slow posting and Mitzvah Day

The end is nearing for the school year and I haven't been at the house for a shift for a bit. A creaky old neck keeping me at bay.

I did get to the House on the 22nd of May with my school. As part of the school's community service ideals we spread ourselves through out the city cleaning beaches, helping shelters, feeding people and cleaning cars.

I was at the house with a team of 12 or so and they were given various tasks like sweeping up the grounds, sanding down some old benches that needed sprucing up, and a general good old fashioned clean up! The kids did great, but some were in need of the little instruction on the correct operation of a push broom!

The neck kept me out of the house for the Friday shift so I will be back this next one! friday.

eagles

mms://streamwav.onenetplace.com/eagle for windows media: copy and paste into 'open URL'

for the website go here: http://wavelit.com/media/702/Eagles_Nest_Live/

Girls Weekend ...again...just say no to boys

Imagine how surprised I was as I rode up the driveway to see the same teen group of girls that ignored me last month in the driveway tonight. There they were, Maggie, McKenna, Kirsten, and Juliana, and Hanna. I didn't meet Hanna last month because she got sick and went home. Tonight she was going home AGAIN but for a most awesome reason; she is flying to Orlando, Florida to go swim with the dolphins.

Earlier in the day the girls had a visit from Steven Seagal, and his 'protectors' who apparently patrolled the perimeter of the building the whole time he was there. I also heard he was protected from entering in the Wrap the Toilet Paper around a Person contest that was taking place as part of some serious pre-Olympic competitions.

After dinner I learned that the girls were setting up to watch "The Sisterhood of the Travelling Pants"--chick flick if there ever was--but they seemed 'ok' with Kyle and I hanging out with them but I think that was a little reverse psychology. Someone had the sense to call in a ringer family volunteer for these Girls Night Outs, Karen, who probably does way more for the girls than us boys.

Kyle and I went up to the Kid's floor to hang out with some of the other kids: Sangeeta and Hardeep, a brother and sister team, and Matthew a precocious little 3 year old. Sangeeta and Hardeep are both non-verbal, but hardly non-communicative. Their eyes, faces, and squeals express so much it is absolutely amazing. Sangeeta is absolutely smitten by Matthew. He will come and hold her hard .She just beams. If he walks away and she can't see him she turns her head, willing her chair to turn with her so she can see where he went.

We watched a little bit of The Wiggles: toot, toot, chugga, chugga, big red car....went outside to the garden to play and then came back inside for bed.

There is another boy in the house, Micheal, who is new to the house since April. Micheal has Kawasaki Disease, and if I understand the disease correctly, Kawasaki Disease can lead to heart problems. Micheal suffered a cardiac arrest which has caused some serious brain damage. Kyle was in his room and was looking at all of his pictures of him playing hockey from this year.

There are all types of kids that come to the house. Some are born with life limiting diseases or complications, some have genetic diseases that develop as a person grows, and some end up there out of the blue; a bad event that changes the path so quickly it can make your head spin. Regardless of the journey to the house, for everyone that comes in, whether family or child, there is always hope. Micheal's first admission was an 'end of life stay'. That was last month and they are talking about taking him home, Hanna told me she wanted to be a teacher when she grows up. I have been at the house and met four graduates of the program. There is always a future for these kids and many times that future includes leaving the house alive.

I never did get to hang with the girls again. They seemed happy watching the movie with Karen so Kyle and I left. The girls will be back in June. I can tell they are warming up to us and our time will come.

Justin did it AGAIN

If you were to go to my sponsor page at the link above you will see that Justin Fishman is at it again. He walked into my classroom with a cheque for $145 for Canuck Place. It appears that he has inspired some people in our school to give to Canuck Place. The donors would like to remain anonymous and would like Justin's name appear as the donor. Thank you Justin!!

My mum and dad have always donated to Canuck Place by way of the Adventure Challenge and I get to thank them again this year: Thanks Mum, thanks Dad!

New Canuck Place Website

Please visit the newly designed Canuck Place Hospice website!

Normalcy and some fitness...

Many perceive the things that happen at the house are difficult to deal with. It is important to remind the four of you who read the blog that at the house normalcy reigns supreme. The house provides families a place to experience traumatic events such as a critical illness, or an end of life stay without any other issues taxing their emotions. Illness and death is a normal life event and we all deserve to be in a safe environment whenever possible.

I can't forget about this Adventure I have signed myself up for. A large part of completing the race is to have a modicum of fitness. It is events like these that keep me trying to attain a decent level of fitness. How do you set your goals for fitness? Is weight loss the sole indicator of fitness? No. I like to eat. I also like to drink the occasional beer or three. The best indicator for fitness is your ability to do something as simple as moving your body!

My first goal set this season as I began to run again four weeks ago was to be able to move my body over 5k at a pace of 5 min / kilometer. I managed to do that on Sunday. Now my goal is to maintain that pace for the next five runs.....sigh.
My next goal is to be able to lift my body doing dips and chin ups. We'll have to see how that one goes.

Conner

When a child passes away at the house the volunteers are often informed by an email letting us know that something has happened. Sometimes it is a little difficult to put a face to a name when you may have only seen that child once before and never had the opportunity to hang out, and sometimes you may have never met the person.
Last week Conner, a boy I met in April, passed away in his Dad's arms. He was three. I had just posted the story about Tamryn and Justin when I read the email about Conner. Tamryn was also three when she passed away. How devastating it must be to lose a child.

Justin and Tamryn

I received one of the best donations ever this week. One of my students, Justin Fishman, had emailed me and asked if he could donate to Canuck Place, even if he didn't have a cheque or a credit card. I told him he could. He came to me on Monday with an envelope and said here you go! He then went on to tell me that he had stayed at the house a few years back. His sister, Tamryn, had Tay-Sachs and Justin's family became part of the Canuck Place family. I found an article from West Coast Family ( westcoastfamily.com ) and have included it in this post. The link to the article is here: West Coast Family --Tamryn Fishman

On July 9th, 1996,Marty and Paulette Fishman thought their lives were perfect. Their second child, a beautiful baby girl named Tamryn, was born. But the family’s happiness was cruelly short-lived. In the months following her birth, the Fishman’s slowly became concerned by their daughter’s slow development.

“We ended up seeing a paediatric neurologist, and were preparing for the possibility that Tamryn might have a neuromuscular problem and might even need a wheelchair,” shares dad, Marty Fishman, “but we were not prepared for the verdict we were delivered: our daughter would be blind and prone to seizures—and would be dead in two or three years!” Tamryn was diagnosed with Tay-Sachs Disease, a genetic disorder caused by the lack of an enzyme necessary for breaking down fatty acids in the brain and central nervous system. When two carriers become parents, there is a one in four chance their child will develop Tay-Sachs. To this day, there is no cure. For the Fishman’s, the thought of such a diagnosis was unbelievable. “Because originally, one of us had been screened and found to be a Tay-Sachs carrier as a youth, the other went for premarital Tay-Sachs screening and was found not to be a carrier,” explains Marty. “We knew that both parents had to be carriers for a child to have this disease, so [we thought] it would be impossible for us to have an affected child.”

Using samples from the Fishman’s and other Tay-Sachs carriers, scientists have since discovered an extraneous factor outside the carrier gene that lead screening to produce a “false normal” result. But for Tamryn, the discovery came too late. For the three years that followed her birth,Marty and Paulette’s lives were consumed with care for their daughter. “We decided right from the start that we would keep her at home and not place her in an institution,” says Marty. “We watched as she became progressively blind and immobile, and as she developed seizures and became unable to eat or drink. She never walked or spoke.” In a heart-wrenching twist, Tamryn also lost all expression in her young face, leaving her mom and dad to pray their daughter was not suffering. After a courageous and difficult battle, Tamryn’s young life came to an end at just three years of age. For her parents, the pain of losing their beloved daughter will never heal. However, they both take small comfort in the progress being made in genetic research. The extraneous genetic abnormality that caused Tamryn’s “false normal” diagnosis has now been accounted for, and the screening test has been replaced. “Without the knowledge that there are people and researchers who care enough to keep working with affected individuals and their families, and to keep working for cures for these genetic diseases, it would be easy to give up hope,” says Marty. One such Organization is the Canadian Gene Cure Foundation (CGCF) whose Annual fundraiser, Jeans For Genes Day® takes place in schools and workplaces across Canada each October. This year’s goal is to reach $500,000. Jeans For Genes Day is a unique example of how one small day can make a difference in lives of many. And for the Fishman’s, it brings a small amount of hope that it works to save even just one family from the pain of losing a child. “Organizations that fund this type of care and research,” continues Marty, “are providing a lifeline to those families who are unfortunate enough to carry genetic abnormalities that take the lives of their children.”

Article contributed by Dr. Rob Abbott in collaboration with Marty and Paulette Fishman. Rob Abbott, CEO of the Canadian Genetic Diseases Network and the Canadian Gene Cure Foundation devotes his time and expertise to the annual fundraiser, Jeans For Genes Day®.

There is a Tamryn Fishman Fund that is operated by the Jewish Community Centre's Early Childhood Centre. Information can be found and donations received at the JCC.

I would like to thank Justin for a wonderful donation.

Malcolm

Time goes quickly...

At the house I don't think I have ever had a shift drag...I am always surprised that the shift is over. This is not to say that we have endless amounts of fun and energy to do amazing things all of the time...but for me time at the house passes quickly.

Normally when the evening shift begins we go and round up the kids from the afternoon shift volunteers who are usually bringing them down to dinner or to the kids floor. I went upstairs to check in with the nurses on the kids floor and then up to the classroom where a I found Shannah and Corrine. It appeared that Corrine did not want to make her way down to dinner as she was fully involved in a computer game about Tigger finding hunney for Winnie the Pooh.
I ran down and picked up a plate of dinner and made my way uptairs.
The game is called Tigger's Hunny Hunt and was actually a fun game. I was needed to help Tigger fly by using the space bar. Corrine did all of the rest and we ended up being a pretty great team!

Also in the house tonight were Jaxson and Galen. Jaxson can be seen putting the boots to Roberto Luongo in this video:

Jaxson and Luongo

There were also a few siblings and parents in the house and everyone seemed pretty happy and calm. It has been a tough couple of weeks at the house with a couple kids passing on. The house is built for this and always looks after the things that need looking after.
Here is a bit of an email from our volunteer coordinator Leanne Freeman quoting Filomena:

On a final note, we have had another busy week here at Canuck Place. In
the words of the Canuck Place CEO Filomena Nalewajek - “ This week we
witnessed the "symphony" that silently embraces that care and resonates at
decibels beyond our ability to simply hear. Staff quietly lending a hand,
without being asked; instinctively knowing what is needed: volunteers
helping staff engaging children in play so they would not witness the raw
pain of parents saying goodbye to their lifeless child; staff there to
support and hold together parents in pain, whatever it took to
respond,give,care. The harmony was there, and in that very sad music was
a sense that the world goes on.”

This house is beautiful.

Looking forward to getting to the house Friday

It gives me something to write about! Time at the house is far more interesting than my less than stellar efforts at training. In my two week holiday from school I had great aspirations of doing more running. I have have done that a little, but only with thanks to my wife who has taken me to Kitsilano Community Centre Gym and I ran on the treadmill. I did manage to knock off 17 km in my four visits!
I attempted to blog my training last year for the Kelowna Apple Triathlon
as I had challenged a couple of friends to join me in the tri...they both bailed. Here is that blog.

I believe training has 2 simple components:

• It must become a habit forming practice
• Your point of reference for personal fitness is the point where you began (not what you used to weigh in college)

FITNESS IS DEPRESSING

I have been 96kg for the last 5 years, I think. Every time I workout at the gym I weigh myself and I am always 96 kg. I think I would like to be 90 kg, which may be a a bit of a pipe dream so maybe I can accept 92kg...but a man can dream.

Exercising is hard...ok the exercising habit is hard...and when you are not in the habit of exercising, exercising is hard. stay tuned.

Saturday Make-up

The girls were in for a treat on Saturday as they were given the spa treatment. They were also having their hair, makeup, and nails done. My wife Cindy did their makeup. Maggie, who is in grade five, was doing her own makeup for dinner when I came in on Friday. By Saturday she was in the doghouse with her mum and had had taken her makeup AWAY. Cindy came with goody bags of makeup for each of the girls...so Maggie was back in the game. The girls faces were painted and Cindy said they were all happy and pretty.

Oh...and the girls

Well...it was a Pyjama party and chick flick night. Neither of us (me, Tony, Kyle) brought our PJ's and it appeared that the girls had everything under control with other girl volunteers who were brought in as ringers for the night.
I guess it was a no boy zone for the night...girls...sigh.

Girls are not like boys

The teen girls at the house are very different from the boys. If there is anything that the girls are able to do...they will do it themselves. The boys will have you do it for them!
In the house this week are four girls for the girls teen weekend. There is Maggie, McKenna, Kirsten, and Juliana.

There is also Conner. Conner is a 3 year old boy from the Interior who is in the house (and Children's) as they try and figure what is happening with his tummy. He is having difficulty digesting any food he receives. Right now he gets ALL of his nourishment by way of intravenous lipids and proteins. I got to sit with Conner and we watched the hockey game. Some of the discomfort Conner is feeling is due to him swallowing a lot of air and his stomach is filling up with it. Every ten minutes or so he becomes really uncomfortable and the nurse will "depressurise" him by sucking out the air through his tummy tube with a syringe--anywhere between 100 to 200 cc of air each time. He also farts! When I sat down with him tucking his legs up with one hand and supporting him from underneath with the other he let one rip as a way of introduction.
Conner's mum, dad, and sister are all in the house and have been in town for a number of weeks. He also has a brother who is staying closer to home and being looked after by somebody else. His sister can do her school work while she is here. There is a full time teacher that looks after the kids and their siblings while they are away from home.
Conner's dad came by to sit with him. We all watched the hockey game and talked a little. Dad said some nice things about what we do as volunteers and how important we are...how important the house is...to everybody that needs the help. The house isn't just for the kids. It is for the kids and their whole families. Parents get a break from doing all the work that is needed to keep their children comfortable, or for that matter, alive. When they are at the house they can concentrate on simply loving their babies, or taking a break.

Girls weekend out.

Every once in a while the house holds a teen weekend for the kids who are teens. They are all in the house for the weekend and spend a lot of time together doing activities...going out...group discussions...and playing. I think this is the first girls weekend out in a couple of years.

This weekend there are going to be five girls hanging out.
I am really happy that my wife and step daughter will be helping out on Saturday.
One of the activities is doing makeup. Cindy is a professional makeup artist and is taking her kits to the house and taking goody bags of makeup for the girls. She will doll up the girls for the night and teach those who can do their own makeup some tips on how to do a beautiful makeup and to take care of their skin.

I will be there on Friday night...I wonder what will be in store for us!

Friday at the House

Welcome to another riveting report from the lofty rooms of Canuck Place Hospice. Not a great night in terms of the namesake team...4-0 thrashing loss to Minni.....speaking of thrashings...Thrashers won and are now tied with the 'nucks for the LAST playoff spot...
I am growing a 'make the playoffs' beard and am desperate to shave it off...I guess I have one more week to determine my facial fate.

In the house this week...again with not so very original made up names...Krista, Jeffrey, Aldo, and Conrad.

Conrad is pretty much unable to communicate verbally...but he makes fantastic 'raspberry' noises with his tongue. He spent the night up in the school room making noises...taking off his socks and trying to take off his shirts. He also has an incredible reach with his arms. He managed to grab at Krista's arm pillow as we rolled past...and manages to grab almost anything within a 1m reach of his chair.

Krista is from Vancouver Island. Krista has Duchennes's muscular dystrophy which by all accounts only affects boys, but there is a very small percentage of girls with Duchenne's. I have not seen her for a year and she looks really good. She is going to be back in a couple of weeks for a 'girl's teen weekend' and I am really happy that my wife Cynthia will be taking a couple of hours to do the girls' makeup on the Saturday.

Aldo is a favorite of mine. I hold him responsible for a serious incident that took place at the house last year. Aldo has a serious love affair with Star Wars. I was armed with a hockey stick light sabre and a Darth Vader type sand bucket mask that enabled me to breathe with the patented Darth Vader heavy breathing sound. I was kicking Aldo's rear end with jabs and slashes and all sorts of fantastic moves. He is pretty aggressive in his chair so you have to watch your toes. I made a fantastic strike and moved to the left rapidly...not seeing the steel pole sticking out of the ground. My knee struck the pole with so much force that it made a resounding "GONG" and the echo reverberated for all to hear. The trouble is ...nobody heard it...all they could hear was my howling. My family counselor partner for the night was Martin....he has no sympathy whatsoever for me. He, for all intents and purposes, believed that I was faking it. This comes from a man who works in the post office and had to go on medical leave because he poked his eye with his thumb. Maybe it wasn't medical leave...but it was pretty serious!!
Aldo loves dinosaurs and Star Wars. He likes to play computer games and he is a really smart Grade Fiver.

Jeffrey made me laugh tonight. He is neat kid in Grade 9. He is in the house for respite care this week and has an appointment with a sleep specialist. I think they want to check that his 02 levels are ok while he sleeps. I told him that technology has advanced to such a point that during the test they can actually see the dreams he was having during the test. I had him hook, line , and sinker. He was really worried about it until I told him I was kidding.

I had had a really tiring week. I was really happy to end it with a night at the house.
malcolm

No House report--thank you to my brother!

No house report this week. I had to miss because I was in Whistler's Callaghan Valley for the Canadian Cross country Nationals.

Thank you to my brother Neil for donating $100. Each year Neil has donated and last year he donated more than he bargained for. It was his Brodie Enduro bike that was stolen off the back of my car. I still have not replaced it....sigh.

Thank you, Neil.
Malcolm

Success!

There is a veritable cornucopia of bike parts in my back yard. I deftly manoeuvred one rear wheel from a large framed bike to THE BIKE and now can go forward with reckless abandon. I can even stop now because I moved a couple of less worn brake pads.

Reduce, Reuse, Recycle...get?....re-cycle....sigh

The end is Nigh

A flat rear tire.
Now what will be next?
Oh Patron of Bikes...where are you?

Canuck Place video

Many cool things happen at Canuck Place. This video gives great insight to what happens at Canuck Place. Please watch!

http://www.canuckplace.org/video.php?id=64

Malcolm