredible people we meet along the away.... balloonist33 is one of those incredible and insightful people!

Life truly is a blessing!

True Love


True Love
Originally uploaded by balloonist33.
I found this set of pictures on flickr.com as an entry to the calendar contest I mentioned below. This is the neice of the owner of these pictures......I was brought to tears of joy at the beauty of this moment.

Friday, November 18, 2005

What is Down syndrome?

What is Down syndrome? [clink on this link to learn the truth about Down syndrome]

I asked this question, in response to the article written below, to a truly diverse and inspirational group of parents who are blessed by the magic of T21 in their lives.

Here are some of the responses,,,,and I will add to the responses as they come in.


Kei, Mother to William:

I loved reading Coach Stallings book several years ago. And I love this recent quote from the site you posted: "I remember watching Coach Stallings on a television news magazine a few years ago. The reporter asked him if he felt sad, or even cheated, because after having coached so many healthy boys, that God had given him a son with Down syndrome. I've never forgotten what I heard next. Coach Stallings smiled and said in that deep, resonating voice: "How many fathers hear their sons tell them, "I love you, Dad," every single day? "Not nearly enough, coach. Not nearly enough"
*************************************
How truly sad it is that so many choose not to have a child w/T21. I guess they'll never miss what they chose to never get to know, but I for one cannot imagine my life without William. And it is a life that has been completely blessed because he has Trisomy 21, not in spite of it. I finally have felt in the nearly 6 years (since I got pg w/William) that I am on the path I am meant to be on. He has brought so much to my life that I would not have if he did not have that extra chromosome. The funny thing is, I remember thinking when Robert & I found out he might have T21 (no amnio, just a bunch of ultrasounds) that maybe we could enrich his life with our love and perseverence~ and that has been but one miniscule drop compared to how much he has enriched and educated us, and how much he has persevered. I feel so humbled by him, his love and his character. And blessed... completely, truly blessed.

Stephanie, Mother to Katie:

Down syndrome, means, plain and simple, that Life is Beautiful. It means that I have more patience then I ever knew I had. It means that my two sons have a sensitivity that I might have never been aware of. It means that my husband and I really know how much we love each other. It means that what I always thought the word 'smart' meant, was wrong. It means that my life has a richness that I could not ever possibly imagine. It means that I feel sorry for anybody who doesn't have anybody with down syndrome in their lives. It means that I regret that I never had anyone with down syndrome in my life prior to the last 7 years.....thus missing out on 36 years of beauty. It means that I challenge all of the people who are "scared" of down syndrome to walk a mile in my shoes and not to feel the beauty of having a child like Katie.

AS to the "why" people act like they do...I guess it's like a lot of things......in order to understand, you really need to be in it (having someone in your life with ds). But, once you are "in it"...you "get it"!


Francine, Mother to Sofia:

I can see the same conversation written with so many different variations: "Oh my, the kid next door:- has Down Syndrome- speaks a different language than me- has a different color skin than me- practices a different religion than me.What should I do? Woe is me. This is so terrible...."People, especially (but not limited to) narrow-minded, self-centered, ignorant, frightened people, are terrified by people who are not exactly like themselves.How to counter it (in all the above cases) is simple - exposure and education.That means being visible and vocal, without being defensive. Assume that people are simply uninformed, and provide them with accurate information, either directly ("this is what this means") or indirectly (for example, "this is what/how a person with .... does/says/acts in this situation"). This makes the "otherness" less strange, less frightening, less threatenting. The ignorance may be based on old assumptions, false information, baseless hatred, or any number of things. But a little knowledge goes a long long way to countering it.When I first got my amnio results, I found that the poeple with the "worst" reactions were mostly from a previous generation, when people with Down Syndrome were automatically institutionalized, marginalized and ignored. No one (regardless of their chromosome count) can thrive in that sort of environment. So the result was that they seemed very "other". Now, however, we are so lucky to have come so very far in how we help our children thrive. So those same people who were so upset about our amnio results have become Sofia's strongest supporters.(I was on a roll, and now my train of thought has derailed....)


Nicki, Mother to Andrew:

My husband had accompanied me to one of my monthly prenatal appointments. It happened to be the one where my Dr was going to tell me that my triple screen results had come back normal, as he had 3 times before. The Dr. walked in the exam room, shut the door and simply stated, "The triple screen results came back as borderline positive for Down Syndrome." No "Hello" or "Nice to see you again" or "how are you today" as he usually did. Just straight to the point. My Dr. knows me well enough to know that I don't want things danced around or sugar-coated.My response was "Oh, Ok." That was it. It was like someone told me that it was Tuesday when I thought it was Wednesday.....Oh, Ok. I figured, I can't change it- why dwell on it? Another ultrasound was scheduled to check further for signs of Down Syndrome. I was ecstatic at the idea of seeing my little baby boy again in a few weeks! My husband and I went home from the Dr.'s office that day and hit the computer, searching th internet for any and all information we could find regarding Down Syndrome. We spent countless hours over the next few weeks researching, talking, wondering. Never once did we feel lik the impending diagnosis was a burden, we were never sad about it, we weren't even really scared with the prospect of all the medical issues related to having a single extra chromosome. This was our baby, our wonderful child and nothing, especially one little extra chromosome, was going to make us love him any less.The follow up ultrasound showed "no obvious abnormalities" as was written by the technician. The idea of our baby having Down Syndrome was sort-of put on the back burner. It never left my mind, it just wasn't in the foreground anymore.On February 1, 2005 at 1:37am, after only 3.5 short, painful hours of labor, the light of my life and joy of my world was born. As soon as he was handed to me, and looked up at me with those big, beautiful almond shaped eyes, I knew. He did indeed have Down Syndrome. I felt nothing but overwhelming love for him. He was absolutely beautiful!The next day my Dr sat down with me to discuss all the ins and outs of Down Syndrome, all the nitty-gritty, from the developmental delays to the impending medical issues. I asked questions, he answered them. Then he told me that he was proud of the way I have been handling this situation. I replied, "Well, how else am I suppose to handle it? He's my baby and I love him for who he is. So he has an extra chromosome, there isn't anything I can do about it and I really don't think I would want to even if I could."Fast forward to present time. That squirmy little baby boy is now almost 10 months old. He has captured the hearts and souls of our entire family. He has brought more joy and astonishment into our family than I could've even hoped for. Yes, he's 'delayed' at some things. He didn't sit unsupported until almost 8.5 months, but in the general scheme of things, he's still within the "normal" age range for that milestone. We are lucky in the fact that he has no real substantial medical issues. He had RSV at 4 weeks old and required a 6 day hospital stay. So far that's all. No heart problems, no GI problems. Just a wonderful, beautiful, little baby boy who has countless adults wrapped around his pudgy little finger.I can't see the future to know what he'll be doing, and I really don't want to. My son has taught me to live in the here and now. To take joy in the little things in life. To not worry so much about something you have no control over, but to embrace it for all it's worth and go from there. I guess that's what Andrew having a single extra chromosome means to me- don't sweat the small stuff, concentrate on the good and life will be joyful.


Monica, Mother to Mikey:

Honestly, to me Down syndrome was just part of the path that lead me to my son. I think the reason that I was so sure that I wanted to adopt a child with Down syndrome is simply because the son who was born in my heart would have Down syndrome and filling out the papers to say that I was looking for a child with Down syndrome helped in the process of us being "matched" in the bigger picture of adoption.

There have been several people in my life who have touched the very core of what I believe in that have Down syndrome. It was a little boy with Down syndrome who kept me believing there was good in the world as I spiraled into a severe depression many years before I would come to adopt Mikey. This little boy was the only one who could touch my soul in a time when I began to feel I didn't have one. It was a little girl with Down syndrome who taught me the joys of everyday living when I was thinking there had to be more to life than day to day happenings and began taking her swimming a couple of times a week and soon came to realize that there would be no greater moment in life then the first time she managed to float on her own. It was a group of adults with Down syndrome training for Special Olympics at the local pool who taught me the value of perservering to reach a goal that you had set for yourself. It was a friend's mother who has a son with Down syndrome who made me realize that one could smile with pride and contentment and new life no matter how hard their life had been when they looked at their now grown son who has Down syndrome.

To me... Down syndrome means everything and nothing. Mikey is Mikey and he came to me because of Down syndrome but not because him having Down syndrome defines his personality. I am me because it seems that there have been too many times in my life that I have been touched and changed by a person with Down syndrome for it to be just a mere coincidence. And yet it is their personality and who they are as individaul people who touched me as each has touched me in a different way. Down syndrome is somehow tied in to what I need to learn as I travel my path here on Earth and I don't know all the ins and outs of it but I just feel it really is.


Vicki, Mother to Travis:

I have been thinking a lot this week about how Travis has changed me. It may not be a major change, but a change none the less. Before I had Travis, I was someone who would look away. I hate to admit it, but I was. I might sneak a look, try not to stare. A woman I used to work with has a son w. T21 who is about 10 months older than Travis. Our older children have the same soccer coach, and while I was pregnant w. Travis, I saw her and her son for the first time out at the soccer field. (Her son's name is Travis too) I remember thinking I'm glad that's not me. (we did not know our Travis had T21 until he was born) I look back at that and I am ashamed. Now that I know my Travis, I'm glad that it is me. Now, when I see someone w. T21 I smile. I was at the grocery store this past Monday, and as I went down the isle, a man and his son were passing me. I looked at the son - he appeared to be a teen -- and I got the biggest smile on my face when I saw that he had T21. And he gave me the biggest smile back. I don't walk around with a smile on my face all the time, and don't usually smile at strangers. But it is automatic for me now to smile when I see someone with Down Syndrome. I can't explain it, but I feel that I'm a better person for it.


Dani, Mother to Alyse:

I can remember what it was like to get that Diagnosis, I felt that my world had been forever changed in a few short utterances from our Perinatologists nurse. "So sorry your baby has Down Syndrome, but you're having a girl if that helps" My thoughts, "a girl huh?, but what about that other thing you said, could you possibly be wrong? Are you absolutely sure? I must have misunderstood what you said, could you please repeat that?" I felt like my life was over, the life that I had all planned out in a neat little package, tightly wrapped in ribbons and bows. All would be different now, I had lost my ribbons and bows.You know what I was right, my life IS completely different. My ribbons and bows are more sparkly now, my package has grown to 2, 3, 4 times the size it was before. My life has blossomed in ways I never thought possible. I can not believe how incredibly blessed I am to have this impossibly perfect soul in my life. The thought of the many many ways this child has enhanced my life can bring me to my knees and make me cry those tears all over, but now those tears are tears of a heartfelt gratitude. I am truly one of the luckiest people. I know what it means to be empowered by unconditional love. I feel the light, it radiates from my little Alyse. She is my sunshine, my warmth on the coldest of winter days, she is mine. Thank you God for giving her to ME, I am so incredibly lucky.

Betsy, Mother to Paige:

This is the line that kills me........
"As for that baby that will never be, I will remember him always. But I'm quite certain that I made the right choice for the three of us." That pretty much says it all about the author. She totally deals in the "tidy" words and tucks it all neatly away in her memory as some unfortunate accident that happened to her.He wasn't "a baby that will never be"...he was ALREADY a baby, waiting to be born, one with a heartbeat, and fingers and toes and all the things a baby needs to be a baby when SHE chose to end his life. Honestly, at least call it like it is...SHE decided he should not live. And she's quite certain she made the right choice for the THREE of them?!?!?!? OMG!!!!! No...she's quite certain she made the right choice for her husband and herself perhaps. The baby had NO choice at all.We always see the statistic that 80-90% of women who find out their unborn child will have DS will abort...But...we also need to be aware that there is a 2-3 year WAITING list for people who want a child with DS in their lives...who will very willingly and lovingly, and consciously, welcome such a child into their family.Perhaps this big, important journalist could have spared 9 months of her life to give that gift to another family...and more importantly, to her son.What is Down Syndrome to me??It just is. Just like blonde hair or blue eyes or goofy ears or being tall or short is. Not good or bad...just Down Syndrome...nothing more or less than that.And choosing to give my child life has been such a blessing for me...Unlike this author, I don't have to spend my whole life wondering what Paige would have looked like, who's eyes she would have, what the sound of her voice and her giggle are; I don't have to think about the "would have beens"...she would have been 7 or 8 or 9...I get to know...I...get to know.

Peggy, Mother to Cason:

First, a little background. My husband Chris and I have been married for 9 years. He and I have been the best of friends since the very beginning. He is who I am supposed to travel this life with and we knew we wanted to have a family together, but I had been told at the age of 18 that it might be difficult for me to become pregnant. So with that said, as soon as we were married, we began trying to have a baby. We went through A LOT trying to get pregnant. Clomid, surgery, tests, 2 IUIs, injectable drugs, 3 IVFs, and finally (and our very last attempt via Artificial Reproductive Therapy) we got pregnant via a frozen embryo transfer with embryos from my last IVF. As you can imagine, we were absolutely thrilled! The pregnancy wasn't easy as I am diabetic. I was on insulin prior to getting pregnant and during the pregnancy, so I was closely monitored for the whole duration. I also had a subchorionic hemorrhage (a bleed around the amniotic sac) from 10 weeks until 15 weeks. Since it had taken so much for us to get pregnant and we would not change the outcome of our pregnancy if everything was not OK, we chose not to have any prenatal testing (triple screen or the now controversial 1st trimester testing that my peri has offered for quite some time to expecting mothers) other than some 20-odd ultrasounds (due to being high-risk). Everything always looked good and the only "iffy" thing was that Cason's nuchal transparency measurement was on the high-end of normal, but normal nontheless. We never worried about it and no one ever said anything about being concerned either.Fast forward to my 36th week. I developed pre-eclampsia and was admitted to the High-Risk Pregnancy Unit at the hospital that I was delivering at. I knew that we would be having Cason at 37 weeks after an amnio confirmed lung maturity due to his size and my diabetes (plus he was breech), but it looked as though he was coming a little sooner. On the Monday morning prior to his delivery, we did an amnio, determined lung maturity and scheduled the c-section for the next morning. Here is an excerpt from my birth story (keep in mind, this was written shortly after his birth and I wasn't aware of all of the "people first" stuff yet):**Monday evening, we were told that the amnio results had come back and the baby’s numbers were nice and high showing that his lungs were fine. I was so excited that I was finally going to meet my baby!! Surgery was scheduled for 8a.m. Tuesday morning and at 8:38a.m., Cason Alan Smith was born. I had asked that Chris be the one who told me whether we had a boy or a girl, and that smile behind his mask when he said, “It’s a boy” will be forever etched in my mind. They took Cason right over to the table to start cleaning him up and getting his stats. He couldn’t maintain his body temperature or keep good saturation of oxygen, so they decided they would take him over to the NICU for a closer look. I knew that this might be a possibility anyway due to my diabetes and him possibly having low blood sugars, which he also did have, so I tried not to worry. After I was sewn up, my OB went into the NICU to see how Cason was doing. He came back, walked over to Chris, leaned down, and told him something in his ear. When I asked Chris what he had said, he told me the words that I will never forget. Chris said, “Dr. Sumners said that Cason has some physical characteristics of Down Syndrome.” My heart broke into a million pieces at that moment in time. I just stared at the ceiling of that operating room thinking of all that was happening or could be happening with my baby. I knew that there are often heart problems with Down Syndrome children and I also knew how serious those problems could be. I didn’t know how I was going to care for potentially sick child. How was I going to tell my family? Why did God make me wait so long for a baby only to finally give me one that wasn’t the perfect child I had imagined and expected? So many things ran through my mind in those minutes after he was born. Once they got me back onto my bed and into recovery, the nurse told me that they would wheel me through the NICU on the way back to my room so I could see Cason. The first time I held my baby and looked into his eyes, I knew that everything was going to be OK and that I would do everything I could for him. It didn’t matter that he had Down Syndrome. What mattered was that we were going to make sure he was healthy and we were finally a family. In the days that followed, we found out that Cason’s heart was fine and he didn’t seem to have any digestive problems. He does have a small hole in his heart (a heart murmur) that will close between 4-6 months of age. As soon as he began eating, he took to it like a champ and liked his meals every 3 hours. He did develop jaundice, which coincidentally, is the only thing that kept him longer in the NICU. His levels had to be down below 12 before they would release him and little Cason worked hard to get them there so he could go home with his mommy and daddy. He was released on September 26th, one day after I was. We are thankful that Cason’s health is good and that he doesn’t seem to have any major complications right now. He is a wonderful baby and each day with him fills me with more and more happiness. He truly is a blessing and gift from God.Each day that passes seems to get easier for me, but I still cry and grieve for the child that I was expecting to have. I know that in time, Cason will erase that expectation and show me that he was who I was waiting for, I just didn’t know it.** Now this was written quite a while ago, but I'd like to think that I've grown even more from this experience and from what Cason has taught me as well. First and foremost, he is a baby. He needed me to care for him just like I would have had he not had Down syndrome. That was so hard to learn. I think that we're so lucky that Cason is our firstborn because really, we don't know anything different. We adore this little man and neither of us can imagine life without him! He is our world and each day is full of wonderment with him.So, I guess, what I would say in answer to your question is this...I'm not sure what Down syndrome is to each family it affects, but I do know what it's NOT...Down syndrome is not a death sentence. It's not horrible and it's not embarrassing. Down syndrome is Cason, and Emma Sage, and Brady, and Parker, and all of the other little souls blessed with an extra chromosone. I feel blessed to have been given Cason, as well as all of his extra "special-ness". He is part me and part Chris and above all, he is a miracle! Plain and simple, a miracle formed by the hands of God. I guess I would like to ask those who choose not to be parents to babies with Ds, who could ever dream of turning such a gift away?! They just don't know what they're missing! Peggy, proud mommy of Cason, 13 1/2 months old!

Thursday, November 17, 2005

CalifonSanta3


CalifonSanta3
Originally uploaded by annikaleigh.
Someone is getting very excited about the upcoming Holiday Season.....Emma Sage has been singing Christmas songs and has found ever video about the season on the shelf and has them piled up to watch. Ho,Ho,Ho......I just love how excited this little girl gets!

Discrimination

dis-crim-i-na-tion ( P ) Pronunciation Key (d-skrm-nshn)n.

The act of discriminating.

The ability or power to see or make fine distinctions; discernment.
Treatment or consideration based on class or category rather than individual merit; partiality or prejudice: racial discrimination; discrimination against foreigners.


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Wednesday, November 16, 2005

One Womans Choice

One Woman's Choice

After a Prenatal Test Shows Down Syndrome, A Wrenching Decision
By Maria Eftimiades
Special to The Washington Post
Tuesday, November 15, 2005; Page HE01

~~~~~~~~~~~~~

What makes me so sad about this article? The fact that for many people the diagnosis of Down syndrome automatically equates to a death sentence.

This is not about abortion for me ~ I firmly believe in a woman's right over her own body and her right to choices.

For me, this article smacks of Eugenics, pure and simple.

Ms. Eftimiades should grieve for her precious son. She should grieve over the fact that she allowed fear, prejudice and discrimination to steer her actions.

I'm the same age as Ms. Eftimiades [well almost, I'll be 42 next month] and as a Woman and a Mother, I feel deeply for her loss. She has no clue to the incredible magic that T21 would have brought to her life. She wanted so much to be a mother, and for that loss I ache for her, because being a Mother is truly the essence of who I am now as a human being. But Ms. Eftimiades should really re-think her desire to be a Mother, it seems to me by her reasoning and actions with this child she is not ready to be a Mother and she doesn't fully understand what it MEANS to be a Mother.

Mothering is unconditional love, unconditional care, unconditional nurturing.........It is embracing your child, your whole child and going forth in life with this child and doing the best you can, unconditionally.

Ms. Eftimiades should grieve, grieve for her little boy who would have looked more like his parents, than not. A little boy who would have loved them unconditionally, irregardless of their fears and biases. Their son would most likely verbalize to them that he disagreed with their thought process of making the *right choice for the three of them*............he would most likely say "Mom, you made this choice for the two of you,,,,,,because you see Mom, I would have embraced my life with all my heart and soul and I would have filled your lives with so much love, laughter, joy, excitement and enlightenment."

This article hurts me, Ms. Eftimiades...........It hurts me as a MOTHER, because you have publicly proclaimed to the world that MY daughter and every other human being with Down syndrome has no worth,,,,,is disposable...

You should grieve, Ms. Eftimiades,,,,,,,,because you are wrong, so very wrong.

~~~~~~~

Update: I found this wonderful letter on NRO regarding this article.

Monday, November 14, 2005

The Magic of T21

Have you ever had one of those moments in life where you just didn't want the event to end?

Tonight was one of those moments for us.

Emma Sage had dance class. Every week it is truly inspiring and so much fun, but tonight it was absolutely magical [and of coarse I forgot my camera!]

Class tonight was held upstairs with the bigger girls. Emma Sage was completely in her element with the bigger girls [as she just adores her big sisters and is always their little shadow]. The room is huge [in a renovated church] and the floor just glistened and this caught Emma Sages fancy.

She followed completely and was befriended by a few of the bigger girls [they actually seemed to be fighting over who got to work with my peanut]. She danced and twirled and just beamed from ear-to-ear the whole class. This kid has a spirit that is huge....she just radiates from her whole being.

Greta, Otto and I sat off on the side of the stage and we all had permanent smiles plastered across our faces,,,,,,my face actually hurts from smiling so hard.

And the most magical moment of the evening? Watching Emma Sage and a young girl of 13 named Michelle dance across the floor together doing turns,,,,both ballerinas shared that same precious magic,,,,the magic of an extra chromosome on their 21st pair.

Calendar 2006

I have a favorite place on the Internet, it is called Flickr.com....and the reason I love this site is because of my passion for photography. I did a search right after I had joined and found two great groups regarding 'Down syndrome/T21' and have been adding pictures to the group pool.

One of the group founders 'Phototropism / Javier Delgado-Esteban' is trying to put together a calendar for 2006 called People with Down syndrome and is currently taking entries to be chosen for the calendar by popular vote. You can contribute 3 photographs to be considered and you can't vote on your own photos.

I hope those of you who visit this blog will click on this link and check out this amazing community and I hope you dig thorough your photographs and find that precious, perfect picture of your special someone with T21 and submit it for the calendar. Also, I hope that you think about ordering a copy of this upcoming calendar!

Saturday, November 12, 2005


Little Miss playing her favorite game today. It is called [Sequencing Fun by The Learning Journey] where you have three puzzle pieces that only fit together in the correct sequencing order] and Emma Sage just loves playing this game and she does so incredibly well [she gets every grouping done, there are 20 of them, and won't stop playing till she gets all 20 three piece patterns done.  Posted by Picasa

awalkintheorchard


awalkintheorchard
Originally uploaded by annikaleigh.
This picture reminds me of a Grimms Fairy Tale....I look at it and my mind wanders......what is she looking at? Where does the path lead too? What is lurking behind the trees? Where is this childs Mother? {Behind the lens but still.....makes me wonder?!?}

Just playing around.....


My creation
Originally uploaded by annikaleigh.
See my little girl on Broadway....this picture reminds me of a Grimms Fairy Tale....I look at it and my mind wanders......what is she looking at? Where does the path lead too? What is lurking behind the trees? Where is this childs Mother? {Behind the lens but still.....makes me wonder?!?}

Friday, November 11, 2005


We had Chinese cusine for dinner tonight and look at the fortune Miss Emma Sage got.....very fitting! Posted by Picasa

A new studio....


image25
Originally uploaded by annikaleigh.
This was today's studio....it was a great place and all the children had so much fun!!!

Ol' Blue Eyes....


image28
Originally uploaded by annikaleigh.
Emma Sage your Momma thinks you have the most magical eyes! This was on the way home from the photo-shoot.....I'm sorry for the mix up of writing and pictures, but I couldn't for the life of me figure out how to include more photographs within the text [I promise I will work on that skill!]

Fish face


image37
Originally uploaded by annikaleigh.
Can you say 'Fish Face'.....Emma Sage loves making her lips like that of a fishy!

Getting hair and make-up done


image22
Originally uploaded by annikaleigh.
I think this is Emma Sage's most favorite part about this activity....she just loves being pampered and styled!

Guess what we did today?


Guess what we did today?

Yup, my little model was at it again! Today we headed to a new studio to participate in a photo shoot for Toys R Us.

Boy did Emma Sage have a blast! It was a photo shoot with a whole group of children [ten to be exact] and they dressed in summer wear and got to play on a really neat swing set! There was even a pretend Dad! Emma Sage thought that was funny!

First picture is of my little princess waking up from the car drive, we left the house at 7am [way before her waking time, so this stretch was just precious!]

Next is a picture of Emma Sage getting her hair done [a bit blurry, sorry],,,,,,this is one of the most favorite things about this whole experience for her, and she just LOVES having her hair and make-up done.

She did incredibly well, she actually was away from me for the whole hour of photos, and I heard lots of praise for her, and when Sally brought her back out from the shoot she told Greta that she did amazingly well and was just precious. I’m still trying to figure out how they got that many children to look and smile at the right time to get an ad [but they did].

We work with a wonderful agency, and the set designers, stylist, photo assistances and photographer we all great!

Hopefully, Emma Sage will get many more bookings because she truly lights up and is such a little social butterfly at these photo shoots!


Here is a link to her first photo session last year. Click on this link to the Toys R Us catalog and Emma Sage is on page 18,,,,,,,,,,,,,,,,,,,, and check in this Sunday's Toys R Us catalog as she should be starting to appear from the photo shoots she did late this summer and early fall!