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!