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

If I Could Only Wrap My Arms and Legs

...around childhood, I surely would.

I'm sure all of us who are parents have some little "guilty pleasure" that we indulge in with our kids--those little things that we do, or allow, for a little bit longer in childhood than is really needed--those things that keep our children close to our hearts and tucked safely near us even if its just for now.

Well, my confession would have to be that my children have rarely just gone straight to bed without me. For years, I would lay with Dakotah; at first reading to her, and then later, she would read to me. And I would stay until she fell asleep.

Even now, at almost 13, I still enjoy visiting with her just before she goes to sleep...its often our most intimate time of the day--when secrets are shared, and guards are let down. And I'm happy to say that she still welcomes me whenever I go for a visit.

For Paige who is 9, I have to admit that she has never gone to bed on her own--not once--to the great dismay of people who need to have an opinion about it, lol.

We just love, love, love that cuddle time at night, when she crawls into our arms, and drifts off to sleep until Wayne carries her off to her bed for the night. She's so sweet and calm, and looks right to us for a conversation. She never complains or fights bedtime, and its a system that works quite well for us.

Well...for the past two or three weeks, Paige has taken to getting her blanket and going to bed all by herself!! She just goes! Not a peep out of her, nothing.

I suppose (yes, I know)that its time that she does that...she is too long for me to even lift anymore...she's all arms and legs and everything gets all tangled up when she is in that 'deadweight' sleep zone.

But, it sure tugs at the heartstrings...to see her make that choice for independence. I guess its like when a baby decides to wean himself...sometimes Mom is just not ready, even though she was kind of hoping for it.

For those of us who are parents of kids with special needs, I think its even more intense--as we often fret and worry over milestones that take a while to show up. We play lots of "what if" and "when will this ever happen" games.

But, just like having a typical kid...as I sit at the computer tonight because I had a bit more free time, and empty arms tonight, my advice is don't rush it...

Cherish the now, and what is happening today. Even if you're frustrated because you can't get your little one off the bottle, or out of diapers, or off to sleep when you want, trust me---all too soon it will be over, and you'll be looking back at it with a little smile, and a bit of an ache in your heart that the days have gone by so fast.

It's The Most Wonderful Time.......Of The Year!!!

Like Kramer in the Seinfeld Episode with the Mackinaw Peaches that are only in season two weeks of the year -- I am in my glory right now.

My very favourite food in the entire world is in season - fresh, sweet strawberries, still warm from the summer sun are now ready!!

I was allergic to strawberries when I was very young, and I've never fully recovered from that traumatic time in my life - I have never really 'caught up' from all of the strawberries I should have been eating then!!

The strawberries that are fresh picked cannot be compared to anything you can get any other time of the year...you just can't ship them on a truck from California in February and capture that taste of sunshine.

I always say that strawberries are proof that God exists--so perfect in every way.
Paige and I grazed on strawberries all day long on Father's Day.

I have gone on fad diets and eaten nothing but fresh strawberries for two weeks at a time. Not the best choice of diets, but by far the yum-meeee-ist!

So, if I'm not posting very much in the next two weeks, just imagine Kramer as a short blonde with red strawberry stains all over her face and hands...that will be me!!!!

mmmmmmmmmmmmmmm..............

There's A Word For This!

A strange fate-like thing happened to us tonight!

Tonight, Dakotah and I walked to my friend, Julie's house. Julie lives just a few houses away, and we have been friends for a few years. Julie has a son named Tyler who is a little older than Paige, and a son named Connor who is a little younger than Paige.

Tyler has cerebral palsy, and Julie was the co-founder of the Special Families, Special Kids group with me a few years ago.

So, we're visiting, and playing with Tyler and Connor's new dog, Pepper, who is an 8-year-old Schnauzer who just joined the family last week.

Our dog, Oreo, died last May. She was 14 years old. We had her before we had kids. Oreo had a stroke one morning when she was home alone with me, and lost the use of her back legs. Poor thing was blind and deaf and didn't know where she was. So, we had to put her down.

At first, we said, "No more dogs!!!"

But, now we are softening to the idea a bit more. Wayne has his heart set on a Golden Retreiver. I like them too, except the shedding! But we've done a lot of research about the breed, and they make EXCELLENT family dogs, and would be wonderful with Paige.

Wayne's parents have a Shih-tzu, and he is definitely not the kind of dog our family needs. Paige is very nervous around him.

So, anyway, we are talking to Julie, telling her we'd like to get a Golden, and she tells us that someone she knows just gave one away. We are all like "awww...bummer."

We stay and visit for a while, and then come home.

As we round the corner to our house, we see this right in front of our house!!

Isn't that the strangest thing?!?!

So, of course, in comes the dog to see if it has tags on it. Paige LOVES it; isn't afraid, goes right over and loves it right up. The dog has some water, and we see it has a bandana on it.

We are pretty sure we know who's dog it, so after a bit of fawning, Dakotah and I go to see if we are right.

As we are walking the dog home, here comes a Mom and 3 kids walking down the street. They stop and look at us, but keeping going --its dark out, and we are a bit away from them.

I can tell they are looking, so I say, "Is this your dog?" As they are coming toward us, the kids are all saying, "Hi, Dakotah!" Dakotah says hi kind of hesitantly--she doesn't know who the kids are.

Then the mom leans over to the dog and says, "Dakotah!! Where have you been?!?!?"

The dog's name was Dakotah!!!!

Funny, huh?

~~~~~~~~~~~

So, now we are all googly-eyed over this sweet dog...and although I was committed to naming my next doggie "Ruby", I think I can sense a "Penny Lane" or "Fenway" in our near future...

Welcome Camille...

For all of my friends who read my blog, please go and see my friend Camille's newest blog. There you will hear of the adventures of Miss Emma, who is all of five years old, and ready to take on the world!

You'll often read about Emma in my blog, as she is one of Paige's best friends in the whole wide world, and was born 4 years and one day after Paige...I always call her the best birthday gift Paige ever got!

Emma is a happy, curious little girl that makes me laugh right out loud with her funny little stories. For a while, she named everything after her family...all of her colors had names like "Amy" "Carl" "Gaby" "Billy" -- it was the neatest thing, because she was very consistent in the labels she gave to everything.

Now, Emma counts to "Infinity and beyond" and recognizes many of the letters of the Alphabet.

Emma makes my heart sing--and I often scoop her up for a quick hug before she's off and running again.

I hope Camille will share all the funny stories she has about Emma with all of you--from when she turns grandpa's O2 down, to drinking out of the kitty's bowl, lol...who wouldn't love this kid?!?!

Camille is one of those treasures you rarely meet in life...no matter what is going on in her life, she keeps wonderful perspective on the important things, and has a heart a mile wide.

She is someone I often look to for great wisdom, and can totally be "me" with...we have that kind of relationship where we know we could always run to one another if we needed to. I know she will always love and watch over Paige for me, and I hope she knows I would do the same for Emma.

She is that kind of friend that can show up at your door while you are still in pj's at 2 in the afternoon, and you don't worry that she notices...you are totally comfortable inviting her in for coffee.

Her sister is a SLP, who has taken Paige under her wing, and given me such great hope of really conquering this language barrier that Paige has.

I'm so blessed in so many ways in my life...and here you will find one of the greatest of my blessings: http://simplycamille.blogspot.com/

Please leave her a note!

Walk On, Bobby!

Paige started therapeutic horseback riding again!

This year, she has a new horse that looks just like this. His name is Bobby, and he is so sweet and gentle, and very pretty too!

Paige fell in love with horses the first moment she saw one, and gets so excited whenever we get anywhere near the farm where she rides.

Paige has been riding for 4 years now. When she first started riding, she could barely sit up on the horse, even with support, and by the time she was done her first 6-week session, she was laying down backwards on it

By the end of that summer, she was sitting proudly by herself and getting quite independent. Its a wonderful therapy that allows her to use many muscles in her body that she not normally be able to use.

Paige has severe hip dysplasia, that has affected her hips, her knees, and her ankles. She is not very sturdy on her own legs, but when she is on Bobby--oh my!! She is Queen of the World!

Sometime in the near future, Paige will have to have surgery to correct her hip problems. She will have to be in a full body cast for 12 weeks, and undergo two major surgeries less than 10 days apart.

Because her problems are quite involved, our surgeon has told us that there is a 75% chance of failure from this surgery, and if it does not work, Paige will lose her ability to walk.

Needless to say, with those odds, we are proceeding with extreme caution. She didn't walk until she was almost 6 in the first place, and we are going to do everything we can to preserve that ability for as long as we can now.

Her surgeon is taking her file to "case conference" throughout the summer...where he will discuss her case with many other doctors in his field to see if they have some suggestions that will increase the odds of success for Paige.

One of the incentives for Paige to get better will be her horse!! We know she will work hard to do what she needs to do if it means she can ride Bobby again.

And, until then, we will make lots of visits (with carrots and apples in tow) to visit our newest 4-legged friend.

Observations of a Different World

As I've come to learn with Miss Paige, sometimes I can't always predict what's going to be happening in our lives, and how our lives will evolve. Even more important than that, I've come to learn that its o.k. that life is full of forks in the road and changes to our path as we go along.

If you had asked me a few years ago about inclusion in school, I would have readily jumped up and stated that every child should be fully included in their regular classrooms with their same-aged peers, regardless of their intellectual or physical abilities.

I'll even go so far as to say I could have probably quoted you the specific laws which protect our children, and allow them to be in regular classrooms.

And I still maintain that belief. The reality is that it is my hope for Paige that she does learn to function in a "normal" world. I fully believe that people with Down syndrome have gained leaps and bounds in our society because of the efforts of parents who have come before me and absolutely insisted on integrating their children into regular classrooms.

Further, I believe that it is not only of great benefit to Paige to know and learn from "typical" peers, but it is also of great benefit to her peers to know and learn from her.

I think it is a fantastic lesson for children to learn a bit of humility; to learn that its not always about the fastest, smartest, best all the time--sometimes its about letting someone have a turn no matter how long it takes, or offering a helping hand, or a kind word to another human being.

Sometimes, its in our "un"equalness (for lack of a better word), that we discover the real truth -- just how equal we all really are.

But...I have strayed on my total integration path this year.

We were offered the opportunity for Paige to spend half of her day with her "typical" Grade 2 peers, and half of her day with a "Living and Learning" class where she would be with 5 other high needs children. This class concentrates more on the lessons of daily living--self-care, such as dressing themselves, cooking, talking about good food choices, and adds things such as their various therapies--Occupational Therapy, Speech Therapy, PhysioTherapy, etc. They also work hard at interacting with one another, and learning skills such as sharing and compassion for each other.

Of course, this opportunity did not come without hesitation from me. How much would Paige, who herself is severely speech delayed, gain in a class room where only 2 of the 6 children were conversational? How much learning could be done for children who's needs were so vast and varied?

Each child has a full-time aide in addition to the classroom teacher. All of the aides work wonderfully together, and have great relationships with one another, and with all of the children in the classroom. And the classroom teacher is just phenomenal--she truly loves all of the children in her classroom, and works hard to help them in every way she can.

One of the activities that the kids from L & L do is to go to a therapeutic swim class every other week. It is amazing to see Marc, who was absolutely terrified of the water at first, be so excited and want to jump right in now. And three of the kids, including Paige, are now swimming independently.

All of these positive things that Paige is offered is one of the reasons I know we made the right choice for her.

But, its not the big reason.

The big reason can only be explained when I tell you about last Wednesday. Last Wednesday, I arrived to pick the kids up for swimming (I take some of them in my van).

As usual, Marc greeted me at the door with a HUGE grin, "Paige's Mom, Paige's Mom, are we going swimming?" Yes, Marc, today we are going swimming!!

And as I showed him how to fingerspell his name, like I do every time I go to the classroom, he laughed a big belly laugh, like he so often does.

As I'm standing waiting for the kids to get ready, I see Paige and Brooke in the smaller play room of the classroom; Paige is taking Brooke toys to play with, and although neither of them speak, they are interacting so well.

Damien, who's spoken language consists largely of repeating what you've said to him back to you again, brings me over a book where he has written "I like to watch TV." I read it to him, and he says, "I like to watch TV, I like to watch TV" as he's reading it back to me, he asks for his picture to be taken. Damien will do just about anything anyone asks of him if they snap a picture of him doing it.

We go into the hall, and the kindergarten class from across the hallway is in the corridor. Paige immediately scans the crowd for Taylor, one of the little girls she has made friends with this year, and escapes for a quick hug. Taylor, although 4 years younger than Paige, is a bit taller than her, and jabbers along to Paige like she's just another kid in the hallway...she doesn't seem to notice or even care that Paige doesn't talk back.

As we are leaving to go to my van, Paige is with me and her aide, and Brooke is behind us. Brooke has a lot of problems with her gait, and is not very steady on her feet. Her aide, and the classroom teacher are holding her hands. Paige goes over to Brooke, and gives her a big hug. Brooke lights up with a big smile and gets all excited.

We start going down the stairs, and Paige is holding my hand. She's not so steady on her feet either. At every step, she stops and checks to see if Brooke is still coming.

When we get to the bottom of the stairs, Paige reaches back and takes Brooke's hand to help her along.

When we get to the pool, Paige's friend Emma is already there. Emma greets Paige with a big, deep "PAAAAAAAAAAAAYYYY" in that funny little voice that is so sweet coming from her tiny body.

Paige and her give each other a big hug, and Paige says, "awwwwwww" to her.
Then, Emma goes over to the little table that is in the play area, and takes a chair to sit in. But, she doesn't forget that "Pay" is there with her. She gets her a chair too. Paige goes to sit down, and gets a book to look at, but she, too, remembers Emma, and takes her a book as well.

The two of them sit at the table and babble in a language that I'm convinced makes perfect sense to them--they are lost in their world of just being best friends happy to see one another.

There are many more examples that I observed that day among all of the children. Their communication skills are absolutely amazing--to the point of them even realizing which kids like hugs, and which ones don't.

Its a wonderful world to be a part of, even for an afternoon. What a blissful escape from the "reality" that so many of us crave for our kids with DS. No one notices ears that are too big, or glasses that don't stay pushed up on the nose, or hair that isn't quite perfect. No one cares the brand name of your shoes, but they sure are interested if they are shiny and red, or light up when you dance with them.

And when a social grace has slipped away from one of them, they are wonderfully forgiving of one another. Sometimes its not easy for one of the kids to remember to wait their turn or not to throw something that shouldn't be thrown; but the mistake is quickly forgiven and forgotten.

And in this world, because nobody is perfect, it seems as if everyone is.

Paige still does well in her regular classroom too--although, as we expected, the differences do get greater as she gets older. But the differences are mostly academic.

Socially, Paige remains very included in her school. She waves to everyone, and everyone in the hallway says hello to her. At recess, there's always a whole gaggle of kids who come along and take Paige's hand and include her in a game of London Bridge, or take her to the swingset and fight over who gets to push her.

Her classmates have never known a classroom without Paige in it, and do not see it as anything other than a part of their world too--exactly as I had hoped for.

The amazing thing is, Paige gets to be a part of two worlds..."Italy" and "Holland" and I get to go along for the ride.

I can't wait for the next fork in the road, to see where that tiny hand takes me.

Leave Me A Word!

We got Paige a tiny little i.d. bracelet for her First Communion. It has a little cross etched out of it on one side.

We are having her name engraved on the front (of course!), but we're trying to think of something to put on the back of it.

It has to be something short, because its not too big, so just one word or two small ones, lol.

I wanted to put "Dance!" on it...to remind her to always embrace life, but Wayne thinks everyone will just think it means "dance" like its her favourite hobby, as in soccer, baseball, etc. (I think the exclamation point will make all the difference!)

I thought of "Blessed" "Cherished" "Loved"

I can't decide!!

I know that not too many people will actually ever see it, lol, but I want it to be just the right word!

So, if you're reading this blog today, leave me a one word comment!

Saving The Best For Last

I saved these last two pictures of Paige from her First Communion to post today.

These pictures are not retouched--there are no filters on the camera; they are just beautiful pictures.

Paige is in the arms of her cousin, my nephew, Craig.

Craig lives 250 miles away in NH, and before that, lived in Washington, DC, so we haven't seen a lot of him over the past few years.

Craig is 28 years old, and last September, married a very sweet, smart, beautiful young lady named Allison. They had a gorgeous wedding, surrounded by many friends and family.

This weekend, Craig and Paige were nearly inseparable. They played together, and cuddled together constantly.

Craig was the first grandchild born to our family; I was 14 when he was born. I adored him so much as a young child, and still adore him to this day.

From a very early age, Craig has had an amazingly beautiful soul. He's very gentle and sensitive and sweet. I've never heard him have a bad word for anyone. He's just a very GOOD person, who would do anything for you.

He's also extremely intelligent; he was reading at 3, and when asked how he learned to read, he said, "I just knew", as if he were born with that ability.

Craig is very analytical and philosophical...he has well thought out opinions, and is a joy to just and talk with. In fact, the Friday night before his wedding, he and I sat up until 5:15 a.m. talking.

His wife, Allison, is a perfect match for him. She's very beautiful and smart, with bright sparkling eyes that light up when he comes into the room.

They bring out the best in one another, and really are a match made in Heaven.

This weekend, Craig announced that he is GOING TO BE A DADDY FOR THE VERY FIRST TIME!!!!!!!!!!!!

Needless to say, I was jumping for joy!!! I was happy, happy, happy!!! And so very excited!

What a lucky baby it will be...to be so loved and so welcomed and so cherished before he or she even arrives.

Craig will make an amazing father--he wears his heart on his sleeve, and the birth of his child will make that heart grow even bigger.

Congratulations, Craig-O...I'm so very proud of the man you have become, and I know you have a wonderful life ahead of you...

Paige's First Communion

Today's post is going to be a "picture tells a thousand words" theme. I want to share the pictures of Paige's First Communion.

It was a glorious day--sunny and bright and beautiful. Paige looked like an angel in her pretty dress, and did so well at Mass. She took her First Communion so well, and we were all so proud of her.

The details of her dress show up so pretty in these pictures.

Almost time to go in!

Wayne & his parents with Paige

All done at Mass! Let's go play!

They say communication is 5% words and 95% body language. This is Paige with my sister, Kathy. No need for words here..

So very pretty!

I love my big sister!!

Practicing my "prayer pose" (in case the Big Guy is watching ;) )

It was so cute as we were leaving the restaurant where we had lunch, Paige was walking out, and there was a little girl there about 3 or 4 years old. As Paige went to walk by her, the little girl's eyes got HUGE and she said in this breathless whisper, "Look, there's a real princess here."

It was too adorable!

And, of course, Paige had to stop and give the "royal wave" to everyone in the entire restaurant on the way out, lol.

Sweet Moments of Childhood

Tonight was one of those moments you don't want to forget, not for its great importance, but for its simplicity and sweetness.

As I was giving Paige her bath, I sat on the edge of the tub and put my feet in the water with her. She was playing with bathtub "fingerpaints" that smelled like strawberries.

So, I squeezed some paint on her arms, and her tummy. She was rubbing it and playing with it. Then I put some on my own legs, and she began to trace little shapes and circles in the paint on my leg. She was so delicate and gentle, and was jabbering in that tiny little voice of hers as she did it.

She'd play in it; wash it off, put some more on, and just smile and "talk" with me.

And then she did the cutest thing - she lifted one of her legs out of the water and put it on the edge of the tub, and "painted" her legs too. It was so cute to see her so intent in what she was doing, and just so very content; not a care in the world.

It was one of those moments of parenthood that you cherish, and want to freeze in time.

I always feel so physically connected to Paige. When she falls asleep in my arms, our breathing is in sync with one another--we take the exact same breaths, in and out, as if we are still one.

I loved our Mommy and Paige time tonight; after her bath we rubbed lotion on her legs and feet, and arms, and dressed her all up in her little penguin pj's. She sat still for 20 minutes while I brushed her hair until it was almost dry.

And then came and just sat on my lap with a big contented smile on her face until she fell asleep.

Heaven, I tell you. Pure Heaven.

Passing The Torch

Dakotah had her first "date" on Friday night.

Well, let me clarify...it was the first time Dakotah has gone anywhere with members of the opposite sex outside of school, lol.

I had the honor of escorting her and her friends to the movies on Friday night. Somehow, the ratio ended up at 3 boys, 2 girls.

It was a group date, the only kind Dakotah would be allowed to go on at this point. And, it was supposed to be a group of friends going.

But...among the boys chosen to attend with her was "J"...the love of her life for the last 2 or 3 years. J and Dakotah have officially "gone out" together before...although they have never actually gone anywhere. But, they "dumped" each other sometime last summer, and after a few little spats back and forth, have remained really good friends.

J is very intimidated by me...and to be honest, I kind of like it that way!! I have no idea why he is so nervous around me, except that he is sweet on my daughter. I spend a lot of time at school, and all of the kids know me...we're that house where all the kids congregate, and I'm the "cool" mom because I'm often the taxi, or provider of food and snacks.

But J, well...he's keeping his eye on me. And me him.

I've spent a lot of time thinking about the whole mother/daughter relationship thing as my daughter prepares to barrel through her teen years, full speed ahead.

And I think I've figured a portion of it out. The reason its often so heady between a Mom and her daughter is that, not only is it a time when she is growing up, but its a time when I realize I am growing up too.

What I wish I could have told the kids the other night is that I was silently giggling to myself that I was considered the adult..."The Mom."

It seems like such a short time ago I was starting this whole dating thing, and I remember my first movie like it was yesterday. I remember taking hours to get ready for a date, fussing over what to wear, hoping, hoping, hoping that the boy I liked liked me too.

I don't know where the years went between that first date and Friday night. Honestly, they went by so quickly that I felt 13 all over again as I listened to them giggle, giggle, giggle, in the van, and talk about silly things that kids talk about.

Dakotah probably doesn't realize it, but I was capturing the memories of the night for her, because she, too, will speed through the years, and this magical "first" will be far behind her before she even realizes it.

It was so cute how the boys still sat in the back, and the girls in the middle...how they aren't quite ready to pair up yet.

And it was awesome for me, as a Mom, to have a few moments of quiet privacy with Dakotah after everyone had been dropped off...where she told me all the details of the night that made her swoon.

When "N" sat beside Dakotah at the movie, J picked him up and moved him aside, so he could sit by Dakotah. And sometime during the movie, J mustered up enough courage to tentatively reach out for Dakotah's hand to hold.

I can so vividly remember when that first boy reached for my hand for the first time...my heart felt like it was going to beat right out of my chest.

I imagine Dakotah felt the same way, as she floated on cloud 9 for the whole weekend.

I'm very lucky she is so open with me about her life. I think if I can keep that going, we will surely make it through the next years relatively unscathed.

And now that I've figured out that I have to let go of the fact that I'm not a teenager anymore, I can embrace my "momminess" and cheer her through these milestones of her life, even while a small part of me wistfully wishes to be transported back there myself.

J and Dakotah are still not "going out," which is way more than fine by me. But, I'm hoping that they are learning to build a really good friendship that will take them through the next few years.

Just remember, I'm watching you, Mister.

Its Official! Paige is Confirmed!

Paige had her Confirmation at Church last night...her First Communion will be in 2 weeks. This is her waiting patiently for her Godparents to arrive.

It was so emotional for me to see her join her class, as well as about 75 other students who were confirmed last night. She had to sit separately from us, with her Godparents, and she did so well through the rather long ceremony.

Its been a long journey, and it was a triumph for us to present a happy, healthy little girl to the Bishop for his blessings, as her baptism was a scary, hurried event, given just before her first surgery.

Boy...how far she's come...what an amazing little girl.

As the Bishop delivered his homily, he spoke to the children about their baptisms, and how it was a time in their lives that everything had to be done for them...that their parents chose to baptize them, and bring them to the Church.

But, now, they were growing up, and able to make the choice for themselves. He gave them lots of examples of how they are independent of their parents now.

Of course, it was with a bit of melancholy that I acknowledged to myself that Paige still isn't able to do many of those things he spoke about...making herself a bowl of cereal, or reading a book, or riding a bike.

But, as he continued to talk, he explained to them that they were being called to God last night for a very important reason. That they were now God's "helpers" and it was their job to help make the world a better place.

He spoke to them about being peacemakers and peacekeepers, and about spreading love to others. He told them that they had to help God teach the world how to be good, and kind and caring.

He said that this would be the most important job they ever had in their lives, no matter what their chosen career was.

As you can imagine, my melancholy quickly disappeared, as I realized that Paige would take her "job" from God as seriously, if not more seriously than the other children in attendance.

In some ways, she will be very lucky not to be burdened by many of the outside stresses of daily living that some of these children will be as they grow.

And, in some ways, her job began a very long time ago; the very first time she opened a heart to Down syndrome, or made someone smile in a grocery store as she laughed away and exclaimed "Hi! Hi! Hi!" over and over until they took time from their busy day and said hello back.

When she kicked off the Children's Telethon, and her sweet face appeared in the bubble of the little girl blowing bubbles...Paige's face appeared in the "hope" bubble.

All the times I've taken her to meet countless new parents of babies with Down syndrome, and she walked up to the new baby, put her hand gently on his or her head, and said, "awwwwwwww, and signed "baby"...and the times when she quickly turned with a hug for the Mom or Dad who needed it too.

And, luckily for me, I had the chance to debate differences yesterday, and was given some very thought provoking reasons to ponder the acceptance of Paige's differences, and to distinguish between coming to terms with differences, accepting them, and rejoicing them.

There are many paths our lives take, and many journeys we have to walk on to find our way...

Thankfully, God has called upon one of his little Helpers to show me the way.

Compliment Three People A Day

I have a large picture that hangs in my bathroom that's titled "Life's Little Instructions."

On it, there are about 40 or 50 little "pointers" for enjoying life. One of the pointers is to compliment three people a day. That seems kind of hokie at first, as if I'm offering a compliment to someone just to get my "3 a day" in.

But, haven't you ever been out shopping, or washing your car, or at the doctor's office, and someone says something to you, just in passing, and it significantly changes your day or, sometimes even your life?

I read in Nicole's Blog about "hip boy" whom she met on a last minute Target-run to replace melted Easter Bunnies. And the check-out boy who handed Mikey a grocery bag to help his Mom, on a day when Monica was wondering if the world would ever see her son as "just a kid."

So, this blog entry is to acknowledge some memorable moments in time for me...some good, so...not so good.I haven't forgotten:

--The woman in the grocery store who handed me $10, and took my hand in hers, looked at Paige, and said, "I'm so sorry; she would have been so pretty."

--The man with T21 who played with the Bouncing Tigger toy in December 1996. You changed my life forever that day.

--The young man with T21 who came up to me and hugged my big baby belly when I was pregnant with Paige, and screamed "BAAAAAAAAAABBBBEEEEEEEE"

--The old, old woman who exclaimed to her husband, "Oh, look, honey, at the little retarded girl...isn't she just precious?" and then fawned all over her for 20 minutes. It reminded me thatsometimes people aren't just trying to be cruel with outdated words.

--Dakotah kissing my belly the night I got Paige's diagnosis, saying, "Good-night, babydoll", just like she did every other night of my pregnancy. She got it before I did.

--Wayne telling my mother he'd never take his wedding ring off on our wedding day. And he hasn't.

--The gentleman who stopped me at the zoo, and said, "she looks just like you...you are so blessed."

--The woman who came back out of Dr. Pothos' office two years ago, in tears, and gave me a big hug, and thanked me...she had a tiny little one with DS, and I said, "He's so beautiful!! It makes me want a baby all over again." She thanked me for seeing her son, and seeing beauty, and something "desirable." I won't forget how good she made me feel.

--The guy at Subway last year who said, "I'll have what she's having" after I had ordered my sub. I was having a terrible day, and I really needed to feel worthy of being flirted with, and looked at as someone other than a wife and mom.

--The girl at the mall who stopped me in mid-sentence, and said, "You have the most beautiful eyes." -

-The countless people, too numerous to mention, who have stopped to say hello to Paige, or who have waved back at her for the 20th time when she is waving to them. Those smiles and hellos have meant the world to us.

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

So, just think about it the next time you have an exchange with a stranger somewhere. You might make their day. Smile and say hello to an elderly person. Tell the cashier to have a nice day. Let someone in line for gas go ahead of you.

Oh, and as my bathroom sign says:Never, ever refuse homemade brownies.