As you can tell, termination of children with DS bothers me deeply. Why? Why should I care what someone else does? After all, isn't it their lives, not mine? Most of the time, I don't care what other people do - it is their life to live, not mine. Even though I'm a Christian, I do not believe I have the right to push my views on you. And believe it or not, many people who have a child with DS are pro-choice and support abortion rights. Many are not Christians and many do not have any religious beliefs at all.
But what I do have is first-hand experience. I have knowledge that most people don't have - I know what it is like to live with a person with DS. I know what is involved in raising a "disabled" child. I know the heartaches, the work involved and the stress. I also know the incredible joy, love and rewards. I know that life pretty much goes on as normal. This is what I wish prospective parents would receive - information from someone who has been there, done that. Instead of just receiving technical, often out-of-date information from a technician or doctor.
So why do I care? Because of Ryan. Because I do not want him to feel devalued... I don't want him told that he is "less than". How do I explain to my son, who I love so much, that society thinks his life is worth less than everyone else's? How do I explain that society is working very hard at eliminating people like him? How do I teach him to deal with some, a potential employer perhaps, who thinks he never should have been born? It's not something most people ever have to deal with. But try thinking about it from Ryan's point of view.... and perhaps you'll see it from my point of view too.
But here...here is an article that says it so eloquently.
A wonderful person I met on the internet, Betsy, wrote this piece. Here is a link to her blog: http://bits-of-betsy.blogspot.com/. This piece is amazing and speaks directly from my heart (even though I didn't write it).
WHY IT MATTERS
I think that what we say on the internet has as great an impact on others as our real life words do. If you think about your support system since your child has been born, wouldn't you rate this vehicle of communication very high? When you wanted to learn more about Down syndrome, didn't you go to the internet? Isn't that where the acceptance really started for you? It did for me, anyway.
This whole issue that we discussed the last two weeks became a debate on another website I visit. In essence, it turned to one of my friends saying that she would without a doubt abort if she found out her baby had DS. As the debate continued, she said it wasn't directed at anyone, and didn't effect anyone except her. She knew that I was posting and reading the thread. For a few days, I didn't answer it, feeling as you do, that my words were not going to make a change. Anyway, I ended up answering it, and I'd like to post a part of it here. I think it will explain what I'm talking about. Its really long, sorry.
Here it is: You can’t say that your opinion does not affect my family or my child. The opinion that a baby with DS is disposable, and can, and perhaps should be aborted, greatly impacts my child’s life. It impacts her every single day. It impacts people’s opinions of her. It impacts their first impression of her. It sometimes impacts the medical care she receives. It impacts her ability to be educated with her peers. It impacts her classmates, who perhaps have been told that her Mom didn’t have a choice, or didn’t know, or that ‘nowadays, doctors are able to take care of that before the babies are born.’ It impacts her sister, because when Dakotah was 3.5 years old, and showing off her little sister to her friend Michael for the first time, Michael said, “Daddy says Paige is a freakazoid.”
And you know what….it has greatly impacted me this weekend. I have shed so many tears over this thread that I have been nauseous all weekend long. It greatly impacted me, when I took my beautiful daughter Christmas shopping today, and for the first time in a very long time, spent half the time wondering if people were looking at her in pity or disgust.
It affects my posting here, because I feel very vulnerable and hurt by your words. I feel very hesitant to talk about my child, to share her pictures, or her newest achievements, because it makes me stop and wonder if people are looking at her and thinking, “Thank GOD that’s not MY child…”
It affected me a great deal this weekend, because I wanted to take my sweet baby girl and curl up on her bed with her, and protect her from the great big world who has such differing opinions of her worth. I wanted to hold this time in her life still forever….because she knows nothing but love and acceptance now. She does not know that science is working furiously to annihilate people like her…and that women are rushing to sign up for that knowledge. It affects us a great deal, because she must face that prejudice every single day – she will be the one who will have to be taught way too soon what words like ‘retarded’ and ‘retard’ and ‘mongoloid’ mean. My other daughter will have to deal with peers who will argue their desire to abort any child who has Down syndrome, and wrestle with the love for her sister over the love for her friends. So, don’t tell me it doesn’t affect me.
The view that babies with DS are disposable is what makes people tsk tsk and move away from me in a store, or makes them shuffle their kids away before they ask any questions (which I would have been happy to answer). That view is what makes the market on prenatal testing so great---instead of spending money trying to cure such fatal things as Cystic Fibrosis, or Tay Sachs disease, research spends all their time on the current ‘hot topic’ – Down syndrome. By the way, this is something you’ll be very interested to learn. Scientists are now discovering that perhaps kids with DS can be identified prenatally by a missing bone in the nasal area. (Annette's note - already discovered) This makes it all so much neater, and easier, because you can abort even sooner, and how much more convenient is that? Oh, and the added bonus is that you won’t need an amnio anymore…so there’s no chance of risking the life of a ‘normal’ baby—we know how tragic killing THAT baby might be. So, if they get really, really good enough, maybe they can eradicate every human being with an extra chromosome. And of course, with so many women blindly following their doctor’s ‘professional’ advice, it often doesn’t take much more than a sorrowful eye, or a sympathetic pat on the back, or a slight suggestion that perhaps its ‘better’ to just abort, to make a woman just learning a very frightening thing about their child decide to take the easier, tidier route out.
Of course, let’s not forget the financial aspect of it---it's neater, cleaner, easier to abort than it is to risk medical bills for a child with DS…after all, what will they ever give back to society? My child’s medical bills (ironically, NOT related to Down Syndrome) probably number in the millions of dollars. And perhaps she will never be a doctor or lawyer, or President who can ‘give back’ all that money. But most likely, she will never be in jail for killing her boyfriend, or a mother of 10 kids she can’t care for. And there is no price tag for the beautiful lessons she has taught me. Each of us should aspire to be that great of a teacher in our life times, and should perhaps use that as a scale for ‘success.’
It ticks me off, because people hold me on a pedestal…’Maybe you can handle it, but I couldn’t…” Of course you could…we can do anything we want, with the proper resolve, determination, and most of all love… I’m not special, I am no better a mother than any of you here. I’ve had no less problems because I have a child with DS…I’ve had to deal with everything each of you has in my adulthood---losing someone I love, financial problems, marital strife, etc, etc. etc. I didn’t get an instruction manual when Paige was born to me….what I did get is a clear perspective of my ability to love my child unconditionally. We each say that we could do that, but I doubt many of you have had to analyze that statement as I have. I feel badly that some of you may never understand how empowering it is to really, really learn what loving your child unconditionally means.
Perhaps you can offer some excuse for aborting that I haven’t already heard. Because none of the ones I’ve ever heard make any sense at all.
Here are the ones I hear the most, “It would affect my marriage, my husband could never accept it, couldn’t handle it.” My response: Then what the heck are you doing having children with a man who couldn’t love your children unconditionally? Why would you want to be with someone who thinks he has the right to love his family based on their level of perfection in his eyes? What are you going to do when he deems you no longer perfect enough?
“I have to think about my other kids too…” My response: That’s a great idea. Think about the wonderful lessons in compassion and acceptance you will be teaching your children. Think how secure they will feel, knowing that they are loved for who they are, not how well they score on a test, or how successful they become. Think about the wonderful lessons they will learn about the importance of other people, no matter who they are….they will learn that each of us is deserving of being loved and cared for, and that each of us is a very important part of our family and community.
“Kids with DS have heart problems, ear infections, poor vision, respiratory infections” blah, blah, blah, blah, blah." So?? Congenital heart defects are the #1 birth defect among children. I think that statistically, as many as 30% of ALL children are born with some sort of heart defect. Yet, very few of us are being prenatally screened for those, and being offered up a quick abortion because of it. And can any of you really say you would abort your child because s/he might get more colds than other kids?
“My child will get picked on.” Guess what…the reason your child will be picked on is because people believe that kids with DS are disposable…and if you decide you will not be one of those people, and surround yourself with other who believe that way, then your child will blossom. And you know what….kids get picked on for buck teeth, and big ears, and googley eyes…and not one of those kids is up for the abortion chopping block.
“You only see the people with DS that are doing really well…you don’t see the ones who aren’t.” Oh really? Well pray tell, where are the ones who aren’t doing so well? News flash…they are living and learning with their families. Paige is one of those ‘not doing so well’ kids as far as development goes….she does not walk at almost five. She does not talk. She does not self-feed. Sometimes, when people ask me what ‘new’ things Paige is doing, I have to search long and hard to come up with the tiniest thing. None of that matters one hoot in my love for this child, or her worth as a human being. Sure, its inconvenient to have to transport her right now. Sure, I had to adapt my life to learn to communicate with her. But man, I sure hope someone would do the same for me. ‘cause I wouldn’t have wanted to be deemed unworthy either.
When I was prenatally diagnosed before Paige was born, I was told she would die before or immediately after birth. I spent three months planning a funeral more than a nursery. I prayed, and bargained, and begged for one minute…just one minute to see my child alive. When I had one minute, I prayed for 10 more. And when those 10 were done, I realized that a lifetime will not be enough time to know this person who has blessed my life. Take what you want from this post…I needed to post it because someone reminded me that no one should take my words from me…especially in something this important. ~~~~~~~~ And that's it....some of it a bit angry and frustrated at someone who has known me for a long time, and who would still so quickly abort, but most of it about passion for our kids. Betsy
Friday, January 12, 2007
Thursday, January 11, 2007
Yeah for the CDSS!
http://www.canada.com/topics/bodyandhealth/story.html?id=00d6fd8a-5b73-4d05-b988-0858a9536cc8&k=54074
Anyone who knows me knows how much this prenatal testing bothers me. It's not the testing in and of itself that bothers me. Like most technology, it has its uses and can provide a lot of good. However, in this case, what it is used for is not good. Over and over again, the testing is used solely as a way to diagnose in order to terminate. And that reeks of eugenics to me.
While driving in the car on Tuesday, I was listening to Talk Radio (am 1010 for those of you in Southern Ontario). The talk show host had found himself in a bit of "trouble" for a comment he had made the day before about feral cats. Apparently, there is a bit of trouble with feral cats in some of the areas of Toronto. These cats have become wild but people leave food out for them. So, these cats continue to thrive and breed and multiply....they are noisy, disease-ridden and smelly. So this announcer suggested that they be rounded up... the ones that could be adopted out (ie are domesticated) be adopted out through the Humane Society and the ones that couldn't be adopted out (ie could never be domesticated) be euthanized. Well... you think he'd advocated World War 3 from the response he got. The phone lines at the TV station were flooded... the emails at the radio station were overwhelming....the calls to the radio station the next day took over! One by one people called in to say what a horrible human being he was to even suggest such a horrible act.
Then, in the afternoon, on the same radio station, there was a small topic about this prenatal testing and the question was raised "are we on the road to eliminating people with Down syndrome?" Unfortunately, I wasn't able to hang around for the discussion, but having heard discussions like this in the past on this station, I know the callers - most of them are parents of chlidren with DS advocating for their kids. But, no... the phone lines aren't jammed. in fact, it is a rather quiet discussion.
I couldn't help but be struck by the irony of this. We are strongly advocating not to kill feral cats, but it's ok to kill a human being simply for not being "perfect"? oh... don't get me going!
Believe it or not, as a someone who was always pro-life (or anti-abortion, I guess), I have come to realize there is a need for legal abortion. I still can't agree with it, but I do think there should be some choice and I don't want to end up back in the ages of back-street abortions. But what I can never support is aborting a WANTED child.... a child that can be cared for.... simply because it carries an extra chromosome. And what continues to amaze me is the one-sidedness of the medical establishment. Sure, there are doctors and technicians that will tell the prospective parents that it is OK and provide them with accurate information. But more often than not, the medical establishment assumes the parents will abort. They provide doom and gloom scenarios and never even offer to put these people in contact with parents who live with a child with DS. I am terrified that in 50 years there will be very very few people with Down sydrome walking around. It makes me sad for Ryan. But more importantly, it makes me very sad for our world.
Anyone who knows me knows how much this prenatal testing bothers me. It's not the testing in and of itself that bothers me. Like most technology, it has its uses and can provide a lot of good. However, in this case, what it is used for is not good. Over and over again, the testing is used solely as a way to diagnose in order to terminate. And that reeks of eugenics to me.
While driving in the car on Tuesday, I was listening to Talk Radio (am 1010 for those of you in Southern Ontario). The talk show host had found himself in a bit of "trouble" for a comment he had made the day before about feral cats. Apparently, there is a bit of trouble with feral cats in some of the areas of Toronto. These cats have become wild but people leave food out for them. So, these cats continue to thrive and breed and multiply....they are noisy, disease-ridden and smelly. So this announcer suggested that they be rounded up... the ones that could be adopted out (ie are domesticated) be adopted out through the Humane Society and the ones that couldn't be adopted out (ie could never be domesticated) be euthanized. Well... you think he'd advocated World War 3 from the response he got. The phone lines at the TV station were flooded... the emails at the radio station were overwhelming....the calls to the radio station the next day took over! One by one people called in to say what a horrible human being he was to even suggest such a horrible act.
Then, in the afternoon, on the same radio station, there was a small topic about this prenatal testing and the question was raised "are we on the road to eliminating people with Down syndrome?" Unfortunately, I wasn't able to hang around for the discussion, but having heard discussions like this in the past on this station, I know the callers - most of them are parents of chlidren with DS advocating for their kids. But, no... the phone lines aren't jammed. in fact, it is a rather quiet discussion.
I couldn't help but be struck by the irony of this. We are strongly advocating not to kill feral cats, but it's ok to kill a human being simply for not being "perfect"? oh... don't get me going!
Believe it or not, as a someone who was always pro-life (or anti-abortion, I guess), I have come to realize there is a need for legal abortion. I still can't agree with it, but I do think there should be some choice and I don't want to end up back in the ages of back-street abortions. But what I can never support is aborting a WANTED child.... a child that can be cared for.... simply because it carries an extra chromosome. And what continues to amaze me is the one-sidedness of the medical establishment. Sure, there are doctors and technicians that will tell the prospective parents that it is OK and provide them with accurate information. But more often than not, the medical establishment assumes the parents will abort. They provide doom and gloom scenarios and never even offer to put these people in contact with parents who live with a child with DS. I am terrified that in 50 years there will be very very few people with Down sydrome walking around. It makes me sad for Ryan. But more importantly, it makes me very sad for our world.
Monday, January 08, 2007
Odds'n'ends
SCENES FROM OUR HOLIDAYS:
At "Sparkles in the Park"... Kurtis designated this CSI Display as "totally inappropriate for Christmas"
Tom's new toy.... hey, doesn't everybody NEED a zamboni? In reality, we have a park a VERY short way from our house that has an ice rink every winter (unfortunately, not this winter so far) and it's maintained by the neighbourhood... Tom got tired of shoveling snow and figured this way would be much easier. Needless to say, Tom is really really really hoping for cold weather!
Santa Kid.... Kurtis dressed up as Santa and surprised Ryan. Ryan actually sat on his lap while Kurtis asked him what he wanted for Christmas.
Howdy Pardner...
The boys and us at Uncle Andy's 40th Birthday Bash. Can you guess the theme? I didn't dress up as I wasn't even sure I'd be able to attend as I just had chemo a week ago. BUT... this round has been so easy... minimal nausea for only a few days and the fatigue hasn't been overwhelming so I was able to go to the party for 2 hours.
At "Sparkles in the Park"... Kurtis designated this CSI Display as "totally inappropriate for Christmas"
Tom's new toy.... hey, doesn't everybody NEED a zamboni? In reality, we have a park a VERY short way from our house that has an ice rink every winter (unfortunately, not this winter so far) and it's maintained by the neighbourhood... Tom got tired of shoveling snow and figured this way would be much easier. Needless to say, Tom is really really really hoping for cold weather!
Santa Kid.... Kurtis dressed up as Santa and surprised Ryan. Ryan actually sat on his lap while Kurtis asked him what he wanted for Christmas.
Howdy Pardner...
The boys and us at Uncle Andy's 40th Birthday Bash. Can you guess the theme? I didn't dress up as I wasn't even sure I'd be able to attend as I just had chemo a week ago. BUT... this round has been so easy... minimal nausea for only a few days and the fatigue hasn't been overwhelming so I was able to go to the party for 2 hours.
Saturday, December 23, 2006
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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Wednesday, December 20, 2006
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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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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Tuesday, December 19, 2006
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.
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.
Sunday, December 17, 2006
...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/.
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/.
Monday, December 11, 2006
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".
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.
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.
Tuesday, December 05, 2006
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.
Monday, December 04, 2006
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.
Photo Sharing - Upload Video - Video Sharing - Share Photos
Photo Sharing - Upload Video - Video Sharing - Share Photos
Photo Sharing - Upload Video - Video Sharing - Share Photos
Photo Sharing - Upload Video - Video Sharing - Share Photos
Sunday, December 03, 2006
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.
Photo Sharing - Upload Video - Video Sharing - Share Photos
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.
Photo Sharing - Upload Video - Video Sharing - Share Photos
Tuesday, November 28, 2006
"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
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
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
Monday, November 27, 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?
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?
Wednesday, November 22, 2006
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.
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.
I'm surfacing... and am working on keeping y'all updated. I should have another post tonight.
Friday, November 10, 2006
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! ;)
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.''
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.''
Wednesday, November 08, 2006
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!
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!
Friday, November 03, 2006
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:
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!
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.
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.
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