Thursday, August 31, 2006

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.

Friday, August 25, 2006

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 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.

Monday, August 21, 2006

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.

Thursday, August 10, 2006

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!!"

Monday, August 07, 2006

"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 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,'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.

Thursday, August 03, 2006

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!!!