Friday, December 22, 2006
Dakotah and I went into her room, and she was laying on her pillow, sound asleep, with her hands behind her head. This was quite unusual as well, as Paige usually sleeps with her face planted somewhere between her toes!
We were looking at her sleeping, and Dakotah says, "Isn't it amazing how perfect she is?"
Can you imagine how much I loved both of my children at that very moment?
Tonight, we decorated the Christmas tree. O.k...Wayne and I mostly decorated it, as the kids got bored somewhere in the first half hour of production!
Paige laid on her belly and swung her feet behind us, and just looked at the lights and all of the ornaments while we were decorating. Dakotah played with the dog, took 20 pictures of herself on the digital camera, played Christmas music for us, etc.
And...I had an incredible deja vu moment. After suggesting that we anchor the tree to the wall to my husband for the 100th time -- "Look, all we have to do is tie a string around it, the hook is already there!" -- the inevitable happened -- one ornament tumbled the tree!!
So, off to the van he goes to get the twine that we needed. Suddenly, I was transported 10 years back in a very real way. Almost 10 years ago to this very day, Dakotah was 3 years old, watching Frosty the Snowman on TV, Wayne was at the gym working out, and our tree took a tumble.
I sent Dakotah off to get the phone and bring it to me so I could call Wayne as I held the tree in place. As she went to hand it to me, it rang.
It was my ob/gyn with my amnio results. "I'm very sorry to have to tell you this, Mrs. L, but its Down syndrome."
At nearly 28 weeks, the conversation continued, with her offering me the chance to abort -- explaining that in the case of genetic problems such as this, therapeutic abortions can be offered to mothers because of the stress involved, and the risk to the mother's health because of this great stress.
I don't know that I had a reaction to her suggestion of abortion -- I was more interested in knowing the sex of my baby -- a GIRL!!! just what I had wanted! And thoughts swarmed my head of what she would look like, how her life would be, etc.
All this as Frosty played in the background and I held onto that tree for dear life.
When Wayne came home, we talked about the baby, and the news we had gotten. I think I was stunned, and suddenly very conscious of my role as a Mom - that this was our child, and our destiny was about to change in a very big way.
That night, my little girl once again put my life into perspective. As I tucked Dakotah into bed, she kissed my stomach, as she did every single night of my pregnancy, and whispered, "good-night babydoll, I love you."
In that moment, I realized that the baby I was carrying was the exact same baby that she had been the day before, the week before, the month before. Nothing had changed, except I knew a little bit more about her.
In the weeks that followed, I would have many ultrasounds that would show us over and over again that the baby had no functioning kidneys or stomach -- that she was surviving simply because she was inside of me.
Our hope for her became the hope that she would live long enough to be able to harvest her organs and give the gift of life to some other newborn.
What a difference those 10 years have made! If I were to ever get that call again, "I'm sorry, Mrs. L., its Down syndrome -- and a little girl" --- I would have to drop that Christmas tree right where it stood, so I could fall to my knees and thank God for this great blessing -- this very, very perfect child.
At the same time...these 10 years have not changed everything. Dakotah still sees her little sister as a beautiful, perfect little girl.
And I still thank God every single day for both of these children, created just for me, perfect for me in every way.
Thursday, December 14, 2006
Yesterday, Paige's Living & Learning Class had swimming in the afternoon. I take the kids over to the pool, and Camille meets us there.
Yesterday, Camille also had her friend, Melissa with her. Melissa has two little girls, Bella and Maya. Bella has a progressive, degenerative disease that is fatal. She is a beautiful little girl, with skin as soft as the most luxurious silk your mind can even imagine.
Melissa and Bella and Maya decided they were going to swim with the kids! How fun!
Because Bella needs to be held and supported in the water, Camille offered to go in the pool with Maya.
The "rest of this story" is what I want to tell you about...to see what a special person Camille is.
She did not have a swim suit with her, nor did she have time to go home and get hers. So...she went to St. Vincent's, which is a 2nd hand store that sells clothes to raise money for the poor, like the Salavation Army.
And...she bought a bathing suit. Any old bathing suit. She just held it up, hoped it would fit, and away she went.
When she tried it on, it was short for her, and didn't fit her well. Most women, in their vanity, would have said "forget that." Most of us wouldn't get caught dead in a suit that we didn't think looked good on us, or that we felt uncomfortable with.
Not Camille. She didn't even hesitate. She shrugged it off, laughed, and said, "Oh well, we'll have fun...that's what matters."
This is my friend, Camille...who always sees the bright side...who walks on the sunny side of the street.
She found a moment of simple childhood joy -- splashing in the water -- and seized it without hesitation.
What a wonderful way to live. What a wonderful person.
Christmas is fast approaching, as it always seems to do for me. I'm a very organized person, but time is such a premium in our fast-paced lives that I have many last minute details that need to be tended to.
My house is very decorated for Christmas, sans Christmas tree, as we are not entirely sure how Kirby is going to feel about a tree. Actually, we are pretty sure he is going to really love a tree, lol...thus our hesitation to put one up until the kids are out of school and he can be tended to full time.
He's been an amazing puppy so far. He visited Paige's school this week. He is very sweet and quiet and loves attention. He is very smart, and is learning commands already. What a good dog we have gotten. So good in fact, that I'm considering training him as a therapy dog, to go and visit elderly people and some of the people who live in our area group homes.
Our vet has told us she thinks we got much more Newfie than we thought -- we thought he was just 1/4 Newfie, and the rest lab, but she says he is Newfie through and through in his personality.
So far, my Christmas plan to celebrate with our children is working out well. We are talking about family traditions and memories of past Christmases, and are making plans for everything that will end up in our scrapbook. Its been a good season for us...
Tuesday, December 05, 2006
Monday, November 27, 2006
Macky is autistic, and shares most of his day with Paige - They go to the regular grade 3 classroom together, and then are in the Living and Learning Classroom in the afternoon, where they work on life skills.
At Macky's birthday party yesterday, there were 10 children. Macky and one other little boy, Damien, are autistic. Damien is an amazing child to watch. In one aspect, he is very developmentally delayed, and has some very difficult problems to overcome. He doesn't have a wonderful family support system, and he is very far behind socially. When you say to him, "Hi, Damien! How are you today?" He will most likely answer by simply repeating back to you what he has heard. He is not greatly conversational.
However, he is six years old and can read incredibly well. He could read an encyclopedia from front to back. He couldn't put any of it into his own words, but if you were to take a passage and change the words around, he could surely find that.
The mind of a person with autism is immensely fascinating--to try and deciper the thought processes of these kids, and how to "re-fire" their brains to connect in all the right ways must be a very daunting task. I tip my hat to the researchers who are trying to find the answers for people with autism.
Also at the party were 8 "typical" kids from their Grade 3 class. All kids that Macky and Paige have been in school with for the last 5 years.
I never stop being amazed at how much a part of the class Macky and Paige are. The kids all play together, and all have great fun together, and no one seems to even notice the differences. All of them are immensely patient with Paige and Macky, and readily accept their quirkiness as just a part of who they are.
Its a great life lesson that the children who go to school with Macky and Paige have been given -- one that will indeed change the world for them and for their children. They have learned lessons that many of them cannot even fully understand yet; lessons of compassion and acceptance and love.
I have often wondered if this attitude of embracing Paige and Macky would change as the children got older, as the differences became more apparent, and as the kids no longer looked like cute "babies" for the rest of the school to oooooh and ahhhh over.
But...like all relationships that begin with love, it has only grown stronger -- this tie between all of these children. Most of them have never been in a classroom where there wasn't a child with special needs -- they do not see that as unique or different -- they see it simply as it is.
These are all Paige's peers -- the ones who are "typical" and the ones who are not. They are all people who will touch her life in one way or another. They are the people who will stand up and cheer for her when she accomplishes a new task, and the ones who will patiently wait while she tries the same task over again.
That, to me, is what true inclusion is. Its not about insisting that she sit in a classroom of kids her own age to give the appearance of inclusion. Its about letting her be the included one sometimes, and letting her be the one to include at other times. Its that balance that makes it successful.
I often think abou this when I read about families having problems with integration or schools that are not cooperating to actively educate all children.
What better "resource" than to have a child with Autism or Down syndrome, or any other physical or developmental delay in the classroom?
In a world where it is critical that we teach very important life lessons very early on, any school system that would not embrace this opportunity should not be educating anyone.
Monday, November 20, 2006
We are very excited about the Christmas season in our house this year. We have decided to make this a "Memory Christmas."
Like many of us, I am so struck by the commercialization of our Christmas season, and like many of us, I have bought into it since my children have been born.
This year, it seems almost sinful to indulge ourselves in our every whim. I was at the Mall yesterday, and it was crazy how much *stuff* people are buying.
When did we get to the "here's a very expensive present, see how much I love you?" part of our lives?
Christmas is a happy, yet melancholy time for me, as I'm reminded of all the people who will do without; of all the children who will not feel joy during this season, and of all the parents who's hearts will be broken because they cannot provide for their kids on Christmas morning.
And yet, in the end, very, very few of my best Christmas memories have anything to do with gifts. Even my children could not recall what their gifts have been with great accuracy -- some stand out for Dakotah, but not many.
So...this year, we are building our family a Christmas to remember. And one of the ways we are going to do that is to take the concentration off gifts.
Its not easy to do; some people whom I've told about this plan raise an eyebrow at me, and think I should be able to pull off my "game plan" AND fill my tree with gifts for my children.
I don't think so. They are well provided for; we have many luxuries, and if we get passed the "what I want for Christmas" thing, we will find great joy in each other.
This year, our gift to our children will be the gift of time and love. We will trade the "Christmas rush" in for time spent with them. We will make homemade Christmas cards, and decorations for the tree, and go out in the woods and chop that tree right down, just the 4 of us. We will bake and give to neighors, teachers, and friends. We will adopt a family, and grocery shop for them for a week, and provide gifts to their children. We will sing Christmas songs and look at lights.
And along the way, we will talk about our favourite Christmas memories. Wayne and I will tell stories of our childhood Christmases, and tell our children over and over and over again how much we adore them.
We will remind them of Our Saviour, who was born during this season, and how grateful we are to Him for everything.
And...we will document our entire journey, with pictures, stories, etc., that we will put into a big family scrapbook.
Yes, there will be stockings filled, and a few presents under the tree Christmas morning, but the most special gift of all will be that scrapbook that we have made together...a precious, precious keepsake of this wonderful time in our lives.
Sunday, November 19, 2006
So...as I posted earlier, our car died. What a big, fat pain it was trying to function in a one-car world. We are two people who both live a "need to be in two places at once" world, and having one car to do that was very stressful and annoying.
We bought a new car - a kinda rustish coloured Pontiac Sunfire. Its cute, and fun to drive. Its a lot smaller than driving ...yes...I admit it...a mini-van.
So, now we play rock, paper, scissors to see who gets the van and who gets the car, lol.
Last Saturday night, we were shopping in Ottawa. It was cold and pouring rain. Paige has severe arthritis, and was very lame that day. So, we used our handicapped placard to go into the store. We never use this thing...but she really needed it that night.
We come out of the store, and there's a ticket for $300 on our car for parking in a handicapped spot without a placard. WHAT?!?! On the ticket, it says that we must appear in court in order to fight the ticket. Ugh...its an hour away, and will mean someone taking time off work, etc.
I called the city bylaw people right away, and told them I would wait there with Paige for the bylaw officer to come back--so that he could see we had both the placard and Paige with us. About 8 calls later, we (I hope) have had the ticket cancelled without having to go back to Ottawa.
Wayne was refused entry in the US yesterday. We were going to NH to a baby shower for my niece. As we went through customs, the guy asked a ton of questions, including, "Have you ever been fingerprinted?" Both of us replied yes...I had been fingerprinted in the early 80's when my company hosted the Presidential Debates in Manchester. I had to have FBI security clearance to be able to participate.
Wayne was fingerprinted when he was 18 -- he was in a bar with a bunch of friends from University -- drinking underage. It was raided by the police and they were all taken in and fingerprinted. No one was charged with anything.
Well...apparently, because he did something "illegal," he now has to get a waiver that cost $400 and requires an insane amount of paperwork -- documentation from employers, letters from the RCMP (Canadian Police), letters of character,etc.
AND...it takes 6 months for this to go through.
Unbelievable...he has been to NH 4 or 5 times a year for 20 years...even got married there, and now this silliness.
He has a spotless record--not even a speeding ticket!
There were about 25 people denied entry yesterday as we sat there -- we were told that this particular customs spot had been selected to basically rip everyone apart...that they do these randomly, and when it happens, its utter chaos at those stations.
One guy who was denied was going to a family reunion, and was the entertainment there. Because he gets paid as a part-time musician here, he was told that he was stealing an American's job (even though he was going to play French Canadian music!), and because of that, he has been denied entry for the next 5 years. Crazy stuff.
Well...I guess the good news is that Wayne was not detained, other than the couple of hours there, and when we crossed the Canadian border, I was not hassled as an American.
Saturday, November 04, 2006
I've been battling some pretty funky gynecological problems in the last few months, and have spent as much time in my OB/GYN's office than I did when I was pregnant for Paige. I have felt very "unwell" for months now -- freezing cold all the time, getting waves of exhaustion that I cannot even describe, horrible menstrual irregularities, etc.
Hopefully what I'm dealing with is PCOS and a rather large fibroid tumour that is causing lots of very unpleasant side effects. I expect biopsy results back in the next few days.
Paige had ear tube removal two weeks ago, and caught a nasty sinus infection afterward. She still has this icky rash on her face that I cannot conquer. And Thursday, she came home with pink eye, that she lovingly passed on to me.
Our 2nd car died a final death this week, and although it served us well, its another thing we have to think about this weekend.
And, after so much teasing and begging, and threatening, and cajoling, Wayne finally went and had some much needed bloodwork done this week.
He has had high blood pressure since he was 30 - and has a very strong history of diabetes in his family.
He also hates needles, and has a horribly irrational fear of having blood drawn. Year after year, he has put it off, after lectures from his doctor and me.
Well, I've seen him really change over the last 6-9 months especially, and I wasn't having anymore denial.
Without going into the drama of having this test done, including two trips to the hospital, me basically calling in the Army to hold him down, etc., he relented yesterday morning, and had a two hour glucose test done.
As I arrived in the door from work, the phone was ringing. Normal fasting blood glucose is between 2 and 4 - Wayne's was 29. We were told anything over 14 is cause for concern for a diabetic coma.
He's pretty ticked off at me right now -- of course, if I hadn't pushed it, he could still be ignoring this. It will take him a few days to realize we probably just saved his life.
He has to test 3 times a day now, for the rest of his life. Medications have been added and changed, and our pharmacy bill last night was nearly $500. He is having none of it -- won't read about diabetes, isn't wanting to learn about what he will do to keep healthy, wouldn't go to the crash course on using the meter, etc.
But, he will learn. He has to. He has no choice now. He does not have the choice to let himself die - its not fair to me, to his children, his parents.
His "if I ignore it, it will go away" policy has also been instituted on me over the last months, and my feelings are terribly hurt that he acts so apathetic to the reality that I have some challenges as well.
I pray that he gets on top of this. And I also pray that when the shock is less, that he will understand my passion for forcing him to do this bloodwork this week was done out of love for him.
I pray that he decides to find strength in me when he needs it, and that he offers it back to me when I do.
Wednesday, November 01, 2006
O.K. -- so maybe her bonnet was just a tiny bit pointy. Whatever, people.
She hung in there for 3 hours with big sister, dressed as a hippy, tugging her along. She walked so much, and went up and down so many steps that I'm sure her little hips were screaming to stop by the end of the night.
I've never been a huge fan of trick or treating...I can't ever shake the feeling of knocking on someone's door and asking for something, lol. And I'm not a lover of excess, so this really takes the cake in that department.
But Wayne love, love, loves Halloween, and its become his night with the girls more than mine. Neither of the kids are big candy lovers either, so we always end up with so much that is wasted.
At any rate, they had fun, which I guess is what its all about.
Highlights of the night include going to the Sisters' House -- they adore Paige and brought our family in for a short prayer before handing out candy and sending us on our way.
Paige's old Physio Therapist was totally bald, and she loved rubbing his head when she was little...so much so that I'd be like, "Ok, enough already!!!"
Well...we go to the house of the jeweler in town. He happens to be a dwarf, and is a bit shorter than Paige. He is also totally bald.
You guessed it...Paige grabbed a hold of him, and pulled him in for a big hug, and started rubbing his head, "awwwwwwwww...." It was sooooo funny!!!!
Wayne knows him well, and he took it all in stride, but it was totally hilarious.
After we got home and got everyone finally tucked into bed, I dove into my November challenge...the write a Novel in November Challenge that I talked about earlier.
So...approximately 2,119 words later...I'm in.
I decided not to write about our life, and Paige's journey, as I want to be respectful of that, and give it the time and attention it needs.
Instead, I'm just going to write a goofy story that is basically evolving as I write. I'm going to use the basic setting of my relationship with Wayne, but the characters are going to embrace the worst of our characteristics, and will never beexactly happy or content.
Some of the events will be relatively true, and some will be crazy and completely made up.
I'm previewing the first night of ramblings if anyone wants to read it...but after that, you might just have to wait.
If you want to see it, e-mail me (BetsyBiskt@hotmail.com)or leave your e-mail address in the comments, and I'll send it along.
I can tell you...the crazy story about the female main character meeting her somewhat identical twin sister in the form of a boyfriend's wife actually DID happen to me...very strange indeed!!
Tuesday, October 24, 2006
November is National Novel Writing Month. Click on the link above, and get addicted, just like I have! Can YOU write a novel in November? Can you pump out 50,000 words just to prove you can? Can you drop any self-criticism, and just write, write, write?
Be a part of our mania. Send us late night or early morning e-mails cursing us for your lack of sleep. Post excerpts of the Great American (or Canadian) Novel for us to read...let's challenge each other to push the writing button and see what we come up with!
Sign up now, but don't start writing until November 1.
And for the record -- I'm tagging my very good friend CAMILLE!!! She's definitely got 50,000 words to share in November!
Saturday, October 21, 2006
Always, but particularly since Paige's birth, I have felt like I have been called to do certain things in my life. I feel as if I have been given a message that I am supposed to be sharing.
My friend Camille and I spoke about this the other night, as we often do. She is such an amazing person...someone I look up to so much. She has such a full plate, yet never ever turns down a friend in need, or forgets to check in on someone who might need a hug.
This week, she helped a very sick friend of hers get through a very rough patch in her life. She took extraordinary steps to make sure her friend would be o.k. and to help her friend try and remember the beauty of life.
Of all the gifts having a child with Down syndrome has brought to me, Camille is so high on that list of blessings.
And like we often do, we try to figure out how we can make this "ministry" of ours profitable, lol!!!! Because unlike God (not that He isn't pretty busy, haha), we also have to take care of so many everyday things...laundry doesn't do itself, someone always has a dentist appointment, and no matter how many times we feed our families, it seems like they need to eat again just a few hours later, darnit.
Although we both live very nice lives, and have everything we need and then some, we also fret about income, and worry about our family's financial futures, like everyone else does.
So, we're always wheeling and dealing ideas back and forth to one another about how we can earn money without it actually taking any time or effort away from what we really want to do.
I have a part-time job -- and although its a job I like well enough, and can do well enough, I am constantly resentful of the time it steals from me. I thought if I did something totally removed from the "realness" of my life, I would feel like I was getting a break.
I was wrong. I NEED to be doing something of importance -- something that is significantly touching the lives of other people around me. I have a message to share, and its starting to scream louder and louder at me.
And...I have a book in me. That I know, and have always known. I cannot remember a time when I didn't say I was going to write a book. Certainly as soon as I learned to read at 3 or 4 years old, I fell in love with words, and never stopped loving them...I cherish the power they have to fill hearts and souls with hope, and love and gratitude.
So...I'm trying to make peace with this restlessness, and trying to hear the message that it is sending me.
Perhaps its time I stop daydreaming about "someday" -- someday when I have more time, and someday when I don't have as many obligations, someday, someday, someday...maybe that's what I'm feeling lately.
When my life is over, and my days are done, I want to be remembered and cherished for being a good person, for making a difference, even if its just in this tiny part of the world I live in.
I want to have lived an extraordinary life. And God, in all of his goodness, has given me all of the tools I need to make this life quite extraordinary.
This weekend, Wayne is away, and I am home for a quiet weekend with the girls. My soul has felt pretty tired lately, so I'm going to give it a good rest, and spend these two days listening to what it is trying to tell me.
Saturday, October 14, 2006
So, this is Dakotah's "Birthday Weekend". Last night she went to her first ever dance at school - I'll write more about THAT another day! This morning, she had a toll painting class with one of her favourite teachers from her old school.
Tonight, we are going to "McMaze" - a big farm of cornfield mazes, and haunted buildings and scary trails with about 8 of her girlfriends, who are then (Lord help us) staying overnight here.
Anyway...this morning, Dakotah is in class, I have showered, blow dried my hair, etc, and Wayne has not been in the shower yet. We are doing the last minutes stages of cleaning that must be done before guests arrive.
Wayne is vacuuming away, and I am organizing knapsacks in our hallway. *Knock, knock, knock* at our door.
OH NO! I'm about a foot away from the door, and am in just a t-shirt and undies!! No pants!!! I jump a mile, grab Wayne's arm, as I run to hide in the dining room..."Someone's at the door!! Someone's at the door."
Just then, Wayne realizes that he is stilll just in boxers, as he hasn't showered yet. So he runs to join me in the dining room.
Realizing we've made a strategic "wrong move" because our stairway to our upstairs is actually the other way, where we will now have to pass by the front door in order to actually attain clothing, we are trapped!!!!
But, the vacuum cleaner is still going! I peek around the corner--its Wayne's friend Mike, who now sees me. I put my finger up like "Wait a minute" only he interprets it to say "Come on in!!!"
We are now stuck in our living room, scantily clothed, while I am laughing hysterically, the vacuum cleaner is running, and Paige has gone to say hello to Mike.
I finally tell him to turn it off so I can talk to him...and explain our predicament, much to our embarrassment!
He was like...o.k...half-naked with the vacuum cleaner running -- I do NOT want any further details.
We are never going to live this down, lol.
Two lessons of the day:
Never clean house half naked.
After 17 years of being together it really IS quite possible that all you were actually doing was cleaning!!!!
Wednesday, October 11, 2006
When I first met Wayne, my SIL spent lot of time with her neice, who was then much younger of course. Since then, there has been some dissention in the family, and she doesn't see much of her niece.
So, we were just chatting about her, I was asking how she was doing, etc. She is basically non-verbal, and prone to some pretty violent rages. Periodically, she is placed in one of the many residential homes in our area for people with developmental delays and disabilities.
I asked my SIL what her diagnosis is, and apparently, it has been pretty hush-hush, although most of the family suspects fetal alcohol syndrome.
My MIL has often referenced her when we get into discussions about Paige, and I am always rather annoyed by that, because it seems as if she just lumps Paige in with this woman because they both have developmental issues.
Frankly, I don't like the concept of lumping any child in with any other, so its just "the point" that bothers me about it. My MIL seems to think this woman's life is my future...in some ways, it may be, and in others it certainly will not be.
Just in a fleeting comment, my MIL says, with great pity in her voice, "Its too bad, you know..she's 27 - she could have been married by now, had her own children..."
In one way, it IS too bad if this woman is a victim of fetal alcohol syndrome--a completely preventable condition. But, by all accounts her mother has not drank for many years, and loves her daughter dearly...dotes on her and misses her so horribly when she places her that she always brings her back home.
And my MIL expressed great sympathy for her--being forever "burdened" by caring for this now grown woman, who still acts very childlike. She said, "its so sad...she will never be free. She will always have to care for her."
Although I've heard that statement many times before from my MIL, I have thought a lot about this "parental freedom" she refers to.
What does it mean to have our freedom from our children? And...do you really want it?
My mother is free from her children. By her own choice, and own actions, she has conducted herself in such a way and victimized herself so much that her three children, save one who still contacts her periodically out of guilt, have come to know that they can not rely on her for even the most basic of "mother" care...we have had to make conscious decisions to stop her manipulation and attention-getting ways by stopping contact with her.
We have had to say "no" to all of the times she has disappointed us by not showing up to an important event, or telling so many little white lies about us that it leaves us with our mouths hanging open.
So...she is free. She no longer has to "mother" any of us.
There is not enough money (or chocolate) in the world to make me crave that freedom for even a split second.
I chose to bring these children into the world. And God chose to give them to me to raise and love and cherish for every moment of my life.
I intend to do that. At various times throughout their lives, my children will need me in differing degrees. Sometimes, it will be hard to meet their needs, and it will feel heavy on my shoulders. I pray during these times that I will be reminded of their inate joy, and that will carry me through.
Their needs will be much different throughout their life times. But neither will be more troublesome or burdensome than the other. My ache for freedom from either of them will be limited to needing a few minutes to stop and breathe, or say a little prayer that I find the right words or the right actions to support and meet their needs.
I still ache for my children when they sleep -- I sneak into their rooms and watch them sleeping peacefully, although one of them is already nearly a head taller than I am.
Freedom...freedom is the ability to reach out and hug my kids.
Saturday, October 07, 2006
This is also the time of year I miss living in New England the most. There is nothing more beautiful than autumn in New England - driving through the White Mountains, and seeing all of the changing colors of the trees on the mountains is just spectacular.
My favorite colors are all of the natural colors of the changing leaves - brilliant oranges, deep reds, golden yellows -- colors that only nature can make perfectly.
There is no joy more pure for a kid than raking up a big pile of leaves, and just jummmmpppiiiiiing!!! Seldom do we find any other time that we are totally free of all worries and lost in the moment of childhood.
I love these crisp mornings when there is just that threat of frost, and the fallen leaves crunch beneath your feet. You don't quite need a winter coat, but your favourite fall sweater is a welcome addition to the wardrobe.
All of you who live in a "seasonal" area know the challenge of the furnace -- where you try to go just one more day before you add heat to your house. Somehow we always remember what day we finally gave in the year before, and try to hold out for just one extra day.
When I was a teenager, and young adult, I declared October 17 as my favorite day of the year. I would hold yearly "October 17th" parties for my friends. I thought it was just short of fate when I met Wayne and his birthday was the 18th -- just shy of my "best" day.
How wonderfully ironic that Dakotah would be born on October 17th, even though her due date was the 4th, and I went into labor with her on the 15th.
Dakotah even brought a extra nice Fall surprise to me. During my pregnancy with her, I craved squash & pumpkin -- something I never liked before. Now, its a wonderful treat to eat warm butternut squash, with salt and pepper on top--yummy. And every year I find some new pumpkin recipe to try -- pumpkin pie, bread, pudding, etc. Last night I had a taste of a pumpkin blizzard from Dairy Queen...too good!
This morning, Paige and I are the only ones up so far. We snuggled under a quilt and caught an episode of Arthur together before she wandered off to play with her Leap Frog toy.
Our weekend will be spent simply as a family, before the craziness of birthdays and day surgery comes upon us next week. This is the first weekend that we've not had something planned (baseball, etc) for months, so I've got a great big list of things to do for all of us.
I love those "at home" weekends where we work on house projects. The rest of my family, eh, not so much. But its a good feeling of accomplishment as we begin to transform our house to the next season...taking out winter clothes, tending to flower gardens that are being bitten by morning frost, raking leaves...
Its a good reminder that life passes us by quickly, that one season, one year, turns into the next in the blink of an eye, and that we better take the time to go fishin' once in a while, to stop and smell a rose, to marvel at a bright orange leaf.
Thursday, September 28, 2006
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;
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
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.
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.
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.
Strive to be happy.
Tuesday, September 19, 2006
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...
Saturday, September 16, 2006
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.
Sunday, September 10, 2006
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.
Thursday, August 31, 2006
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
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.
Monday, August 21, 2006
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
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
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.
Thursday, August 03, 2006
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!!!
Thursday, July 27, 2006
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...
Thursday, July 20, 2006
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.
Sunday, July 09, 2006
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..."
"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."
Tuesday, July 04, 2006
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.
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.
Sunday, July 02, 2006
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."