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