Happy Birthday To My Dad!

He didn't tell me how to live; he lived, and let me watch him do it. ~Clarence Budington Kelland

Today would have been my father's 74th birthday. How very strange to think of him as 74. I think he would have aged very well -- he had crystal blue eyes, and snow white hair at a very young age.

Paige and I both inherited his blue eyes - and Paige even added her very own brushfield spots to them.

And although I've managed to keep her from this secret for some years, she has recently discovered her love for m & m's, which comes directly from Grandpa as well.

I wonder how long it will be until she discovers the 6 m & m's in the little plastic bowl actually come from a bag that has a LOT more in it!! :)

Grandpa would have shown her long ago...

Happy Birthday, Dad. I'll save the brown ones for you...

One Man's Treasure

My bosses (they are husband and wife) have built a new house, and they are moving into it this week. I am helping them to unpack their offices. So, last night, Wayne and I go over to take some computer related stuff, and my boss starts talking about how some people really treasure their stuff and how some people can give away things that would seem very precious to them, heirlooms, etc.

He was telling us a story of a friend of his who sold all of his stuff to move to a smaller place. One of the things he sold was a big giant copper tea service -- the only item his grandmother was able to smuggle here after her survival from Auschwitz. Imagine selling something that was so very treasured in your family.

If you wanna see stuff, they've got stuff. Their stuff has stuff. They have hired professional movers, as they have some very expensive statues and artwork that needed to be moved carefully.

I didn't really think about what he was saying last night, until a fleeting moment today when I went to take a vase out of a box.

I was just putting out the office things, and as I went to lift the vase out of the box, I noticed it was broken. "Oh, our first casualty!" I exclaimed, quite sure that it wasn't much of a catastrophe--a simple vase with some silk flowers in it.

Turns out it was one of the last gifts that one of my boss's father has given to him before he died. The vase was already broken, but had been kept, broken side turned toward the wall, because it had sentimental value.

And yesterday, as I was moving an item in the old office, I found a tiny fake rubber mouse on the floor. I pointed it out to my other boss and she jumped for joy; picked up the tiny mouse and was so happy to have found it. It turns out it was the one and only treasured toy of a cat she had for years and years, and she could never find it after the cat had died.

So, among some very valuable items, some of their treasures are found among the things you'd least expect.

I think that is true for all of us. I have stuff that means a lot to me. Some of the items are pretty obvious treasures. Like my great grandmother's dishes that are over 100 years old, and displayed in my china cabinet in my dining room. Anyone can tell they are very old, and likely worth a bit of money. And it doesn't take long for me to tell you that these were given to my great grandmother, who was born in 1876, on the occasion of her wedding, and then passed to my Aunt Sadie, whom I loved dearly, who passed them on to me.

Its pretty cool that I knew and remember my great grandmother -- even for me to think about it, its pretty nifty I knew someone born in 1876.

I treasure a little silver pedestal dish that holds a cobalt blue bowl and silver spoon in it, because I remember my great grandmother slicing apples into it for me, and telling me that only real princesses ate apples with a silver spoon from a bowl.

I was 5; she was 93; I remember the color of her hair (the same color of my sister's hair now!) and the 'granny' shoes she wore. I remember how tall she was, and how fascinated I was by all the lines in her skin. She was the most beautiful person in the world to my 5 year old eyes.

There are other obvious treasures around my house - photo albums, and memory boxes, and gifts given to me or the girls for special occasions.

Some would be considered very unvaluable to anyone who picked them up -- the well worn pacifier that was Dakotah's as a baby, a copy of "The Monster at the End of this Book" that was read nightly for months; the "coming home" outfit that each girl came home in; a favourite stuffed animal of theirs; the box of love letters between Wayne and I during our courtship.

But its the not so obvious treasures I'm thinking about tonight - the little stuffed racoon that my father gave me the last Valentine's day he was alive, the lock of hair that is wrapped in a piece of gauze from Paige's 2nd night of life...to most a treasured snippet of newborn hair; to me, fear, dread, and eventually triumph all wrapped into one; the ratty looking ivory dress that Dakotah wanted to wear every single day of her 3 year-0ld life, until I finally hid it because I couldn't look at it one more time; the picture of Dakotah that is taped in a thousand places, because it kept vigilant watch over Paige in her incubator during her first months of life; the "Big Sister" button that takes my breath away every time I see it because I remember calling Dakotah when Paige was born, and telling her the baby had arrived, and hearing the complete wonder in her voice as she whispered, "I have a baby sister?"

These things will not be treasures for anyone one unless their legacy is passed along with them; for it is the story, not the stuff that makes these priceless.

Some things will remain my treasures only as the telling of the story will steal the value of the treasure. Like the little box of teeth that Dakotah found when she was about eight years old. Thinking quickly, I told her that they were our dog, Oreo's teeth, so she wouldn't have a favorite childhood belief stolen from her for just one more day. Little did I know that this box of teeth would become her treasure to show her friends, to tell Oreo stories about, to wonder which tooth fell out first.

There will never be a time when she needs the real story of The Teeth. They are far more valuable to her now.

For Paige, she will never know that I spent so much money and time decorating her room and making it perfect just for her -- complete with all her beany baby ducks, and her big, big, BIG yellow duck that sleeps beside her, because a nursery was just too much to consider when I was pregnant with her.

Wayne doesn't need to know that I still catch my breath when I see him in a white button up shirt, because I remember him wearing one the night I met him, and I think of it every single time he does it now.

Or that even when I'm grumpy or aloof, or in a "not now" mood when we go to bed, that I never wake in the middle of the night without putting my hand on his shoulder and whispering "I love you" to his sleeping body.

Maybe he does know. And maybe its his treasure too.

Tonight's Deep Thoughts

For most of you who know Dakotah, you believe her to be a shy, quiet young lady with relatively good manners.

The truth is, within the confines of her own home, the child started talking at 18 months, and hasn't stopped yet. We know she has a future as something like a used car salesman, where she will talk you into oblivion until you are offering to pay her twice the sticker price just to make it stop, lol.

She is a bright, inquisitive person, who, like most kids her age, thinks she has the wisdom of the ages, and feels the need to impart her wisdom into many conversations between her inexperience, unworldly parents.

A thousand times a day, she will start a sentence with, "I have a question...." and off she'll go. She has even been known to get up in the night to use the bathroom, and think of something uber-important that she must share with me as she drags me out of a sleep-induced coma with, "Mom, guess what..."

We sometimes joke that Paige's first complete sentence will be, "Dakotah, will you please, for the love of all that is good and right, just be quiet for two minutes."

Well...as I was sitting here composing a blog entry (that probably won't be finished tonight), about eugenics, and advocacy, and my role in helping educate people, she interrupts me with this...

"Mom, I have a question..."

"Yes, Dakotah?"

"Wouldn't it make more sense if we didn't lose our baby teeth until we were old, like 40, (I'm 42, btw). That way, each set of teeth would last about 40 years instead of one set lasting like 7 years, and the other set having to last like 73 years."

"yes, Dakotah, that would make a lot of sense."

"Why don't we lose them like that then?"

So, I launch into what seems like a logical explanation to me --as our jaws grow, we need bigger teeth to chew, etc.

She thinks for a moment, and says, "Still, you could space out brushing your teeth much better my way."

Is there really any more reason to argue with her?!!

This blog entry has been brought to you by every mother who ever uttered the words, "I can't hear myself think."

To Amy Cahill

Amy Cahill
c/o Indy’s Child Magazine

Dear Ms. Cahill,

Congratulations on the recent birth of your daughter. I’m sure that she is a great blessing to you, and is teaching you the immense type of love that a person can only have for their child.

I believe that all children are great gifts to their families, and it is the obligation, and privilege of that family to celebrate and cherish that child.

I was so very disappointed in your comments in the article you wrote for Indy’s Child, in which you share with readers how very fortunate you are that your daughter shows no signs of Down syndrome.

Ms. Cahill, the parents of the children who appear on the front cover of the current magazine are no less fortunate than you are – they are not lesser parents, and their children are certainly not lesser children because they have Down syndrome.

Perhaps your experience with prenatal testing has offered you a bit of insight into all of the things that can happen during conception and pregnancy. Perhaps you are no longer naïve that everyone gets their preconceived notion of a “perfect” baby.

But in your writing, it is clear that you have missed a very key part of the prenatal testing experience. Many women chose not to have any testing at all – knowing that the child they give birth to will be the “perfect” child for them. Many women do not care, and do not need to know, whether or not their child will be born with the typical number of chromosomes.

Many of us realize that the prenatal diagnostic testing you report about actually gives very little information to pregnant mothers. Sure, it predicted for you the number of chromosomes your daughter has, but did it tell you how in love with her you would be? Did it tell you how sweet she would smell, or what color her eyes would be, or when she would smile for the first time? Did it tell you that she would like gymnastics or dancing, or horseback riding when she gets older?

All of those things are much more important to our lives than a chromosomal count.

Ms. Cahill, I have a child with Down syndrome, and I am very insulted to think that you might consider yourself more fortunate than I am because of that. I also have a child without Down syndrome, and each of them has brought their own beauty and lessons to my life.

My daughter was born with a serious birth defect that was not related to Down syndrome; a birth defect that led me to prenatal testing, and a prediction that she would not survive past a few moments at birth.

I continued my pregnancy in hopes of donating her organs to another child that might have life because of her – perhaps one of the “fortunate” children like yours who would need a kidney or a new set of eyes.

Even armed with this knowledge, I did not consider myself unfortunate. I celebrated my baby, and enjoyed my pregnancy and every single moment that my baby was growing inside of me.

I felt like the luckiest person in the world, like I had won a lottery, when she arrived screaming – she was alive! And I didn’t feel unfortunate for a single second that she had more chromosomes than her sister did.

Since her birth, she has done amazing things. She kicked off a children’s telethon with full page newspaper ads, and television commercials when she was only a year old. She has attended several lectures that I have given about prenatal diagnosis, and the celebration that comes with welcoming a child with Down syndrome into your life.

We have met countless families just beginning this journey into the world of Down syndrome, and she has, without a doubt, saved the lives of many unborn babies who might have not otherwise been given a chance to live.

She was the first child with special needs in her school, and a “if you build it, they will come” mentality has happened there now…a wonderful program that promotes integration while helping children with their specific needs has emerged. She is very popular at school, and I don’t go anywhere without someone knowing her and stopping to say hello.

She has an infectious laugh, and a ready hug, and beautiful, waist length blonde hair, and blue eyes the color of your favorite pair of faded blue jeans. She loves swimming, and horseback riding, and playing tee-ball.

She is a true celebration of Down syndrome – despite numerous medical interventions as a baby – she is thriving, happy and amazing.

Even more than that, we are a typical family just like yours is. We go to the park and play on the swings, and take family vacations, and dance in our living room.

Let your recent article and its resulting commentaries to the magazine be a lesson to you, Ms. Cahill. Please do not ever see a child with Down syndrome in a mall or on the playground, or sitting beside your daughter in a classroom, and think for one single instant that that family is less fortunate than you are.

To do so would be a huge injustice to your child, and to mine.

Sincerely,

Betsy Lapierre
Alexandria, Ontario

Letter to Tom Wynne of Indy's Child

Dear Mr. Wynne,

It is with great disappointment that I write to you regarding your article on Prenatal Testing, written by Amy Cahill in the current issue of “Indy’s Child.”

It is appalling that the parents of the children whose pictures appear on your front cover were led to believe that they were being featured as part of a “Summer Fun” story. How disgraceful that this article was published without their knowledge.

I cannot imagine anyone with any professional ethics or knowledge of journalism would have let Ms. Cahill’s story appear in this fashion. Did no one consider the other side of this equation? What about parents who do not chose to have prenatal testing? More importantly, what about allowing the families of these children who are on the cover of the magazine to share their experiences in your magazine?

Although the facts about how prenatal testing is done, and how the results are calculated are correct, Ms. Cahill has chosen to slant this story in a very negative fashion. Using her own prenatal testing experience, she describes how devastating it was to learn that there was even a small chance her child could have Down syndrome.

In the article she quotes the benefits of women having opportunities for earlier and earlier prenatal testing, “before anyone else even knows she is pregnant.”

The only reason this would be of any benefit is because the woman would then have the opportunity to abort that child before anyone knew about it. Indeed, approximately 85% of women who are prenatally diagnosed will go on to abort.

I cannot imagine the pain, and the knotted, twisted, sick feeling in the pit of their stomachs that the parents of the children on the cover of your magazine must be feeling to think that even one person who has picked up your magazine may think that they are encouraging and promoting this testing for purposes of abortion.

I wonder if Ms. Cahill would submit a picture of her “perfect” child that she was so very fortunate to have given birth to without Down syndrome for next month’s cover. And perhaps you could run an article on the inside of your magazine that tells everyone reading it how they can predict prenatally that their child may look or act like hers does – you know, so they can prepare for such a misfortune.

Of course, I know the answer to that question – she would never allow such a thing to happen.

Unfortunately, you took that choice away from the parents of these children by keeping them uninformed about the contents of your magazine.

Shame on you.

Sincerely,

Betsy Lapierre
Alexandria, Ontario

I Was Fortunate

Today's blog is a two-part blog. Please read my comments below, and then read the entry below about the "Indy's Child" magazine, and how they have devastated my friend, Jan's family.

As you read the comments below, keep in mind that the author of the story in Indy's Child chose to end her article with this sentence:

"I was fortunate. My daughter was born May 12, and shows no signs of Down syndrome. That's reassuring."

~~~~~~~~~~~~~~~~
I was fortunate. My daughter was born March 23, 1997, with the light of a glorious full moon shining through the window – screaming and alive, and breathtakingly beautiful.

One look at her revealed what I already knew – that she had Trisomy 21 – Down syndrome. She was breathtaking – blessed with beautifully almond shaped eyes, a cute little button nose, and that characteristic space between her big toe and the next that proudly proclaimed to the world, “I have Down syndrome.”

I was fortunate. Despite all the predictions of many doctors, she was destined to survive those first days of her life, requiring almost immediate surgery to correct a birth defect not associated with Down syndrome.

I was fortunate. The medical community that predicted her death, and in fact, encouraged her death during my pregnancy, was able to save her life. Their technology and scientific knowledge, along with the Grace of God, allowed my baby to live.

I was fortunate. Not because her unrelated birth defect led me to prenatal testing that allowed me to know ahead of time that she would have Down syndrome, but because I was able to take that knowledge and learn what I needed to know and understand in order to love my child unconditionally.

I AM fortunate. I know that this parenting business we subscribe to comes with no guarantees. I know that no amount of prenatal testing will predict my child’s future –- because a single moment in time can change a world forever. There is no way to test for the more than 8,000 known genetic conditions that a child could be born with.

I AM fortunate. I understand that no prenatal test will tell me that my child will be a good person or a kind soul. No test will tell me her occupation, or destiny in life. I will not know how healthy or happy she will or will not be.

I AM fortunate. I have come to understand that even a prenatal test for Down syndrome will not give me these answers. A karaotype will not tell me my child’s personality or her abilities as she gets older. It will not tell me what she will look like, or the color of her eyes, or what her voice will sound like. It will not tell me what her favorite food will be, or what makes her laugh out loud, or when she would take her first step or say her first word or that she would love swimming and horses as much as she does. It will not tell me how sweet it feels to have her come and sit with me, and wrap her arms around my neck, and fill my heart with joy.

I AM fortunate. Because I understand that all that prenatal test told me was that my child would have more chromosomes than most.

I am Blessed. I chose to continue my pregnancy, armed with the knowledge that my child had Down syndrome, and ready to love her with my whole heart and soul. And that was so, so easy to do.

I am Blessed. Because my prenatal testing choice will never launch me into the world of “what if” and “I wonder” I will not mourn her projected birth date – instead, I will eat cake and ice cream and turn the music up really loud and DANCE.

I am Blessed. I will never wonder “what if” I had chosen to give birth to her. Would she be pretty or smart, or short or tall or funny or serious. I get to know.

I am Blessed. I don’t have to wonder if those milestones come or not. I get to watch them happen. I have come to learn that it doesn’t even matter all that much when or even if all of those milestones come along. Because my love for my child goes far beyond the expectations of achievement.

I am Blessed. I don’t have to see a child with Down syndrome in a store and ache for a baby who’s life I chose to end. Instead, I can giggle a little giggle, because I get to know. I get to know how it feels to have a child with Down syndrome, full of life, beautiful, cherished, and very, very wanted.

I am Blessed. I have learned that my child is my greatest teacher, and I am a very willing student.

"I was fortunate. My daughter was born March 23, 1997 and showed signs of Down syndrome. That's one of my greatest blessings."

Indy's Child Disgrace

This is a beautiful picture of 3 children playing in a water park. The three little ones on the cover have Down syndrome, although at first glance, I would have never noticed that. I see three kids on a fun water-filled day enjoying just being kids.

This picture was taken for "Indy's Child" magazine - by special request of the magazine to the Indianapolis Down Syndrome Foundation, these kids were the precious models for this picture.

What the magazine failed to tell any of the parents whose children appear on the cover of the magazine was that it would be their "Special Maternity Issue" in which prenatal testing would be discussed.

The magazine failed to tell the parents that there would be a very biased, very one-sided story by author Amy Cahill in which she discusses prenatal testing, and how devastating it was to suspect even for a moment during her pregnancy that her child might have Down syndrome, and then proudly proclaims at the end of the story how very fortunate she was because her child was born and showed no signs of Down syndrome...and how reassuring that is.

Imagine the pain my friend Jan ("Mauzy's Musings" in my blog list) and her husband are going through -- how violated they feel because a picture of their son was used in such a misrepresented way. Imagine that sick feeling in the pit of your stomach that even just one person might think you have agreed to allow your child's picture be used in a way that would say, "hey, you can avoid having a child like mine."

This is beyond my comprehension - I cannot imagine that this magazine is a PARENTING magazine with no more sensitivities or sensibilities than that.

Please share your story, and your displeasure, with this magazine:

editor@indyschild.com
Indy's Child Magazine
Attn: Tom Wynne, Editor
1901 Broad Ripple Ave.
Indianapolis, IN 46220