Yesterday, Tom and I were at a wonderful event...a garden party held as a fundraiser for our local hospital. It is filled with amazing food and drink from various local restaurants and stores. Anyways, I ended up talking to someone I had never met before. We got on the topic of children and how old mine were etc. Normally I don't mention that Ryan has Down syndrome as it's really not relevant, but I did this time - "our youngest son, Ryan, has Down syndrome". Her response was one that I think is probably fairly typical: "oh,,,, I'm so sorry". I immediately replied, "don't be sorry, there's nothing to be sorry about. Absolutely not - he's wonderful". To her credit, she took my response and immediately said, "yeah, why would I say I'm sorry??".
Afterwards I got to thinking about this short exchange. I think views like hers are more the norm than not. I know that before I had Ryan I would view families who had a disabled child with a small amount of pity. That was then. I know better now. BUT...how can I work to change the views of other people so that they don't think what this woman and I thought? What can I do so that, when I inform someone that I have a child with Down syndrome, that they just continue the conversation as if it's a non-issue? A huge part of it is living our lives as full participants in our various communities. We won't hide.... we'll treat Ryan like we treat Kurtis... and that means regular swimming lessons, participation in church, eating out at restaurants, etc etc. In other words.... leading a regular life. People will see that individuals with Down syndrome can lead a regular life.
I remember the first time I saw someone with Down syndrome smoking. I have to confess that my first reaction was that someone should take those away from her. And then I gave myself a mental kick in the butt and realized that she is fully entitled to smoke if she so wants - she's an adult and can do what she wants - and that includes smoking. There are so many other things we can do too. Raise awareness by having pictures and stories in the papers. Have people with DS working in places where they see a lot of people (ie grocery store). And very importantly, work with the medical profession - the ones who are, unfortunately, the first line of information to prospective parents AND who unfortunately, mostly have an outdated doom-and-gloom view of people with DS without even knowing anyone with DS. And then today, I read this article.
I know I'm copying a lot of articles here, but I think they are worth the read. This speech was presented at the NDSC Conference on August 5, 2007. It is a long article, but well worth it.
http://www.patriciaebauer.com/2007/08/23/stand-tall/
STAND TALL
by Patricia E. Bauer
Long ago, my husband and I thought we had the world figured out. We had good educations, good jobs, nice offices, even preferential parking spaces. We thought we had it made.
Then, a little more than 23 years ago, Margaret showed up, providing us with the most important learning experience of our lives. Our first order of business was trying to figure out this whole Down syndrome thing, of course, but ultimately it dawned on us that the effect of an extra chromosome here or there was the least of what we needed to learn. Over time, we came to reevaluate our core values, and to understand that much of what we had been led to believe – about what makes a family happy, what makes a life worthwhile — was misguided.
I’m sure I’m not alone in saying that for the first few years of Margaret’s life we worked very, very hard to do everything we could to help Margaret become “normal.” It was only later that we realized what most families get to eventually: that “normal” wasn’t the point. Our real goal was to help Margaret be Margaret. It was only by letting go of the concept of normal that we were able to see our daughter as the delightful person that she truly is, not obscured by some burdensome word, some arbitrary social ideal that had nothing to do with any of us.
Like it or not, though, we have to admit that we as a nation have been sold this concept of “normal,” and we’ve fallen for it. Somehow, while the disability community was out of the room, the world of medicine established a diagnosable standard called “normal” and now we’re all trying as hard as we can to achieve it.
Starting this year, it is recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. All pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge — women to terminate their pregnancies, which is in fact what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally.
Let me just underscore that, to make sure we’re all on the same page. Studies have shown that nine out of ten pregnancies in which there is a prenatal diagnosis of Down syndrome end in termination.
This is a painful topic to talk about, I recognize, and it’s made more painful by the very ironic fact that these recommendations have come at a time when people with disabilities have more legal protections than ever before.
Not only that, people with Down syndrome are in general healthier and having a better quality of life than at any time in history. This is the first generation to benefit from early intervention, inclusion, improved health care and better educational opportunities, and they are blowing up yesterday’s old data. Increasingly, they’re completing high school, getting jobs, living more independently. Some are driving; some are getting married. Imagine: I met a woman with Down syndrome the other day who was part of a relay team that swam the English Channel. These are people who are living full lives and making contributions to their communities.
We laugh at our house every time we see some article in the media about how people are “suffering” from Down syndrome. Margaret, my daughter, has just moved into her own apartment with a couple of her girlfriends. She’s sure not suffering. And just the other day, self-advocate Audrey Wagnon delivered the same message in her speech to the full NDSC convention. Here’s how she said it: “I’m having the best life ever!”
But – oddly — we live in a time in history in which the faces of our loved ones have come to symbolize something in the public mind that is very much at odds with our life experience. People see our family members and think what they’ve been taught to think. They think our children are tragedies. Yet we who are privileged to live with them know that, despite some of the frustrations of day-to-day existence, our lives are also filled with possibility and love and joy.
So why the disconnect between our lives and society’s vision of them? Perhaps we should start by acknowledging the obvious: prejudices, biases and fears of disability run deep in our society, nourished by years of history and reinforced among other things by ignorance, gaps in the healthcare and educational systems and negative media images.
Physicians tell me that women want prenatal screens because they are very fearful of having a child with a disability.
Among other things, they fear that the financial burden would crush them or that they wouldn’t be able to get a decent education for their child. They’re afraid, too, that they would be held accountable for having a child with a disability, and that there would be people who would blame them for failing to prevent the birth of such a child. They are afraid of stigma and ridicule. Sadly, these are not unreasonable fears.
But that’s only one piece of the puzzle we face. Here are few more:
– Puzzle piece number two. Prospective parents are suing their doctors if they don’t get a so-called “perfect baby,” leading to skyrocketing insurance costs and doctors who want to run every test possible to prevent litigation. Not long ago, a Florida jury awarded a couple more than $20 million because their doctor failed to warn them that their son would be born with a genetic syndrome.
– Puzzle piece number three. Physicians, nurses and other health care providers are giving their patients negative, outdated, biased or incomplete information about Down syndrome, depriving them of the ability to make their own informed choices based on accurate information instead of negative stereotypes.
– Puzzle piece number four. Financial demands on doctors mean they have to process more and more patients in less and less time, giving them scant opportunity to discuss tests and deliver diagnoses in a sensitive, thoughtful compassionate way. Women are reporting that these rushed interactions feel coercive.
– Puzzle piece number five. Medical schools don’t offer clinical training about people with intellectual disabilities.
– Which brings us to puzzle piece number six. Let’s not forget that prenatal diagnostics is a profitable industry, in which hundreds of millions of dollars are spent each year. A substantial portion of that cash flow swells the accounts of the obstetricians and gynecologists who see pregnant women. By contrast, I should point out, the amount of money spent on research into treatments and processes to improve the lives of people with Down syndrome is minimal at best.
All these factors, I’m sorry to say, have combined to create an atmosphere in which there is a growing presumption that pregnant women should be tested for Down syndrome – a presumption, stoked by ignorance and stereotypes, that children like ours are expendable, that children like ours are without value, and that children like ours impose an unwanted cost on society. Somehow, without our knowledge or participation, a cost-benefit analysis has been applied to our children and they aren’t measuring up.
You may be wondering: How did we ever get to this point?
For the purposes of this conversation, let’s start back in the ‘50s. Most of you won’t remember it, but people with disabilities then had not been granted the right to go to public school. Doctors didn’t think that people with intellectual disabilities were capable of learning, and routinely recommended that they be sent away to institutions. During the ’50s in this country, an estimated half a million children were institutionalized, often under the most abusive and degrading conditions.
So when a French geneticist named Jerome Lejeune discovered the extra 21st chromosome that causes Down syndrome in the late ’50s, his discovery caused many to hope that treatments would soon be found. As you of course know, that didn’t happen. A far more straightforward task, from a scientific point of view, was the development of tests that could be used for prenatal diagnostics. Those tests really took off after abortion was legalized in 1973.
Doctors and scientists took a public role in recasting the definition of healthy fetuses and legitimate abortions, and what were called “therapeutic” abortions came to be regarded as a legitimate and desirable way to prevent or eliminate Down syndrome. It was in some ways just an accident of history that these so-called therapeutic abortions became well entrenched before our society was able to see what individuals with Down syndrome, given a chance, could do.
It is, as author Michael Berube has written, a bitter paradox: even though we have barely begun to explore the ways in which we could include people with disabilities in our society, we are devoting precious time and resources to developing better ways of spotting and eliminating these people before they are born.
Particularly troubling is the fact that this shift – to preventing Down syndrome by attempting to prevent the births of children who have it – was largely engineered by members of the healing professions, the very people who are charged with the responsibility of protecting vulnerable populations.
So now we are left with a harsh reality indeed. The implicit message the American College of Obstetricians & Gynecologists seems to be sending is this: even though racial, cultural and ethnic diversity are valued and supported in our society, genetic diversity is not. It seems that it’s more important to be “normal” than to be “human.” Or maybe we should view this as less a philosophical discussion than a pragmatic one. For OB/GYN’s, it’s better for business to deliver only babies that the medical profession calls “good outcomes.”
Somehow, along the way, the professional organization representing these doctors has failed to notice that they have embarked upon the elimination of an entire class of people who have a history of oppression, discrimination and exclusion.
I know we empathize with today’s young parents. Their finances are limited. They have grown up in an era of fear, taught to be afraid of strangers and wary of the strange. In the obstetrician’s office they trade their fears for the illusion of control — but in the process they are giving away much of what defines America at its best: a society that assumes responsibility for those who are vulnerable, a society that accepts those who are different, a society marked by generosity, liberty and freedom of thought.
These may sound like abstract concepts, but they’re not. The consequences of all these uninformed individual decisions, made in the privacy of the obstetrician’s office, are being played out before our eyes every day. We see them when our family members are the subject of unwanted stares. When people talk about how someone “had” to get rid of a pregnancy because it wasn’t perfect. When people tell us that special ed kids “cost too much.” When people ask us, sometimes in ways that seem unfriendly, whether we had “the test.” Or even why we didn’t have “the test.” When medical professionals look at our beloved children and say “that shouldn’t have happened.”
Let’s face it: people with Down syndrome have a catastrophic PR problem. The doom and gloom talk has gone largely unchallenged for far too long.
It gives me great pain to tell you all this, because I know you love your family members as much as my husband and my son and I love Margaret. I know, too, that you share our vision that people with Down syndrome are valued, contributing and vibrant members of our families and our communities.
We come together at reunions like these to affirm the value of our family members’ lives, secure in the knowledge that their extra chromosome is NOT the most important thing about them. They belong; they dream big dreams; they contribute; they deserve respect. What makes their lives difficult is not their genetic makeup; it’s the uninformed attitudes of others.
We know this, of course, but it’s not enough for us to share the message with one another. We need to put it out where all the world can see.
Let’s start with what we can do as individuals. As I’ve gone around the conference, I’ve heard about some great things that people are doing in their own communities. Things like:
–Helping to educate the doctors and genetic counselors in their area by visiting their classes or professional meetings.
–Building relationships with hospitals, and talking with families who have a fresh diagnosis.
– Monitoring their local news media, and holding them accountable for their coverage and their use of language about people with disabilities.
These are great steps, but let’s not stop there. Let’s dream even bigger.
It’s time for us to insist that our organizations advocate forcefully on behalf of people with Down syndrome in ways that are targeted to reach decision-makers, to reach medical professionals, and of course to reach the general public. Here are some of the things we need to do.
1. We need to provide disability awareness training and accurate information directly to obstetricians, to gynecologists, and to the professionals who assist them. They need to hear the nuanced, compassionate message that is at the core of diversity and human rights: all people have value and dignity and are worthy of celebration. We’ve told them this nicely. Now perhaps it’s time to turn up the volume.
2. We need to put out lots and lots of well-designed materials that will teach doctors how to discuss prenatal screening and diagnoses with their patients. Senators Kennedy and Brownback have recently reintroduced their bill on this topic. Whether it’s this bill or another one, we need to find a way for doctors to get the materials they need.
3. We need to improve medical school curriculums, which include almost nothing about children with disabilities.
4. We need to hold publishers accountable for the editorial content of their pregnancy handbooks. Take a look in your local bookstore, and notice what those books say about our young people. If they carry anything at all, it’s more than likely a cold, clinical list of symptoms and diagnoses, guaranteed to strike fear in the heart of any pregnant woman. We must change this.
5. We need to use technology to convey our message. Where does your average 20-or 30-something look for medical information? Right. The Internet. If we truly want to help people make informed decisions, we need to get involved in the Internet in a big way, both in print and in video. Our content needs to be useful and modern.
6. We need to enable prospective parents to see that people with disabilities live good lives, and that they have warm, sustaining relationships with their families and friends. Presently, that information is only coming to them anecdotally, if at all. Imagine how different things would be if people could be referred to a website that allowed them to click on videos that would show them footage of people with Down syndrome, of all ages and ability levels, going through their daily lives. America’s teenagers are communicating actively through Youtube – why shouldn’t we?
7. We need to speak up to challenge the old stereotypes about our family members and ourselves. We’re not victims. We’re not heroes. We’re just ordinary people sharing slightly extraordinary lives with people we love and who love us.
I talked earlier about people who sometimes ask us about whether we had “the test.” Here’s what I think they really want to know. Did you, or would you, choose this person to be in your family? Let me tell you my answer to that question.
When my husband and I decided to have children, we were kids. (Okay, we were in our early 30s. But viewed from a distance, that sure looks young now!) Sure, we had lots of education, degrees and experiences, but there was a lot we didn’t know:
– We didn’t know what it meant to be a parent.
– We didn’t know that there was no such a thing as normal.
– And we sure didn’t know that that it was possible to have a happy, thriving, loving family with a child who was not the same as everybody else’s.
Fortunately for us, we have learned a thing or two at the University of Margaret since then. We learned
– No child is “normal” — and neither are we;
– We, like all parents, need to get over the notion of our children meeting some arbitrary standards of perfection that we couldn’t possibly achieve ourselves; and
– We choose our children, and each other, over and over, every day of our lives.
In short, my husband and I have been privileged to share our lives with someone who is a constant reminder of some essential truths: the importance of family, the strength of unconditional love, the dignity and value of vulnerable people, and the fact that IQ points are not a good predictor of personal happiness or quality of life.
As we all ponder how to carry these messages to the outside world, as we get ready to leave the safe haven of our reunion today, let’s remember that we are all stronger together than we are separately.
But talking among ourselves, while important, won’t get the message out. We have to communicate directly with those not in this room.
A couple of years ago, a newspaper running a piece I’d written asked for a family photo, including Margaret. I gulped, feeling exposed, and called my husband to ask his thoughts. He said, “Stand tall; run the picture.” We did.
That is my message to all of us: Stand tall; get out the message.
People will listen.
We can do it.
Together.
Tuesday, September 18, 2007
Another great article
I wasn't going to post anything about this "event" that happened in Italy, but I loved this response piece in the Toronto Sun. http://www.thestar.com/article/253107
The article talks about what happened, but I'll recap it briefly:
- a woman in Italy was pregnant with twins
- via tests, they found out one of the twins hand Down syndrome, the other did not
- the woman opted to have the child with Down syndrome aborted but leave the other one alone
- due to some medical oversight or mistake (they say the twins shifted positions in between the ultrasound and the abortion), the doctor aborted the "normal" twin and left the one with DS living
- the woman was furious, upset etc etc
- she then had the remaining twin (the one with DS) also aborted
As she was in Italy, the Vatican responded to this situation, calling it what it is: eugenics.
'Culture of perfection' destroying us
Sep 08, 2007 04:30 AM Helen Henderson
An Italian woman who sought to abort one of the twins she was expecting is at the centre of an international furor over society's attitude to children with disabilities.
When she was 18 weeks pregnant, the 38-year-old from Milan was told that one of her twin baby girls had Down syndrome, characterized by an extra chromosome and intellectual disability. She asked doctors to abort that fetus. By mistake, they aborted the other. Subsequently, the second fetus was also aborted.
No surprise that the pro-Vatican L'Osservatore Romano censured the abortions, which were performed in June but made public only last month. But the newspaper also encapsulated the crux of the debate when it said the story exposes "the culture of perfection that imposes the exclusion of all that does not appear beautiful, glowing, positive, captivating.
"What remains is emptiness, the desert of a life without content, though perfectly planned," the newspaper continued.
And there you have it.
In a world where biotechnology and genetic engineering strive for the smartest, the strongest and the most conventionally beautiful, there is less and less room for diversity.
Yet until society embraces diversity, until it willingly and unstintingly makes provision for those who are not cast from the common mould, we will never achieve peace, inwardly or outwardly.
And without peace, we will simply self-destruct – all of us, and sooner rather than later.
Twenty-two years ago, Toronto's Ruth Halperin gave birth to twins. Her daughter Daniella has Down syndrome. Daniella's twin brother Jesse does not.
"It is society that needs to be changed, not the child," says Halperin.
Daniella, who says she loves to dance, is helping at a daycare centre, a work placement that is part of the vocational course she is taking at Seneca College. Jesse is in Holland, doing a semester overseas as part of his training to be a lawyer.
Halperin counts both her twins as blessings.
"Daniella has such a full life," she said in a telephone interview last week as her daughter got ready to welcome friends for a barbeque. She said she is shocked by the news out of Italy, where a fierce public debate is dominating news.
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," one Italian senator is quoted as saying, referring to the philosophy, commonly associated with Nazi Germany, that humankind can be improved through selective reproduction.
Kids with disabilities are experts in wisdom and beauty and fortitude that come from deep inside. They nurture their nurturers against the fear, ignorance and closed minds that seek to block them from belonging.
If biotechnologists were smart, this is what they would be tapping in their race to "enhance" evolution.
The Italian mother-to-be is a victim of the cult of ignorance, spread in language that speaks volumes about attitudes. She is reported to have told the Corriere della Sera that she and her husband are "desperate over this terrible mistake" and were consulting lawyers.
The twin with Down syndrome is variously referred to in stories about the incident as "the sick fetus"and "the wrong twin."
"We must create a different emotional environment, a culture of hope," says Keith Powell, executive director of Community Living Ontario, which advocates for the full inclusion of people identified as having intellectual disabilities. "We need an affirmative action campaign to advance the gifts of people with disabilities."
Let's start right now as individuals to do the right thing.
Helen Henderson's column appears every second Saturday. Read more of her columns at thestar.com/access.
The article talks about what happened, but I'll recap it briefly:
- a woman in Italy was pregnant with twins
- via tests, they found out one of the twins hand Down syndrome, the other did not
- the woman opted to have the child with Down syndrome aborted but leave the other one alone
- due to some medical oversight or mistake (they say the twins shifted positions in between the ultrasound and the abortion), the doctor aborted the "normal" twin and left the one with DS living
- the woman was furious, upset etc etc
- she then had the remaining twin (the one with DS) also aborted
As she was in Italy, the Vatican responded to this situation, calling it what it is: eugenics.
'Culture of perfection' destroying us
Sep 08, 2007 04:30 AM Helen Henderson
An Italian woman who sought to abort one of the twins she was expecting is at the centre of an international furor over society's attitude to children with disabilities.
When she was 18 weeks pregnant, the 38-year-old from Milan was told that one of her twin baby girls had Down syndrome, characterized by an extra chromosome and intellectual disability. She asked doctors to abort that fetus. By mistake, they aborted the other. Subsequently, the second fetus was also aborted.
No surprise that the pro-Vatican L'Osservatore Romano censured the abortions, which were performed in June but made public only last month. But the newspaper also encapsulated the crux of the debate when it said the story exposes "the culture of perfection that imposes the exclusion of all that does not appear beautiful, glowing, positive, captivating.
"What remains is emptiness, the desert of a life without content, though perfectly planned," the newspaper continued.
And there you have it.
In a world where biotechnology and genetic engineering strive for the smartest, the strongest and the most conventionally beautiful, there is less and less room for diversity.
Yet until society embraces diversity, until it willingly and unstintingly makes provision for those who are not cast from the common mould, we will never achieve peace, inwardly or outwardly.
And without peace, we will simply self-destruct – all of us, and sooner rather than later.
Twenty-two years ago, Toronto's Ruth Halperin gave birth to twins. Her daughter Daniella has Down syndrome. Daniella's twin brother Jesse does not.
"It is society that needs to be changed, not the child," says Halperin.
Daniella, who says she loves to dance, is helping at a daycare centre, a work placement that is part of the vocational course she is taking at Seneca College. Jesse is in Holland, doing a semester overseas as part of his training to be a lawyer.
Halperin counts both her twins as blessings.
"Daniella has such a full life," she said in a telephone interview last week as her daughter got ready to welcome friends for a barbeque. She said she is shocked by the news out of Italy, where a fierce public debate is dominating news.
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," one Italian senator is quoted as saying, referring to the philosophy, commonly associated with Nazi Germany, that humankind can be improved through selective reproduction.
Kids with disabilities are experts in wisdom and beauty and fortitude that come from deep inside. They nurture their nurturers against the fear, ignorance and closed minds that seek to block them from belonging.
If biotechnologists were smart, this is what they would be tapping in their race to "enhance" evolution.
The Italian mother-to-be is a victim of the cult of ignorance, spread in language that speaks volumes about attitudes. She is reported to have told the Corriere della Sera that she and her husband are "desperate over this terrible mistake" and were consulting lawyers.
The twin with Down syndrome is variously referred to in stories about the incident as "the sick fetus"and "the wrong twin."
"We must create a different emotional environment, a culture of hope," says Keith Powell, executive director of Community Living Ontario, which advocates for the full inclusion of people identified as having intellectual disabilities. "We need an affirmative action campaign to advance the gifts of people with disabilities."
Let's start right now as individuals to do the right thing.
Helen Henderson's column appears every second Saturday. Read more of her columns at thestar.com/access.
Saturday, September 15, 2007
Details on the Prayer Service
Here are some details of the prayer service:
Sunday, September 23, 1997 at 6:30 pm.
It will be held at First Christian Reformed Church in Guelph
If anyone needs directions, just email me at annettel100@hotmail.com or call me.
This isn't a prayer service just for me, although that will be one of the main reasons for the service. We will also pray for Marisa, and Meta - two women I've met on this journey. We will also focus on expressing our trust in God. As I said, there will be time for individual and small group prayer, but if you're not comfortable speaking in public, don't. (you definitely won't be required to pray in front of the whole congregation up on the pulpit.)
Sunday, September 23, 1997 at 6:30 pm.
It will be held at First Christian Reformed Church in Guelph
If anyone needs directions, just email me at annettel100@hotmail.com or call me.
This isn't a prayer service just for me, although that will be one of the main reasons for the service. We will also pray for Marisa, and Meta - two women I've met on this journey. We will also focus on expressing our trust in God. As I said, there will be time for individual and small group prayer, but if you're not comfortable speaking in public, don't. (you definitely won't be required to pray in front of the whole congregation up on the pulpit.)
Thursday, September 13, 2007
Happy 10th!
Happy 10th Anniversary to my dear husband and I. Tom, I cannot believe it's been 10 years already - how time has flown! And you know what they say... time flies when you're having fun.
I knew when I married you that life would never be dull - and it hasn't. It's been an amazing 10 years - some highs and some lows... lots of good times and some bad times. You've made life fun - and we have had some adventures, haven't we? We've been blessed with two wonderful, spirited boys and I thank you for being a good father to them.
I love you Tom! I pray that we have many, many more anniversaries together!
I knew when I married you that life would never be dull - and it hasn't. It's been an amazing 10 years - some highs and some lows... lots of good times and some bad times. You've made life fun - and we have had some adventures, haven't we? We've been blessed with two wonderful, spirited boys and I thank you for being a good father to them.
I love you Tom! I pray that we have many, many more anniversaries together!
Wednesday, September 12, 2007
"The Blessing of a Down Syndrome Child"
This piece is two months old, but I thought I'd share it anyways. I'd like to re-title it using 'people first language": "The Blessing of a Child with Down syndrome".
http://www.cbn.com/CBNnews/191521.aspx
http://www.cbn.com/CBNnews/191521.aspx
Thursday, September 06, 2007
Much better now, thank you...
I received a call yesterday from someone at the school. This person had been involved in the "allocation" of students to classes. We had a great, frank and open talk about my concerns and why they did things the way they did. I feel so much better after that conversation. She took my point about keeping parents informed about how curriculum is being met by including this in the monthly newsletter and will be asking the teachers to do that. I was actually impressed with the thought that was put into the allocation of students to the various classes. And some of the reasons for why Kurtis was put in the class he was were entirely true (I did say we had a frank and open conversation! LOL) I'm still concerned about something but as I said before, we'll just have to wait and see how it develops - she did note my concern on that as well and we'll probably chat about it throughout the school year.
And.. as for the reason for Ryan having two aides.... that was also for a very valid reason and after hearing the reason, I just couldn't argue with it! Anyone who knows Ryan knows that he is a very busy boy... and requires a lot of energy to be with. So, they didn't think it was fair that one EA had Ryan for the entire day while some other EAs had a very "easy" child. The EA we had over the past two years was a bundle of energy and apparently could handle Ryan for the entire day - but not all people can. So, I really couldn't argue with that logic as I know all too well how busy Ryan is - that's the reason he needs an EA. Ryan gets distracted very easily and just has a TON of energy and doesn't sit still very well. So far I've been very impressed with the dedication of the two EAs that Ryan has... I mentioned something to one of them and the next thing I knew, it had already been addressed and the supplies brought to the classroom!
So, after all that, I'm feeling much better. There's still going to be a lot of work between both kids, but I think we can manage it. That glass is looking a bit fuller now! :)
And.. as for the reason for Ryan having two aides.... that was also for a very valid reason and after hearing the reason, I just couldn't argue with it! Anyone who knows Ryan knows that he is a very busy boy... and requires a lot of energy to be with. So, they didn't think it was fair that one EA had Ryan for the entire day while some other EAs had a very "easy" child. The EA we had over the past two years was a bundle of energy and apparently could handle Ryan for the entire day - but not all people can. So, I really couldn't argue with that logic as I know all too well how busy Ryan is - that's the reason he needs an EA. Ryan gets distracted very easily and just has a TON of energy and doesn't sit still very well. So far I've been very impressed with the dedication of the two EAs that Ryan has... I mentioned something to one of them and the next thing I knew, it had already been addressed and the supplies brought to the classroom!
So, after all that, I'm feeling much better. There's still going to be a lot of work between both kids, but I think we can manage it. That glass is looking a bit fuller now! :)
Tuesday, September 04, 2007
Worry, worry.... WHY?
I was so worried about school starting today that I had some trouble sleeping last night (which is very unusual for me). I'm coming to the conclusion that I'm a bit of a pessimist as I was envisioning all the bad things - and not even thinking of the good.
The reason I was worried was because Kurtis was placed in the one class I DIDN'T want him in. He was placed in the 2/3 split (he's in grade 3). There are a number of reasons I didn't want him in this 2/3 split - the primary one's being that I was worried about him not getting adequate coverage of the grade 3 curriculum and being bored by being with grade 2's and "doing" grade 2 work again.
Then when we arrived, things got even worse (according to me):
- Kurtis's class ended up with two teachers - one in the morning and one in the afternoon
- there are only 5 other grade 3's in Kurtis's class
- Ryan has two EA's (educational assistants) - one for the morning and one for the afternoon
Well, after talking to a few parents AND talking to Kurtis, who did enjoy his first day, I have a feeling things will be OK.
The two teachers that Kurtis has are both highly respected and liked. They'll be each teaching different subjects so there's no worry about overlapping there. And, as my sister pointed out, the second teacher will likely have more energy and enthusiasm as she didn't teach in the morning. And since grade 3 is a testing year (for the government), the teachers will have to stick to and teach the curriculum. There are a few other things I am concerned about, but we'll have to keep an eye on those and see how things develop. In any event, Kurtis told me he had a good day, so that's a great sign.
And I'm still not thrilled with Ryan having two EAs. Ryan tests every new person he meets and knows exactly how to do this! So, he really needs consistent discipline and every new person he interacts with decreases that consistency. It also means I have to work with two EA's instead of one - more work for me! I know they are both wonderful EAs - I just wish we had one of them for the whole day! I doubt things will change so we'll just have to work together closely - perhaps setting up monthly meetings to discuss how things are going.
So...my mind is alot lighter now. I'll have to keep working on the glass 1/2 full thing!
The reason I was worried was because Kurtis was placed in the one class I DIDN'T want him in. He was placed in the 2/3 split (he's in grade 3). There are a number of reasons I didn't want him in this 2/3 split - the primary one's being that I was worried about him not getting adequate coverage of the grade 3 curriculum and being bored by being with grade 2's and "doing" grade 2 work again.
Then when we arrived, things got even worse (according to me):
- Kurtis's class ended up with two teachers - one in the morning and one in the afternoon
- there are only 5 other grade 3's in Kurtis's class
- Ryan has two EA's (educational assistants) - one for the morning and one for the afternoon
Well, after talking to a few parents AND talking to Kurtis, who did enjoy his first day, I have a feeling things will be OK.
The two teachers that Kurtis has are both highly respected and liked. They'll be each teaching different subjects so there's no worry about overlapping there. And, as my sister pointed out, the second teacher will likely have more energy and enthusiasm as she didn't teach in the morning. And since grade 3 is a testing year (for the government), the teachers will have to stick to and teach the curriculum. There are a few other things I am concerned about, but we'll have to keep an eye on those and see how things develop. In any event, Kurtis told me he had a good day, so that's a great sign.
And I'm still not thrilled with Ryan having two EAs. Ryan tests every new person he meets and knows exactly how to do this! So, he really needs consistent discipline and every new person he interacts with decreases that consistency. It also means I have to work with two EA's instead of one - more work for me! I know they are both wonderful EAs - I just wish we had one of them for the whole day! I doubt things will change so we'll just have to work together closely - perhaps setting up monthly meetings to discuss how things are going.
So...my mind is alot lighter now. I'll have to keep working on the glass 1/2 full thing!
A Prayer Service
Just wanted to let everyone know that my church will be holding a prayer service for me (and others in my church who are facing the same type of issue). The details have yet to be worked out but it will be on September 23, 2007 in the late afternoon or early evening.
Although one of the key purposes of this service is to pray for healing for me, it is not the only purpose. Again, the details are to be worked out, but we will focus on God's leading through our lives, our trust in Him, and joyfully praising our God. Ultimately, it will be a service of hope. We will pray - together and individually, we will sing a few songs, and we will read some Scripture and some poetry or stories.
So, if you are so inclined, feel free to come out to this prayer service. You won't be asked to pray in front of the whole audience, so don't let that scare you off. If you want the details, email me at annettel100@hotmail.com.
Although one of the key purposes of this service is to pray for healing for me, it is not the only purpose. Again, the details are to be worked out, but we will focus on God's leading through our lives, our trust in Him, and joyfully praising our God. Ultimately, it will be a service of hope. We will pray - together and individually, we will sing a few songs, and we will read some Scripture and some poetry or stories.
So, if you are so inclined, feel free to come out to this prayer service. You won't be asked to pray in front of the whole audience, so don't let that scare you off. If you want the details, email me at annettel100@hotmail.com.
Wednesday, August 29, 2007
Imagine
This piece was written by Mendelt, Marisa's husband, on their blog, Life. I loved it and have stolen it, and with permission, am posting it here. I've made a few changes to make this my own. Those changes are in [brackets].
I am imagining along with them - for both of us. I imagine for my friend Meta as well who is a wonderful, compassionate woman who works with individuals with developmental disabilities.
I imagine...and pray... and trust.
Hallelujah! Hallelujah! Hallelujah!
IMAGINE
Imagine there was a young wonderful mother of three [two] who led a good, kingdom furthering life and then cancer hit her, her family and those who love her?
Imagine that her family, friends, and church stormed the doors of heaven with prayers so that somehow this beautiful woman could live to see her kids grow old?
Imagine the much hopeful news about the growth of the cancer, the CT scans, the nuclear medicine tests didn’t reveal good news?
Imagine then after almost all hope was gone, after more than 8 [20] months of sickness, fatigue, frustration and against-the-odds-positive-attitude, after the laws of science and medicine were turned on their head, after the oncologists said that this was the last medical chance for healing, it was revealed that the cancer was gone?
Imagine then that God and Jesus were talking over a cup of tea (surely they wouldn’t drink coffee) about this inspirational servant that they spared only to see that the good work that was begun in this woman would be carried out until completion?
And that, because of the good work that could continue, it would send a ripple of hallelujah’s throughout the land that would resonate with those who really need to hear it?
Imagine? I am.
I am imagining along with them - for both of us. I imagine for my friend Meta as well who is a wonderful, compassionate woman who works with individuals with developmental disabilities.
I imagine...and pray... and trust.
Hallelujah! Hallelujah! Hallelujah!
IMAGINE
Imagine there was a young wonderful mother of three [two] who led a good, kingdom furthering life and then cancer hit her, her family and those who love her?
Imagine that her family, friends, and church stormed the doors of heaven with prayers so that somehow this beautiful woman could live to see her kids grow old?
Imagine the much hopeful news about the growth of the cancer, the CT scans, the nuclear medicine tests didn’t reveal good news?
Imagine then after almost all hope was gone, after more than 8 [20] months of sickness, fatigue, frustration and against-the-odds-positive-attitude, after the laws of science and medicine were turned on their head, after the oncologists said that this was the last medical chance for healing, it was revealed that the cancer was gone?
Imagine then that God and Jesus were talking over a cup of tea (surely they wouldn’t drink coffee) about this inspirational servant that they spared only to see that the good work that was begun in this woman would be carried out until completion?
And that, because of the good work that could continue, it would send a ripple of hallelujah’s throughout the land that would resonate with those who really need to hear it?
Imagine? I am.
Tuesday, August 28, 2007
School's almost IN
I cannot believe our summer is almost over and that school starts in one week. Where did the summer go? I know adults always say this, but even Kurtis said this the other day. Last nigght, Kurtis and I went shopping for school supplies - backpacks, pencil cases, pencils etc etc. He's at the age now where he actually cares a bit about what I buy - so he's gotta come with me! Ryan could care less right now, so he's very easy to buy for. The shopping is the easy part. (wait...it seems I forgot about shoe shopping this afternoon. That definitely was NOT easy. Two tired and cranky children...combined with measuring feet and buying two pairs of shoes each does not make for a wonderful, happy shopping experience).
What's not easy is the (little bit of) worry I am experiencing about Ryan entering GRADE ONE! I cannot believe my little guy is already in "real" school. Tom and I debated about holding Ryan back - but after discussion with various people in Ryan's school life (ie. teacher, EA), we decided to put him in grade one. If it is too much, we can always hold him back and have him repeat grade one next year. In any event, he's going! There's so much worry in my head:
- will going to school all day, every day, be too much for him? I wonder if it will tire him out too much. And Ryan's not exactly overly cooperative when he's tired. In fact, the more tired he is, the more active and "busy" he becomes. It's almost as if he feels that if he stops for one minute, he'll fall asleep - so he CAN'T STOP.
- how much curriculum adaptation will we have to do? I know that we will have to do some, but how much and how are we going to do it? We haven't had to do any curriculum adaption yet, so this will be a learning experience for us. In the school system, the IEP (Individual Education Plan) isn't actually finalized until late October (give or take a few weeks), but I want to be "on top" of things starting right in September so I know I'll have to work with the teacher quickly and meet with her early in September.
- how will his new EA interact with him? Ryan has a new EA this year. He has had the same EA for the past two years and we're going to miss her a lot. But I also think it'll be good for Ryan to have a change. But Ryan is very good at challenging someone new - so I'm worried that we will see a lot of negative behaviour in the first few weeks.
- how will his new teacher interact with him? Thankfully, the teacher already knows Ryan as she was Kurtis's grade one teacher. She also has had a student with Down syndrome in her class. So I know that there won't be any major issues like some people encounter. But there's still always some worry in the back of my mind about how they will interact. I am working on writing something up that describes Ryan, his strengths and challenges, how to best work with Ryan, and our ultimate vision for him. This is a LOT of work and I haven't done much on it yet.
This is one of the things about having a child with a disability that I DON'T like. I can honestly say that there aren't too many things that bother me about having a child with a disability. This is one of them. Learning how to manoeuvre within the school "system" is hard work - and a lot of it. It ticks me off that so much of this ends up falling on the parents' shoulders. I know teachers and others in the school system work hard - and for the most part, I have been very happy with the people we've had to work for (no horror stories like some other people have had) and they have been good for Ryan. But it still bugs me that the parents really need to keep on top of it or it can fall by the wayside or not be appropriate for your child or just not done. You really need to learn to advocate for your child. And one thing you learn: not to be shy. You really need to stick up for your child because no one else will. And honestly, I'm lazy. Like everyone else, I'd rather not have to learn the in's and out's of the special education act. I'd rather not have to learn how to adapt curriculum so that it's useful for my child. I'd rather not have to learn how to complete IEPs. Enough about this. And as Tom says, don't worry - it'll all work out OK, it usually does!
What's not easy is the (little bit of) worry I am experiencing about Ryan entering GRADE ONE! I cannot believe my little guy is already in "real" school. Tom and I debated about holding Ryan back - but after discussion with various people in Ryan's school life (ie. teacher, EA), we decided to put him in grade one. If it is too much, we can always hold him back and have him repeat grade one next year. In any event, he's going! There's so much worry in my head:
- will going to school all day, every day, be too much for him? I wonder if it will tire him out too much. And Ryan's not exactly overly cooperative when he's tired. In fact, the more tired he is, the more active and "busy" he becomes. It's almost as if he feels that if he stops for one minute, he'll fall asleep - so he CAN'T STOP.
- how much curriculum adaptation will we have to do? I know that we will have to do some, but how much and how are we going to do it? We haven't had to do any curriculum adaption yet, so this will be a learning experience for us. In the school system, the IEP (Individual Education Plan) isn't actually finalized until late October (give or take a few weeks), but I want to be "on top" of things starting right in September so I know I'll have to work with the teacher quickly and meet with her early in September.
- how will his new EA interact with him? Ryan has a new EA this year. He has had the same EA for the past two years and we're going to miss her a lot. But I also think it'll be good for Ryan to have a change. But Ryan is very good at challenging someone new - so I'm worried that we will see a lot of negative behaviour in the first few weeks.
- how will his new teacher interact with him? Thankfully, the teacher already knows Ryan as she was Kurtis's grade one teacher. She also has had a student with Down syndrome in her class. So I know that there won't be any major issues like some people encounter. But there's still always some worry in the back of my mind about how they will interact. I am working on writing something up that describes Ryan, his strengths and challenges, how to best work with Ryan, and our ultimate vision for him. This is a LOT of work and I haven't done much on it yet.
This is one of the things about having a child with a disability that I DON'T like. I can honestly say that there aren't too many things that bother me about having a child with a disability. This is one of them. Learning how to manoeuvre within the school "system" is hard work - and a lot of it. It ticks me off that so much of this ends up falling on the parents' shoulders. I know teachers and others in the school system work hard - and for the most part, I have been very happy with the people we've had to work for (no horror stories like some other people have had) and they have been good for Ryan. But it still bugs me that the parents really need to keep on top of it or it can fall by the wayside or not be appropriate for your child or just not done. You really need to learn to advocate for your child. And one thing you learn: not to be shy. You really need to stick up for your child because no one else will. And honestly, I'm lazy. Like everyone else, I'd rather not have to learn the in's and out's of the special education act. I'd rather not have to learn how to adapt curriculum so that it's useful for my child. I'd rather not have to learn how to complete IEPs. Enough about this. And as Tom says, don't worry - it'll all work out OK, it usually does!
As promised.... PICTURES!
Ok.. I'm a bit late, but here are some pics from our cottage (cabin) week. I actually didn't end up with too many pictures... so here's just a few from what I have.
Kurtis and Tom did a lot of fishing together. Although they didn't manage to get us a fish'n'chips dinner, they did manage to impress the kids at the cottages!
Connor, Kurtis, Ryan and Sarah show their nice (but very sandy) side.... and then their silly side. I do think the silly side was 95% out on this holiday!
More fishin' pics:
Aren't cousins great? (you can all ooh and aah right now about how cute they all look in their lifejackets)
Thank goodness for the DVD on the computer. It really kept Ryan occupied when he needed to stay inside the cottage.
Kurtis and Tom did a lot of fishing together. Although they didn't manage to get us a fish'n'chips dinner, they did manage to impress the kids at the cottages!
Connor, Kurtis, Ryan and Sarah show their nice (but very sandy) side.... and then their silly side. I do think the silly side was 95% out on this holiday!
More fishin' pics:
Aren't cousins great? (you can all ooh and aah right now about how cute they all look in their lifejackets) Thank goodness for the DVD on the computer. It really kept Ryan occupied when he needed to stay inside the cottage. Thursday, August 23, 2007
Update - Aug 23/07
Ok... now that I've finally cleaned out my 980 emails, I can finally get to my blog! Seriously, I did have nearly 1,000 emails in my account. How does that happen, you ask.... I am on a few groups for people with sarcoma and they've been a chatty bunch lately. I'm also on a few groups related to Down syndrome. The emails add up quickly that way. And I got behind a while ago and then when I was gone to the cottage I got seriously behind. Anyways... that chore is now done.
I started my vitamin C therapy a few weeks ago and just had my 3rd treatment today. I've connected with a naturopathic doctor that I really like and trust. He was a medical doctor in the past so he has a lot of experience and knowledge from that point of view. My blood work showed significant deficiences in many areas. I guess this isn't surprising as I went through 16 months of chemotherapy and it would have worked some damage in that area as well. So I have to take a few supplements to help get myself back to normal. The vitamin C treatments have been fairly uneventful. They hook me up to an i.v. via my port-a-cath (I am sooooo happy I chose to get the port. It makes life re: i.v.'s soooo easy - especially when your veins are as horrible as mine are). Then I read and rest for the next hour and a half or so. The two nurses there are wonderful - they make sure I am comfortable and have everything I need (drinks, blankets, warm bean bags, reading material, etc). So far I'm not feeling anything from the vitamin C - either good or bad. I'll keep you posted!
We had a good week at the cottage last week. I'll be editing this post to include some pictures from our week. I found the week to be a great way to recharge my batteries. I even managed to read the latest Harry Potter book! Too bad we could only stay one week.
That's all for now folks.
I started my vitamin C therapy a few weeks ago and just had my 3rd treatment today. I've connected with a naturopathic doctor that I really like and trust. He was a medical doctor in the past so he has a lot of experience and knowledge from that point of view. My blood work showed significant deficiences in many areas. I guess this isn't surprising as I went through 16 months of chemotherapy and it would have worked some damage in that area as well. So I have to take a few supplements to help get myself back to normal. The vitamin C treatments have been fairly uneventful. They hook me up to an i.v. via my port-a-cath (I am sooooo happy I chose to get the port. It makes life re: i.v.'s soooo easy - especially when your veins are as horrible as mine are). Then I read and rest for the next hour and a half or so. The two nurses there are wonderful - they make sure I am comfortable and have everything I need (drinks, blankets, warm bean bags, reading material, etc). So far I'm not feeling anything from the vitamin C - either good or bad. I'll keep you posted!
We had a good week at the cottage last week. I'll be editing this post to include some pictures from our week. I found the week to be a great way to recharge my batteries. I even managed to read the latest Harry Potter book! Too bad we could only stay one week.
That's all for now folks.
Saturday, August 04, 2007
Life in pictures
I haven't been a very good blogger lately. We have been so busy this summer and we are really enjoying every minute of it (despite everything else)! We've been spending alot of time in various pools and lakes - the boys are turning into fish! Seriously, though, we have had a great time visiting with current friends, reconnecting with cousins I haven't seen in years, having fun at various pool parties and generally enjoying the beautiful sunny weather.
So, in lieu of posts, here are some pictures from the past month:
First of all... my silly boys!
So, in lieu of posts, here are some pictures from the past month:
First of all... my silly boys!
Enjoying the new boat and swimming off the dock:
Visiting friends in Indiana:
Ryan adores dogs of all shapes and sizes. If there is a dog to be found, Ryan is usually not too far off. So, Ryan had a lot of fun with our friends' 3 dogs. This picture is almost enough to make me want to get a dog. ALMOST...but not quite.
Spending the day at African Lion Safari:
At the beach in Grand Bend:
I think this one's true!
I did this "quiz" a long time ago... and I think it actually came out quite accurate! Sometimes I think I'm a pessimist, because I can see what can go wrong in a situation, but yet I always seem to expect the best out of everything - people, a new job, a new class/sport/activity for my kids etc etc. So, I guess that does make me a realist.
| You Are a Realist |
 You don't see the glass as half empty or half full. You see what's exactly in the glass. You never try to make a bad situation seem better than it is... But you also never sabotage any good things you have going on. You are brutally honest in your assessments of situations - and this always seems to help you cope. |
Friday, July 27, 2007
Yeah for Walgreens!
This circulated the Down syndrome "community" a while ago, but I'm just getting caught up on things. Next time I'm in the U.S., I'm going to shop at Walgreens!
One of the things that has worried me about Ryan becoming an adult is him finding "real" work. I don't care what kind of work he does, but I want him to find something that he enjoys and where he feels useful and that he is contributing (actually, that's no different than what most parents wish for any of their children, now is it?). People with developmental disabilities have a very difficult time finding jobs - and this isn't always because of their ability (and as an aside, it's not just people with developmental disabilities. People with other disabilities - i.e. physical disabilities, hearing or visual impairments - are underemployed as well). Often it can be because of discrimination. Often it can be that the employer is worried about what the person will or will not do and won't give the individual a chance to prove themselves. Or it may be that the employer is unwilling to make the few accommodations necessary for that individual to hold the job. In any case, I know how hard it is going to be for Ryan to find a job when he becomes an adult. We are fortunate in our case that there is always the family business to fall back on. Tom often remarks about the various jobs that Ryan will do when he grows up. But, as I remark back to Tom, what if he doesn't want to work for you?? So, finally, kudos to Walgreens for employing so many people with disabilities. I hope many employers see this and make a telephone call to the President of Walgreens to see how to do it at their company!
http://www.youtube.com/watch?v=B2akb4v2cUQ
One of the things that has worried me about Ryan becoming an adult is him finding "real" work. I don't care what kind of work he does, but I want him to find something that he enjoys and where he feels useful and that he is contributing (actually, that's no different than what most parents wish for any of their children, now is it?). People with developmental disabilities have a very difficult time finding jobs - and this isn't always because of their ability (and as an aside, it's not just people with developmental disabilities. People with other disabilities - i.e. physical disabilities, hearing or visual impairments - are underemployed as well). Often it can be because of discrimination. Often it can be that the employer is worried about what the person will or will not do and won't give the individual a chance to prove themselves. Or it may be that the employer is unwilling to make the few accommodations necessary for that individual to hold the job. In any case, I know how hard it is going to be for Ryan to find a job when he becomes an adult. We are fortunate in our case that there is always the family business to fall back on. Tom often remarks about the various jobs that Ryan will do when he grows up. But, as I remark back to Tom, what if he doesn't want to work for you?? So, finally, kudos to Walgreens for employing so many people with disabilities. I hope many employers see this and make a telephone call to the President of Walgreens to see how to do it at their company!
http://www.youtube.com/watch?v=B2akb4v2cUQ
Tuesday, July 24, 2007
Love for Parker
Parker is an adorable little boy with Down syndrome who has been dealing with a ton of medical issues and has gone through a lot in his short life. He has pulmonary hypertension, heart problems and requires many other special medical devices. Because of his medical issues, he is extremely susceptible to getting sick so he often has to stay home in the "safe room" of his house. If Parker gets even a little bit sick he usually ends up in the hospital. Of course, all these hospital stays and medical supplies he needs cost a lot of money, especially in the U.S. I don't normally post requests for money - just a general policy I keep - but in this case, I think I can make an exception. Melody from Slurping Life has decided to run a little contest to help out with some of Parker's medical expenses. Everyone who donates $2 or more to Parker's fund through Melody's site will be entered into the contest to win some great prizes! Some of the prizes are a digital camera and camera case, an HP compact printer with carrying case, and there will be even more prizes too!
So if you would like to help out our friend Parker and his family, the time to do it is from July 23-27. I know Parker's mom,Tammy, from one of my on-line Down syndrome sites. She is a dedicted, amazing mother - not only to Parker, but to her other children as well. So pop on by http://www.prayingforparker.com/ to get to know sweet Parker a little better and then visit Melody's site: http://slurpinglife.typepad.com/ from July 23-27 to read more information about the contest.
P.S. Here is the latest update on Parker:
Friday, July 20, 2007
Life goes on
It's been an odd week. It's really amazing how much life just goes on - especially with two small children to take care of and to be strong for. I'm trying not to think too much about what's going on - and succeeding to a fairly good extent. Perhaps it's a form of self preservation - my brain giving me the time to process this at my speed (i.e. slowly). Perhaps it's also because we've been busy... or perhaps I've been keeping myself busy so I DON'T have to think about it. In any event, it's amazing how life has been going on fairly normally. We visited friends in Indiana on the weekend...went to African Lion Safari on Tuesday....visited with my sister, her children and my Dad on Wednesday....ran errands on Thursday and went to celebrate my niece's birthday today....
I am also starting too look at the many alternatives available to me.... and there are many. It's a bit overwhelming as there really are a ton of choices! I have received many, many suggestions over the past year and I am thankful to all the people who provided me with that information. My analytical and organizational brain is going to make a list of all my options - together with pros and cons - so I can see it all in one place. Please pray that God will lead me to the right choices.
And I do have my moments, don't get me wrong. I am human, after all. My faith is taking a bit of a beating - it isn't always strong. I feel like I'm taking a bit of beating too. Sometimes it feels like God isn't there or isn't listening. I do remind myself that God is holding me close, even though sometimes I don't feel it - and lately I don't always feel that God is listening. I'm reminded of that poem, "Footprints" in which the poet, throughout his life saw two sets of footprints walking on the sand. At the end of his life, he could see that there were times where there was only one set of footprints - and this was at the lowest times in his life. When he asked God why that was, God replied that those times where when God carried him. So I remind myself that right now, there is only one set of footprints as I'm truly unable to walk by myself. I was also comforted this week by a vist from my pastor. It was wonderful to talk to him about what we're going through, my faith and God's place in this situation.
I'm rambling a bit again as my thoughts are all over the place. Please keep me and my family in your prayers. Pray for wisdom as we work through the various options available to us; pray for comfort and for God's presence; and pray for strength to go about our day-to-day activities.
I am also starting too look at the many alternatives available to me.... and there are many. It's a bit overwhelming as there really are a ton of choices! I have received many, many suggestions over the past year and I am thankful to all the people who provided me with that information. My analytical and organizational brain is going to make a list of all my options - together with pros and cons - so I can see it all in one place. Please pray that God will lead me to the right choices.
And I do have my moments, don't get me wrong. I am human, after all. My faith is taking a bit of a beating - it isn't always strong. I feel like I'm taking a bit of beating too. Sometimes it feels like God isn't there or isn't listening. I do remind myself that God is holding me close, even though sometimes I don't feel it - and lately I don't always feel that God is listening. I'm reminded of that poem, "Footprints" in which the poet, throughout his life saw two sets of footprints walking on the sand. At the end of his life, he could see that there were times where there was only one set of footprints - and this was at the lowest times in his life. When he asked God why that was, God replied that those times where when God carried him. So I remind myself that right now, there is only one set of footprints as I'm truly unable to walk by myself. I was also comforted this week by a vist from my pastor. It was wonderful to talk to him about what we're going through, my faith and God's place in this situation.
I'm rambling a bit again as my thoughts are all over the place. Please keep me and my family in your prayers. Pray for wisdom as we work through the various options available to us; pray for comfort and for God's presence; and pray for strength to go about our day-to-day activities.
Wednesday, July 11, 2007
Dear Lord,,,
Tom and I met with my doctor yesterday to get results of the latest CT scan.
The results were not good. Not good at all. The scan showed growth that obviously just occurred over the past couple of months so it is painfully apparent that the chemotherapy has stopped working. I've had 9 months of stability and hope - and for that I'm thankful. But I'm devastated that it's ended. Devastated really isn't a strong enough word, but I don't know anything that can really express the despair that went through me.
Thankfully we do have some hope. There is another clinical trial that my doctor wants to try. It should be available in September. In the meantime, we'll continue investigating other options across Canada and the U.S. I'll also be starting the i.v. vitamin C which I wasn't able to do since I was on the clinical trial. I'll be trying anything I can that will help build my immune system - and I'll probably become one of those people who'll try anything if they say it'll help!
And, in a weird way, I'm looking forward to being off chemo for a while. I've been doing chemotherapy for 15 months now with only a few small breaks. So, I'm looking forward to gaining some strength back and to gaining some weight back.
So all I can do now is pray and ask for your prayers. I have been crying a lot, but mostly, right now, I think I'm in denial and in some depression. I am also really unable to talk about it right now and perhaps just need a few days to deal with it.
I was just re-reading the post I wrote the last time we got bad news and the Bible verse I wrote down back then was from Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." Then, on Monday night, Kurtis and I were reading from a devotional book that he has - it's geared for boys age 6-9. We're not overly diligent about doing it, but that night we read about "God's Awesome Care". The verse was "The Lord is my shepherd, I shall not be in want" (Psalm 23:1) with the comment, "I am one of God's sheep". The reading discussed a boy who was worried about his track meet the next day with the Mother replying that God is like a shepherd to us and wants to help us in all we do. The discussion then talked about what worries have and how we can allow God to be our shepherd and how we can allow God to help us when we are afraid or nervous. It's amazing how God speaks to us and gives us what we need, even when we don't overtly ask for it. This verse and this devotional was exactly what I needed to hear to remind me that God is ALWAYS nearby and is taking care of us. And right now, I am going to work on letting God lead me like a sheep who doesn't know where to go.
Dear Lord,
Only You know how terrified we are right now. The future is so scary. I know that, if worst comes to worst, I will be healed in heaven and I will see You face-to-face in your glory...but Lord, I need to be healed here on earth. Lord, you know how often I, along with many others, have prayed for complete physical healing. I pray for that again. God, I ask that you heal me physically, fully and completely. I also ask for peace for me, Tom, my Dad, my sister and my dear friends and family. Help us to trust you wherever you may lead us. I know that, whatever happens, you are using my life to your glory.
Amen
P.S. I also ask that you keep Marissa in your prayers. She is also facing some uncertainty with respect to test results.
The results were not good. Not good at all. The scan showed growth that obviously just occurred over the past couple of months so it is painfully apparent that the chemotherapy has stopped working. I've had 9 months of stability and hope - and for that I'm thankful. But I'm devastated that it's ended. Devastated really isn't a strong enough word, but I don't know anything that can really express the despair that went through me.
Thankfully we do have some hope. There is another clinical trial that my doctor wants to try. It should be available in September. In the meantime, we'll continue investigating other options across Canada and the U.S. I'll also be starting the i.v. vitamin C which I wasn't able to do since I was on the clinical trial. I'll be trying anything I can that will help build my immune system - and I'll probably become one of those people who'll try anything if they say it'll help!
And, in a weird way, I'm looking forward to being off chemo for a while. I've been doing chemotherapy for 15 months now with only a few small breaks. So, I'm looking forward to gaining some strength back and to gaining some weight back.
So all I can do now is pray and ask for your prayers. I have been crying a lot, but mostly, right now, I think I'm in denial and in some depression. I am also really unable to talk about it right now and perhaps just need a few days to deal with it.
I was just re-reading the post I wrote the last time we got bad news and the Bible verse I wrote down back then was from Psalm 23: "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me." Then, on Monday night, Kurtis and I were reading from a devotional book that he has - it's geared for boys age 6-9. We're not overly diligent about doing it, but that night we read about "God's Awesome Care". The verse was "The Lord is my shepherd, I shall not be in want" (Psalm 23:1) with the comment, "I am one of God's sheep". The reading discussed a boy who was worried about his track meet the next day with the Mother replying that God is like a shepherd to us and wants to help us in all we do. The discussion then talked about what worries have and how we can allow God to be our shepherd and how we can allow God to help us when we are afraid or nervous. It's amazing how God speaks to us and gives us what we need, even when we don't overtly ask for it. This verse and this devotional was exactly what I needed to hear to remind me that God is ALWAYS nearby and is taking care of us. And right now, I am going to work on letting God lead me like a sheep who doesn't know where to go.
Dear Lord,
Only You know how terrified we are right now. The future is so scary. I know that, if worst comes to worst, I will be healed in heaven and I will see You face-to-face in your glory...but Lord, I need to be healed here on earth. Lord, you know how often I, along with many others, have prayed for complete physical healing. I pray for that again. God, I ask that you heal me physically, fully and completely. I also ask for peace for me, Tom, my Dad, my sister and my dear friends and family. Help us to trust you wherever you may lead us. I know that, whatever happens, you are using my life to your glory.
Amen
P.S. I also ask that you keep Marissa in your prayers. She is also facing some uncertainty with respect to test results.
Monday, July 09, 2007
"Chewing the Fat"
"Chewing the Fat" is a blog by David Hingsburger. I heard Dave speak at the first Down syndrome conference I attended - way back in May 2002. What he spoke about was hard to hear - painful even - but it was the truth and he opened up my eyes. He also taught me a great deal in that one hour session.
Dave's blog is amazing. He sees incredible things in the ordinary. He opens my eyes and makes me think. He makes me laugh. I haven't been keeping up to date on my blog reading and missed this entry from July 1. But, I think it's a great piece and so I wanted to share it with you. Read it. And while you're there, take a whirl through his blog and enjoy the read!
I have had many thoughts about what Ryan will or will not do in the future. Most of those thoughts occured shortly after he was born and in the first year of his life. It's funny... but as time goes on, I think less and less about what he will or will not be able to do (although I will never stop teaching him so that he will be ABLE to do what HE wants to do). I have thought about Ryan driving a car but honestly, when I did think about it, it fell into the category of "probably not". Shame on me. Thanks, David, for once again opening my eyes!
Dave's blog is amazing. He sees incredible things in the ordinary. He opens my eyes and makes me think. He makes me laugh. I haven't been keeping up to date on my blog reading and missed this entry from July 1. But, I think it's a great piece and so I wanted to share it with you. Read it. And while you're there, take a whirl through his blog and enjoy the read!
I have had many thoughts about what Ryan will or will not do in the future. Most of those thoughts occured shortly after he was born and in the first year of his life. It's funny... but as time goes on, I think less and less about what he will or will not be able to do (although I will never stop teaching him so that he will be ABLE to do what HE wants to do). I have thought about Ryan driving a car but honestly, when I did think about it, it fell into the category of "probably not". Shame on me. Thanks, David, for once again opening my eyes!
Thursday, July 05, 2007
What's that saying about time flying??
something about having fun I think....
I can't believe my last post was June 19 - over 2 weeks ago! And yes, we have been having fun (other than the 1 week of chemo, but we won't mention that).
The end of the school year always brings its own particular busy-ness.
- There was a talent show to attend. Kurtis, along with 9 other of his classmates, performed The Macarena - finished off with a flourish by a human pyramid. It was so cute to see, and they did a great job, in spite of the music mix-up at the beginning (I'd love to post the video, but I don't think it would be fair to post without asking all the parents' permission). Honestly, though, I was just so proud of Kurtis that he actually DID something. I don't think I would have had the guts to go in front of that many people when I was in grade 2... in fact, I know I wouldn't have!
- We went to a end of year senior kindergarten party hosted by a family of Ryan's classmate (this is not to be confused with the SK graduation ceremony and party that was held the next week).
- Finally, we (as in Tom and I) were invited by Kurtis's teacher to attend the end-of-year assembly. I wasn't sure why, but I had a feeling it was to see Kurtis receive an award. And I was right! We are so proud of Kurtis as he received the 2006-2007 Christian Leadership award for his class. Kurtis got a bit tired of me telling him how proud I was of him.. "enough Mom!!"
And we have been busy enjoying the beautiful weather. Tom hadn't been feeling good for a while, so now that he is feeling better, the boys have been able to go out cycling again. On Monday (Canada Day holiday), we along with my Dad, my sister and her family were able to go out and enjoy our "new to the whole family" boat that my Dad bought for us. Although this boat needs a bit of loving care, it will allow us to do some skiing and tubing (thanks Dad!!). Having grown up at a young age with a boat, I have such great memories of learning to ski, skiing with my friend behind the boat, having fun going on a tube behind the boat, and watching my Dad and his friends slalom ski and do other hot-dog tricks. I really wanted to be able to recreate those memories for my children (and my sister's children). We weren't able to try skiing on Monday, but we were able to put the towable behind the boat and watch the laughter on our kids' faces. We purchased a towable that has seats IN it so the kids are quite safe....not as much fun for the adults, but lots of fun for the kids. We adults will get our fun skiing.
Finally, I'm thrilled to say that Kathy has returned to watch the kids for the summer. Remember Kathy from last year and how happy we were with her and the care she provided for Kurtis and Ryan? Well, she's back for another summer and the kids and I couldn't be happier. She started work late last week and she's already keeping the kids busy - two trips to the library, one trip to the grocery store for cookie ingredients, baking said cookies, many card and board games. Tomorrow is another trip to the library to see a magician's show (they have wonderful summertime activities planned) and then to the splashpad. Tomorrow night is Italian Festival.... another yearly tradition for our family that the kids look forward to excitedly. They love to ride the carnival rides, eat the wonderful pasta and other Italian dishes and enjoy a spaghetti or cannoli eating contest. FUN FUN FUN
I can't believe my last post was June 19 - over 2 weeks ago! And yes, we have been having fun (other than the 1 week of chemo, but we won't mention that).
The end of the school year always brings its own particular busy-ness.
- There was a talent show to attend. Kurtis, along with 9 other of his classmates, performed The Macarena - finished off with a flourish by a human pyramid. It was so cute to see, and they did a great job, in spite of the music mix-up at the beginning (I'd love to post the video, but I don't think it would be fair to post without asking all the parents' permission). Honestly, though, I was just so proud of Kurtis that he actually DID something. I don't think I would have had the guts to go in front of that many people when I was in grade 2... in fact, I know I wouldn't have!
- We went to a end of year senior kindergarten party hosted by a family of Ryan's classmate (this is not to be confused with the SK graduation ceremony and party that was held the next week).
- Finally, we (as in Tom and I) were invited by Kurtis's teacher to attend the end-of-year assembly. I wasn't sure why, but I had a feeling it was to see Kurtis receive an award. And I was right! We are so proud of Kurtis as he received the 2006-2007 Christian Leadership award for his class. Kurtis got a bit tired of me telling him how proud I was of him.. "enough Mom!!"
And we have been busy enjoying the beautiful weather. Tom hadn't been feeling good for a while, so now that he is feeling better, the boys have been able to go out cycling again. On Monday (Canada Day holiday), we along with my Dad, my sister and her family were able to go out and enjoy our "new to the whole family" boat that my Dad bought for us. Although this boat needs a bit of loving care, it will allow us to do some skiing and tubing (thanks Dad!!). Having grown up at a young age with a boat, I have such great memories of learning to ski, skiing with my friend behind the boat, having fun going on a tube behind the boat, and watching my Dad and his friends slalom ski and do other hot-dog tricks. I really wanted to be able to recreate those memories for my children (and my sister's children). We weren't able to try skiing on Monday, but we were able to put the towable behind the boat and watch the laughter on our kids' faces. We purchased a towable that has seats IN it so the kids are quite safe....not as much fun for the adults, but lots of fun for the kids. We adults will get our fun skiing.
Finally, I'm thrilled to say that Kathy has returned to watch the kids for the summer. Remember Kathy from last year and how happy we were with her and the care she provided for Kurtis and Ryan? Well, she's back for another summer and the kids and I couldn't be happier. She started work late last week and she's already keeping the kids busy - two trips to the library, one trip to the grocery store for cookie ingredients, baking said cookies, many card and board games. Tomorrow is another trip to the library to see a magician's show (they have wonderful summertime activities planned) and then to the splashpad. Tomorrow night is Italian Festival.... another yearly tradition for our family that the kids look forward to excitedly. They love to ride the carnival rides, eat the wonderful pasta and other Italian dishes and enjoy a spaghetti or cannoli eating contest. FUN FUN FUN
Tuesday, June 19, 2007
I've discovered something the scientists haven't!!
I have discovered that the gene for hugging is on the 21st chromosome. Actually, I have a feeling I'm not the first to discover it. Probably many parents of children with Down syndrome have discovered this.
Anyone who has met Ryan knows that he LOVES to hug. And, at school the other day, I noticed my friend's little girl, Grace, hugging another parent as well. It seems that the duplication of gene 21 in the Down syndrome chromosomal make-up has also doubled the urge to hug.
Now, personally, I love it. Ryan gives the best hugs ever. And don't ever tell Kurtis this, but he really does give better hugs than other kids. I think it has to do with the low muscle tone that many kids with DS have - their bodies just seem to melt into yours and it is one of the most delicious things in the world.
Ryan loves to hug - me, his Dad, his brother, his grandparents, his cousins, aunts and uncles, his teachers, his classmates, a perfect stranger off the street.... I think you get the picture. Most of the hugging is OK. But we are trying to get him to stop hugging perfect and almost strangers. It is unfortunate, but today's society dictates this need. It would be a wonderful world where it was acceptable for Ryan to hug everyone he saw - I truly believe our world would be much better off if everyone practiced this behaviour. But, unfortunately, we don't live in utopia. We live in a world where there are scary people and people who will take advantage of Ryan's loving nature. So, we have to teach him that it is inappropriate to hug people other than those in his family and his "circle of friends".
The other day, at soccer practice, he ran off the field to a gentleman with a beard and gave him a hug and sat on his lap (he loves beards and loves to run his fingers through the beard). I quickly ran over and pulled Ryan off with a quick word about how we only hug people we know and not strangers. The man's wife was very quick to say it's OK and that they don't mind at all. Most people say that - they don't mind... in fact, I think they rather enjoy having a cute little boy come over and hug them. But when I replied that it is cute now, but it won't be cute in the future when he hugs strangers, the woman was quite quick to agree with me and I think she quickly realized the inherent danger in this behaviour.
So, once again, I am struck by the beauty that people with Down syndrome seem to carry around with them. And I am deeply saddened that I have to teach my son that it is NOT OK to hug that woman with the dog that we met walking on the street. Honestly, she did look so much happier afterwards. But, we will continue to do this for Ryan's safety. And, once again, if I could bottle this affection and love, I'd be a millionaire!
Anyone who has met Ryan knows that he LOVES to hug. And, at school the other day, I noticed my friend's little girl, Grace, hugging another parent as well. It seems that the duplication of gene 21 in the Down syndrome chromosomal make-up has also doubled the urge to hug.
Now, personally, I love it. Ryan gives the best hugs ever. And don't ever tell Kurtis this, but he really does give better hugs than other kids. I think it has to do with the low muscle tone that many kids with DS have - their bodies just seem to melt into yours and it is one of the most delicious things in the world.
Ryan loves to hug - me, his Dad, his brother, his grandparents, his cousins, aunts and uncles, his teachers, his classmates, a perfect stranger off the street.... I think you get the picture. Most of the hugging is OK. But we are trying to get him to stop hugging perfect and almost strangers. It is unfortunate, but today's society dictates this need. It would be a wonderful world where it was acceptable for Ryan to hug everyone he saw - I truly believe our world would be much better off if everyone practiced this behaviour. But, unfortunately, we don't live in utopia. We live in a world where there are scary people and people who will take advantage of Ryan's loving nature. So, we have to teach him that it is inappropriate to hug people other than those in his family and his "circle of friends".
The other day, at soccer practice, he ran off the field to a gentleman with a beard and gave him a hug and sat on his lap (he loves beards and loves to run his fingers through the beard). I quickly ran over and pulled Ryan off with a quick word about how we only hug people we know and not strangers. The man's wife was very quick to say it's OK and that they don't mind at all. Most people say that - they don't mind... in fact, I think they rather enjoy having a cute little boy come over and hug them. But when I replied that it is cute now, but it won't be cute in the future when he hugs strangers, the woman was quite quick to agree with me and I think she quickly realized the inherent danger in this behaviour.
So, once again, I am struck by the beauty that people with Down syndrome seem to carry around with them. And I am deeply saddened that I have to teach my son that it is NOT OK to hug that woman with the dog that we met walking on the street. Honestly, she did look so much happier afterwards. But, we will continue to do this for Ryan's safety. And, once again, if I could bottle this affection and love, I'd be a millionaire!
Dreams
Great video on Youtube. It was produced by the National Down Syndrome Society in the U.S.
www.youtube.com/watch?v=-_-P4t2jR1g&mode=related&search=
www.youtube.com/watch?v=-_-P4t2jR1g&mode=related&search=
Monday, June 11, 2007
What a wonderful day!
One thing about going through chemo... you are VERY grateful for a day that arrives where you are feeling good and energetic, where the weather is just perfect, where you have nothing else on your plate and where your husband has no appointments. That day was Sunday. So I woke up and was determined that our family was going to do something together, outdoors, somewhere.So we ended up at Ontario Place for the day. I must admit I was a bit disappointed with the place at first. Perhaps that comes from spending 7 days at Disney World with all the amazing stuff they have there. And Ontario Place is not really a ride place - and it is generally designed for the younger crowd. But, despite my disappointment when we first arrived, the kids had an AMAZING time! I had to drag them away from the first two "attractions" (the outdoor climbing structure and the indoor ball blaster) by convincing them there were other amazing things waiting for them! So, overall, I was happy with Ontario Place, especially when you consider the price compared to Disney!
We had told the kids we wouldn't have time for the water park and they were OK with that (but mostly, it was a concern about safety issues and Ryan).... but I did take their bathing suits, and after seeing how we could easily keep an eye on Ryan, we surprised them by letting them play in the water park. They had so much fun there and Kurtis was brave enough to go down the waterslides by himself (he just went down the one with 4+ people and merged himself in with other groups - not a shy bone in this kid's body!)
We wrapped the day up with a wonderful dinner at a good restaurant. Needless to say, we were ALL exhausted by the end of the day. (We were all still exhausted the next day too! LOL)
Any recommendations for a camera?
My camera has officially had it. It has this amazing ability to stop working at the most important moments. I have one picture of Ryan's Special Olympics as it would not work. This camera has had two visits to the repair shop already. I am going to bring it in for #3 - if they give me a replacement camera, then I'll take whatever they give me (a salesclerk at the store told me they might give me a replacement camera as this is repair#3 under the same warranty period). BUT... if they don't give me a replacement, I'm buying a new camera - even if they try to fix this one (it obviously hasn't worked before).
So... I'm looking for recommendations for a digital camera. No SLRs here... just want an easy to use digital camera with a fairly large view screen. Right now I have a Canon Powershot A60 and I do like it (in spite of the problems). It's easy to use and the pictures I get from it are clear and bright. But if you're passionate about your camera, let me know.... I'll check it out!
So... I'm looking for recommendations for a digital camera. No SLRs here... just want an easy to use digital camera with a fairly large view screen. Right now I have a Canon Powershot A60 and I do like it (in spite of the problems). It's easy to use and the pictures I get from it are clear and bright. But if you're passionate about your camera, let me know.... I'll check it out!
My goodwill ambassador
Ryan is such a happy boy and he greats everyone he meets with great enthusiasm. It doesn't matter if you're a stranger or not - he loves everyone and greats everyone with an enthusiastic "HI" and a hug. (We're working on not hugging strangers.... cute as it is right now, it's not exactly a safe thing to do, is it....)
Today, as we're driving through town, Ryan had the window down by his seat - and greeting everyone from there! He had to say hi to the woman at the drive-through window as I'm getting my French vanilla capaccino at Tim's. He said hi to the people stopped beside us at a stop light. Then, in the stores, he is all smiles and hellos for the sales staff... it makes it really hard to discipline him as octopus boy is grabbing everything in sight. How do you put him in a time-out when the sales staff is just grinning with him and chatting with him?? But, as usual, I have to smile at the reactions he gets. Everyone says hi and ends up with a great smile on their faces. I'm positive that their days were just a bit brighter after having this little boy come into their lives for a short time.
My goodwill ambassador. Is there anyway to bottle that sunshine that he brings? If so, I'd be a millionaire right now.
Today, as we're driving through town, Ryan had the window down by his seat - and greeting everyone from there! He had to say hi to the woman at the drive-through window as I'm getting my French vanilla capaccino at Tim's. He said hi to the people stopped beside us at a stop light. Then, in the stores, he is all smiles and hellos for the sales staff... it makes it really hard to discipline him as octopus boy is grabbing everything in sight. How do you put him in a time-out when the sales staff is just grinning with him and chatting with him?? But, as usual, I have to smile at the reactions he gets. Everyone says hi and ends up with a great smile on their faces. I'm positive that their days were just a bit brighter after having this little boy come into their lives for a short time.
My goodwill ambassador. Is there anyway to bottle that sunshine that he brings? If so, I'd be a millionaire right now.
Friday, June 08, 2007
What a difference a day makes!
Wow... I am feeling soooo much better than yesterday. It usually happens like this.... overnight, I can feel my body change and then the next day I'm pretty much back to normal (not quite, but close). Thank goodness, too, because today was a busy day. I could have imposed on my mother-in-law, but honestly, I think she's had a busy enough 10 days without adding one more on.
Today was a PD day and consisted of bringing Ryan to swimming lessons, a quick shopping expedition for a 6-year old girl, lunch out with the boys and my Dad (thanks for coming to visit Dad, it was great to see you!!), then taking Ryan to the 6-year old's birthday party at a glow-in-the-dark mini golf. And right now, I'm glad to say I'm not totally exhausted - in fact, I'm still feeling quite good!
Today was a PD day and consisted of bringing Ryan to swimming lessons, a quick shopping expedition for a 6-year old girl, lunch out with the boys and my Dad (thanks for coming to visit Dad, it was great to see you!!), then taking Ryan to the 6-year old's birthday party at a glow-in-the-dark mini golf. And right now, I'm glad to say I'm not totally exhausted - in fact, I'm still feeling quite good!
Wednesday, June 06, 2007
slowly....slowly....slowly...
This round of chemo was another tough one. Not so much in terms of nausea (no anticipatory nausea - YEAH!), but in terms of fatigue. The level of exhaustion has been incredible this time. I slept an easy 15-16 hours at a stretch...getting up (forcing myself up because my back was getting sore from lying down that long) only to fall asleep again in the lazy-boy chair. And my energy seems to be taking a long time to come back. It's day 9 now and I'm still quite fatigued. Although I'm sleeping fairly normal amounts.... I just can't DO anything! As you can guess I'm getting a bit frustrated. I'm trying to go with the flow, knowing that you can't fight it and just have to let nature take its course, but sometimes frustration does seep through.
Thank God for my mother-in-law - I don't know what we would do without her.... picking the kids up after school, feeding them dinner, taking Ryan on off-school days, taking the kids to various appointments, etc. Thank you Oma!
So, I'm off to REST and watch some more TV. I'm watching lots of talk shows (yuck), cooking shows, CSI and other bad TV (Kurtis loves "Smarter than a 5th grader" and "Deal or no deal" - oh well, what are you gonna do?) at night. Most TV really is inane, isn't it? But it keeps me occupied and I don't have to think too much - good things when you're really tired.
Thank you again for your comments, emails and prayers. Keep them coming!
Thank God for my mother-in-law - I don't know what we would do without her.... picking the kids up after school, feeding them dinner, taking Ryan on off-school days, taking the kids to various appointments, etc. Thank you Oma!
So, I'm off to REST and watch some more TV. I'm watching lots of talk shows (yuck), cooking shows, CSI and other bad TV (Kurtis loves "Smarter than a 5th grader" and "Deal or no deal" - oh well, what are you gonna do?) at night. Most TV really is inane, isn't it? But it keeps me occupied and I don't have to think too much - good things when you're really tired.
Thank you again for your comments, emails and prayers. Keep them coming!
Wednesday, May 30, 2007
A wonderful response!
Here is a wonderful response to the article I posted about on May 8 "Doomed from Birth to Death" . It was written by the president of the Nova Scotia Down Syndrome Society and was published as a reply in the Globe and Mail.
http://www.herald.ns.ca/Opinion/837842.html
Down syndrome: rights doomed by the media
By RENATE LINDEMAN
Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard.
In Canada, this is not a heartening time to have Down syndrome.
"Doomed from birth to death" was the appalling title of an article published by the Globe and Mail on May 5. "Born with Down syndrome, she is dying slowly from Alzheimer’s disease …" The story then reports sad fact after sad fact, fragments of lives of people with Down syndrome after the onset of Alzheimer’s. What about all the years before Alzheimer’s? What about the thousands of Canadians with Down syndrome leading rich lives, holding meaningful employment and having loving relationships? Finally, what about the people with Down syndrome who never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.
While it is good to educate people on the tragic link between Down syndrome and Alzheimer’s, this stream of sad, negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow the progress of Alzheimer’s and make it more manageable are ignored. There is no mention of the promising research conducted right here in Canada by Dr. Weaver at Dalhousie University in Halifax (see article "Anniversary of Hope," http://dalnews.dal.ca/2007/05/03/Weaver.html). Nor does it mention the trial conducted by the Down Syndrome Research Foundation in British Columbia on the effects of vitamin E and prevention/delay of early onset of Alzheimer’s.
Instead, the newspaper seems bent on painting a bleak picture, with a headline that is sure to cause sensation and sell many copies. It is unthinkable any other group in Canada could have been singled out as being "doomed from the womb" without causing a riot.
"… The culprit appears to be the extra chromosome that shaped her brain and body in the womb …"
I question whether, if a person with Down syndrome develops Alzheimer’s at age 40, this should be viewed as inevitably "shaped in the womb," or rather as something that develops throughout the lifespan and can be treated. Evidence suggests the development of certain diseases (like Alzheimer’s) in people with Down syndrome is the result of a changed biochemistry due to the presence of the extra chromosome. "… Most people with Down syndrome have an extra copy (of the 21st chromosome), and it carries the instructions for a protein believed to play an important role in Alzheimer’s …"
Further research into the effects of this protein might mean that one day, it is possible to treat, delay or even prevent the early onset of Alzheimer’s (and/or other diseases).
Important and promising research in this and other fields, aimed at improving lives of people with Down syndrome, is being conducted around the world by a few dedicated scientists (Stanford University, Down Syndrome Research Foundations in Canada and United Kingdom, Nutri-Chem’s Kent MacLeod, etc.). Unfortunately, research has been largely ignored by the medical society. Is this because it is believed that Down syndrome will soon no longer be prevalent? Has the ability to identify Down syndrome in pregnancy, so relatively easy and cheap, shifted the whole focus to prevention (by aborting) rather than treating the complications of this syndrome? Has society really decided that lives with Down syndrome are not worth living or are these opinions forced down our throats by the media?
After singling out this group of people as "doomed" on the front page, the Globe and Mail then provided a public platform (online comments) on their website for some very extreme ideas ( http://www.theglobeandmail.com/servlet/story/RTGAM.20070504.walzheimer0505/CommentStory/Entertainment/#comments).
The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat.
Medical research advances at a dazzling speed now that genes can be identified as responsible for certain conditions. The many new ethical and societal dilemmas this creates are not being properly addressed.
Lives and opinions may have changed forever due to this article. Families who fought for decades to achieve inclusion and equal rights for their children now may have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents’ decision may be negatively influenced when faced with a pre-natal screening that is positive for Down syndrome. A woman may have to live the rest of her adult life in a group home, because her brother and sister-in-law are reconsidering their decision to offer their home after reading the article.
We cannot allow this vulnerable group of people, some of whom have no verbal skills, to be condemned in the media. I would like to recommend reading the article published in the New York Times of May 9 ( http://www.nytimes.com/
2007/05/09/us/09down.html?_
r=1&oref=slogin).
Renate Lindeman is the mother of two children with Down syndrome, and president of the Nova Scotia Down Syndrome Society. She can be contacted by phone at 902-434-0234 or by e-mail at mail@novascotiadownsyndromesociety.com .
http://www.herald.ns.ca/Opinion/837842.html
Down syndrome: rights doomed by the media
By RENATE LINDEMAN
Canada’s signing of the UN convention on the rights of people with disabilities on March 31, 2007, marked another milestone in advancing the rights of people with disabilities. It appears we have come a long way. People with Down syndrome are included in their schools and communities, they get married, enjoy equal-opportunity employment. But beneath all this outward appearance of progress, a different message can be heard.
In Canada, this is not a heartening time to have Down syndrome.
"Doomed from birth to death" was the appalling title of an article published by the Globe and Mail on May 5. "Born with Down syndrome, she is dying slowly from Alzheimer’s disease …" The story then reports sad fact after sad fact, fragments of lives of people with Down syndrome after the onset of Alzheimer’s. What about all the years before Alzheimer’s? What about the thousands of Canadians with Down syndrome leading rich lives, holding meaningful employment and having loving relationships? Finally, what about the people with Down syndrome who never develop Alzheimer’s? Seems to me there is plenty to celebrate between birth and death.
While it is good to educate people on the tragic link between Down syndrome and Alzheimer’s, this stream of sad, negative information leaves readers in a state of despair. Important, hopeful facts about treatments that slow the progress of Alzheimer’s and make it more manageable are ignored. There is no mention of the promising research conducted right here in Canada by Dr. Weaver at Dalhousie University in Halifax (see article "Anniversary of Hope," http://dalnews.dal.ca/2007/05/03/Weaver.html). Nor does it mention the trial conducted by the Down Syndrome Research Foundation in British Columbia on the effects of vitamin E and prevention/delay of early onset of Alzheimer’s.
Instead, the newspaper seems bent on painting a bleak picture, with a headline that is sure to cause sensation and sell many copies. It is unthinkable any other group in Canada could have been singled out as being "doomed from the womb" without causing a riot.
"… The culprit appears to be the extra chromosome that shaped her brain and body in the womb …"
I question whether, if a person with Down syndrome develops Alzheimer’s at age 40, this should be viewed as inevitably "shaped in the womb," or rather as something that develops throughout the lifespan and can be treated. Evidence suggests the development of certain diseases (like Alzheimer’s) in people with Down syndrome is the result of a changed biochemistry due to the presence of the extra chromosome. "… Most people with Down syndrome have an extra copy (of the 21st chromosome), and it carries the instructions for a protein believed to play an important role in Alzheimer’s …"
Further research into the effects of this protein might mean that one day, it is possible to treat, delay or even prevent the early onset of Alzheimer’s (and/or other diseases).
Important and promising research in this and other fields, aimed at improving lives of people with Down syndrome, is being conducted around the world by a few dedicated scientists (Stanford University, Down Syndrome Research Foundations in Canada and United Kingdom, Nutri-Chem’s Kent MacLeod, etc.). Unfortunately, research has been largely ignored by the medical society. Is this because it is believed that Down syndrome will soon no longer be prevalent? Has the ability to identify Down syndrome in pregnancy, so relatively easy and cheap, shifted the whole focus to prevention (by aborting) rather than treating the complications of this syndrome? Has society really decided that lives with Down syndrome are not worth living or are these opinions forced down our throats by the media?
After singling out this group of people as "doomed" on the front page, the Globe and Mail then provided a public platform (online comments) on their website for some very extreme ideas ( http://www.theglobeandmail.com/servlet/story/RTGAM.20070504.walzheimer0505/CommentStory/Entertainment/#comments).
The "value" of people with Down syndrome was being questioned over and over, as they were accused of being unproductive and a drain on resources. "Value" for society was only measured in terms of the ability to make money, and no value was placed on care, respect, acceptance or love. If society views people with Down syndrome as a "burden" in these times of abundance, what will happen if we face an economical recession? We cannot allow people with Down syndrome to be the scapegoat.
Medical research advances at a dazzling speed now that genes can be identified as responsible for certain conditions. The many new ethical and societal dilemmas this creates are not being properly addressed.
Lives and opinions may have changed forever due to this article. Families who fought for decades to achieve inclusion and equal rights for their children now may have to battle negative attitudes once again. Families might face more barriers in getting the supports for their children they need. Prospective parents’ decision may be negatively influenced when faced with a pre-natal screening that is positive for Down syndrome. A woman may have to live the rest of her adult life in a group home, because her brother and sister-in-law are reconsidering their decision to offer their home after reading the article.
We cannot allow this vulnerable group of people, some of whom have no verbal skills, to be condemned in the media. I would like to recommend reading the article published in the New York Times of May 9 ( http://www.nytimes.com/
2007/05/09/us/09down.html?_
r=1&oref=slogin).
Renate Lindeman is the mother of two children with Down syndrome, and president of the Nova Scotia Down Syndrome Society. She can be contacted by phone at 902-434-0234 or by e-mail at mail@novascotiadownsyndromesociety.com .
Monday, May 28, 2007
Busy busy busy
Sorry I've been such a bad blogger lately. It seems I'm trying to pack four weeks of "to do's" into two. I've been trying to get a bunch of things off my "to do list" and these past two weeks I've been FINALLY making a dent into it. Of course this means I don't have much time for blogging. On the good side...
- I've organized the children's spring/summer clothes and packed away the winter clothes.
- I've shopped and purchased new spring and summer clothes. As I tell Kurtis, "just stop growing already, would you?" Kurtis in particular always seems to need a new wardrobe every season as very little fits him from the previous year. And Ryan seems to have had a big growth spurt since last summer as he needed a lot of new clothes as well.
- We reorganized Kurtis's room as we bought him new bedroom furniture. Finally the child can sleep in a real bed instead of just on a mattress on the floor!
- I've finally got all my Disney pictures printed and into albums
- I've finally got all my other pictures (up to May) printed, although not yet into albums
- I've FINALLY cleaned out all the boys' clothes that were in boxes in the basement. The basement is looking a little emptier - yeah!
- I've organized all the "keepsakes" I've kept from Kurtis and Ryan over the years and now each child has their own "memory" bin. That took a while as I was going back 8 years and I couldn't help but look at the work they produced and read the journals from the babysitters and schools. I'm a bit of a packrat when it comes to sentimental things and memory joggers. I keep calendars, cards, select pieces of schoolwork, tickets to places we visit.
- I'm very proud of this.... I finally figured out how to use the software and I've produced DVD's of all our home digital videos. It took me a while to work my way through it but it's now all done up to April 2007!
I did also manage to have some fun as well... a few lunches with friends, a few dinners with friends, a night at a B&B with Tom while my sister and brother-in-law watched the kids, taking in Shrek 3 with my boys and eating far too much junk...
About the B&B.... apparently Tom and I are NOT B&B people. I felt awkward being in someone's house... a stranger's house... like I should be quiet and always whisper. And apparently I'm also a TV addict as I really missed my TV. Not that we couldn't go without it - we went to a movie that night after a wonderful dinner - but I do miss winding down for 10 minutes before I go to bed! Yup - we're definitely hotel people!
I'm heading in for chemo again tomorrow. Please pray that this one is easy and that it isn't so energy draining. Also pray that there is no anticipatory nausea - it was horrible last time. I hope to be blogging again in a week or so.
- I've organized the children's spring/summer clothes and packed away the winter clothes.
- I've shopped and purchased new spring and summer clothes. As I tell Kurtis, "just stop growing already, would you?" Kurtis in particular always seems to need a new wardrobe every season as very little fits him from the previous year. And Ryan seems to have had a big growth spurt since last summer as he needed a lot of new clothes as well.
- We reorganized Kurtis's room as we bought him new bedroom furniture. Finally the child can sleep in a real bed instead of just on a mattress on the floor!
- I've finally got all my Disney pictures printed and into albums
- I've finally got all my other pictures (up to May) printed, although not yet into albums
- I've FINALLY cleaned out all the boys' clothes that were in boxes in the basement. The basement is looking a little emptier - yeah!
- I've organized all the "keepsakes" I've kept from Kurtis and Ryan over the years and now each child has their own "memory" bin. That took a while as I was going back 8 years and I couldn't help but look at the work they produced and read the journals from the babysitters and schools. I'm a bit of a packrat when it comes to sentimental things and memory joggers. I keep calendars, cards, select pieces of schoolwork, tickets to places we visit.
- I'm very proud of this.... I finally figured out how to use the software and I've produced DVD's of all our home digital videos. It took me a while to work my way through it but it's now all done up to April 2007!
I did also manage to have some fun as well... a few lunches with friends, a few dinners with friends, a night at a B&B with Tom while my sister and brother-in-law watched the kids, taking in Shrek 3 with my boys and eating far too much junk...
About the B&B.... apparently Tom and I are NOT B&B people. I felt awkward being in someone's house... a stranger's house... like I should be quiet and always whisper. And apparently I'm also a TV addict as I really missed my TV. Not that we couldn't go without it - we went to a movie that night after a wonderful dinner - but I do miss winding down for 10 minutes before I go to bed! Yup - we're definitely hotel people!
I'm heading in for chemo again tomorrow. Please pray that this one is easy and that it isn't so energy draining. Also pray that there is no anticipatory nausea - it was horrible last time. I hope to be blogging again in a week or so.
Thursday, May 24, 2007
Special Olympics
Ryan had his first Special Olympics Track & Field day yesterday. What a very special day it was (although a bit overwhelming for Ryan and his Mommy!) It was a beautiful warm day and the field was full of Special Olympians, peer supports, teachers and parents. Ryan competed in the Bean Bag Throw, the 50 m dash and the Obstacle Course. (Children age 5-7 participate in "alternative" events, not regular track & field events.) I'm so proud of my little guy - he got 1st in the 50 m dash, 2nd in the bean bag throw and 3rd in the Obstacle course.
Check out the 50 m dash - sorry the video is a bit wobbly at first, but it gets better
Photo Sharing - Upload Video - Video Sharing - Share Photos
Check out the 50 m dash - sorry the video is a bit wobbly at first, but it gets better
Photo Sharing - Upload Video - Video Sharing - Share Photos
Friday, May 11, 2007
Ryan's new bike
Check it out! Ryan LOVES this new bike - so much more freedom!
Now, Ryan can ride a two-wheeler with training wheels. The only problem right now is that he is still lacking in safety awareness - so taking him outside of our deadend street is not a possibility. So now all the boys can go for a bike ride together.
Tuesday, May 08, 2007
What a horrible article...
...from the title to the very last punctuation mark.
Doomed from birth to death
Man, this makes my blood boil. I even debated about posting it on my blog as I did not want to give any more publicity to this article, but in the end, I knew I needed to. People need to know what kind of crap individuals with Down syndrome ae subjected to. Would they dare write an article about Canada's aborignal people being doomed because they are more likely to deal with diabetes? And how dare they consider that someone's life is "doomed" just because they have Down syndrome and "may be" more likely to get Alzheimer's? Apparently they've never met anyone with T21 or even spoken to someone on the phone as they would emphatically tell you quite differently.
As people with T21 are in a very real battle for their very existence right now, we don't need articles like this that only serve to encourage this horrible eugenics movement.
And this comes right on top of a friend letting me know that her child, all of 5 years of age, is being slotted into the "life skills" kindergarten by the school district - without anyone having met this child. (Now, just as an aside, I want to clarify that I am NOT against life skills classes for any child. I truly believe that each child should be able to be in the environment that helps her learn best. In this case, an integrated setting is the best environment for this child). Her school teacher, along with other individuals who know her, all say that a typical classroom would be the best environment for this child. My friend, unfortunately, is likely in for a battle with some bureaucracts who seem to have already made up their mind.
And.. while I'm on a rant... this follows closely another very, very dear friend of mine who is in a battle with her child's school, right here in Ontario, to have EA coverage for a full day when her son goes to grade 1 in September. Their suggestion is that she take him home for part of the day instead. This makes me so angry. Is this child not entitled to a full day of school like everyone else? Is he not entitled to learn? How is he going to maximize his potential when already he's being seen as a "lesser" individual?
So many battles to fight. But fight them we will. We owe it to people with T21 to help them live the best life possible. I firmly believe that we must stand up for those who can't stand up for themselves. Every person deserves to live a full, happy life surrounded by people who love him in a community that supports him. And I will continue to fight for that goal for Ryan.
End of rant.
Doomed from birth to death
Man, this makes my blood boil. I even debated about posting it on my blog as I did not want to give any more publicity to this article, but in the end, I knew I needed to. People need to know what kind of crap individuals with Down syndrome ae subjected to. Would they dare write an article about Canada's aborignal people being doomed because they are more likely to deal with diabetes? And how dare they consider that someone's life is "doomed" just because they have Down syndrome and "may be" more likely to get Alzheimer's? Apparently they've never met anyone with T21 or even spoken to someone on the phone as they would emphatically tell you quite differently.
As people with T21 are in a very real battle for their very existence right now, we don't need articles like this that only serve to encourage this horrible eugenics movement.
And this comes right on top of a friend letting me know that her child, all of 5 years of age, is being slotted into the "life skills" kindergarten by the school district - without anyone having met this child. (Now, just as an aside, I want to clarify that I am NOT against life skills classes for any child. I truly believe that each child should be able to be in the environment that helps her learn best. In this case, an integrated setting is the best environment for this child). Her school teacher, along with other individuals who know her, all say that a typical classroom would be the best environment for this child. My friend, unfortunately, is likely in for a battle with some bureaucracts who seem to have already made up their mind.
And.. while I'm on a rant... this follows closely another very, very dear friend of mine who is in a battle with her child's school, right here in Ontario, to have EA coverage for a full day when her son goes to grade 1 in September. Their suggestion is that she take him home for part of the day instead. This makes me so angry. Is this child not entitled to a full day of school like everyone else? Is he not entitled to learn? How is he going to maximize his potential when already he's being seen as a "lesser" individual?
So many battles to fight. But fight them we will. We owe it to people with T21 to help them live the best life possible. I firmly believe that we must stand up for those who can't stand up for themselves. Every person deserves to live a full, happy life surrounded by people who love him in a community that supports him. And I will continue to fight for that goal for Ryan.
End of rant.
...but we worked so hard on it!
So Tom and I just finished our first grade 2 project. I hope we get an A+ on it!
Seriously, I couldn't help but joke as Tom is helping Kurtis finish off his project this morning after breakfast as it was due today. Nothing like last minute work! Apparently my child takes after me in that department.
Kurtis had a project to do on any country in the world. And it really wasn't that hard. The teacher laid out exactly what was supposed to be "discussed" on each page, there was only 12 pages (including the cover) and she supplied the booklet it was to be done in. But, we did find it time consuming! Kurtis picked Austria (for those of you who don't know, Tom's parents come from Austria and all his relatives are still there) as his country. We had to go to the library to learn how to find books on your topic. We had to teach him how to look at the books to find answers to the questions the teacher asked - NOT an easy task for an 8 year old boy with a bike just waiting to be ridden. And... "bibiography" is a HUGE word for an 8 year old.... he still can't pronounce it! Overall, though, I was proud of what Kurtis did. It took a lot of willpower on my part not to interfere and tell him it would be MUCH BETTER if he did this instead of that... or added that instead of this.... or said it this way... or drew this picture. My tongue is still sore from being bitten! :) But honestly, my child is not shy and had definite opinions on how things should be done and was quite willing to tell me so.
So... we'd better get an A+ on our project!
Seriously, I couldn't help but joke as Tom is helping Kurtis finish off his project this morning after breakfast as it was due today. Nothing like last minute work! Apparently my child takes after me in that department.
Kurtis had a project to do on any country in the world. And it really wasn't that hard. The teacher laid out exactly what was supposed to be "discussed" on each page, there was only 12 pages (including the cover) and she supplied the booklet it was to be done in. But, we did find it time consuming! Kurtis picked Austria (for those of you who don't know, Tom's parents come from Austria and all his relatives are still there) as his country. We had to go to the library to learn how to find books on your topic. We had to teach him how to look at the books to find answers to the questions the teacher asked - NOT an easy task for an 8 year old boy with a bike just waiting to be ridden. And... "bibiography" is a HUGE word for an 8 year old.... he still can't pronounce it! Overall, though, I was proud of what Kurtis did. It took a lot of willpower on my part not to interfere and tell him it would be MUCH BETTER if he did this instead of that... or added that instead of this.... or said it this way... or drew this picture. My tongue is still sore from being bitten! :) But honestly, my child is not shy and had definite opinions on how things should be done and was quite willing to tell me so.
So... we'd better get an A+ on our project!
Thursday, May 03, 2007
quick post...
I'm on day 3 of chemo so it's a quick entry. I'm extremely exhausted - I have literally been sleeping around the clock. I've been awake this morning now for about 4 hours so it's time to head to bed but I thought I'd update here. Other than fatigue, everything else is OK. See you all in about a week. We're having wonderful weather here so I hope you are too.
Monday, April 23, 2007
Life with Creative Kurtis
This kid continues to amaze me with his creativity. This is a "device" he made the other day. The base is a motor that spins around. This is from his K'nex sets. He then attached a K'nex straw to it. At the very end, he had wire attached to a butterfly (fake, obviously) that he found. He secured the whole thing to the ceiling with tape. Once turned on, the butterfly spun around and around. He made it especially for me.
Very late with this, but better late than never, right?
Down Syndrome Awareness Day (DSAD) was on March 21. I was cleaning out my "favourites" and came across this site that has videos from DSAD 2006. Enjoy.
http://www.showdown.name/#
http://www.showdown.name/#
"My Special Someone"
My mom is special to me because she is sick and she still does many things for me. She takes me to school and takes me and Ryan to Chicopee to learn to ski. Sometimes she takes me and Ryan out to eat for breakfast, lunch or dinner. My favorite thing is she lets me and Ryan stay up late sometimes.
Love,
Kurtis
This was an assignment Kurtis had at school. I cried when I read this. Can you blame me?
I try hard to make life as normal as possible for my kids - it was one of my goals when I found out I had cancer. I didn't want this cancer to take over and be the focus of their lives. Unfortunately, in many ways it is. I can't help that I'm out of commission for at least one week every month. It breaks my heart when someone asks Ryan where Mommy is and he points to the bedroom and signs "sleeping". It breaks my heart when Kurtis asks to go tobogganing in the winter and I have to say no because I can't physically do it. But I am trying so hard to make life as regular as possible. Wherever I can, I do what I can. I'm glad to see it's working to a fairly good degree.
Love,
Kurtis
This was an assignment Kurtis had at school. I cried when I read this. Can you blame me?
I try hard to make life as normal as possible for my kids - it was one of my goals when I found out I had cancer. I didn't want this cancer to take over and be the focus of their lives. Unfortunately, in many ways it is. I can't help that I'm out of commission for at least one week every month. It breaks my heart when someone asks Ryan where Mommy is and he points to the bedroom and signs "sleeping". It breaks my heart when Kurtis asks to go tobogganing in the winter and I have to say no because I can't physically do it. But I am trying so hard to make life as regular as possible. Wherever I can, I do what I can. I'm glad to see it's working to a fairly good degree.
Friday, April 20, 2007
"Mom my Ride"
This is worth a chuckle or two. It is dedicted, with love, to all my "Mom" friends who drive mini-vans.
http://www.youtube.com/watch?v=HEFE3B0Rje0
http://www.youtube.com/watch?v=HEFE3B0Rje0
One of those weeks....
It's been a while since I've blogged - it's just been such an incredibly busy week. Ryan had a doctor's appointment on Monday for his 4-6 year old shots. He was such a trooper for everything - he actually doesn't mind going to the doctor. Although, he did scream for about 10 seconds when he got the needle - I don't blame him there!! Then we drove 1/2 hour to Toys'r'us to get Kurtis's birthday presents. One of the sales ladies just made my day (NOT!) by referring to me as Ryan's grandmother. Oh joy! I know I'm really gray, but I thought it was a "chic" gray - not an Oma gray! Seriously, I'm not too upset - I don't think she really got a good look at me and didn't see my wrinkle free skin LOL - and in all fairness, I guess I could be Ryan's grandmother if I had a baby when I was VERY young.
On Tuesday, I spent the morning doing bookkeeping for Tom and the afternoon I was able to go with Kurtis on his class trip. We went to the local theatre to see a play (that was fairly 'artsy' and mostly above the kids' heads). I was excited that I was finally able to make a class trip as all previous ones coincided with recovery from chemos. On Tuesday afternoon, Kurtis and I did MORE baking - we made cupcakes to take to his class in celebration of his birthday. However, unlike the previous baking experiences, this one was just a cake mix and tinned frosting. I have to admit that it tasted better than from scratch! They were YUMMO (can you tell I've been watching Rachel Ray?? I can only take her in very small doses as she's just a bit too much. I switch between her and Ellen). On Tuesday night, we had a Guelph Down syndrome group meeting and were able to meet two new families. Their babies were both very young - 6 months and 5 months - and soooo adorable. Now, I may be prejudiced, but I honestly think babies with Down syndrome are the cutest babies in the world. There is just something about their faces that makes them gorgeous. It was such a treat to meet these babies and their parents and get to chat a bit. How it brings back memories.......
On Wednesday, I had some errands to run and our normal afternoon activity of speech therapy (another 1/2 hour drive). It was also Kurtis's birthday - I can't believe he's 8! I probably say this every year, but this year, 8 really does seem big.... it's only 2 more years until he's 10! The big hit gift was an Air Hog remote control airplane - my goodness, he was thrilled with it. I couldn't have missed buying it though - everytime he saw it on TV, he yelled at me to come see what he wanted for his birthday. It's so cool to see the uncontained excitement and joy in a child - he really was thrilled! The weather was starting to become nice so we spent the evening playing outside at the park with the new toy. FUN FUN FUN! The rest of the week involved more activities for the kids, more bookkeeping for Tom and more errands. I haven't managed to fit in my nap all week - poor me. (For those of you who don't know, I nap EVERY day. I need that nap as I get very tired otherwise). I did survive without my naps, but I was incredibly tired at night by the time the kids got to bed. I even fell asleep with them last night at 8:00.
Well,,, I'm rambling a bit here - guess that's what you get when you blog when you're tired. I'm a bit more tired than usual as Ryan was awake for about 3 hours last night. In my ramblings above, I neglected to mention that Ryan's behaviour was ATROCIOUS this week - disobeying me at every turn, not able to focus at school, whiny, obstinate and just generally frustrating to his mother. I should have known something was physically wrong and yup, last night we discover the poor kid has an ear infection. He never complained but something was probably bothering him over the past few days. And it probably explains the behaviour all this week - he was fighting that infection and was just "off". So, now Ryan is fast asleep - his head hit the pillow and he was out about 10 seconds later. I'm off to watch a movie with my hubby and then I think it's an early night for me. If you've made it this far, thanks for reading this rambling blog entry!
On Tuesday, I spent the morning doing bookkeeping for Tom and the afternoon I was able to go with Kurtis on his class trip. We went to the local theatre to see a play (that was fairly 'artsy' and mostly above the kids' heads). I was excited that I was finally able to make a class trip as all previous ones coincided with recovery from chemos. On Tuesday afternoon, Kurtis and I did MORE baking - we made cupcakes to take to his class in celebration of his birthday. However, unlike the previous baking experiences, this one was just a cake mix and tinned frosting. I have to admit that it tasted better than from scratch! They were YUMMO (can you tell I've been watching Rachel Ray?? I can only take her in very small doses as she's just a bit too much. I switch between her and Ellen). On Tuesday night, we had a Guelph Down syndrome group meeting and were able to meet two new families. Their babies were both very young - 6 months and 5 months - and soooo adorable. Now, I may be prejudiced, but I honestly think babies with Down syndrome are the cutest babies in the world. There is just something about their faces that makes them gorgeous. It was such a treat to meet these babies and their parents and get to chat a bit. How it brings back memories.......
On Wednesday, I had some errands to run and our normal afternoon activity of speech therapy (another 1/2 hour drive). It was also Kurtis's birthday - I can't believe he's 8! I probably say this every year, but this year, 8 really does seem big.... it's only 2 more years until he's 10! The big hit gift was an Air Hog remote control airplane - my goodness, he was thrilled with it. I couldn't have missed buying it though - everytime he saw it on TV, he yelled at me to come see what he wanted for his birthday. It's so cool to see the uncontained excitement and joy in a child - he really was thrilled! The weather was starting to become nice so we spent the evening playing outside at the park with the new toy. FUN FUN FUN! The rest of the week involved more activities for the kids, more bookkeeping for Tom and more errands. I haven't managed to fit in my nap all week - poor me. (For those of you who don't know, I nap EVERY day. I need that nap as I get very tired otherwise). I did survive without my naps, but I was incredibly tired at night by the time the kids got to bed. I even fell asleep with them last night at 8:00.
Well,,, I'm rambling a bit here - guess that's what you get when you blog when you're tired. I'm a bit more tired than usual as Ryan was awake for about 3 hours last night. In my ramblings above, I neglected to mention that Ryan's behaviour was ATROCIOUS this week - disobeying me at every turn, not able to focus at school, whiny, obstinate and just generally frustrating to his mother. I should have known something was physically wrong and yup, last night we discover the poor kid has an ear infection. He never complained but something was probably bothering him over the past few days. And it probably explains the behaviour all this week - he was fighting that infection and was just "off". So, now Ryan is fast asleep - his head hit the pillow and he was out about 10 seconds later. I'm off to watch a movie with my hubby and then I think it's an early night for me. If you've made it this far, thanks for reading this rambling blog entry!
Saturday, April 14, 2007
Thursday, April 12, 2007
Am I happy or ticked off?
First of all, let me say that this is NOT some type of plea for money. NOT AT ALL. Let's get that straight and out of the way.
I'm on some medication that is quite expensive, and because Tom is self-employed, we don't have drug coverage (on the plus side, we do claim the medical expenses on our tax returns so we do get some of it back in the form of a healthy refund). The anti-emetic pills I'm on when I have chemo are quite expensive and then I'm on some pain medication that also gets a bit pricey. Add a few other medications here and there (other anti-emetics, gastro pills etc) and, let's just say I'm helping to buy my pharmacist a new Mercedes Benz.
I had a meeting with my Community Care Access Centre (CCAC) co-ordinator today. CCAC is the organization through which I get my home care nurse. The nurse disconnects my chemotherapy pump. Anyways, after she left, she called back and said, it popped in her head that we might not have drug coverage because Tom is self-employed. When I replied that no, we don't have coverage, she said that, because I'm being seen by a home care nurse, and we don't have drug coverage, we are eligible for a special card that will cover the cost of drugs - IF the drugs relate to the reason I have a home care nurse come in (which, of course, they do). So, she is processing the card today, and effective immediately, we have drug coverage for me.
For that, I'm very very happy.
I'm also very very angry.
I have been seeing a home care nurse now for 7.5 months. Why has NO ONE mentioned this before? I don't blame the nurse, that's not something they would think to ask. But why did my co-ordinator who first come in not mention it? You think that would be something on a checklist to ask.... quite basic in my opinion. It's not something I would ever think to ask..... why would the government offer us free drugs???
So that's 7 months of drugs that are not covered.
And, no, they will not cover retroactively. And for that, I'm really ticked.
____________________________________
One other piece of good news...
Ryan is eligible for funding from another social services department. This funding helps us hire someone to work with Ryan approximately 2 hours a week. We can also use those funds for respite (instead of using them for Ryan's contract worker). Respite allows me to pay for a babysitter for Ryan OR Kurtis and have that covered. I have fought for more than 2 hours a week for a few years now - it really isn't enough for respite AND Ryan's contract worker. I have asked for 6 hours a week hoping that I'd get 4. But no, they always keep it at 2.
Well, I received my letter today for 2007/2008 funding....drum roll please....
4 HOURS PER WEEK! Yahoo! Still not enough, but it's an improvement! I guess playing the cancer card helped this time. ;) That will allow us, when Ryan starts school full-time in September, to have someone come in 2-4 times a week to help him with school work.
I'm on some medication that is quite expensive, and because Tom is self-employed, we don't have drug coverage (on the plus side, we do claim the medical expenses on our tax returns so we do get some of it back in the form of a healthy refund). The anti-emetic pills I'm on when I have chemo are quite expensive and then I'm on some pain medication that also gets a bit pricey. Add a few other medications here and there (other anti-emetics, gastro pills etc) and, let's just say I'm helping to buy my pharmacist a new Mercedes Benz.
I had a meeting with my Community Care Access Centre (CCAC) co-ordinator today. CCAC is the organization through which I get my home care nurse. The nurse disconnects my chemotherapy pump. Anyways, after she left, she called back and said, it popped in her head that we might not have drug coverage because Tom is self-employed. When I replied that no, we don't have coverage, she said that, because I'm being seen by a home care nurse, and we don't have drug coverage, we are eligible for a special card that will cover the cost of drugs - IF the drugs relate to the reason I have a home care nurse come in (which, of course, they do). So, she is processing the card today, and effective immediately, we have drug coverage for me.
For that, I'm very very happy.
I'm also very very angry.
I have been seeing a home care nurse now for 7.5 months. Why has NO ONE mentioned this before? I don't blame the nurse, that's not something they would think to ask. But why did my co-ordinator who first come in not mention it? You think that would be something on a checklist to ask.... quite basic in my opinion. It's not something I would ever think to ask..... why would the government offer us free drugs???
So that's 7 months of drugs that are not covered.
And, no, they will not cover retroactively. And for that, I'm really ticked.
____________________________________
One other piece of good news...
Ryan is eligible for funding from another social services department. This funding helps us hire someone to work with Ryan approximately 2 hours a week. We can also use those funds for respite (instead of using them for Ryan's contract worker). Respite allows me to pay for a babysitter for Ryan OR Kurtis and have that covered. I have fought for more than 2 hours a week for a few years now - it really isn't enough for respite AND Ryan's contract worker. I have asked for 6 hours a week hoping that I'd get 4. But no, they always keep it at 2.
Well, I received my letter today for 2007/2008 funding....drum roll please....
4 HOURS PER WEEK! Yahoo! Still not enough, but it's an improvement! I guess playing the cancer card helped this time. ;) That will allow us, when Ryan starts school full-time in September, to have someone come in 2-4 times a week to help him with school work.
Wednesday, April 11, 2007
Belated Anniversary to me!
I've been blogging for over a year now - April 3, 2006 was my first post here. It's amazing how fast a year has gone, isn't it?
So, I'm turning the tables on this post.
For a year, you've learned about me, my battle with the beast known as cancer, my family ... our ups and our downs.
Now... What about you? I see that I have a lot of visitors coming to check in.... and I really do appreciate it. But who are you? Post (use the anonymous tool and just your first name if you want) and let me know who you are! If you don't feel comfortable posting on a public site, email me. My email address is annettel100@hotmail.com.
Some people have told me they read my blog but don't post a comment because they're afraid it won't sound very good or very nice. As someone on another blog said: "Forget nice, this is cancer." PLEASE don't worry about how it sounds - I don't care. What matters to me is the strength I gain from your comments. You really have no idea how much it means to me to receive communication in any form: a phone call, a card, a meal, a snack, A POST ON MY BLOG! I can't beat this cancer alone - I need strength from others.
So, I'm turning the tables on this post.
For a year, you've learned about me, my battle with the beast known as cancer, my family ... our ups and our downs.
Now... What about you? I see that I have a lot of visitors coming to check in.... and I really do appreciate it. But who are you? Post (use the anonymous tool and just your first name if you want) and let me know who you are! If you don't feel comfortable posting on a public site, email me. My email address is annettel100@hotmail.com.
Some people have told me they read my blog but don't post a comment because they're afraid it won't sound very good or very nice. As someone on another blog said: "Forget nice, this is cancer." PLEASE don't worry about how it sounds - I don't care. What matters to me is the strength I gain from your comments. You really have no idea how much it means to me to receive communication in any form: a phone call, a card, a meal, a snack, A POST ON MY BLOG! I can't beat this cancer alone - I need strength from others.
Master Baker
Kurtis picked up a book at his school library a few weeks ago about baking. It's a child's baking book - full of great pictures and great recipes that a kid would want to make. It grabbed his attention and he asked if we could make cookies. I promised him we could and maybe we could even do them Wednesday after school. (Oh... this is the week we got back from St. Lucia - we got back on Monday night and Kurtis brought home the book on Tuesday afternoon). On Wednesday afternoon, he jumps into the car after school and declares "I asked Miss C. if I could bring in cookies for the class and she said it's OK - can we Mom?" .... sure - a double recipe - no problem! Since we weren't doing much anyways that evening, I decided we might as well do them. Well, part of the baking process is the shopping. Kurtis expected ME to do it all by myself, but I thought it was a good learning experience for him to participate in the shopping. So, by the time we got home and unpacked the groceries, it was almost 5:00 pm. In any event, we made two batches of chocolate and vanilla shortbread cookies - rolled into spirals to make owls, shaped into squares and put together to make a checkerboard square cookie and circle cookies (white with chocolate on the outside) with a long stick on the outside so they look like lollipops. It was actually a great experience for us both. Me...always being the one to try to find a teaching opportunity... realized baking is a great teaching tool: a double recipe makes ample opportunities to teach math ( multiplication, addition and fractions). It is also great to talk about the chemistry involved in the baking process. Kurtis was so proud to bring them to class - and I gotta say nearly the whole double batch went!
So, the next thing I promised was that we would make a dinosaur cake on the weekend. No packaged cake mix here... nope, we had to do it from scratch! Now, first of all, I had a discussion with Kurtis about the appearance of the cake. I told him that the people who made the book spend many, many, MANY hours making the cake look just perfect and JUST like a dinosuar.... and since we didn't have that much time, it was unlikely ours would look like that. Also, their recipe called for homemade marizpan to be made in order to shape the spikes for the back.... well, that just wasn't going to happen - primarily because no one likes marzipan in our household. So, we worked hard on our cake that afternoon. We baked, we cut the cake according to the pictures, we made a very delicious buttercream frosting and dyed it green. And out came our beautiful "dinosaur". Let's just say, Kurtis was pleased with the outcome and that's all the really matters, right?
We brought the cake to a get together with some friends the next day. With 8 adults and 8 kids, we demolished a fair chunk of the cake (which Kurtis was NOT pleased with - he was hoping for a lot more leftovers).
And Kurtis made us photocopy a lot of the pages of the book as he hopes to have many more baking projects in the near future.
So, after all that build-up, I can't just leave you without a picture, now can I??? (The toothpicks were left in after transport)
Tuesday, April 10, 2007
Update - April 10
So.. here I am, 8 days later. Things went pretty good for the first 3-4 days. No anticipatory nausea... in fact, no nausea at all. And my energy was pretty good too. Thank you for your prayers - they worked! Then Sunday hit... nausea and extreme fatigue again. I've said it before, and I'll likely say it again, this is so frustrating!!! I wish I could figure out what is going on! Why do I feel half decent for 3-5 days and then feel worse on day 6? Yesterday and today I'm still dealing with the fatigue and trying to go with the flow and not get too upset about it.
Nuff about that.
CT Scan results: I had a scan done at the beginning of March and found out the results last week. The same... as the time before...and the time before that...and the time before that. So, we continue with the chemo regime and continue to fight the beast.
I was able to make it out long enough yesterday to attend the funeral of a long-time friend of my parents. He passed away after his battle with cancer at the age of 73. Although there was obviously sadness at the funeral, there was also such incredible hope that came through. Having just celebrated Easter, we were reminded how Jesus has conquered Death. Cancer, although it may take our mortal body, has no affect on our eternal life - Jesus made sure of that, once and for all, by dying for us. How blessed we are. At the funeral, we recited a "creed" of our church (Question and answer 1). I'm sharing it here as it is so important to me and the words mean the world to me:
Question: What is your only comfort in life and in death?
Answer: That I am not my own, but belong - body and soul, in life and in death - to my faithful Saviour Jesus Christ. He has fully paid for all my sins with His precious blood and has set me free from the tyranny of the devil. He also watches over me in such a way that not a hair can fall from head without the will of my Father in heaven; in fact, all things must work together for my salvation. Because I belong to Him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for Him.
Nuff about that.
CT Scan results: I had a scan done at the beginning of March and found out the results last week. The same... as the time before...and the time before that...and the time before that. So, we continue with the chemo regime and continue to fight the beast.
I was able to make it out long enough yesterday to attend the funeral of a long-time friend of my parents. He passed away after his battle with cancer at the age of 73. Although there was obviously sadness at the funeral, there was also such incredible hope that came through. Having just celebrated Easter, we were reminded how Jesus has conquered Death. Cancer, although it may take our mortal body, has no affect on our eternal life - Jesus made sure of that, once and for all, by dying for us. How blessed we are. At the funeral, we recited a "creed" of our church (Question and answer 1). I'm sharing it here as it is so important to me and the words mean the world to me:
Question: What is your only comfort in life and in death?
Answer: That I am not my own, but belong - body and soul, in life and in death - to my faithful Saviour Jesus Christ. He has fully paid for all my sins with His precious blood and has set me free from the tyranny of the devil. He also watches over me in such a way that not a hair can fall from head without the will of my Father in heaven; in fact, all things must work together for my salvation. Because I belong to Him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for Him.
Tuesday, April 03, 2007
Chemo Time Again
Please pray for me today, if you can. Pray that this chemo is "easy", pray for emotional strength for me to get through this and for physical strength as well. Although this chemo is relatively easy from the nausea point of view, the fatigue I experience really gets me down and last time I found it very difficult. I know it's going to be 5 days of fatigue and sleeping, and that by Sunday I'll be OK, but it's still hard to get through those 5 days. I'm also experiencing strong anticipatory nausea. This means that I'm getting sick even before I get my chemo. Last time I threw up once before I got my chemo and once fairly soon after (before the chemo really had a chance to do anything). Pray for this to go away.
I also ask that you pray for Marissa. I actually don't know Marissa, other than through the blog, but my Dad knows her husband and her father-in-law. She is battling breast cancer while also having 3 young children to take care of. She has chemo today as well.
I also ask that you pray for Marissa. I actually don't know Marissa, other than through the blog, but my Dad knows her husband and her father-in-law. She is battling breast cancer while also having 3 young children to take care of. She has chemo today as well.
Monday, April 02, 2007
Adventures in the Middle of the Night
Boy, are we having fun with Ryan in the middle of the night!! As Kurtis says, "NOT!"
Over the past few months, Ryan has started to become afraid of the dark. So, occassionally he will wake up, go into the room that is off his bedroom, turn on the light and go back to bed. No problem there. But, in the past month or so, he's decided that's not enough light. So, now, he goes throughout the house and turns EVERY SINGLE light on....and I do mean every light - hall lights, dining room light, the light in Kurtis's bedroom, kitchen light, bathroom light, AND the porch light! Then he comes into our bedroom and says it's time to wake up. This is around 3:00 - 4:00 in the morning, by the way.
Last night I was woken up at 3:30 am by a little boy asking for help with his socks. I look and there is Ryan.... fully dressed for the day. He has taken his pj's and his night time pullup off, put his pj's where they belong, put the pullup in the diaper genie, gotten clothes out of the drawers and fully dressed himself. He usually puts his own socks on too...but I guess at 3:30 he figured he needed some help! I had a bit of a hard time convincing him it wasn't time to get up and that we needed to sleep some more.
Thank goodness we have a lock on the door that he can't reach - othewise he just might have walked himself to school!
Over the past few months, Ryan has started to become afraid of the dark. So, occassionally he will wake up, go into the room that is off his bedroom, turn on the light and go back to bed. No problem there. But, in the past month or so, he's decided that's not enough light. So, now, he goes throughout the house and turns EVERY SINGLE light on....and I do mean every light - hall lights, dining room light, the light in Kurtis's bedroom, kitchen light, bathroom light, AND the porch light! Then he comes into our bedroom and says it's time to wake up. This is around 3:00 - 4:00 in the morning, by the way.
Last night I was woken up at 3:30 am by a little boy asking for help with his socks. I look and there is Ryan.... fully dressed for the day. He has taken his pj's and his night time pullup off, put his pj's where they belong, put the pullup in the diaper genie, gotten clothes out of the drawers and fully dressed himself. He usually puts his own socks on too...but I guess at 3:30 he figured he needed some help! I had a bit of a hard time convincing him it wasn't time to get up and that we needed to sleep some more.
Thank goodness we have a lock on the door that he can't reach - othewise he just might have walked himself to school!
Sunday, April 01, 2007
I've been tagged (a long time ago)
Nicole tagged me a while ago.... I'm just now getting around to it. I'm supposed to write my 5 favourite things about feminism. So, here goes.
1. Equal pay for equal work. I remember Mom telling me that, when she worked at the bank, a man she worked with received more money than her, for the exact same job, because "he had a family to provide for". How unfair was that?
2. We have our choice of careers.... homemakers to race car drivers. Doctors, teachers, accountants...nothing is off limits anymore.
3. Men are getting more in touch with their "feminine" side... They can do housework, cook dinner, change a diaper and no one cares. I see this as a side effect of feminism because women started expecting the men in their lives to do more - especially where women are bringing home the bacon!
4. Not changing your last name when you get married is OK. I did change my last name, but I think I might keep it if I would ever have the choice again.
That's all for now...
1. Equal pay for equal work. I remember Mom telling me that, when she worked at the bank, a man she worked with received more money than her, for the exact same job, because "he had a family to provide for". How unfair was that?
2. We have our choice of careers.... homemakers to race car drivers. Doctors, teachers, accountants...nothing is off limits anymore.
3. Men are getting more in touch with their "feminine" side... They can do housework, cook dinner, change a diaper and no one cares. I see this as a side effect of feminism because women started expecting the men in their lives to do more - especially where women are bringing home the bacon!
4. Not changing your last name when you get married is OK. I did change my last name, but I think I might keep it if I would ever have the choice again.
That's all for now...
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