You've read it a 1000 times...

Once more for all of you with heavy hearts and heavy burdens today -- this poem has always made me feel peaceful.

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence.

As far as possible without surrender be on good terms with all persons.

Speak your truth quietly and clearly, and listen to others, even the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may become vain and bitter;

for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;

it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery.

But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.

Be yourself.

Especially, do not feign affection.

Neither be cynical about love - for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune.

But do not distress yourself with dark imaginings.

Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams, it is still a beautiful world.

Be cheerful.

Strive to be happy.

Such A Little Mother Hen

Paige has become quite the little mother hen of her Living and Learning class. Her EA reports that she 'tends' to the other children in her classroom all day long. If she finds a random lunchbox, she must deliver it to its owner; if they are having snack everyone must have something in front of them before they are allowed to eat.

When Brooke has a seizure, Paige insists on being the one that sits beside her, rubbing her back and cooing at her until its over.

But...today she may have overstepped her boundaries, lol.

When Damien was put in time out for some not so nice behaviour, Paige kept going over to get him, and pulling him away from his spot, proclaiming "All done"

After a few attempts at pulling Paige away, she finally relented only if she could stand beside him and hug him during his time of need, lol.

What a kid...

There's Nothing Worse Than A Warm Pickle

It was 1975 - my sister had just gotten married, and we were making our first trip to Prince Edward Island, to stay at our summer cottage that my parents had just purchased. I was 11 years old.

About halfway there, our car broke down. It needed a transmission or something else very expensive. We were stuck in a small town while waiting for a mechanic to go and pick up the parts we needed to keep going.

We had missed our ferry to the Island; the only way to get there. We were going to have to stay in a Hotel for the night, and obviously, my parents had to incur an expense they didn't expect. It was a time when few had credit cards, and some 500 miles away from home, they probably just wrote a check for the damages.

As we were waiting, we were eating dinner at McDonald's - again something that wasn't very common in my life in 1976. My dad had a cheeseburger or something like that, and he took a bite of it, and pulls a pickle out of his mouth. He was like, "YUCK!!! There's nothing worse than a warm pickle."

Right at that moment, he and I, sharing the same slightly sarcastic and ironic personality, burst into laughter. What a silly statement--a bazillion things going wrong -- of course, something has to be worse than a warm pickle!

So, that became a funny phrase between the two of us when things went wrong over the years. And the strange thing was, the worse things were, the funnier the line got to us. Many times in my life when I've felt badly or saddened by something, I've heard my father's voice reminding me that, at least, it wasn't a warm pickle.

I've had lots of warm pickle moments this week. I was deeply moved by the memorials of 9-11 -- a time when I realize that I am not living in my own country and feeling all of those feelings of senselessness all over again.

And on Wednesday, with the shootings in Montreal at Dawson College, I was again reminded of how we just never know in this world...

A post from another blogger this week who is facing a very challenging time with her own daughter has touched me deeply. I feel her words, and wish that I could pack up a hug and send it along to her. I feel the heaviness in her post, as she struggles with the reality that she has no choice but to pick herself up by her bootstraps and plod through the mud.

I've felt very protective of my children this week--more so than usual. I admit that my greatest weakness as a mother is over protectiveness. I fuss over them and fret for them, and want to jump in at every chance to take care of them. I was, and still am one of "those moms" - conscious of what they eat, what they wear, of their friends, etc.

My worry is deeper for Dakotah than it is for Paige. That has not always been the case. Of course when Paige was young and often very ill, she was the one I fretted over. But always there has been that nag that I'm going to let my guard down with Dakotah and get blind-sided by something I cannot control--an illness, an accident, etc.

I can still protect Paige better, watch over her. Dakotah is at the point in her life where I must begin to give her freedom, and let her learn the lessons of life.

Its hard to let her "hang out" with friends at the park, just two blocks from here, when I still breathe a sigh of relief every single day when she gets off the school bus.

Its hard to let her spend hours chatting with school friends on the internet, although I've put all the protections in place...she knows if she erases histories, that she has lost her privileges until her 16th birthday. I don't even read them, but she needs to understand that they must remain. Her usage is monitored, she has been lectured over and over again about the dangers of the internet.

Yet, every time I watch an episode of Dateline with the internet predators, I feel my heart race -- for every creep they catch, there are probably hundreds who are successful in their quest for young teens on the net.

She tells me every detail of her day, and for that, I should be grateful. But I over-analyze it, and want to fix whatever I feel needs fixing, even when she is fine.

She does have to grow up in a way that is much different than the way I did. That's not to say that there weren't things in my teen years that my parents weren't way better off not knowing...

But, this week, they had "practice lockdowns" at school...they have been given very real scenarios of what could happen in her high school. Periodically, the drug-dogs are brought in for random locker checks - a procedure that we have to agree to before our children are allowed to enroll at the Catholic High School where she goes.

I have had to have very frank conversations with her, because I know that she is hearing information from other kids at school. Her group of girlfriends are popular and beautiful and oogled at -- a double-edged sword to say the least. I want her to be well-liked -- just not so much so, lol.

In the end, I can only give her tools and roots -- she must put them to use and learn to fly on her own.

And all of my life lessons and examples are basically left to a prayer, a whisper in the night that she will come through it all gloriously and beautifully -- a set of crossed fingers that the worse that will happen to her is that warm pickle in a cheap cheeseburger at McDonalds.

9/11

Today, millions of people will look back to September 11, 2001. There will be many moving tributes, and memorials, and for those who lost loved ones that day, I imagine it will be a milestone that they will prefer to have behind them.

Like everyone else, I can recall with exact details what I was doing when I learned the news. Paige had OT that day, and my mother, and then my mother-in-law called as the towers went down. I was scheduled to give a lecture at the University of Ottawa that afternoon to some medical students about Down syndrome.

Our OT and I sat and watched in disbelief as the events unfolded. Like so many families, we quickly learned that the Pentagon had also been hit, and my nephew was nearby, unable to get out on a cell phone, and unable to get home as all public transportation had stopped. It would be hours before we knew that he was safe.

My friend Kate who works in Manhattan was among the thousands of people who walked home, covered in soot and dirt and dust. Ironically, her cellphone did not work in NYC, but she was able to call here, in Canada, and I was able to call her family in the city and let them know she was o.k.

I'm sure everyone is full of many thoughts about the events of that day. It is still with disbelief that I know that the men who chose to drive these planes did so thinking they were heroes, that Allah wanted them to do something so horrific. It is hard not to hate the people who did this, but I believe they had been led to belief they were doing a good thing.

And with crazy propaganda in the Middle East, I'm sure many people there believe that our soliders are doing the same thing now - killing for their God.

Perhaps its just hard to wrap my brain around such abject hatred of someone because of their nationality, their colour, etc. Its hard to understand that anyone could be so brainwashed to not be able to see the forest for the trees - that this was a cowardice, malicious act against innocent people.

Everyone's lives changed that day -- our children will not remember a world prior to 9/11 - as we live in a "before and after" mode of that day. Travel is much more complicated, and I sometimes have a tiny little nag inside when I'm at a concert or a baseball game, or any event with large amounts of people.

In order to still enjoy our freedom, we must live with that nag but still find a way to live. There is a fine line between safety and paranoia sometimes, and if we allow ourselves to fall on the wrong side of it, the terrorists are still winning at their game.

I hope that today doesn't become another political debate day -- where we argue the rights and wrongs of their actions, and ours, where we struggle with war and its affects.

Let today be their day -- those who lost so very much.

Today, I pray for ALL the families who were touched by this tragedy. For those who are still deep in their grief who have had to face personal and financial loss; for those who cannot find an answer to "why"; for those who now must raise a family as a single parent; for those children who lost a mom or a dad, for the moms and dads that lost a son or a daughter.

I honour all of these families, and stand in awe of those who have persevered -- who have been able to heal to the point of realizing that they must continue living, for themselves and for their loved ones. For those hearts that grew much larger with grief and unimaginable pain, who have found a way to begin to fill that gap with joy and happiness again. For those families who have learned to begin to love and trust and laugh again -- for the children who didn't deserve to lose a mom or a dad -- that their families have found a way to bring light back to them.

I truly believe that our life is set out before us in order for us to learn crucial life lessons along the way. I find great personal peace in trying to look deep inside of myself to find those lessons -- both good and bad, as I constantly learn from my life.

But for the heroes of 9/11, the ones who survived, and the ones who didn't, I cannot begin to hold a candle to their strength and courage.

There's Something About Brian

There's a man in our small town named Brian.

Brian does not have Down syndrome, but he does have some developmental delays. He is a bit older, and all that I've ever heard that he has for a diagnosis is that he is "simple" - a term that was used when people his age were born and did not develop as their peers did.

Anyone who lives here knows Brian. He lives in an assisted living facility, and he is often see walking down our Main Street. His familiar sway as he walks makes him easy to recognize.

He has a daily routine, and stops to visit many businesses every day. He knows many people by name, and seems to remember them by some unique fact he knows about them.

I've known him for 15 years - introduced to him by Wayne. Every time I've met him, for 15 years, he talks about my blue car -- a 1989 Dodge Daytona that has long since been taken to a junk pile, I imagine. He always says, "you still got that blue car? That's a nice car. Yeah, I loved that car."

With Wayne, he always talks about his favourite rock group, AC/DC, that he calls "DC/DC"

Brian probably never went to school, and certainly does not read or write. He holds a job at our local newspaper putting inserts in the papers once a week, and also LOVES his honorary traffic cop job. He frequently wears his orange vest with the flourescent yellow X on the back in case he needs to spring into duty at any time.

When Dakotah was perhaps 2 or 3, we were walking by Wayne's parents house one day, and Brian was visiting outside with Wayne's father. When Dakotah asked who it was, Wayne's father said, "This is Brian, he's my boss."

So, its always been a cute little story when we are driving and we see him walking along, "Oh, look -- there's Pepere's boss!"

Tonight, I am taking Dakotah to a friend's house and a van goes by us. She looks at the driver and says, "He looks just like Pepere's boss." Then she starts jabbering about Brian, and says to me, "Wow, he must be pretty old -- Pepere is 74, and he was his boss. He looks pretty good for being that old."

I look at Dakotah for a moment, and say, "You know that Brian isn't really Pepere's boss, don't you?" She was stunned!! I explain to her about Brian -- that he's got some developmental delays, tell her where he lives, etc., and she still doesn't understand...

All of the years of her life, even before Paige was born, Dakotah has had brief encounters with Brian. She recognizes his funny little waddle as he walks, and has heard him tell us the same three stories over and over again, sometimes more than once in one sitting.

She must see that he talks differently, walks different, acts differently than most adults she knows.

Yet, it has never occured to her that he was anything but a regular ol' guy who was once her grandfather's boss. He has never stood out to her in any negative way at all. Her mind could not comprehend why he couldn't be Pepere's boss.

She talked about it all night; she was fascinated by the story and how it came to be with a fun little story told to her by her grandfather ten years ago. She certainly cannot wrap her brain around the idea that even knowing a bit more about Brian, that there is some reason he couldn't have been Pepere's boss.

There's got to be something very special about a person like Dakotah, who has learned a lesson about not setting limitations for people and about not judging them from how they look.

I'm not sure these lessons have come from Wayne and me. I'm not convinced you can teach this kind of deep compassion and appreciation for all human beings.

I think these things must exist in our spirit, and some of us simply chose to exorcise them.

I learned a beautiful lesson about my daughter tonight, from a two minute impromptu conversation about a man driving a van that looked like someone she knew.

Its no wonder she adores her little sister so much. Its no wonder she never loses patience with her. Its no wonder that when she is out in public with her, she wants to be the one to hold her hand or show her something neat in a store. Its no wonder she will sit and talk to her for hours, even though Paige cannot talk back. Its no wonder that she is so, so proud of her and that she wants all of her friends to meet Paige.

She sees her sister's soul. And when one looks at another's soul, no limitations are found.

Thank you, Baby Doe

On April 9, 1982, a baby was born in Bloomington, Indiana. This baby lived only 13 days, but has significantly changed the lives of all of our children who are born with Down syndrome and medical complications.

Here is an article about "Baby Doe"

On April 9, 1982, a woman in a Bloomington, Indiana hospital gave birth to a son who was quickly diagnosed with Down syndrome, a chromosomal abnormality that produces mental retardation, and with esophageal atresia, the separation of the esophagus from the stomach, which rendered the newborn unable to absorb food.

The obstetrician who delivered the baby told the parents that their child would have only a 50 percent chance to survive surgery for his atresia of the esophagus, and that even if surgery were successful, their child would remain severely retarded and would face a lifetime of medical treatment, disability, and dependency.

He advised the parents to withhold treatment and let their child die of his birth defect. However, two other doctors, a pediatrician at the hospital and the family's physician, disagreed with the obstetrician's assessment of the newborn's prospects and called for immediate surgery.

Nevertheless, the parents decided that they did not want the baby treated. The hospital's attorney as well as outside attorneys, one of them representing couples prepared to adopt the baby, went to court to have him declared a neglected child under Indiana's Child in Need of Services statute and to have the court order medical treatment.

Indiana courts ruled that there was no violation of the statute, and that the parents, confronted with contradictory medical opinions, had the right to decide the fate of their child, soon named Baby Doe by the press. One of the attorneys appealed the case to U.S. Supreme Court Justice John Paul Stevens, but before the Justice could hear the case, Baby Doe died of dehydration and pneumonia on April 15."

~~~~~~~~~

Hearing of this case, C. Everett Koop stepped in, and addressed the argument of quality of care for children with Down syndrome, stating, "the degree of mental retardation from Down syndrome was impossible to predict, and that it can range from mild to severe. Moreover, the quality of life enjoyed by a child with Down syndrome was greatly affected by the emotional resources of his family, by the level of community support, and by the availability of medical and education services."

Saying, "we ought to do things to give a person all the life to which he or she is entitled" he argued that children with birth defects and disabilities deserved fair and equal medical treatment, and to deny such treatment would be considered as greivous as denying it to an otherwise "normal" child.

In October of 1984, a law was put into place that made it illegal to deny fluids, nutrition, and medically indicated treatment for infants with birth defects, and mandatory for hospitals to report such cases, whether parent or doctor chosen, as neglectful.

~~~~~~~~~

This law has probably saved the lives of countless children since 1984.

For me, personally, it really hits home, as Paige was born with Down syndrome and esophageal atresia. Our surgeon, and our neonatologists didn't for a moment consider whether surgery would be "worth it" because she had Down syndrome.

But, we've still got a long way to go. I wonder if "Baby Doe's" parents would have thought differently had a doctor not immediately told them that their child would be severely handicapped? Would they have taken the risk if they were told that there was no way to predict how his development would emerge if given the chance?

If the hospital had a standard policy of allowing parents of children with Down syndrome to contact them, and tell them what life with a child with Down syndrome was really like, would they have felt more hopeful? Would they have seen this child for so much more than his karaotype?

Yet, in 2006, more than 20 years after this case, obstetricians are still telling women that their child will be severely retarded when an amnio detects Down syndrome -- women are still being sucked into to the belief that it is the only right, just thing to do to abort their unborn child with T21.

Even in today's world, there are people who can justify the termination of these children by thinking they did what was best for their child. They convince themselves that their child "might have been" born with some horrific birth defect anyway, so terminating due to T21 was the thing to do.

Words like "suffering" from Down syndrome are still commonly used. We are encouraged to test, test, test with the goal of eradication if an imperfection is found.

23 and 24 week old "typical" babies are being born and saved -- 28 week old babies with Down syndrome are being killed in utereo, and then aborted. They must be killed first, as the risk of them surviving an attempted abortion is too great at that stage.

Women who are prenatally diagnosed are left to their own devices. Filled with fear, some just want to get it over with as quickly as possible...to run from that fear. Others will have the opportunity to research and speak to families living with Down syndrome.

What needs to happen is that obstetricians need to be better educated...they MUST learn about our children in a deeper way than just a medical diagnosis on paper -- they must utilize resources to give an expectant or new parent accurate, complete information that includes the good with the bad.

We need to understand that the worth of a person has nothing to do with 'cost effectiveness' -- as the theory is that children with disabilities are hugely taxing because of their sometimes tremendous medical bills.

How ironic that we don't argue the treatment of a person with lung cancer that has chosen to smoke for 40 years, or the revival of a heart attack victim who is 50 pounds overweight and drinks like a fish. How can this not be up for debate, yet my child, born gloriously to the world, with a very important message to deliver, is debatable?

Our society needs to recognize that true perfection in a person has very little to do with chromosomal count, or genetic make-up. Our perfection must come from within--from our ability to love and care for our fellow human beings--from our ability to make a difference in the world.

Baby Doe lived just 13 days. In that short time, he changed the world...he changed how people perceived him, and paved a way for more humane treatment of children that would come after him. His spirit and his soul was recognized as something worthy of fighting for. He may have very well saved my child's life.

I say anyone who makes that much difference in 13 days is certainly worthy.

Worthy indeed.

Shaving Cream, Silly String and Large Buckets of Ice

What could these things have in common? Its the thanks that Wayne got from his Little League kids on Saturday night for a season well done. We had an all day tournament for all 165 kids we had playing, and the kids seemed to have a blast at it.

Its incredible the amount of organizing it takes to run a season of baseball -- especially considering we started completely from scratch this year...5 months ago, we didn't have fields, equipment, or for that matter, kids to play!

There's a lot of work dealing with 12 different teams, and 12 different coaches, all with different personalities -- some with too little enthusiasm, some with a little too much, and thankfully, most with just the right amount.

My "job" for baseball with Wayne has been pretty much the same as my job for life with Wayne...I am the official ORGANIZER -- reminding him when things need to be done, people need to be called, keeping schedules and handing out information.

This week is my last week off for summer before I go back to work, so I will be busy tidying up the loose ends of our baseball season, busying driving kiddos to before-school-starts dental cleanings and soccer games; trying to squeeze a little school shopping in, and someone-hit-me-up-the-side-of-my-head-and-knock-some-sense-in-me-now, going to see a 7-week old puppy that I'm going to fall hopelessly in love with and most likely bring home.

Its amazing how my ordinary days twist and turn and weave themselves into quite an extraordinary life.

O.k. So Maybe I Wasn't Meant To Fish

My "Gone Fishin" day went down the drain. Wayne was off for the day, except for "one service call" (he's a computer tech) - which turned into an all day affair. While he was at work, a person that he does some consultant work for was calling here, wanting his attention as well.

So, he ended up working Monday night too. Which meant that the girls and I went to Dakotah's soccer game alone. She played late, from 8-9:30 and the mosquitos were horrible -- poor Paige got eaten alive.

Wednesday, Dakotah had a dentist appointment, and I was going to go in to work for a couple of hours in the afternoon. HA! Halfway to work, I get a frantic call from Dakotah that Paige is very, very sick.

Twenty minutes after I had left home, I come back to find Paige sobbing, and in very obvious pain. When she wasn't wincing, she was drifting in and out of sleep, and very hard to rouse - it was quite scary. So, off to the ER we go, where they spend an hour trying to get enough blood out of her to do blood work (they got perhaps 10 drops with at least that many pokes to her arms, hands, feet, etc)

Suspecting appendicitis, we head off to the Children's Hospital. By the time we get there, Paige's temperature is close to 105. Her pain seemed to have subsided though, so we start to think perhaps its a UTI.

Poor kid didn't want to give a urine sample for anything. She'd have to pee, and as soon as I tried to catch it in the little bottle, she'd stop!!! She was so insulted that I was messing around while she was trying to go!

Finally we get that done, and its clear. Six or seven hours and a couple of doses of Tylenol/Advil later, and they sent us home. So, who knows what was wrong? She's better today, after a very long sleep, so perhaps it was just a virus, although the rest of us are fine.

And Dakotah has been having what I suspect are gallbladder attacks -- very painful ones. So, Monday we head for an u/s to see what's going on there.

I just knew I was never meant to be "off duty!!"

"Busy-ness is a bad habit"

I read this quote on one of those portable signs in front of Tim Horton's one day, and it has really stuck with me. First of all, I'm not entirely convinced that busy-ness is actually a word, so the fact that it was on a sign bothered my grammatical acuity. It also makes every other word I see seem wrong too - like acuity, lol.

But, it is a quote to be remembered. I have definitely adopted the art of being busy as one of my worst habits. My lists have lists, and I am often so overwhelmed with the thought of "so much to do" that I can't dig in my heels and get things done.

Admittedly, one of the biggest frustrations of my ugh - busyness - (ok, well, if it isn't a word, it should be - its quite handy!) is that, like most Moms, I spend too much of my time doing repetitive tasks such as housecleaning, laundry, cooking, etc.

By unlike my Mom of 30, er, 40 years ago, our family has also added in many things that add to our constant state of moving.

As predicted earlier this summer, I am at the point where Little League has become a heavy weight to drag along - having started this League from scratch in the Spring, and quickly moving into having 12 teams, 165 players ranging in age from 4 to 16, we are very busy with it.

Its not even the actual playing of the game, but the constant organizing, and various other tasks that go along with it that are overwhelming me. We are planning a tournament day, as well as a visit to the Ottawa Lynx triple A team in Ottawa in two weeks.

There's so much planning that goes along with everything -- even acquiring fields is a daunting task in our community.

Add the other parts of summer to this mix - Dakotah plays soccer, and wants to go here, there and everywhere with her friends, Paige is playing t-ball, and we are working hard to concentrate on Hanen, and both working, and well...you get the picture.

Every family that I know lives this sort of chaos that wasn't present 40 years ago. One of my friends has a son and a daugther. The daughter takes piano, violin, dance, and voice lessons, and has recitals throughout the year. Her son plays in two different soccer leagues that practice 4 nights a week and have games twice a week, and does the same thing with hockey in the winter.

Her children are uber-scheduled out, and she will admit, they don't know what to do with an afternoon off -- they can't turn off their busyness even when they aren't actually busy.

This morning, I have a list of about 50 things to do - phone calls to make, bills to pay, school uniforms to order, etc. My house, well...you'd have to love me a lot to see through the flash cards and fridge phonics on the floor, the half finished baseball poster on my dining room table, the pair of dirty socks (grr) that my husband took off and dropped beside him on the floor in the living room, and the two baskets of clothes (hey, they ARE clean!) waiting at the bottom of my stairs to go up and be put away.

I promise that under it all are floors that were vacuumed and mopped yesterday though!

I'm overwhelmed with my "to do's" and bothered by the fact that, if I leave them, they just kinda wait for me to return, lol.

But, I'm taking the advice of a very wise friend of mine today --- my toes are painted aquamarine, fresh baked cookies are cooling on the stove, a cooler is sitting next to my refrigerator, waiting to be filled with turkey sandwiches, potato salad, yogurt, and cold lemonade.

A half-filled bag contains sunscreen, a tiny size 5 bikini with goldfishes on it (dis one!) and like Goldilocks and the Three Bears, a bigger bathing suit, and then yet a bigger one. A Dora beach towel, a turtle beach towel, and two other towels chosen at random wait for the next bag. Paperback books are tucked in, probably to stay for the day, as we abandon them for shovels and sand pails.

Today, as my dear friend Tara would say, we have "Gone Fishin'"

Well...not really fishin' - but in a fishin' state-o'-mind.

Tag! I'm It!

I've been tagged by Camille!

Here are the answers to the questions as Paige would answer them:

Three things that scare me: Little yappy dogs (love the big ones!), going down the stairs (I have old lady hips), really loud noises

Three people that make me laugh: My big sister, the cast of "Who's Line Is It Anyway" (I laugh so hard we have to turn the channel), my first EA Janet (she has a very loud crazy laugh that I imitate)

Three things I love: Horseback riding, swimming, music toys, baseball games (I love to cheer, although Daddy always says there are no cheerleaders in baseball)

Three things I dislike: Anything with rice in it, the Audiologist (take my blood, pull my teeth, but do NOT mess with my ears), when my mom coughs (I have cried every time she coughs since I was a tiny baby - anyone else can cough all they want)

Three things I don't understand: Why everyone in the mall might not want a hug, why people don't want me to take their glasses off their face so I can wear them, why there isn't school all year long.

Three things on the floor: 75 flashcards (or more!), my dad watching baseball in front of the fan, my duck, my spongebob, my babydoll, and my Dora (all lined up to watch me sleep)

Three things I'm doing right now: Right now I'm sleeping, but I'm usually dancing to a music toy, raiding the fridge for a drink, or snuggling up to someone for a hug and a story.

Three things I can't do: go outside and sit on the sidewalk by myself--there are so many people to meet! talk (but I'm really trying!) wake my sister up in the morning.

Three things that best describe my personality: sweet, cuddly, mellow -- and very funny!

Three things you should listen to: Kids Songs on my cd player, my Mom singing the alphabet in a funny voice, the sound of my laughter

Three favorite foods: Oatmeal, chicken, yogurt (and shhh...m&m's)

Three shows I watch on occasion: Dora the Explorer (I just discovered her), Blue's Clues, and anything on the Game Show Network.

And now............................I am tagging Miss Emma Sage!!!

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...