Beautiful St. Lucia

So, I know it's been quiet the past week and a half or so. That's because Tom and I just spent a week in beautiful St. Lucia and we got back on Monday night.


What a gorgeous place St. Lucia is. It's very mountainous and full of lush, green vegetation. We spent the week at a Sandals resort there. It's the first time I've stayed at a Sandals resort, and now I highly recommend them. The staff was helpful, courteous and friendly - all making for a very pleasant stay. We had requested a room on the ground floor - which we received - so I didn't have to do too many stairs. The food was generally pretty good too. In particular, we really enjoyed the Italian restaurant and ate there twice. I didn't do too much during the week.... a lot of sitting by the pool (out of the sun so I wouldn't get burned) and reading. We had a short spin on a Hobie Cat and a short spin on a jet ski. Tom got in two 9-hole rounds of golf. There was a golf course attached to our resort so the green fees were free (altho you had to pay a very small amount for the mandatory caddy). I did manage to squeeze in a massage and a facial in the spa there. It was amazing - I felt like a big bowl of jello after that! One of the highlights of the trip was going to a cricket match. The World Cup of Cricket is going on right now in the West Indies and on Thursday, Canada was playing New Zealand. The hotel was good enough to help us get tickets and a driver to take us there. Tom learned a lot about cricket before we left and while we were there by reading and watching the games, so he was able to help me understand the game. The games in the World Cup are restricted to one day (from about 9:30 am to 5:30 pm) but we thought even that was too long so we showed up around noon and left at 4:30 pm when it because obvious that Canada was not going to win. The Canadian team was the underdog but when they first came to bat, we were beginning to hope for an upset! Unfortunately, they were unable to sustain that momentum and eventually lost.


And now it's back to real life again. The kids are, of course, glad to have us back and we're glad to see them again.


The Cricket Match and some beautiful girls at the cricket match. Apparently, the World Cup of Cricket is such a big deal that all the schools have class trips to see a match. And it's so cool to see because all the schools have uniforms and they are all so colourful.

A typical roadside view:

The bananas (the chief crop of St. Lucia) are grown in blue bags to keep them from ripening.

The golf course:

Enjoying a beverage while watching the beautiful sunset:

Cool pictures - "The Right Angle"

Some sunshine

Here is a picture of some sunshine I received the other day from my friend, "M". "M" has been such a wonderful support to me... bringing meals, baking Christmas goodies for us, and a surprise gift of sunshine in the form of tulips. Thank you M! I love tulips so much, I think they're probably one of my favourite flowers. They remind me of spring - they start to bloom when winter has lost its glory.... the snow is dirty, the brownish grass is starting to peek through. But then tulips start arriving... full of beautiful colour and full of the promise of spring. Tulips always make me thankful to God for the seasons we get to experience and for His beautiful creation. So many wonderful things in it.... how can I not be thankful?

"M" is representative of the wonderful friends I have who have been supporting me through this past year. I say it often, and I'll say it again, all the cards, emails, meals, goodies, flowers and prayers I receive truly do mean the world to me. It helps keep me strong and I thank you ALL again.

Now... here's some pictures of one of my other sunshines, Ryan. Ryan and I were killing some time waiting for Kurtis to finish his skiing lesson. Ryan is such a ham so I took a ton of pictures of him acting for me. For those of you who know sign language, can you identify some signs??

Back again...

This round wasn't bad either... not quite as good as the previous one, but by all my standards, a "good" one. It's interesting how I rate them now....compare them to previous chemos and figure out how to improve how I feel. My little science experiments, I guess!

This one was a bit harder emotionally though. It's been one year now since I started chemo. March 20, 2006 was the day I received my first chemo. This isn't an anniversary I'm going to celebrate! 14 chemos later, I'm still going through it. That kind of hit home this chemo and it's been a struggle for me emotionally. I mean, I'm obviously happy I'm still alive... but it's been a horrible year and this chemo is wearing me down. It's tough to go through chemo month after month knowing that you're going to feel horrible for one week out of every four.

I also hate what this is doing to Kurtis. He's starting to show fears of things he's never been afraid of. When we flew to Florida, he was terrified to fly because he was afraid of crashing. He remembered a discussion we had a long time ago about 9-11 and the planes that crashed that day. Last night, he had a headache (after a long day of skiing in warm weather with sunlight reflecting off the snow - not surprising!). He happened to see a commercial about strokes and one of the symptoms was headache. He got very scared and immediately jumped to the conclusion that because of the headache, he might have cancer (he missed the stroke part, but jumped to cancer instead). It took a while to reassure him that he did NOT have cancer or a stroke, and that the headache was just caused by all his activity that day. A few other things have happened too.... so we now have an agreement that we won't talk about anything that I think he might think is scary.

Please keep us all in your prayers. For healing for me, for strength and calmness for Kurtis, strength for Tom as he continues to be the rock in our family...

I'll work on a more cheery post for tomorrow. I promise!

That time again...

wow,, that old cliche about time flying? It's true. How can 4 weeks have passed so fast? So, I'm heading in this morning for another chemo treatment. #14. I can't believe I've had 13 treatments already either. Please keep me in your prayers that this treatment goes as easily as last time.... easier if possible!

Oma has the boys today as they have another "snow" day. The skies are clear, there is no wind and no snow, but the school board closed all the schools because of the cold. Ryan's happy about that as he was not thrilled about going to school today. We did consider keeping him home anyways as he's battling a cold. It's one of those colds where you're not sure if you should keep them home. It's not bad.... but you don't want to spread it... and you don't want him to get worse. So, I guess the snow day took care of that decision for me! I'll have to post soon about his party. Ryan had his first ever "kids party" on Sunday. What an event!

See you in a few days.

Signing Time Road Trip

This past weekend, the boys and I headed out for a road trip to Indiana. We went to visit Jan and her family, along with Nicole and her family and Lisa and her daughter. I know Jan, Nicole and Lisa from my on-line Down syndrome community. The excuse for this get together is a "Signing Time" concert. Signing Time is a wonderful series of videos that we used with Ryan to teach him sign language. Actually, I would say he learned 98% of his signs from these videos - they are WONDERFUL! Ryan is a very visual learner and loves music, so this set of videos hit the spot with him. They combine great visuals of kids showing the signs with catchy tunes.

Anyway, Ryan loved seeing Rachel "in real life" and I think Kurtis really enjoyed it too. I loved seeing Nicole and Jan again and meeting Lisa for the first time. I found it so cool to see how different all our children are. If anyone ever says that kids with Down syndrome are all the same, they should have been there. AND,,, if anyone ever says that they're all loving and sweet, they should have been there! LOL

Thank you Jan and Jeff for being such wonderful hosts! It was so nice of you to open your house to us and let us invade!

Jan, Nicole, me and Lisa enjoying some vino:








Adorable Lily. Ryan loved Lily, but she wasn't too thrilled with having him in her face - can't say I blame her as Ryan "loves" babies just a bit too much sometimes.















Jan and Nash with Rachel from Signing Time:










Nicole, Darrah and Tarenne with Rachel:










Us

Happy 6th Birthday Ryan!

Happy 6th birthday sweet boy of mine!

Ryan is so proud to be SIX and so thrilled that it is HIS birthday today. Unfortunately, because of skiing, we weren't able to have a family "party" so we had him open one present this morning and we sang happy birthday to him. He received a gift certificate to buy a movie from his contract worker (a woman who comes in and works with him 2 hours a week) so we went shopping to buy it. Ryan was determined to buy an "Elmo" video.... I don't know why.... I suggested The Wiggles, Dora, Brother Bear and a host of others but the whole way to the store AND in the store, he kept saying Elmo. Needless to say, we got 2 Sesame Street videos! And of course, since it was his birthday, I let him watch both.

After dinner, I took him to Dairy Queen for a birthday ice cream while Tom and Kurtis were skiing. Yummy!

Here are some recent pictures of my smily guy. Isn't he beautiful?? When he was born 6 years ago, all I immediately thought of was the bad stuff about having a child with Down syndrome. I was so sad for all I thought we had lost. But, I had no idea the joy that was in store for me. When he was born, my sister gave me a wall hanging that has his name with its meaning. It goes as follows:

RYAN

One of Laughter

Thou wilt show me the path of life;

in thy presence is fulness of joy; at

at thy right hand there are pleasures

for evermore. Psalm 16:11

I remember thinking how ironic that was.... there was no way this child would be "one of laughter".... how could there be joy and laughter? It just wasn't going to be possible.

And now I realize how appropriate that meaning actually is. Ryan is one of the happiest children, or people for that matter, that I know. Yes, he does get sad, angry, upset.... but it doesn't last long. He is a joker - he loves being silly and making people laugh. He smiles almost all the time. He greets everyone with huge smiles and hugs. He says hello to strangers in the store and almost always gets smiles out of everyone (even the grumpy sales staff!). He brings such incredible joy to our lives. We truly are lucky to have been blessed to have a soul like his in our lives. Thank you God for bringing Ryan into our lives - he truly is a gift.

Tom is in the news!

For the 3 (out of 5) awards the city handed out for great buildings? Nope.

For the zamboni!

Here's the picture from the front page of the Guelph Mercury in today's paper. (Kurtis was a little upset he wasn't in the picture. I don't blame him - poor kid. The photographer actually did include him as he's beside Joshua, but I guess they had to cut him out when putting the picture in the paper). I also got a kick out of how they brought "insurance" issues into the article and that the city is going to be investigating safety concerns. Give me a break.....


Zamboni brings big-league touch to neighbourhood skating rink
Developer trades shovel for snow-clearing machine to help maintain ice surface
THANA DHARMARAJAH

DARREN CALABRESE, GUELPH MERCURY
Joshua Sheahan chases a laughing Ryan Lammer, 5, who rides along as his dad Tom Lammer drives a Zamboni down Crestwood Place. Lammer, a neighbourhood volunteer, was tired of clearing the outdoor rink at St. George's Park with a shovel, so he bought the used snow-clearing machine in Milton.


GUELPH (Feb 20, 2007)
Local developer Tom Lammer got tired of shovelling the ice rink at St. George's Park, so he bought himself a Zamboni.
The bright blue-and-white snow-clearing machine can occasionally be seen heading down the street to the park, located near Metcalfe and Palmer streets.
Lammer said time constraints kept him from contributing more often to neighbourhood duties.
"I wasn't able to put in the hours I would've liked to," he said, "so I just brought a big shovel to the job. I thought it would be a smart thing to do."
So now what would take two hours takes him a mere 15 minutes.
Neighbourhood committee members take turns maintaining and operating the outdoor rinks in the city.
The city assists during major snowstorms and provides neighbourhood groups with hoses to flood the rinks.
Lammer said he bought the used Zamboni in Milton in mid-July, the perfect time to get a deal.
He wouldn't reveal how much he shelled out for the machine, which he keeps stored in his garage.
"It is no more than the cost of a good snowblower, that's how I justified the expense," Lammer said.
"It sounds like a neat idea," said Jeff Schroeder, who helps maintain the ice rink at Exhibition Park.
"It would be a fun toy and it would be faster," he said.
Schroeder said the cost and the difficulty of storing it would deter him from doing something similar.
But he said he has often thought of asking the nearby arena about borrowing their Zamboni.
Ian Haras, supervisor of park activity with the City of Guelph, said there's no bylaw that Zambonis can't be used to clear off neighbourhood ice rinks.
"It's so unusual," he said. "Ice rinks are maintained by volunteers. We allow them some latitude with maintaining these rinks."
He added the city will examine safety concerns resulting from using snow-clearing machines such as Zambonis on outdoor rinks to prevent accidents.
Meanwhile, Lammer said he's mindful of legal concerns and said his Zamboni is insured and only operated in the late evenings when people aren't using the rink.
tdharmarajah@guelphmercury.com


The following picture is on the website for the Guelph Mercury but it actually appeared in the Toronto Sun yesterday on page 6.... a huge black and white picture with the title "Now that's Canadian!".

Tom Lammer drives his Zamboni across Palmer Street.

Mystery solved? Keep your fingers crossed!

This round of chemo seemed to be very easy. Normally, I get 5-6 days of extreme fatigue, nauseousness and vomiting (which is generall managed with anti-emetics). I then get 2-3 "good" days and then, unfortunately, I get sick again for another 4 days or so (see these posts http://bump-on-the-road.blogspot.com/2006/12/too-soon.html and http://bump-on-the-road.blogspot.com/2007/01/arrgghh-can-i-whine.html). It was very frustrating to say the least as I was ending up being sick for almost 2 weeks.

This past round was easier: I had 5 days at the beginning of extreme fatigue (i.e. sleeping between 18 and 20 hours a day) and generally not feeling great. BUT... I was not nauseous and did not throw up at all. But more importantly... with this round, I had no second bout of sickness... NONE! I just had the 5 days of feeling lousy and have been fine since then. I am tired, but that's OK. I'm just thrilled I wasn't sick for another week!

It seems that perhaps the answer is due to my digestive system. It appears this chemo slows my digestive system down a lot. So when I started feeling good again, I would start eating again and this would lead me to being sick as my system was not able to process the food. So now the doctor has prescribed some medication that I take with meals and at bedtime to help my system move things along better. I think this is the answer as I haven't had any nauseousness or any of the feelings I normally get. I used to get feelings of being very full after a few bites, or feeling that I couldn't even swallow my food as there seemed to be "no room" down there. So keep your fingers crossed! If this is the answer, my chemo regimen has now become bearable again!

Holland is amazing!

My parents were both born in Holland and immigrated in 1951, so I'm a bit partial to the Dutch and Dutch traditions and culture. So when I received the following poem when Ryan was born, it was very appropriate. I came across this picture today and thought I'd share both. I've been in "Holland" now for almost 6 years, and I must say it is a beautiful place! It's a place full of body hugs and lots of kisses, of laughter and jokes and giggles, of learning, of appreciating differences, and ultimately, of love.




WELCOME TO HOLLAND

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Yes Ma'am!!!

One thing about having a child who is essentially non-verbal is that sometimes you tend to underestimate what they take in and understand. I always tell people Ryan understands FAR more than you think ---- simply because he can't tell you everything!

Two days ago, as we were finishing dinner, I asked Ryan to get the children's Bible out of the drawer for our after dinner devotions. He got it out but forgot to close the drawer. So I said, "Ryan, please close the drawer". He did it... turned around... and then saluted me as if to say "yes Ma'am, right away ma'am!" Too too funny! Where does he pick this stuff up??

We're in the middle of another deep freeze here. I'm finding the cold weather to be very hard on me. I felt so much better in Florida - not as achy or sore. The boys have skiing again tonight but I'm worried about Ryan. Kurtis dresses up VERY warmly and has glove and foot warmers AND his class can move to the other side of the hill to get out of the wind. Ryan dresses warmly too, but he can't get out of the wind as he stays on the "magic carpet" hill. I'm going to try the glove and foot warmers with him - let's hope he goes for it! Ryan does NOT like hats, gloves, or other things along that line so I may have some trouble with the balaclava and the warmers. He also does not like wind in his face so it may be a short lesson! He's already missed the last two sessions (Florida and a bad cold) so I'd hate for him to miss more.

Joy is nowhere to be found today...

Such a sad day for our community, and on a personal level, for me.

A 10 year-old boy who lives on the street behind us was killed in a freak accident today (The K-W Record story). Yesterday, he had been at the ice rink at the park by our house when he was hit on the head by a puck. He was declared brain dead today. This boy's father is a business partner of Tom's in Old Quebec Street so, although we don't know this boy well, we do know his parents and feel devastated by their loss. Our whole neighbourhood community seems to have been rocked by this. I spent the evening at my neighbour's house with her and another neighbour just talking and talking. It's so horrible to talk about a 10 year old losing his life so tragically and suddenly. We try to make sense of it, but can't. Give your children an extra hug today and cherish them dearly.


On a more personal level, I also found out about the death of someone I never met in person. I met H on-line in a support group for people with cancer. We have emailed and have spoken on the phone a number of times. I mentioned her in a previous post. Apparently, she died rather suddenly in early January. I don't know the details as I didn't feel comfortable asking her family, but I am greatly saddened by this as well. It brings cancer just a little too close to home right now.

I've edited what follows significantly... deleted one whole paragraph and added another... so some comments may not make sense...

So, there wasn't a lot of joy to be found today. And that's really how it should be. We shouldn't gloss over the pain of losing someone so young. I do pray, however, that one day, Sue and Andrew will able to find joy in the memories of their son. Here's the follow up story.

Choosing Joy

Today, I was reminded once again to "choose joy". I receive a daily on-line meditation (HenriNouwen.org) and as I was catching up on my emails, I read this meditation:

Choosing Joy:

Joy is what makes life worth living, but for many joy seems hard to find. They complain that their lives are sorrowful and depressing. What then brings the joy we so much desire? Are some people just lucky, while others have run out of luck? Strange as it may sound, we can choose joy. Two people can be part of the same event, but one may choose to live it quite differently than the other. One may choose to trust that what happened, painful as it may be, holds a promise. The other may choose despair and be destroyed by it. What makes us human is precisely this freedom of choice

I truly believe that each and every one of us can choose our response to adversity... we can mope and feel sorry for ourselves.... blame others or ourselves... or we can choose joy. I found myself feeling sorry for myself this past chemo - not something I do a lot and consciously try to avoid as I don't like the downward spiral it leads me into. But I found myself indulging in a bit of a pity party as I was feeling so low. Now, don't think I'm some sort of Polly Anna - I'm not going to be shouting the joys of chemo anytime soon. But what I can do is choose to look at my chemo as something that is keeping me alive and that will, God willing, heal me. I can be thankful that I live in a country that has access to good medical care (as much as we complain about it in Canada, it really IS good). So that is my goal for this week.... choose joy wherever possible.

Mickey says hello!

Wow - what a trip! It was by far the least relaxing trip I've been on, but we did have fun! Busy...busy... busy....





We stayed at one of the Disney Resorts (Port Orleans, Riverside) and I'm so glad we did. Easy access to all the parks by bus and we could easily come back for a rest if we needed to. We also did the meal plan and enjoyed some great meals (that were worth far more than what we paid in the meal plan!). And boy, did we eat! I think we're all going through ice cream and dessert withdrawal today.

Ryan getting a hug from Woody. The cast was sooooo good to Ryan. In this case, Ryan was crying because he saw Woody go by, but he didn't get a chance to say hello. One of the dancers asked me why Ryan was crying, so I told him. He then went up to Woody and asked him to come by and say hello. And Woody did... not once, but twice! Ryan was the only child Woody talked to and Ryan was soooo thrilled! He really really enjoyed meeting all the characters. Kurtis is a bit too old for that as he knows they're not real, but to Ryan, it's magic meeting all the characters!

















And Ryan with Winnie-the-Pooh and my niece, Sara.





















Ryan and I at Blizzard Beach. The rest of the gang was heading down the incredible water slides!

















Kurtis and I enjoying one of our many meals.



















Ryan, Sara and my nephew Connor, meeting Pluto. Did I mention that my sister, her husband and her two kids came along? It was so great to have Lisa there to help with Ryan (he was a bit of a handful... so much excitement and so many things to see and do).

My Dad with the kids. I was so thrilled that my Dad was able to come along too. He did a lot of very patient waiting as the gang went on the rides (I did a lot of waiting with him as I really wasn't able to ride the roller coasters and other rides like that).


















The warm weather must have been good to me as I had a lot of energy - I only went back to the hotel to rest on two days (and that was mostly because we were going out at night and both Ryan and I needed to rest). We did use the wheelchair a few days, but for the most part, I was able to walk and keep up. One of the nicest things about the trip was that I didn't think about cancer or chemo. Normally it seems it's ALWAYS on my mind - and I realized that once I got back home and I started thinking about my chemo treatment tomorrow. But while we were in Disney, we were so busy and there was so much to take in, it very rarely crossed my mind. What a treat!

Scan results

so I got a quick call from a nurse about my CT scan results. It's just not the same as talking to the doctor so I won't find out the details until my next appointment in February but... basically, the scan shows no change. Again.

The good news is that once again there is no growth. The frustrating thing is that there is no reduction. All we're doing right now is holding this beast at bay, not destroying it. I'm trying not to let this get me down and focus on the good news.

The other news is that my doctor has agreed to move to a 4 week cycle (instead of 3). This will give me more time to recover after chemo, instead of the 7 days or so I was getting. This will allow me to gain more strength and energy and build up my blood as well. We're going to obviously keep an eye on this.... if the 4 week cycle causes the chemo to work less effectively, we won't do this.

And one more piece of "good" news (I guess...) - there's another clinical trial coming down the pipeline. It should be available in the middle of 2007. So in the event this chemo stops working, we do have something else to try.

So I continue to ask for your prayers. I need this chemo to start reducing the tumor size. I need to have the 4 week cycle work. I need to gain strength and energy.

Food, glorious food!

Well, I can tell when I start feeling good for real. I start fantastizing about food. And, yes, I am feeling better. Yesterday was a "good" day - for real. And I have been fantasizing about a thick, juicy, tender filet mignon from The Keg for two days now. I wake up thinking about it. When I wake up in the middle of the night, I think about it. How weird is that?

I don't know what it is. Perhaps after 1.5 - 2 weeks of eating virtually nothing, my body is telling me it wants FOOD! And it's interesting in that it's never the same stuff from chemo to chemo. I've had pineapple cravings, nacho cravings, coke cravings.... It's like being pregnant. I sent Tom out at night for pineapple as I just HAD to have it. I got nachos at Taco Bell for crying out loud. I haven't eaten at Taco Bell in years (decades?) but those nachos were just calling out to me. As for Coke,,,, I never, ever drink Coke. I will occassionally have Diet Coke, but never the real thing. But the one chemo, I probably had 3 cans of it in 2 days. So this session appears to be steak. There's no way my digestive system could handle that much red meat right now so perhaps Tom and I will go out next weekend... I'm also craving a fettucine dish that we make very rarely (the last time we had it was probably 3 years ago)..... shrimp, tomatoes and goat cheese... rich but yummy. Maybe we'll have that tomorow night.

So Tom and Kurtis just headed out to go skiing. Only a few runs are open, but they are open! Kurtis starts his lessons tomorrow night and goes on Mondays and Wednesdays. And Ryan starts his lessons on Wednesday. Both boys LOVE skiing so much. It's especially great to see how much Ryan loves skiing - I can't wait until he learns to use a chair lift so that we can take him (right now, we're restricted to lessons only for Ryan as he's still learning to control speed and has never used a chair lift).

Perhaps Ryan and I will go out for breakfast together. The breakfast special is calling me!!!

arrgghh .. can I whine??

How I wish I could have some REAL wine! I miss it....

And how I wish I could figure this chemo out. I'm frustrated with it. I was feeling so good after the chemo last Tuesday (the 2nd). I was tired and nauseated for two days; but the nausea was minimal and the fatigue was not totally overwhelming (ie I didn't sleep 22 hours a day). I felt pretty good Friday and Saturday and even managed to make it to my brother-in-law's party on Saturday night. I only went for 2 hours, but still, I went! Sunday was OK too and then Monday hit. I was sick on Monday and ended up sleeping most of the day. On Tuesday I felt pretty good in the morning but got sick around noon. I felt OK after my nap but not great. Then Wednesday and Thursday were rough. What's up with that? Why would I get sick a week after the chemo? Friday was a bit better and I managed to eat a bit again. Today I'm still very weak and feel tired but at least the nausea seems to be finally gone. I wish I had more energy as the local ski slopes just opened today (FINALLY!!!) and I would love to take Kurtis skiing before his lesson on Monday.

But now I can work on gaining some strength back. Have I mentioned we're planning a big trip? I'm soooooo excited about this. We, along with my sister and her family AND my Dad, are going to Disney in Florida! We're doing the Disney thing for an entire week.... staying at a hotel on Disney.... doing the ParkHopper passes and the meal plan.... relaxing at the pool at the hotel. The whole works. We decided to just do Disney (and not include Universal and Sea World etc) to try to keep things simple and not too busy. I'm a bit worried about the amount of walking involved for me, so I think we're actually going to get a wheelchair so that I can rest if I need to. And since we're staying at Disney, I can go back to the hotel, if needed, for a nap. So, if you have any Disney tips... pass them on!

And if you have any tips on why this chemo is hitting me a week later, I'd love to hear them too! :)

Happy Saturday everyone

Why It Matters

As you can tell, termination of children with DS bothers me deeply. Why? Why should I care what someone else does? After all, isn't it their lives, not mine? Most of the time, I don't care what other people do - it is their life to live, not mine. Even though I'm a Christian, I do not believe I have the right to push my views on you. And believe it or not, many people who have a child with DS are pro-choice and support abortion rights. Many are not Christians and many do not have any religious beliefs at all.

But what I do have is first-hand experience. I have knowledge that most people don't have - I know what it is like to live with a person with DS. I know what is involved in raising a "disabled" child. I know the heartaches, the work involved and the stress. I also know the incredible joy, love and rewards. I know that life pretty much goes on as normal. This is what I wish prospective parents would receive - information from someone who has been there, done that. Instead of just receiving technical, often out-of-date information from a technician or doctor.

So why do I care? Because of Ryan. Because I do not want him to feel devalued... I don't want him told that he is "less than". How do I explain to my son, who I love so much, that society thinks his life is worth less than everyone else's? How do I explain that society is working very hard at eliminating people like him? How do I teach him to deal with some, a potential employer perhaps, who thinks he never should have been born? It's not something most people ever have to deal with. But try thinking about it from Ryan's point of view.... and perhaps you'll see it from my point of view too.

But here...here is an article that says it so eloquently.

A wonderful person I met on the internet, Betsy, wrote this piece. Here is a link to her blog: http://bits-of-betsy.blogspot.com/. This piece is amazing and speaks directly from my heart (even though I didn't write it).

WHY IT MATTERS
I think that what we say on the internet has as great an impact on others as our real life words do. If you think about your support system since your child has been born, wouldn't you rate this vehicle of communication very high? When you wanted to learn more about Down syndrome, didn't you go to the internet? Isn't that where the acceptance really started for you? It did for me, anyway.

This whole issue that we discussed the last two weeks became a debate on another website I visit. In essence, it turned to one of my friends saying that she would without a doubt abort if she found out her baby had DS. As the debate continued, she said it wasn't directed at anyone, and didn't effect anyone except her. She knew that I was posting and reading the thread. For a few days, I didn't answer it, feeling as you do, that my words were not going to make a change. Anyway, I ended up answering it, and I'd like to post a part of it here. I think it will explain what I'm talking about. Its really long, sorry.

Here it is: You can’t say that your opinion does not affect my family or my child. The opinion that a baby with DS is disposable, and can, and perhaps should be aborted, greatly impacts my child’s life. It impacts her every single day. It impacts people’s opinions of her. It impacts their first impression of her. It sometimes impacts the medical care she receives. It impacts her ability to be educated with her peers. It impacts her classmates, who perhaps have been told that her Mom didn’t have a choice, or didn’t know, or that ‘nowadays, doctors are able to take care of that before the babies are born.’ It impacts her sister, because when Dakotah was 3.5 years old, and showing off her little sister to her friend Michael for the first time, Michael said, “Daddy says Paige is a freakazoid.”
And you know what….it has greatly impacted me this weekend. I have shed so many tears over this thread that I have been nauseous all weekend long. It greatly impacted me, when I took my beautiful daughter Christmas shopping today, and for the first time in a very long time, spent half the time wondering if people were looking at her in pity or disgust.
It affects my posting here, because I feel very vulnerable and hurt by your words. I feel very hesitant to talk about my child, to share her pictures, or her newest achievements, because it makes me stop and wonder if people are looking at her and thinking, “Thank GOD that’s not MY child…”
It affected me a great deal this weekend, because I wanted to take my sweet baby girl and curl up on her bed with her, and protect her from the great big world who has such differing opinions of her worth. I wanted to hold this time in her life still forever….because she knows nothing but love and acceptance now. She does not know that science is working furiously to annihilate people like her…and that women are rushing to sign up for that knowledge. It affects us a great deal, because she must face that prejudice every single day – she will be the one who will have to be taught way too soon what words like ‘retarded’ and ‘retard’ and ‘mongoloid’ mean. My other daughter will have to deal with peers who will argue their desire to abort any child who has Down syndrome, and wrestle with the love for her sister over the love for her friends. So, don’t tell me it doesn’t affect me.

The view that babies with DS are disposable is what makes people tsk tsk and move away from me in a store, or makes them shuffle their kids away before they ask any questions (which I would have been happy to answer). That view is what makes the market on prenatal testing so great---instead of spending money trying to cure such fatal things as Cystic Fibrosis, or Tay Sachs disease, research spends all their time on the current ‘hot topic’ – Down syndrome. By the way, this is something you’ll be very interested to learn. Scientists are now discovering that perhaps kids with DS can be identified prenatally by a missing bone in the nasal area. (Annette's note - already discovered) This makes it all so much neater, and easier, because you can abort even sooner, and how much more convenient is that? Oh, and the added bonus is that you won’t need an amnio anymore…so there’s no chance of risking the life of a ‘normal’ baby—we know how tragic killing THAT baby might be. So, if they get really, really good enough, maybe they can eradicate every human being with an extra chromosome. And of course, with so many women blindly following their doctor’s ‘professional’ advice, it often doesn’t take much more than a sorrowful eye, or a sympathetic pat on the back, or a slight suggestion that perhaps its ‘better’ to just abort, to make a woman just learning a very frightening thing about their child decide to take the easier, tidier route out.

Of course, let’s not forget the financial aspect of it---it's neater, cleaner, easier to abort than it is to risk medical bills for a child with DS…after all, what will they ever give back to society? My child’s medical bills (ironically, NOT related to Down Syndrome) probably number in the millions of dollars. And perhaps she will never be a doctor or lawyer, or President who can ‘give back’ all that money. But most likely, she will never be in jail for killing her boyfriend, or a mother of 10 kids she can’t care for. And there is no price tag for the beautiful lessons she has taught me. Each of us should aspire to be that great of a teacher in our life times, and should perhaps use that as a scale for ‘success.’

It ticks me off, because people hold me on a pedestal…’Maybe you can handle it, but I couldn’t…” Of course you could…we can do anything we want, with the proper resolve, determination, and most of all love… I’m not special, I am no better a mother than any of you here. I’ve had no less problems because I have a child with DS…I’ve had to deal with everything each of you has in my adulthood---losing someone I love, financial problems, marital strife, etc, etc. etc. I didn’t get an instruction manual when Paige was born to me….what I did get is a clear perspective of my ability to love my child unconditionally. We each say that we could do that, but I doubt many of you have had to analyze that statement as I have. I feel badly that some of you may never understand how empowering it is to really, really learn what loving your child unconditionally means.

Perhaps you can offer some excuse for aborting that I haven’t already heard. Because none of the ones I’ve ever heard make any sense at all.

Here are the ones I hear the most, “It would affect my marriage, my husband could never accept it, couldn’t handle it.” My response: Then what the heck are you doing having children with a man who couldn’t love your children unconditionally? Why would you want to be with someone who thinks he has the right to love his family based on their level of perfection in his eyes? What are you going to do when he deems you no longer perfect enough?
“I have to think about my other kids too…” My response: That’s a great idea. Think about the wonderful lessons in compassion and acceptance you will be teaching your children. Think how secure they will feel, knowing that they are loved for who they are, not how well they score on a test, or how successful they become. Think about the wonderful lessons they will learn about the importance of other people, no matter who they are….they will learn that each of us is deserving of being loved and cared for, and that each of us is a very important part of our family and community.
“Kids with DS have heart problems, ear infections, poor vision, respiratory infections” blah, blah, blah, blah, blah." So?? Congenital heart defects are the #1 birth defect among children. I think that statistically, as many as 30% of ALL children are born with some sort of heart defect. Yet, very few of us are being prenatally screened for those, and being offered up a quick abortion because of it. And can any of you really say you would abort your child because s/he might get more colds than other kids?
“My child will get picked on.” Guess what…the reason your child will be picked on is because people believe that kids with DS are disposable…and if you decide you will not be one of those people, and surround yourself with other who believe that way, then your child will blossom. And you know what….kids get picked on for buck teeth, and big ears, and googley eyes…and not one of those kids is up for the abortion chopping block.
“You only see the people with DS that are doing really well…you don’t see the ones who aren’t.” Oh really? Well pray tell, where are the ones who aren’t doing so well? News flash…they are living and learning with their families. Paige is one of those ‘not doing so well’ kids as far as development goes….she does not walk at almost five. She does not talk. She does not self-feed. Sometimes, when people ask me what ‘new’ things Paige is doing, I have to search long and hard to come up with the tiniest thing. None of that matters one hoot in my love for this child, or her worth as a human being. Sure, its inconvenient to have to transport her right now. Sure, I had to adapt my life to learn to communicate with her. But man, I sure hope someone would do the same for me. ‘cause I wouldn’t have wanted to be deemed unworthy either.

When I was prenatally diagnosed before Paige was born, I was told she would die before or immediately after birth. I spent three months planning a funeral more than a nursery. I prayed, and bargained, and begged for one minute…just one minute to see my child alive. When I had one minute, I prayed for 10 more. And when those 10 were done, I realized that a lifetime will not be enough time to know this person who has blessed my life. Take what you want from this post…I needed to post it because someone reminded me that no one should take my words from me…especially in something this important. ~~~~~~~~ And that's it....some of it a bit angry and frustrated at someone who has known me for a long time, and who would still so quickly abort, but most of it about passion for our kids. Betsy

Yeah for the CDSS!

http://www.canada.com/topics/bodyandhealth/story.html?id=00d6fd8a-5b73-4d05-b988-0858a9536cc8&k=54074

Anyone who knows me knows how much this prenatal testing bothers me. It's not the testing in and of itself that bothers me. Like most technology, it has its uses and can provide a lot of good. However, in this case, what it is used for is not good. Over and over again, the testing is used solely as a way to diagnose in order to terminate. And that reeks of eugenics to me.

While driving in the car on Tuesday, I was listening to Talk Radio (am 1010 for those of you in Southern Ontario). The talk show host had found himself in a bit of "trouble" for a comment he had made the day before about feral cats. Apparently, there is a bit of trouble with feral cats in some of the areas of Toronto. These cats have become wild but people leave food out for them. So, these cats continue to thrive and breed and multiply....they are noisy, disease-ridden and smelly. So this announcer suggested that they be rounded up... the ones that could be adopted out (ie are domesticated) be adopted out through the Humane Society and the ones that couldn't be adopted out (ie could never be domesticated) be euthanized. Well... you think he'd advocated World War 3 from the response he got. The phone lines at the TV station were flooded... the emails at the radio station were overwhelming....the calls to the radio station the next day took over! One by one people called in to say what a horrible human being he was to even suggest such a horrible act.

Then, in the afternoon, on the same radio station, there was a small topic about this prenatal testing and the question was raised "are we on the road to eliminating people with Down syndrome?" Unfortunately, I wasn't able to hang around for the discussion, but having heard discussions like this in the past on this station, I know the callers - most of them are parents of chlidren with DS advocating for their kids. But, no... the phone lines aren't jammed. in fact, it is a rather quiet discussion.

I couldn't help but be struck by the irony of this. We are strongly advocating not to kill feral cats, but it's ok to kill a human being simply for not being "perfect"? oh... don't get me going!

Believe it or not, as a someone who was always pro-life (or anti-abortion, I guess), I have come to realize there is a need for legal abortion. I still can't agree with it, but I do think there should be some choice and I don't want to end up back in the ages of back-street abortions. But what I can never support is aborting a WANTED child.... a child that can be cared for.... simply because it carries an extra chromosome. And what continues to amaze me is the one-sidedness of the medical establishment. Sure, there are doctors and technicians that will tell the prospective parents that it is OK and provide them with accurate information. But more often than not, the medical establishment assumes the parents will abort. They provide doom and gloom scenarios and never even offer to put these people in contact with parents who live with a child with DS. I am terrified that in 50 years there will be very very few people with Down sydrome walking around. It makes me sad for Ryan. But more importantly, it makes me very sad for our world.

Odds'n'ends

SCENES FROM OUR HOLIDAYS:

At "Sparkles in the Park"... Kurtis designated this CSI Display as "totally inappropriate for Christmas"
















Tom's new toy.... hey, doesn't everybody NEED a zamboni? In reality, we have a park a VERY short way from our house that has an ice rink every winter (unfortunately, not this winter so far) and it's maintained by the neighbourhood... Tom got tired of shoveling snow and figured this way would be much easier. Needless to say, Tom is really really really hoping for cold weather!



















Santa Kid.... Kurtis dressed up as Santa and surprised Ryan. Ryan actually sat on his lap while Kurtis asked him what he wanted for Christmas.



















Howdy Pardner...
The boys and us at Uncle Andy's 40th Birthday Bash. Can you guess the theme? I didn't dress up as I wasn't even sure I'd be able to attend as I just had chemo a week ago. BUT... this round has been so easy... minimal nausea for only a few days and the fatigue hasn't been overwhelming so I was able to go to the party for 2 hours.

The Joy of Boys

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


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Ryan's christmas concert and Kurtis on piano

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



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

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

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Prayer

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

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

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

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

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

...too soon.

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

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

Feeling better

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Going under

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

Dancing Boy

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



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The start of a new tradition?

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

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


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