The Joy of Boys

Do girls do this?? My boys have so much fun wrestling.... it's a regular activity around our house. They were wrestling before I started to video but Ryan stopped when he saw the camera out so I just had to encourage him a bit. And I think I may have to be a spendy girl soon and get a REAL digital video camera instead of just using my regular camera for videos... it would be much better, don't you think?


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Ryan's christmas concert and Kurtis on piano

Here are two videos of my sweetie at his Christmas concert yesterday. I was so impressed with the last song - they signed "we wish you a merry christmas"!



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Have I mentioned how much I love Ryan's teacher? And boy, are we going to miss her as this is her last week. Mrs. W is covering a maternity leave and Ryan's regular teacher is coming back in January. Mrs. W taught me a valuable lesson in pre-judging. I heard we were getting a substitute teacher for 4 months who was coming out of retirement to do this. I immediately thought that she'd be a teacher with old outdated stereotypes, one who would limit Ryan and not include him. I was so worried at the beginning of the year.... and boy, was I wrong. Mrs. W is amazing! She was eager to meet with me and discuss goals for Ryan (outside of his official "individual education plan") and discuss how best to teach him. She fully included Ryan in the class - calling on him when he raised his hands even though most of the time he didn't know the answer (but many times he did!). She taught the class sign language and Ryan "led" the class during those sessions. She held him to a high standard of behaviour - unfortunately, for Ryan, this means a fair number of time-outs - but Tom and I fully expect Ryan to be held to the same standard of behaviour as other children. She encouraged independence but also realized that modifications could be made if the task was too challenging. At first Ryan really missed his junior kindergarten teacher and wasn't thrilled with Mrs. W, but as you can see in the picture, he really really likes Mrs. W now! We really are going to miss her.

Here's a short video of Kurtis doing his piano concert. He did have a school Christmas concert but I didn't get a good video of it.

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Prayer

Prayer has been elusive lately. I feel like I've been praying the same prayer for 10 months and right now the the connection just isn't as "strong". I'm not too worried - I've gone through lulls in my spiritual life before. I don't know if this is normal... or if I'm just not as dedicated a Christian as others, but in any event, it's me and my life. I find at times like this that I resort to "impromptu" prayers - not formal prayers. I say a quick thanks for the beautiful birds outside my window, a quick prayer for strength when I'm feeling particularly weak. It does bother me a bit that I can't seem to pray right now as I have so much to pray for. But I feel like I'm asking of God all the time.... for health, for strength, for my Dad and my sister and me as we grieve Mom's death....ask ask ask. I've been feeling this way for a while but it hasn't yet resolved. So my prayers continue to be minimal.

Then, a few days ago, I received an email from a woman ("H") I met on-line who has the same cancer as me. She wrote: I don't know about you but lately I've just been putting my hands up to Jesus and groaning. Nothing more to say. Just help us Lord.

That night, I opened a devotional I hadn't read for a while. For some reason, I decided to read the devotional for the day my Mom died (October 31). The verse is from Romans 6:26-27: "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will".

Wow - talk about an answer to a non-prayer! The devotion continues: "So we can simply pour from the fullness of our heart the burden of our spirit and the sorrow that seems to crush us. We can know that He hears, loves, understands, receives and separates from our prayer everything that is in error, imperfect, or wrong...... It is not necessary to be continually speaking to God, or always hearing from God, in order to have communion or fellowship with Him, for there is an unspeakable fellowship that is sweeter than words. A little child can sit all day long beside his mother, totally engrossed in his playing, while his mother is consumed by her work, and although both are busy and few words are spoken by either, they are in perfect fellowship.....Then when troubled with burdens and difficulties too complicated to put into words and too puzzling to express or fully understand, how sweet it is to fall into the embrace of His blessed arms and to simply sob out the sorrow that we cannot speak".
- from Streams in the Desert, L.B. Cowman

H, I hold up my hands as well and say "help us Lord". God hears us even though we don't know what to say. He hears the inmost desires of our heart and listens. May we both feel God's presence, love and peace. I keep thinking of this verse and it helps to feel "connected" even when I don't feel overly connected via prayer.

...too soon.

I spoke too soon, that is. How I wish I could figure this chemo out - it's been extremely frustrating, to say the least. Last time I posted, I was feeling OK. But the days since have been up and down... I don't know why the nausea is lingering so long. I wonder if it's something I'm eating or perhaps something (some nutrient, vitamin or mineral) that I'm missing? Or is it just that the chemo is lingering longer in my body? I had a substitute doctor last visit and he wasn't any help when I mentioned that I felt sick for so long. Thank goodness I get an extra week off during the Christmas holidays so I can regain my strength!

Anyways,,, enough about that. I want to share about my on-line friend, Nicole. I have mentioned her before. She has a daughter with T21 - which is how I met her. She is also blessed with 3 other daughters and a wonderful husband. Very recently, a family in her area had a baby girl born with Down syndrome. This family feels unable to care for this little girl and will be giving her up for adoption. After a lot of prayer and deep consideration, it appears Nicole and her husband will be adopting this little one. I am so so happy for them. Since I have known Nicole (5.5 years ago!), she has talked about perhaps adopting another child with T21 "someday". Well, it appears that someday is here. You can read more about it on Nicole's blog: http://all4gals.blogspot.com/.

Feeling better

This round of chemo has been much easier than last round. My sister asked me what I did differently.... how I wish I knew! Then I could duplicate it!

I'm still quite fatigued - getting the kids ready this morning really wiped me out. And I'm still dealing with some nausea. It seems to hit in late afternoon. Again I wish I knew why that was, but for now, I lay down and take my gravol.

I've been able to eat since Thursday, which is fantastic. I've been living on a fairly limited diet of water, watered down Gatorade, premium plus crackers, cereal with milk (crispix and cheerios) and small portions of Ben & Jerry's chocolate ice cream (that was new today). But at least it is eating! Hopefully in the next few days other food will become a bit more appealing and more able to "stay down".

How far we have come! ... or have we?

Mike Shaw is the Chair of the Canadian Down Syndrome Society Board of Directors. I had the pleasure of meeting Mike when I was co-chair of the 2005 CDSS Conference. He is funny and very sociable. He is also VERY passionate about people with DS. One of the things I am liking is the direction CDSS is taking with regards to advocacy. Their stated vision is: "a proud Canada where ALL are welcome, we embrace diversity and we value everyone's genes equally". They have taken out ads in major newspapers and put ads on roadside billboards. I am hopeful that CDSS will become more and more vocal in the future.

Here is an article published in the Fall 2006 CDSS Newsletter by Mike. It is an excerpt from his opening speech given at the World Down Syndrome Congress in August 2006. Reprinted by permission of the author. I'll write my thoughts on this tomorrow.

Just over a year ago, the Board of Directors developed a new vision and mission for the Canadian Down Syndrome Society. We did not, however, do this unaided. We were guided by the wisdom of the Voices at the Table Committee. (Annette's note: Voices is comprised of adults with DS). This talented group of self-advocates wisely instructed us and made it clear: "Nothing about us, without us". We listened. And we believe our mission and vision reflects their goals.

We are determined to see a Canada where all are welcome. Two generations ago, when parents received the news that their new baby had Down syndrome, a recommendation to institutionalize that baby generally followed closely behind receiving the news. A generation ago, the determination of Down syndrome was still a sombre announcement - albeit one that came with the recommendation to raise the child at home.

Today we look around us and many of the adults in our midst were those babies one and two generations ago. They are here as self-advocates, as Ambassadors, and they are here celebrating their unique genes - celebrating the fact that they have Down syndrome.

How far we have come! Or have we?? Today, news of an impending birth where the child has Down syndrome is still met with the same negative attitudes as generations past. The difference today is that there will never be an opportunity to celebrate many - no, most - of these individuals with Down syndrome because so often the pregnancies are terminated.

Really, what has changed in these past generations? The general public attitude towards people with Down syndrome? Clearly not. The only thing that has changed is society's means of isolating itself from an entire segment of the population. We have moved from the isolation of institutions to the whole scale removal, in many cases with government funding, of fetuses with Down syndrome through more "efficient" screening technologies.

Nelson Mandela once said, "our struggle has reached a decisive moment". This is true for each and every one of us in attendance here this weekend. We are engaged in a battle for nothing short of a future that includes individuals with Down syndrome. And that battle has to happen now.

The message is clear. Individuals with Down syndrome are part of the mosaic that is Canada. They are as much a part of this land as any other individual. Celebrate their talents, victories, friendships.

Canadians need to hear and heed this message. We know we have a long way to go. A recent article in the Globe and Mail told of one woman's decision to terminate her pregnancy following a determination of Triple X in her unborn child. The article also elaborated on her pre-conception decision to abort the fetus if a test for Down syndrome were to be positive. While this woman may have been unique in publishing her story, she was not unique in her decision. But as loudly as that woman chose to tell her story, it will never be as loud as our self-advocates speaking out for themselves. Recently the Toronto Sun profiled Andreas Prinz, a member of our VATTA committee. All over the country stories are popping up in newspapers and on television that celebrate the joy of being or knowing an individual with Down syndrome.

Robert Kenney described it this way: "every time you stand up for an ideal, you send forth a tiny ripple of hope." If everyone stands up for an ideal - stands up for what we believe in - and celebrates Down syndrome, just think how large that ripple of hope could be. It won't be a ripple - it will be a wave - a new wave of beliefs throughout this country and indeed, throughout the world.

Going under

I'm heading in for another chemo treatment today so I won't be posting for a while. I'm praying hard that this one isn't as difficult as the previous ones. I'm really dreading this to tell the truth... but you gotta do what you gotta do.

Dancing Boy

Ryan is having a lot of fun with some Halloween costumes. I picked up a SpongeBob costume for $5 and a Cat in the Hat costume for $7.... AND.. I just figured out how to get the videos right on my blog, so I had to share these videos of dancing Ryan.



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The start of a new tradition?

Kurtis has been soooo excited about Christmas already. He's been begging me to get the house decorated, but my rule is that I do the decorating on December 1 (or the weekend that follows) and not before. So he's been begging to bring the boxes up from the basement,,,, to put up the wreath - ANYTHING that I'd let him do. So, officially, on December 1, I allowed some decorations to be put up but on Saturday we did the tree.

Ever since Tom and I have been married, we've had an artificial tree. And growing up, we've had an artificial tree for most of my life (I do remember a live one when I was very little, but that was a loooong time ago!). Two years ago, we got a real tree after me begging for one. This year Tom thought it would be fun for us to go to a tree farm, pick out our tree and cut it down ourselves. So we headed out. They take you out on a hay ride to the trees and then you start walking and inspecting each tree in order to find "the perfect one". I was very impressed with the tree Kurtis picked, and I do think we got the perfect one! Both Kurtis and Ryan were eager to help with the saw and to drag the tree back to the tractor.


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"I'm not a saint, just a parent"

Here's another article circulating the "DS" world. I love it because it speaks so clearly about how parents of "special" kids feel. We're not special... we're just parents who love our children. It's always bothered me when people say "special children are given to special parents". The reason it bothers me is because it puts me on some kind of pedastel, as if I'm somehow better, more equipped to deal with a child with special needs than someone else. I'm not. I'm like anyone else doing what they need to do for someone they love. I'm no more special than anyone else. I didn't come equipped with skills needed to have a child with Down syndrome but I've learned a lot. And we're just people... we're not special. BUT,,, this gentleman says it so much more eloquently, so I'll let the article now speak for itself. It's long, but worth the read.

http://www.timesonline.co.uk/printFriendly/0,,1-7-2448700-100,00.html


I'm not a saint, just a parent
In a moving extract from a new book to mark Mencap’s 60th birthday, the Times chief sports writer Simon Barnes describes life with his five-year-old son Eddie, who has Down’s syndrome

The thought hit me with such extraordinary power that my legs almost gave way beneath me. I walked a few steps to one of the benches that surround the duck pond on the edge of Barnet, and sat down. My heart was racing, my breathing shallow, I was covered in a sweat, and I thought for a moment that I might pass out or throw up. After a decent while I decided I would do neither. And I got up and went to the supermarket, for my wife was in hospital and was filled with a passion for fresh fruit.
What if he has Down’s syndrome? That was the sudden question that had overwhelmed me. My first child was to be born any day and there were complications, which was why my wife was in hospital. So naturally I was full of nerves, as a first-time parent must be. The duck-pond incident was an attack of the horrors: I imagined a situation so terrible that it almost robbed me of consciousness. Down’s syndrome! The horror, the horror!
Well, he didn’t. Joseph was born the next day by Caesarean section, and has no problems beyond his own singularity of nature. Joe is great: Cindy and I were, if you’ll forgive the word, blessed, and life carried on in a new and extraordinary way. So far, so ordinary.
Seven years later we had another child. He does have Down’s syndrome. We had been told after the second scan that there was a 50 per cent chance of this. I accepted it as a 100 per cent certainty. Or was there just a tiny, 1-per-cent pinhole of hope? Hope against hope? But no, I told myself, resign yourself. And I remember clearly another of those moments of pre-birth terror. I’m sure we’ll deal with it, I thought, whatever happens.
And they’ll say, Simon, well, bloody hell, you know, he’s a saint, the way he looks after that boy. And I thought: I don’t want to be a bloody saint. I want to enjoy my life, not dedicate it. I have no ambitions at all when it comes to sainthood.
And do you know what? I haven’t become a saint. It’s a complete triumph: I have found no need for canonisation whatsoever. Nor did I have to work hard at resisting sainthood. Unsaintliness came quite naturally. Eddie — Edmund John Francis — was born on May 23, 2001. He has Down’s syndrome all right.
He has me as his father, and his father is not a saint. His father also enjoys his life very much, and Eddie does not compromise that: au contraire.
Eddie enjoys his life very much too, most of the time: he makes that quite clear. And when he doesn’t, he makes that pretty clear as well. Being a child.
The human imagination can do many extraordinary things. But we can’t imagine love. Or perhaps I mean loving: love as a continuous state; one that carries on in much the same way from day to day, changing and growing with time just as people do. The great stories of literature are about meeting and falling in love, about infidelity, about passion. They are seldom about the routines of married life and having children.
We can imagine dramas and turmoil. People make films about them. In our own minds, we often put together the most terrific stories about thrilling or devastating events that might befall us. But what no one can imagine is the day-to-day process of living with things and getting on with the humdrum job of loving. We can imagine only the beautiful and the terrible. We are drama queens, and our imaginations are incapable of giving us any help about coping from day to day. Marriage is not the same as falling in love; nor is it an endless succession of terrible rows and monumental reconciliations: it is about a million small things: things beyond our imagining.
By the way, I hope you are not too squeamish. This piece is not going to pull any punches. If you find the idea of love uncomfortable or sentimental or best-not-talked-about or existing only in the midst of a passionate love affair, then you will find problems with what I am writing. I am writing of love not as a matter of grand passions, or as high-falutin’ idealism, or as religion. I am writing about love as the stuff that makes the processes of human life happen: the love that moves the sun and other stars, which is also the love that makes the toast and other snacks. Love is the most humdrum thing in life, the only thing that matters, the thing that is forever beyond the reach of human imagination.
So no, I couldn’t imagine what it was like to live with a child who had Down’s syndrome. I could imagine only the dramatic bits: the difficulties, the people in public places turning away in shock and distaste, the awfulness of a child who couldn’t say his own name.
I could speculate on the horrors of living with a child who could not do a thousand things. I could create a dramatic picture of life with a monster. But I could not imagine what it was like to live with Eddie. You know, from day to day.
That doesn’t make Eddie unique. I couldn’t imagine what it would be like exchanging a childless life for life with Joe. I don’t think anybody can do that sort of thing: it’s not what the human imagination does. You imagine bits that make you proud and bits that make you fearful. You can imagine reading him the Narnia stories, reading his glowing school reports, watching him score the winning goal and hearing the applause after his solo at the school concert. But you lack the machinery for imagining the routine of living with a child who grows up with you.
The fact is that nothing to do with love seems so terribly difficult when you get down to it. Nothing seems an impossible demand on your time, your resources, your patience, your temper, your abilities: not because you connect with your inner saintliness but because you just find yourself getting on with it: muddling through. Most non-parents imagine that they could never change a nappy. Then parenthood happens and they do it. It was the same thing when it came to living with Eddie. It’s just parenthood: everyone who has done it knows it.
So Eddie was born, and I have spent the subsequent five years living with him. Not living with Down’s syndrome: what a ridiculous idea. Living with Eddie. Who is my boy. And that really is the beginning, the end of it, and the day-to-day routine of it.
At the hospital, when they discovered on the scan that Down’s syndrome was a possibility, they very kindly offered to kill him for us. They needn’t have bothered. My wife is, unlike myself, an exceptional person in the field of loving and caring. Please do not read this as a brief genuflection, one of the ploys of married life. Nor is it a literary trick. It is rather the literal truth. One small example. I have two goldfish in my study, both the size of salmon. When one fish was much smaller, Cindy found him dead: flat on the bottom of the tank. She lifted him out and somehow revived him. It was a long and elaborate process, and it worked. That is the sort of thing Cindy does. The idea of not caring for something in your care is an abomination to her. The idea of not caring for her own child was impossible to contemplate. Amniocentesis? Not a chance, it puts the child at risk. And no matter what such a test would say about the child, she would go ahead. There was a life that had to be cared for.
This was not negotiable. It sounds, I know, a little dreadful to put it this way. Certainly, I lack the courage to stand between Cindy and someone she loves. The Devil himself lacks that sort of courage. Had life turned out differently, had I been married to another, had that woman preferred to go the way of amniocentesis and termination, I have no doubt that I would have gone along with that, too, and treated parents of Down’s syndrome children with a lofty pity.
But, thank God, I did not marry someone else. And that left me with a straightforward choice. I could either say that Eddie wasn’t part of the deal and bugger off, or I could keep on keepin’ on with the humdrum routines of life and hope that this would be enough for the arrival into our lives of this unimaginable creature we already knew as Edmund, or Eddie. Well, we needed a name and Joe, to whom I had indeed read the Narnia stories, was especially keen on that one.
A name changes everything, and even when he was in the womb we were not wondering about how we would cope with A Child With Down’s syndrome. We were wondering about living with Eddie.
So Eddie was born and in a week or so it became clear that the important issue was not how I would cope with his having Down’s syndrome, but whether he would die. He had two holes in his heart and needed open-heart surgery at four months.
I remember those few months of illness with great clarity: this little blob of life draped over my left shoulder, arms slack at his sides, too weak to do anything but flop. Treacherous voices had spoken to me during the late pregnancy: perhaps I’ll be let off. Perhaps there’ll be complications. Perhaps he’ll die in childbirth. Knowing, all the time, that this let-off would be no let-off at all but a worse horror than anything I could imagine. Such terrible voices will speak to us and we can’t always silence them: it is part of how we dramatise our lives.
And of course, the reality is very different from the things you imagine. When Eddie was on my shoulder, I wanted him to live with all my heart: indeed, if my heart would have been any good to him, I’d have given it and welcome. That doesn’t make me a saint, by the way. Just a parent.
I remember the medical phase of Eddie’s life before and after his birth, and the 24 hours in intensive care. I remember, too, the amazing confidence of the doctors and nursing staff at Guy’s. Their certainty quickly became Eddie’s certainty and eventually ours. Truly remarkable people.
So Eddie lived, and lives: burly and merry and, on the whole, pretty healthy. And once the surgery was done and the emergencies and dramas were over, it was time to get on with the business of living. And that is really rather an easy business. You live one day, and then you live the next.
Well, maybe easy isn’t the right word. But parenthood is not supposed to be easy — nothing worthwhile is. Down’s syndrome brings a number of physical problems. After his operation we suffered — all of us, but Eddie by far the most — with Eddie’s agonies of constipation, a weekly rising barometer of hideous discomfort ending in blessed and stinking relief. Here, and in many other ways, we looked for help and found it. But in an unexpected way. Peter Walker, a cranial osteopath, had the hands and the mind to help Eddie through his difficult patches, and he continues to do so. As Eddie belatedly began to crawl, his naturally lax stomach muscles tightened and the problem eased, just as Peter had predicted. And no one else had a clue.
There are various bits of assistance provided by the State: if you have a child with special needs, you will find a cluster of them. Some of these people are great, some less great. There are times when we feel invaded by people with a negative mindset and poor understanding, dominated by an eagerness to fill in forms and keep their arses covered. There are times when we feel that Eddie is state property: a public problem that somehow has to be organised.
It seems sometimes that Eddie’s principal function is to provide employment for unpleasant and insensitive people. Steps have been taken, words spoken. Problems still occur and are distressing. No doubt there are forms and files that have us down as obstructive and difficult parents.
Eddie’s education continues at Eddie’s pace — which is slow and demands a lot of repetition. He has a few words now, a vocabulary of Makaton signs and a cheering capacity for understanding. He goes to the local nursery school, which he enjoys very much, and we hope that he will be at school in the next village in a term or two.
Is Eddie’s slow but continuous education frustrating? Not at all. Progress of any kind is enthralling. It’s not about a child passing an exam, it’s about a child growing into himself — and for every parent that is a great and glorious thing. It has been the same with Joe in many ways: he hates sport, is unmusical and has never got on with school life. He has a thousand other strengths, and is improving them. That’s education for you. The fact that Eddie counts doo, doo, dee rather than performing differential calculus does not affect this truth. Eddie is learning stuff and becoming more himself.
I am not in the front line of the teaching part of Eddie’s life. I see myself as more in the front line of arsing about. Giggling is an aspect of life underrated by the chartmakers. Eddie has a huge relish for giggles. He also loves a ball game, and our improvised games of chucking the ball into the wastepaper basket or kicking the ball for the dog are a constant delight. The dog is one of Eddie’s special joys. He will climb into her basket and curl up with her, and the dog — a gentle labrador — does no more than sigh.
Children with Down’s syndrome often seem to have a charismatic side, at least when they are up and everything is going well. Eddie loves to laugh, and from an early age it was clear that he also loves to inspire laughter. He has, for example, a taste for preposterous hats, and when he visits his grandfather he always wears his grandfather’s bowler. Such clownishness is not to be pitied but is something that Eddie deliberately assumes, though not to order.
Cheerful little soul? Certainly not. He’s a five-year-old boy and more prone than most to frustrations. His need to communicate is acute and therefore frequently painful, when his vocabulary of signs and words is inadequate for his own clear idea of what he needs. That brings on a wounded-buffalo roaring of fury and distress.
Generalisations about Down’s syndrome are as hopeless as any other generalisation. The one that people good-heartedly make most frequently is “They’re very loving”, a phrase that Cindy and I often quote to each other in the middle of a fit of the roars.
It’s not a matter of they, it’s a matter of him. I don’t have a child with Down’s syndrome: I am Eddie’s father. There is a huge difference between the two things. The first is almost impossible to deal with, the second is the way I live from day to day. I don’t even think about it much.
Eddie is lucky in many ways, not least in his choice of a brother. Joseph is seven years older than him, which means that they are not competing on the same level or for the same things. And Joe has his mother’s generosity.
He and Eddie have wonderful big-brother/little-brother games, full of piggybacks and tumbles and chasing and pouncing. The only problem arises when Eddie’s charisma overwhelms a gathering, leaving Joe feeling a little ignored. Eddie makes everything fun when he’s up, so he becomes the centre of attention. Joe, however, takes that in his stride and enjoys Eddie’s social triumphs.
I don’t want to sound too matter-of-fact here, any more than I want to sound saintly. Of course it’s difficult sometimes. That’s true for any parent and, God knows, many parents have more difficult times than Cindy and I do. I don’t, above all, want to give the impression that everything is easy because I am such a sane, balanced and admirable person. I am none of those things. I’m just a parent, playing the hand I’ve been dealt as best I can.
Some bits are hard, some bits are easy, some bits are fun, some bits are a frightful bore. That’s true of life with Eddie, it’s also true of life with Joe. But you don’t even begin to break it up into categories: it is the one endless, complex business of being a parent. You don’t go into parenthood to make sure that the benefits outweigh the deficits: you go into it out of — brace yourself but no other word will do — love.
Parenthood is not really about the traditional round-robin Christmas letter: Jasper is school captain and is having trials for Middlesex at both cricket and rugby and played Hamlet in the school play of the same name, while Oxford and Cambridge have both offered scholarships. He has just passed grade ten on the cello. Parenthood is not about perfection, it’s much more interesting than that: it’s about making the best of what you have. Define best, then? Do that for yourself, but I’ll give you a clue: if you think it’s all about A levels, you’re on the wrong track.
So my task, then, is to bring the best out of Eddie. That is unlikely to involve A levels. I know that there will be many harder things to face as he grows older. No doubt we will take these things in the order in which they come. We can imagine a few horrors, of course, but we will live through the actual events day by day. And we will continue with other important tasks such as giggling and playing ball and providing hats and dealing with a world that can’t imagine the dreadful fate of being a parent to a child with Down’s syndrome.
What is it like to have Down’s syndrome? How terrible is it? Is it terrible at all? It depends, I suppose, on how well loved you are. Like most other conditions of life. Would I want Eddie changed? It’s a silly question but it gets to the heart of the matter. Of course you’d want certain physical things changed: the narrow tubes that lead to breathing problems, for example. But that’s not the same as “changed”, is it? If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?
I can’t say I’m glad that Eddie has Down’s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don’t want his essential nature changed. Good God, what a thought. It would be as much a denial of myself as a denial of my son. What’s the good of him, then? Buggered if I know. The never-disputed terribleness of Down’s syndrome is used as one of the great justifications for abortion: abortion has to exist so that we don’t people the world with monsters. I am not here to talk about abortion — but I am here to tell you that Down’s syndrome is not an insupportable horror for either the sufferer or the parents. I’ll go further: human beings are not better off without Down’s syndrome.
A chance gathering in my kitchen: three people. My wife, who has some gypsy blood. Eddie. A friend who is Jewish. And the realisation that, under Hitler, all three would have been bound for the ovens. Down’s syndrome, any more than Jewishness or gipsyhood, is not something that needs to be wiped out for the good of humanity. Down’s syndrome is not the end of the world. In fact, for me it was the beginning of one.
I am not here to make judgments on those who have gone for termination, being unwilling to cope with something that they could not imagine. I am here to tell everybody that Eddie is my son and he’s great.
I have a life that a lot of people envy. Mostly they envy my job: I am chief sports writer of The Times, and people say: you’re going to the World Cup, you’re going to the Olympic Games, you lucky thing. Can I come? I’ll carry your bags.
I live in a nice house in the country, I keep five horses and as a family we are comfortably off. For all these things people envy me. But I have a child with Down’s syndrome and for that, people pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am not to be pitied but to be envied.
WHAT IS DOWN'S SYNDROME?
Down’s syndrome is a chromosomal abnormality that arises spontaneously.
In the UK, one baby in every 1,000 is born with Down’s syndrome. Their life expectancy is 55.
The chances of having a Down’s syndrome baby increase with the mother’s age: one in 1,351 at age 25, one in 112 at 40. But more than half of all Down’s syndrome babies are born to under-35s.
If prenatal tests reveal Down’s syndrome, 94 per cent of babies are aborted.
The incidence of dementia in people with Down’s syndrome is similar to that of the general population, but it occurs 20 to 30 years earlier.
The number of Down’s syndrome diagnoses increased by 50 per cent between 1989 and 2004, partly because of increasing average maternal age.
© Rix 2006

"See movie"

One of the things about having a child with a developmental disability is that you celebrate different "milestones" and different achievements. Since some things require so much hard work for your child, you celebrate like crazy when it happens. And although it sounds so small by the world's standards, they are big in our life. This weekend we had to celebrate Ryan's memory, his initiative and his determination...

While driving home on Saturday morning, Ryan and I passed by the big movie theatre by our house. Ryan yelled "vee" when he saw it and got a bit excited about it. I was amazed that he remembered we had gone to see a movie there, so I asked him if he saw a movie there before.. "yeah" he replied. "Do you want to go see a movie there soon?" "yeah yeah yeah" he replies very LOUDLY. So I tell him "when we get home, tell Daddy you want to see a movie. Tell him 'see movie'" (and I do the signs with him as well). When we get home, he quickly gets out of the car, runs over to Tom in the garage and says "ee vee" (and signs "see movie"). So, we talk about going to see a movie the next day and getting popcorn and pop to go with it. He mentions it again later that night and we remind him that we're going to go tomorrow.

The next day, we discuss again that we'll go.... after nap time. I tell Ryan he has to have a nap first, and then we'll go to see the movie. The VERY first thing he says when he wakes up from his nap is "ee vee" (with the signs of course). And I must say, I got amazing cooperation from my little boy over the next little while... changing clothes? no problem.... turning the TV off? right away..... getting coat and shoes on? as quick as I can Mom!

I know it doesn't sound like much to most people. But for a little boy with a severe speech delay, the persistance he showed about this really impressed me. How could I not reward him?

Surfacing...

I do feel like I've been under for the past 9 days. Here's an update of what's happened:

THE STEELERS TRIP
Julie and I had a great trip to see the Pittsburgh Steelers DEFEAT the Saints. Wow, what an experience that was. The tailgate parties, the gear and the sheer number of people there was amazing. I felt underdressed.... I swear at least 95% of the people at the game had Steeler gear on... and all I had was my yellow towel and a ballcap. I felt the urge to go buy a jersey!

And on a funnier note...what do you get when you put two people who are directionally challenged in a car in a strange city? Pulled over by the cops - that's what! Who knew that "Buses Only" really meant buses only??? In our defense, Pittsburgh has some of the most detailed rules of the road I've ever seen..."no right turn on red on M-F 4:30 - 6:30", "no right turn on red Sundays 9:00 - 12:00", "no right turn on red when the moon is full and it's the third thursday of the month". Thankfully the cop had pity on us confused girls and let us go with a warning.


We returned home late Monday afternoon. The next morning Tom and I headed off to Toronto for my oncology appointment.

THE CHEMO PLUNGE
I didn't know if I would be receiving chemo or not as this appointment was to review the results of my recent CT scan. The CT scan was identical to the previous one. In this case, this was good news. Although I had said in previous posts that the CT scans showed no change, in each case there was a very slight amount of cancer growth. In this case, there was none - and that IS good news. It also meant I can undergo two more rounds of chemo (at which point we'll test again).

So I had chemo on Tuesday afternoon. My doctor gave me a new medication to try to help with the nausea and vomiting I experience. It is a powerful anti-anxiety drug and it knocked me out. I essentially slept from Tuesday afternoon until Monday morning. And I guess sleeping is better than being sick, but I don't know that it really did much in the nausea department as I still wasn't able to eat much during that week.

This chemo is the hardest I've ever been through - or maybe it's just that after 10 treatments over the past 9 months, I'm not able to recover as quickly as before. I've lost a lot of weight due to this chemo and that does worry me a bit. The one thing I've always been good at is maintaining my weight (mostly too well... but when you're going through chemo, maintaining weight is a GOOD thing) and now I'm not able to do that as much. And when I do feel like eating, it's not the healthy food I want... I want nachos and cheese, ice cream, cheese sandwiches, Thai food.... when I should be drinking my homemade vegetable juices, eating my kale soup and broccoli and carrots. I've got to work on increasing my nutrition (and as I'm writing this, I'm drinking a glass of lemonade and cooking a beef croquette for lunch).

GRIEF
I'm finding that grief is a funny creature. I expected to feel more upset at my Mom's visitation and funeral... but I wasn't. I expected to be crying more often... but I'm not. I did NOT expect to break down and start crying walking down the ramp when exiting the Steelers game... but I did. I was walking down the ramp, in the middle of thousands of people after witnessing a wonderful win by the home team. It popped in my mind that I'll have to call my Mom when I get home and tell her all about it as she would love to hear about my weekend... where we shopped, what we ate, what the game was like. And then it hit me that I couldn't call her and I started crying. I did not expect to think of her in the middle of doing some dishes and have it hit me.... but it does. Grief is not happening like I thought it would. And that's something I'm going to have to work through.




So... now it's Wednesday and I'm starting to feel functional again. Sorry for leaving y'all in the lurch for over a week. I'm really touched by the concern I received - people who worried about me when I didn't post for so long. Please, keep saying prayers for me and my family.

A Funny

Kurtis and I were watching a children's show that was talking about bees and hives and how honey is made. He turns to me and says... "so basically, honey is bee barf." YUM! I'm still chuckling over that comment.

I'm surfacing... and am working on keeping y'all updated. I should have another post tonight.

ROAD TRIP!

I'm off for the weekend... I'm so excited!

My very very good friend, Julie, and I are off to Pittsburgh to see the Steelers play. Julie is the Steelers fan, not me, but she invited me along to see the game. Even though I don't watch football, I am REALLY looking forward to going to the game and seeing an NFL game live!

We're stopping in at a huge outlet mall on the way down. I hear the deals are great so I'll probably be a bit of a spendy girl again.

So... if you're watching the game on Sunday, look for me! I'll be the one in the Steelers hat! ;)

Inspirational Story - Dick and Rick Hoyt

Most of the people who read my blog through the "T21 community" will have already seen this - so you can skip this post. But others might like to see this.

I've reprinted the article here but I couldn't figure out how to get the video over here... so please click on the link, page down and click on the video. The song is actually one of my favourites too.
http://cjcphoto.com/can/

[From Sports Illustrated, By Rick Reilly]
I try to be a good father. Give my kids mulligans. Work nights to pay For their text messaging. Take them to swimsuit shoots.
But compared with Dick Hoyt, I suck.
Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in Marathons. Eight times he's not only pushed him 26.2 miles in a Wheelchair but also towed him 2.4 miles in a dinghy while swimming and Pedaled him 112 miles in a seat on the handlebars--all in the same day.
Dick's also pulled him cross-country skiing, taken him on his back Mountain climbing and once hauled him across the U.S. On a bike. Makes Taking your son bowling look a little lame, right?
And what has Rick done for his father? Not much--except save his life.This love story began in Winchester , Mass. , 43 years ago, when Rick Was strangled by the umbilical cord during birth, leaving him Brain-damaged and unable to control his limbs.
"He'll be a vegetable the rest of his life;'' Dick says doctors told him And his wife, Judy, when Rick was nine months old. ``Put him in an Institution.''
But the Hoyts weren't buying it. They noticed the way Rick's eyes Followed them around the room. When Rick was 11 they took him to the Engineering department at Tufts University and asked if there was Anything to help the boy communicate. ``No way,'' Dick says he was told. ``There's nothing going on in his brain.''
"Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a Lot was going on in his brain. Rigged up with a computer that allowed Him to control the cursor by touching a switch with the side of his Head, Rick was finally able to communicate. First words? ``Go Bruins!'' And after a high school classmate was paralyzed in an accident and the School organized a charity run for him, Rick pecked out, ``Dad, I want To do that.''
Yeah, right. How was Dick, a self-described ``porker'' who never ran More than a mile at a time, going to push his son five miles? Still, he Tried. ``Then it was me who was handicapped,'' Dick says. ``I was sore For two weeks.''
That day changed Rick's life. ``Dad,'' he typed, ``when we were running, It felt like I wasn't disabled anymore!''
And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly Shape that he and Rick were ready to try the 1979 Boston Marathon.
``No way,'' Dick was told by a race official. The Hoyts weren't quite a Single runner, and they weren't quite a wheelchair competitor. For a few Years Dick and Rick just joined the massive field and ran anyway, then They found a way to get into the race Officially: In 1983 they ran another marathon so fast they made the Qualifying time for Boston the following year.
Then somebody said, ``Hey, Dick, why not a triathlon?''
How's a guy who never learned to swim and hadn't ridden a bike since he Was six going to haul his 110-pound kid through a triathlon? Still, Dick Tried.
Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii . It must be a buzzkill to be a 25-year-old stud Getting passed by an old guy towing a grown man in a dinghy, don't you Think?
Hey, Dick, why not see how you'd do on your own? ``No way,'' he says. Dick does it purely for ``the awesome feeling'' he gets seeing Rick with A cantaloupe smile as they run, swim and ride together.
This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best Time? Two hours, 40 minutes in 1992--only 35 minutes off the world Record, which, in case you don't keep track of these things, happens to Be held by a guy who was not pushing another man in a wheelchair at the Time.
``No question about it,'' Rick types. ``My dad is the Father of the Century.''
And Dick got something else out of all this too. Two years ago he had a Mild heart attack during a race. Doctors found that one of his arteries Was 95% clogged. ``If you hadn't been in such great shape,'' One doctor told him, ``you probably would've died 15 years ago.'' So, in a way, Dick and Rick saved each other's life.
Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass. , always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.
That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy.
``The thing I'd most like,'' Rick types, ``is that my dad sit in the chair and I push him once.''

The new "do"

Here's a picture taken on Saturday of me with the new hairdo. I stopped wearing head coverings around mid-October as my hair came back enough for me to feel comfortable going "au natural". My hair came back more gray than I anticipated. I knew I was grey, I just had no idea I was THAT gray! I've been colouring, high-lighting and low-lighting my hair for so long now, I really didn't know what my natural colour was. So, it turns out the new shade is "salt and pepper"!


This picture was taken on the occassion of my 40th birthday party. My birthday was actually last Thursday. Despite the upheaval and sadness of last week, we decided to hold the party anyways - and I'm so glad we did. I had a wonderful time.... I should as it was all MY friends there!















Here are some other pictures of the big event:

Lisa, my Dad and me:














Ryan with one of the many balloons:



















Kurtis with most of the balloons. The decorating committee (aka my mother-in-law, my brother-in-law and his girlfriend) went a bit balloon crazy, but the boys sure loved it!

Laid to rest: Winnie (1940 - 2006)

My Mom's funeral was held today.

What an odd couple of days. Incredible sadness intermixed with love and laughter. I remember when I was young and attended a funeral, I was struck by how the adults were laughing at the lunch held after the interment. I couldn't believe how they could laugh after we just buried somebody! Weren't we supposed to be sad and crying??? We just were crying 1/2 an hour ago - how could they be laughing now? Now that I'm older, of course, I understand how joy and sadness can occur. We've spent some time over the past few days remembering my Mom - telling stories, remembering things we've done together, laughing at quirks she had and things that happened in the past - and it's been so wonderful to laugh. Even last night at the funeral home, we joked that now Mom and her lifelong friend Jennie are up in heaven having a coffee together.

And once again, I was struck how funerals are not for the dead, they're for the living. It was a chance to share tears with good friends of my Mom, to cry with her siblings and her in-laws. Everybody that knew and loved my Mom needs a chance to say good-bye. I'll never understand families that hold "private" ceremonies for immediate family only. To me, that's just not fair. It totally minimizes all the other relationships that the deceased had. Yes, my Mom was most dearly loved by her husband, her daughters, her sons-in-law and her grandchildren. But she was loved by so many others - her dear lifelong friends, her siblings, her in-laws, new friends. And, even if someone didn't "love" her as we would understand it, her life affected many many other people - people she used to work with, people she attended Coffee Break at church with.. etc etc etc etc. I think that all these people need to have a way to say "goodbye". I found it so uplifting to see and chat with all those people who loved my Mom. Though it was heartbreaking to say good-bye, it was so wonderful to share our mutual love of her.

So, now, I'm emotionally drained and physically tired. It's been a long 4 days...it's actually unbelievable that it's only been 4 days since she passed away.

Lisa and I wrote a small "eulogy" for her funeral:

Mom was born the youngest of four children in the Netherlands during the war. She often spoke fondly of her childhood days growing up on the farm, and as a family we enjoyed hearing her stories and seeing her birthplace on a family trip to Holland. As kids we got a kick out of the fact that the barn, with all the animals was attached right to their house! The cutout bed in the wall was quite fascinating too. The family stayed in Holland until 1951, when Mom was 11, and they immigrated to Canada. The family first settled in Cochrane, Ontario. We loved to hear how the family lived in the school house and used the packing crates to enhance their house. In later years, the family moved to Caledonia. In her late teens, Winnie met the man who would be her future husband and on September 29, 1961, Gordon and Winnie were married in St. Catharines.

Early married life was spent working hard at their jobs to establish a new home life for themselves. Mom and Dad enjoyed weekends with friends and family. Their favourite pastimes were bowling, cards with friends and visiting family. Summertime was spent in their boat at the beach with friends waterskiing and boating. Mom and Dad also enjoyed summer holidays at the cottage with family and friends.

After 5 years of marriage, they were blessed with a daughter, Annette. Four and a half year later, Lisa came to join the family. Mom always told us how happy she was to have her two girls.

Growing up with Mom was often a lot of fun. Our favourite memories are of family vacations and traveling to many various locations. Our first major road trip was out east. We learned so much about our country and history through our various vacations and Mom and Dad instilled a love for travel in us both!

Mom loved to be with her friends and family and have a good time. Before she had her heart attack 3 years ago, she loved to walk. Almost every day included a 30 minute walk to Tim Horton’s for a coffee and another 30 minute walk home. Biking was another love of hers. Bike rides up to Lock 3 with Dad were her favourite. A bike ride to Virgil for breakfast was also a fun thing to do. Mom also always had the most beautiful and abundant garden on the block. We marveled at her green thumb and her ability to cultivate teeny tiny flowers into great big bushes of blooms. Her indoor plants were also her pride. She loved to laugh at a good joke, savor a glass of wine with her friends or her girls, enjoyed lunches or dinners out, and when her grandchildren came along, she loved to spend time with them and spoil them. Before her heart attack, Mom did a lot of babysitting and developed at wonderful relationship with each of her grandchildren. Mom was a caring and compassionate woman and was always there to help someone when needed.

We are forever grateful for the strong moral Christian values that Mom demonstrated and taught us through her example. We’ll miss her laughter, having “girls” lunches, phone calls and so much more.

In Loving Memory

My mom passed away last night, peacefully, in her sleep at the age of 66.

It seems so surreal at this point. So unbelievable, yet it's there and it's all I can think about. And the next few days will be filled with a multitude of tasks and details to attend to.

Mom, you will be so greatly missed. We all loved you dearly and there will be a huge void in our lives.

I have so much to say, but I don't know what to put down... or how to say it. So for now, this is what it is.

Update on my Mom and me..

Apparently this round of chemo wasn't as easy as I thought. Sunday was rough again with a lot of nausea, vomiting and fatigue. Today the nausea is better but I am still extremely fatigued.

Tom is driving me to my parents' house today (as I don't trust myself to drive with this level of fatigue). Palliative care has been brought in to help take care of my Mom. She had two OK days when she came home from the hospital but hasn't been well since. It's important for me to be home at this time and be with my Mom, Dad and my sister. Please keep us all in your prayers.

Sunday Grains of Gratitude

1. I'm grateful that this round of chemo wasn't as hard as the last one. I'm feeling pretty good (9 out of 10 on the chemo scale) - what a relief! I just need to get a bit more strength back as I'm still feeling fatigued.

2. I'm grateful for the food people have brought us. We won't go hungry and I don't have to cook!

3. I'm grateful for the extracurricular activities my children can participate in. I'm thankful for the multitude of different opportunities that are available to them. On Saturdays, Kurtis is playing basketball and Ryan is participating in a music therapy class - and they both enjoy it!

4. I'm grateful for the laughter of my kids this morning as we all piled into one bed and giggled over silly things. There's really nothing like the laughter of little kids!

That old squeaky wheel...

I gave my letter to the doctor yesterday. I ended up seeing a different doctor (they work closely and my doctor was right there... they just were very busy) and gave the letter to her. But, we ended up talking about the events and what happened. She was VERY apologetic and said that never should have happened. She then gave me a number where I could have her paged directly if I wasn't getting a good response from the team. She then obviously gave the letter to the head nurse as she came and apologized to me as well. THEN... the letter made the rounds with the oncology nurses and they apologized as well (although it would have been a bit more tactful to wait until I was out of the room before distributing the letter!! LOL). The nurse who treated me also gave me her direct phone number so that I could call her if I was feeling terrible or had some questions. THEN... this morning I received a call from the head nurse checking in to see how I was feeling. I have a feeling I'll be getting great "service" now!! And I'm glad I received the response I did... at least I feel they "heard" what I was saying.

On another note...
hopefully my Mom will be coming home from the hospital today. She is getting quite anxious to come home, and I don't blame her. She's getting frustrated with laying in a hospital bed (you know they don't buy Sealy mattresses there) and the noise that generally occurs. We're thrilled she's able to come home so soon.

Now, I'm off for my afternoon nap. This chemo business makes one tired!

quick peek in

I haven't had time to write or even check email this past week as it's been another tough week but here's a quick update...

My mother has been in the hospital since last Monday evening. She was quite sick but is recovering slowly. For those of you who pray, can you please pray for my Mom.... pray for her physical strength to return but also pray for peace and comfort. Mom, I love you so much!!

I go in for chemo again tomorrow. Wow - it's been a fast 3.5 weeks! I've prepared a letter addressing my concerns and feelings that I will give to my doctor... can't wait to see his response! And I'm hoping this one goes easier! I'll be more aggressive with drinking as my cousin (who's a nurse) suggested I may have been dehydrated (which makes nausea worse). yum... gatorade!

And my baby boy lost his first tooth! I didn't even know it was loose and I don't know where it is. I just noticed a gap while we were in the grocery store this afternoon. I'm pretty sure the tooth was there this morning....Ryan isn't too interested in the fact that it's gone and hasn't expressed any interest in talking about the Tooth Fairy. Also, money doesn't mean anything to him, so what should the Tooth Fairy bring? Kurtis got $5 for his first tooth (the Tooth Fairy gets cheap on 2nd and more teeth). Perhaps she'll bring a Dora The Explorer book...

Isn't that picture up above amazing? I can't believe all those finches were there at once.

About Ryan

I've been writing a lot about Kurtis lately, so, as promised, here's something about Ryan. It's not a story but some information about Ryan. Ryan hasn't been "tagged" (something done in the blogging world) but I saw it on another blog and thought I'd use it.

3 things that scare me: Andrea Bocelli and Elmo singing one particular song on Sesame Street; sometimes loud sounds but not much else

3 people that make me laugh: my brother, my mom and my dad

3 things I love: Only 3??? But there's so much! music, swimming, dipping sauces, Sesame Street, horsing around with Kurtis

3 things I dislike: getting my nails cut, being asked to do anything I don't want to do, doing some of the homework Mommy makes me do

3 things I don't understand: why my parents don't think it's funny when I run away in stores; why I can't put ketchup on everything; why my parents won't let me get up and roam around when I'm awake...they keep insisting 5:30 am isn't wake up time yet and I have to sleep some more in their bed

3 things on the floor: 3 Halloween costumes I'm considering; about 10 books; the blankets off my bed (it's easier to jump on the bed when the blankets are off)

3 things I'm doing right now: eating breakfast (honey on bread with a glass of milk), watching Garfield the movie (yes, my Mommy is letting me eat breakfast while watching a movie at 7:30 in the morning!!) and teasing my brother (soooo much fun... he's so easy to bug!)

3 things I can't do: roller blade or ice skate - I really really want to because Kurtis does, but I haven't learned yet; play outside by myself; use a knife

3 things that best describe my personality: very friendly, very happy and a joker

3 things you should listen to: a dog barking (it means there's a dog somewhere close and you NEED to go pet it); me (I don't talk a lot but I sure have a lot to tell you); music

3 of my favourite foods: bologna; apples with creamy cucumber dressing as a dip; ketchup rice chips

3 things I'd like to learn: anything Kurtis is doing; ride a bike; use a knife

3 of my favourite drinks: juice, pop and chocolate milk

3 shows I watch on occasion: Sesame Street, Dora the Explorer and Spongebob Squarepants

Finally...making it back here...

bad bad blogger.... not keeping everyone updated...

Anyways, here's the scoop:

My last "chemo" post was on a Tuesday. I actually didn't start feeling better until the Saturday after that post. So in all, it was a 9 day haul. Thursday and Friday were good... I don't really recall Saturday and Sunday as I slept through them... and Monday through Friday were tough. I dealt with nausea and occassional vomiting the whole week. I was fatigued beyond belief too. Then on Saturday, I was better.... energy still low but MUCH MUCH better and I was no longer nauseaous. I've been feeling much better since then as well. My appetite is returning and my energy is back to its normal low levels.

I am quite ticked off with my "support" team at this new hospital. I called them 3 times when I was sick - I have been through 4 types of chemo but had never felt this bad for so long so I needed to know if this was normal or if I should get some blood work done (ie for transfusions or injections to increase cell counts). They returned my calls the first two times but the information I got was less than helpful and a bit patronizing and I never actually spoke to my doctor or his nurse. They didn't even return my call the 3rd time.

When I went to get my bloodwork done this past Tuesday, the assistant made some comment about me "calling a lot". I told her that I was feeling VERY very bad. She then commented along the lines of: "well... sometimes you just need to just bear down and get through it"... I told her it was easy for her to say! ooohh I was mad.... exactly how many chemo treatments has she gone through? I then told her I was nervous because I thought I might be getting one of the nasty side effects... she replied that "oh.. that would take much longer to happen and it wouldn't happen like that"... and I would know this how?? I don't have a medical degree! Would it have hurt them to address that concern of mine with some compassion?

The nurse taking my blood was much more sympathetic and said I definitely need to tell my doctor how bad this chemo was. I lost 10 lbs (although I've now gained 5 of that back - it was probably mostly due to fluid loss) and a week of my life. This may be par for the course for this chemo for me, but in no way did they prepare me for this... or reassure me as I was going through it. I am so disappointed with their lack of compassion and understanding - especially this assistant.

I'm going to put the facts and my thoughts on what happened on paper and give it to my doctor. This way I can deal with it unemotionally and calmly.... and he can understand what happened. I realize they are busy.... I realize they probably get inundated with phone calls from people complaining about every little thing... but that doesn't mean they still can't reply with compassion and reassurance. It's tough enough going through chemo and dealing with side effects that are scary... we don't need to be patronized or ignored as well.

Grains of Gratitude

This is a post I started on Sunday (hence the date) but never finished until today (Friday, Oct 13).

My friend, Christy, has a Sunday "Grains of Gratitude" post. I won't be doing this every week, but I thought I'd do it for Thanksgiving. So, here are some of the things I'm thankful for. (And yes, I'm incredibly thankful for my family and friends, but because that's so obvious and something that permeates every hour of my every day, I'm not going to include that in my list).

1. I'm thankful for Fall. Autumn is my favourite season of the year. I love the smell in the air. I love the crisp, cool air in the mornings. I love the crunch of leaves as you walk through them. I love putting on a sweater for the first time. I love fall colours - rich greens, golds, reds and oranges. I'm thankful for all the seasons, actually. Each one brings its own unique attributes and each is beautiful in its own way. And I'm thankful that we get to experience all 4 seasons where we live. But fall is the best.

2. Right now, I'm thankful I have some extra padding on this body of mine. This is something I never thought I'd be thankful for! I lost another 5 lbs this round of chemo. I don't want to lose weight and am working on that,,, but I'm thankful that these 5 lbs are not a big deal right now.

3. I'm thankful for the gifts Down syndrome has brought our lives. This really is a whole other post, but in short, Ryan having Down syndrome has brought me some wonderful friendships, it has taught me a lot about what is really important in raising a child, it has brought me a closer relationship with God, and most important, it has taught me about TRUE unconditional love.

4. Believe it or not, there are gifts I have received as a result of this horrible cancer. I am thankful for the openness it has brought to my relationships with my friends and family. I've never been one to tell people "I love you" (other than my parents, Tom and my kids), but it's easier now. It's easier to tell people how important they are to me and how much I think of them. And for that I'm thankful - as these people deserve to be told that! I am also thankful for the love and support I have received. It is a wonderful gift to feel connected to loving, caring people.

A quick update...

I'm still recovering from this chemo... it has knocked me flat. The first two days (Thursday and Friday) were fine. In fact, I even went out on Friday night to a pub for a short while as the "old gang" was meeting a friend who was visiting from Austria.

Then Saturday hit... I slept almost all of Saturday and Sunday. I thought I knew fatigue - but this was overwhelming exhaustion. I managed to make it out of bed on Monday for a while but still slept most of the day. Today is a bit better, but I still have virtually no energy and have mild nausea. I talked to my oncologist's office and they say it isn't uncommon and it seems (of course) that it is hitting me harder than most people. I have managed to eat a bit yesterday and today ... I know I should eat as I won't regain energy without nutrition, but it's so hard when you're nauseaous and don't have an appetite.

I continue to covet your prayers... especially during this rough one. Thanks.

How I love that boy of mine!

I seem to be talking a lot about Kurtis lately. Don't worry - more about Ryan will definitely follow!

Today is the Terry Fox Run at Kurtis's school (well, it's actually a short walk but it's the thought that counts). Instead of asking people for pledges, the children are asked to bring in a loonie or a toonie ($1 coin or $2 coin for those of you outside Canada). So I dug out my wallet last night to get each of my boys a toonie. Kurtis told me "No, I want to use my own money". I told him he didn't have to pay out of his own allowance, I would give him the money. But no, he insisted and after debating back and forth for a short while, I let him take the money out of his allowance. He reached in and grabbed $3..... He said he wanted to give a lot of money so they can do a lot of cancer research. I couldn't help but start crying...and told my little man how proud of him I was.

45 Years!!

HAPPY 45th WEDDING ANNIVERSARY to my Mom and Dad!

Today is the day they were married, 45 years ago. We celebrated their anniversary last weekend with them but I didn't want to forget them on this very special day.

We are so thankful that you can celebrate 45 years of marriage. Through the good times and bad, you have always been there for each other. You have been an amazing model for me to follow and to aspire to.

We love you very very much Mom and Dad! Have a wonderful day!

My chemo holiday ends today

I start my new treatment protocol tomorrow morning. This chemo is on a 3 week cycle as well. It's administered over 24 hours, but the good news is that I don't have to stay in the hospital. Instead, they hook me up to a pump and I can go home almost immediately. Home Care will come on Friday to disconnect me. This chemo has fairly minimal side effects - they're pretty much the same as the last chemo and again, I'm happy because apparently the nausea is pretty minimal with this one. I do have to go to Toronto to get this chemo - thank goodness for supportive friends and family!

Please keep me in you prayers tomorrow. I'm a bit anxious about this. It's been a while since I've had chemo. My hair is growing back (although there is a very good chance I won't lose what little I have) and my energy is returning. I'm dreading the low energy, the low blood counts (and watching for infections and being wary of crowds) and the general feeling of "yuckiness" that you get when you go through chemo.

A great article about my friend Nicole and her daughter, Tarenne

I met Nicole on-line when Ryan was born and have had the pleasure of meeting her twice in real life. Tarenne is an adorable little girl and they did a great article about them! Check it out...

What a great big brother!

Sometimes I really wonder about my kids - especially when my 7-year old is going through major attitude and my 5 year-old thinks listening to his parents (or any other authority figure) is optional. But then...every now and then your children say or do something that makes you realize all that teaching is paying off!

Last week, Kurtis couldn't sleep so he came to snuggle in bed with me. I was watching CSI or something else totally inappropriate for a 7 year old and quickly switched the channel. It turned out to be Supernanny. For some reason, this show got his attention and he wanted to watch it (and I admit, I watch it in between commercials of my other show as well). The children in this particular episode were horrible. Hitting, yelling, swearing.... Kurtis couldn't believe it and he made a comment something along the lines of .."we're not nearly that bad, are we?" I told him that Ryan and him were good kids - kids who just misbehaved sometimes. We talked for a bit about those kids and behaviour... I was amazed at his comments and how we were having a chat about this! Then I said something about how Ryan has been misbehaving a lot lately and how he has been hitting and not listening to what is asked of him. Kurtis's response blew me away: "but Mom, Ryan has Down syndrome... and that means it takes him longer to learn. So maybe it's just taking him longer to learn good behaviour". Not only is he defending his younger brother to me, he's also realizing why Ryan sometimes behaves the way he does. He's a very insightful boy, that kid of mine.

Summer 2006

Here are some other pictures from this past summer.

RibFest - our family tradition
















Our visit to the ROM (Royal Ontario Museum)














Kurtis being a Knight at the ROM
















Kurtis's Rabbit Catcher. Our neighbours received 2 rabbits from their grandparents - unfortunately, they kept escaping from their hatch. The kids spent hours and hours catching (and re-catching) these bunnies. We did have an actual trap, but Kurtis had fun devising this one. His creativity never fails to amaze me.
















Kathy and the boys




















Ryan learned to swing all on his own this summer:















Pouty boy















I let Ryan eat his grilled cheese in front of the TV one day. Well, he decided he didn't have enough ketchup (he NEVER has enough ketchup) and went and got himself some more. Where was I in all of this?? Posting on my blog! :)
















Tom and the boys

What's on my mind today

Nothing really... no new insights on the human condition... nothing new on the quantum physics front... In fact, it's something everybody already knows! What's on my mind today is music.

I've done a lot of driving over the past few days and have been enjoying listening to the music on my iPod. And it struck me how amazing music is. It makes us laugh and cry. It can teach and inspire. Music can be bubblegum fluff songs that have a good beat and just make you happy. It can bring you to tears over the tragedy the story tells. Music can make us want to dance. It can make us want to praise God. It creates memories like no other vehicle, in my humble opinion. Art and poetry just doesn't do it for me like music does. This is what really got me thinking.

My thinking started last week when I received a package in the mail. It was from a dear old friend from high school. She had sent me a CD of Modern English which had the song "I Melt with You" on it. My friend and I have recently reconnected and I told her how, over the years, every time I heard that song on the radio, I thought of her. And in particular, I was reminded of our Grade 12 trip to Quebec City. So I was very pleasantly surprised when I received this CD - it brought back so many memories.

So as I've been putting the miles on my car, I started thinking of all the songs that bring back memories for me. I thought I'd share just a few of the oddball memories that popped into my head:

- driving to and from my co-op job one hot summer in my 1978 (?) Pontiac Sunbird... I listened to Bruce Cockburn and Elvis Costello there and back... and over and over again. I can't hear either one of them without being transported back to that road and that car.

- Terence Trent D'Arby (remember this guy?) - I bought a tape (what I realize now was a pirated version) at a market stall in Turkey when I travelled through Europe. I also am reminded of various places throughout Europe when I listen to Eurythmics and Sting. Who needs pictures of the Notre Dame when you have music to bring pictures to your mind?

- I travelled through the Rockies when visiting my cousin in Alberta. I couldn't get any radio stations and the car I rented didn't have a CD player. So I bought one tape (Eric Clapton - Unplugged) and I listened to it probably 100 times. I can't hear a single song on that album without picturing the beautiful mountains in front of me... with gorgeous clear blue lakes beside me.

- The Statler Brothers (see my list below). My parents played the Statler Brothers a lot and the album on my list is one of theirs. It's not available on CD or vinyl anymore (I've checked). I grew up listening to this album and I still love it. Their version of "How Great Thou Art" will forever be the version to compare to. And I still listen to this regularly and am immediately brought back to sitting in front of the 3 foot high speakers in my parents living room, singing along with them.

I think that's why many people love listening to the songs that they listened to when they were teenagers. So much teenage angst and emotion... so much fun with friends....so many memories being created.... All those songs (horrible as they may be - I was a teenager throughout the 80's so enough said) bring back memories from that time.

Since my children have been born, I haven't listened to "my" music nearly enough. We listen to Raffi, Barney (ugh), Sharon Lois & Bram and Laurie Berkner to name a few. But I hope to create good childhood memories for my children with music. I hope they remember listening to Raffi as we drove down to African Lion Safari (I do!). I hope they remember dancing in the dining room with Mom as we listened to our Signing Time CDs. I hope they remember falling asleep to Sunday School Songs on their tape player.

Finally, here's a list of my favourite albums. These are in no particular order. And they are not necessarily my favourite artists. These are albums I can listen to over and over again and not skip a single song on the album.

1. Tapestry by Carole King
2. Famous Blue Raincoat by Jennifer Warnes
3. Graceland by Paul Simon
4. Self titled album by the Indigo Girls
5. How Great Thou Art by the Statler Brothers

There's a song by ABBA that says it well, although it is a bit corny. (Just as an aside, ABBA is my all-time favourite band, and yes, Tom still loves me despite this little quirk). In their song "Thank you for the music" they say,

...."And I've often wondered, how did it all start. Who found that nothing can capture a heart like a melody can? Well, whoever it was, I'm a fan".

Our game plan

We saw "the sarcoma expert" at Mount Sinai in Toronto this past week. He's not yet convinced that we need to stop the chemotherapy I was just on. Of course he didn't receive copies of my CT scans so he doesn't know for sure (as he's just going by what the doctor wrote when she asked him to see me). I'm getting the CT scans to him on Monday so he can figure out if Plan B is still a viable option for me. If that isn't possible, then we do have a Plan C - a clinical trial drug. This isn't a totally new, experimental trial. There are no placebos - everybody who is in the trial receives the drug. They've already figured out dosages and schedules for administration. The side effects are similar to most chemotherapies and the good news (for me) is that nausea is again minimal.

The one thing I can't do while on this drug is take the i.v. vitamin C therapy. It's going to be an either-or situation. I'm very disappointed in this, but I do understand why. There are some concerns that the vitamin C may interfere with the chemo. AND,,, if we do see some successes, they wouldn't know what to attribute them to - vitamin C or chemo? Right now our decision is to stick with conventional chemotherapy.

That's all for now! I'm feeling more energetic than I have in weeks and I'm off tonight to enjoy some lobster at Lobsterfest!

First Day of School

Such mixed emotions today... happy because the kids are going back (yes, I will miss them, but it's good to get back to structured days).... worried as I didn't know who their teachers were or who Ryan's aide was. I was prepared to stay with Ryan for the morning because I couldn't see dropping my child off with a teacher or aide who didn't know Ryan. The odds were that I would at least know who the aide is because there's only a few at Ryan's school and they all know him - but if it was someone who had never worked with Ryan before, I wanted to stay there to help Ryan through the morning. And the teacher was brand new to the school as she is just filling in for mat leave for the regular teacher (who we LOVE and who told me two years ago when Kurtis was in her class that she couldn't wait to teach Ryan). BUT, in the end, Ryan has the same aide as last year! We're thrilled about that! His aide is a bit overprotective of Ryan - and we'll continue to work on that - but she is AMAZING with developing his reading and fine motor skills. So, overall, it was an easy morning for Ryan.

Kurtis found his class with a little bit of help too. He's happy with his teacher and he has some of his old friends back in his class. There's 1.5 classes in his grade so there is always one split class and they switch them around regularly so he's getting to know everyone in that grade.

Here are my boys on their first day of school. Ryan had a bit of a fall yesterday and scraped the whole side of his face and neck - poor kid!

An apology from Q92

This one seems more heartfelt. I still don't think "Igor" gets it - and he probably never will.

Contact: Don Peterson, III
General Manager: WZKL/WDPN Radio
Station Apologizes for Radio Bit
ALLIANCE, STARK COUNTY, OHIO - September 1, 2006. Q92 Radio in the Canton, OH radio market has formally apologized for a contest “bit” called “Name that Tune with Mongoloid Mike”. The bit had a character voice lyrics to a popular song as if sung by a person of special needs. Listeners were invited to call in to “Name that Tune”.
“I apologize for the behavior of my on-air staff. The ‘bit’ that occurred was wrong and I am VERY sorry. It is reprehensible and will never happen again. My sincerest apology to ARC of Stark and all ARC affiliates worldwide. I would also like to apologize to the employees of the Stark MRDD, friends and associates. Also, to anyone directly or indirectly associated with anyone with a disability,” said Don Peterson, III, General Manager of the station.
Peterson continued, “We (Q92) aired an apology beginning at 7p Wednesday (8/30) evening that ran every hour and all day on Thursday. An apology appears on our web site www.q92radio.com and the DJ that aired the bit has been suspended and his pay scale has been adjusted accordingly.”
“Igor (the DJ airing the bit) is a very talented and valued employee, but this segment crossed the line. He is young and his future is bright. I know Igor has learned a very valuable lesson and obviously the segment will no longer be aired by the station,” said John Stewart, Program Director for the station.
“Plans have been put in place to partner with the Stark MRDD to better educate our listeners of the gifts people with disabilities have and how they contribute to our society. I am looking forward to that opportunity and on behalf of the station and our staff, I am sorry for any harm that came out of our broadcast facility,” Peterson concluded.

Ugh... "Mongoloid Mike" - this is unbelievable

A radio station outside Canton, Ohio (Q92.5 FM) is doing a regular contest called, "Mongoloid Mike". The DJ has an individual sing a song as if he has mental retardation and then asks listeners to guess what the "Mongoloid" is singing. If you guess the correct song, you win a prize! Apparently this has been airing for some time now, but only recently has the "developmental delay community" been made aware of it. In the past week, some people have written/emailed/called the station itself but the station didn't seem to care. In fact, the DJs thought that some of the calls and mail were funny. ARC of Ohio also reports that when they responded to the station with a complaint, the DJ told listeners to call the ARC and interrupt their business because they are a bunch of "nut cases".

However, as more and more people complained, and went to their sponsors and complained, the station took notice. The good news: after a blitz by concerned parents and organizations, the radio station indicated it will be taking the segment off the air and will be issuing an on-air apology today. However, if the on-air apology is anything like the on-line apology, I'm not too hopeful. In any event, this nasty piece is off the air.

The on-line apology can be found at: http://www.q92radio.com/ This apology just has a very hollow feel to it... it almost seems like one of those apologies that start "I'm sorry if you feel that way"... it's no apology at all! "We'd like to apologize for any harm done" - no apology for "we did the wrong thing" or "we were insensitive jerks".... "It has been pointed out to us that this is not the proper forum" - ummm... so what IS the proper forum? I'd like to know exactly where is the right place to go to hear jokes like this.

I am so horrified that this kind of stuff still happens - but not really surprised. Jokes about people who are mentally retarded still happen regularly. Just watch the Comedy Network for a short while and eventually you'll see someone making fun of the intellectually challenged. This was just so blatant though.... so obviously designed to make fun of people with developmental disabilities. What concerns me is that the people at the station, particularly the DJ, don't see what's wrong with this. People would "get it" right away if it was a racial slur... call in and pretend to be of African descent.. we could call it "N**ger Name That Tune". But they don't see it the same. And that is very sad.

20/20 Segment on Carrie and Sujeet's wedding

http://abcnews.go.com/2020/Video/Video/videoPlaylist?id=2358933&start=bW9tZTIza2puY0BhZGVscGhpYS5uZXQ=&end=Zm9yZXZlcg==

This couple is truly inspirational. I'm also very impressed with 20/20 - they did a great job on this segment.

The light is returning

I'm feeling a bit better today - emotionally and physically. I've had some time to process this news and deal with it. I think one of the hardest things is waiting for the next steps. Not having a game plan in place when we heard the news made it worse as there didn't seem to be anywhere to go. But, we WILL have something in place. There are other options.

I have also been incredibly encouraged by the support of people who've emailed, posted on my blog, called, dropped off a book or cookies (I have a wonderful cookie fairy who delivers fairly regularly). Your support means the world to me. Even if you don't know what to say, and honestly, I totally understand how hard it is, just the fact that you're thinking and praying for me lifts me up.

I also met with my Pastor and his wife yesterday and was greatly encouraged by their wisdom and honesty.

Please continue to pray for healing, wisdom for the doctors as we map out a game plan, for strength for Tom and me, and for the gift of being able to find enjoyment in every day.

I wasn't sure how to title this post... so I left it blank. How to summarize in two words how I'm feeling right now? Just can't do it.

We found out the results of the CT scan I had done last week, and again, they weren't good. The tumors have not shrunk at all. Nada... nothing. And the cough I developed last week isn't due to a cold or asthma, it's because of fluid building up in my lung again.

So Plan B is done too. My doctors here are going to contact the expert again at Mount Sinai to figure out next steps. Right now, I don't know what that will be... perhaps another type of chemo or perhaps participation in a clinical trial (new chemos). My regular oncologist was on holidays so we had a different one and she's not a sarcoma expert and hadn't checked with the Mount Sinai doc before. Hopefully she'll be able to contact him this week so we can figure out what we do next.

On a more positive note, the tumors haven't grown. This may be due to the chemo keeping them in check or it may be because the tumors are incredibly slow growing. We don't right now which one it is.. but I guess we'll find out once we stop chemo for a bit. I pray it's the second actually as that gives us more time to find something that will work.

Since it seems that conventional medicine is failing me right now, I'm looking towards unconventional options. I'll be starting intravenous vitamin C therapy in the next week or so with a naturopathic doctor in Toronto. The Canadian Medical Association Journal published an article recently about some successes with i.v vitamin C. Of course, there is no guarantee - but then there was no guarantee with chemo either. And the good thing is that there is no down side - no negative side effects. Even if it doesn't reduce the tumors, the benefits of increased energy and a decrease in pain will make it worthwhile for me.

It's been a very very tough couple of days. When I decided to do this blog, I promised myself that I would be honest. That isn't to say that I would hang everything out there - it is the internet after all and not everyone needs to know ALL the details. But I said that I would be honest with what I'm going through and generally, what I'm feeling. So... here it is...this is the toughest thing I've ever been through. I'm feeling hopeless and scared stiff. Take it one day at a time as my sister reminded me. Right now that's all I can do. I wish I had some fitting Bible passage or a quote from a book or devotion that expressed everything I'm feeling right now. I've never been good at recalling quotes from any source (I can't even tell jokes properly :) ) I know I've read many inspirational things over the past 8 months, but right now I'm drawing a total blank. The only thing that comes to mind is the well known Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." No matter what the future holds, I know that God is with me and is holding me close.