Simple makes happy

Dinner: Simple; all protein. Happy. Fish, chicken, pork. There was an odd vegetable thrown in but it was a meatstravaganza.

The Brothers Dave were in the house. Shoot back to here: http://canuckplaceadventurechallenge.blogspot.com/2009/06/no-man-im-dave.html
and the magic of the brothers Dave comes to light!

Dave Senior to my left and Junior to my right. Junior decides he was full...turns out he was just a little unhappy with the dryness of the salmon. Sharpeyed nurse knows he is more like a garbage disposal unit when it comes to food and figures it out. On to the carrots! Seemed like we hung out at the dinner table for a long time. Eating and hanging. Santos was in, Joan was in, and peer volunteer Amanda was also in.
The other set of brothers were also in:
http://canuckplaceadventurechallenge.blogspot.com/2010/04/brothers-j-another-set-go-squirrel.html
and were in fact still intent on catching wildlife. This week they thought that birds were a good idea. . Junior J2 had made a bird catching apparatus and was intent on using it.
This makes two sets of Brothers J...so these guys are Brothers J2.

Senior J2 FINALLY got some glasses. Something I have been trying to get him into for over a year. I am well chuffed that he has them; more so that he says they make such a big difference.

It was such a nice night that we decided to road trip. A rolling caravan of chairs out through the rough and tumble streets of Shaughnessy. Always a sight!

These kids here all know what is going on. Junior J2 made the observation to me that he is having a much tougher time walking. He and his older brother both have Duchenne's Muscular Dystrophy.
JJ2 gets out of his chair to get into the bathroom by himself. He is 12. I asked him if he knew when Senior lost the ability to walk. He answered "when he was 8...so I am doing way better".

Duchenne's is a progressive muscular disease that slowly works its way up from the lower extremities. Eventually it can make it difficult to breathe.

JJ2 knows that his condition will progress. That sucks. These guys take it as life. I'm not sure if they take it well, or if they live in a private morbid fear of dying well before anyone should, or have an insane jealousy of kids who don't need to belong to Canuck Place, but I do know that when they come to the house they are plain and simple kids.

Simple makes happy.

A Marshmallow Crazy Night

Hi....it's Joan! Long time no blog. Well, here I am - to post about tonight's Canuck Place night!

On the shift were Amanda, Marjan (new family volunteer), Kal (subbing for Tony), and I. All girls! We were pretty excited about it being an all-girls night during dinner because it seemed like all the kids who needed hanging out were girls too: Leanna, Leigh, and Monica (who is Gordon's sister). Leanna was a super fast eater, Leigh was looking forward to watching a movie, and Monica was excited about shopping for her elementary school graduation dress tomorrow with Mom!

Suddenly, a little boy named Stevy came sprinting into the kitchen and declared air hockey war (hence the almost all girls night). At first, chef Roberto played with him but he had work to do in the kitchen so Amanda accepted the challenge...and lost. I think. Stevy is a very good air hockey player.

After dinner, Leanna and Leigh were put in bed because they had a long day at Science World. Marjan, the techno guru, succeeded in wrestling with the DVD player and got a movie playing for them.

Kal, Amanda, and I went outside with Monica and Stevy to play Apples-to-Apples, and we brought with us lots of fruit, tea, and cookies. Stevy accidentally ate 5 cookies and therefore had tons of energy...that we needed to expend. He then decided that he didn't want to play the game, and ended up zooming around in the hand-bike, bicycle (with helmet, at my insistence), scooter, and merry-go-round. While Kal, Amanda, and I kept an eye on Stevy, we played Apples-to-Apples with Monica until it got rainy and Stevy wanted to go inside.
(If you don't know what Apples-to-Apples is...check it out at Wikipedia!)

We went in and struck a deal with Stevy: we would go to the Volcano room to have a "Marshmallow Fight" for a short time, and then finish our game. After a little discussion and a lot of help from Mom, it was settled. The marshmallow fight was a little too intense...I actually feared for my glasses. But clearly, it drained Stevy (finally!) and he was quite tired out.

We returned upstairs to play more Apples-to-Apples while I set Stevy up with some Rockband (it works now, Malcolm!) Very soon, Stevy's Mom took up him upstairs for bed, while Marjan came downstairs and joined us in our game. We played the amazing Apples-to-Apples until it was time to go.

It was a night of multitudes. Never a surprise at Canuck Place!

What can I say? ANother cool night!

Last night was the end of a long day and an even longer week, in spite of the fact it was only 4 days!

I was with Joan and Amanda, Santos having spirited himself away to the prairies for a family wedding.

At dinner we had the Island well represented. JJ and his mum, and Vanna (oh...she's going to hate that name...) and Breezy and her mum (who are from Chilliwack). Bob from Burnaby rounded out the group. I have known Bob for 6 years now and I am amazed at how much he has grown. He will always be the same little kid that I met 6 years ago...but he sure is getting big.

JJ is 13 and is a super cool, smart, and funny kid. If you have seen any of the Canuck PLace commercials he did one with Roberto Luongo: http://www.canuckplace.org/news_events/video_gallery/articles693.php

or this one: http://www.canuckplace.org/news_events/media_centre/psas/articles361.php

We had a chill night upstairs playing a game called Apples to Apples. We (joan, Vanna, JJ, and I) talked a lot...had a lot of laughs. Amanda was helping Bob figure out the ways to advance (uhm... cheat) in his video game that he plays all the time. I think he got a little further thanks to the internet!

I am never really amazed at what happens at the house. Everything just happens--it is all so normal. From the respite care to the end of life care the house works to achieve absolute normalcy for all of the families and volunteers involved.

Thank you, Canuck Place.

Where you from? Who do you be?

I get to see on occasion visits from far flung places to the site. Who are you? Leave a comment. Who lives in Beverley Hills? You come back often, Thank you!

As I write the blog posts I realise that I am not doing it for anything other than sharing. If one day a blog post that I write does something incredible for the person reading it. Cool. Come back and say hi.

fragile place

Grounding. A word I used the other day.

Nothing more grounding than learning that a little boy you saw on Friday night had to leave his Mum, Dad, and Big Sister on Sunday morning.

Another example of how Canuck Place works. Little Kyler quietly died, with his family around him, surrounded by a big , wonderful, old house.

What a cool night. Just what the doctor ordered. Having been told my job has been cut to .875 full time for next year I found myself chomping at the bit to get to the house. As I have said before hanging out at the house can be rejuvenating and also very grounding.

Tonight Steve, Amanda and Joan were all in to volunteer and we had Willa, who is a new addition to the house, Denise with her mum and grandma, Carter in with his mum dad, brother and sister, and a little boy named Kyler who had his mum, dad, and big sister with him and last but not least, Sadie who was there with her mum A full house.

Canuck Place is way more than a children's hospice. It is a family home.

I got to sit beside Denise and Willa at dinner. I helped Willa to get food on her spoon when she needed the help. Nurse Marg was helping Sadie.

After dinner we mosied up to the art room to hangout, colour, toss a ball around (something that Sadie loves to play).

Both Sadie and Willa are nonverbal. Sometimes communication is such a challenge. Eyes and facial expressions make up a lot of the communication process. Willa could speak a little but it is a struggle for her to form the words and it is especially difficult to decipher what is being said. I took a shine to Willa right away. She is an absolutely beautiful 13 year old with long dark hair and stunning eyes. I kept having to apooligise for not understanding the words she was trying to form. We did ok together, but I could tell how frustrating it is for her to try and speak without being understood. She reminded me of K-Dogg (who has left the program now that he is 19). Willa would grin at all of my stupid jokes like K-Dogg did.

At one point Sadie had a seizure...something she is prone to do. The seizures range from just zoning out to full muscular contractions of her body. I noticed the seizure and got mums attention. I held Sadie's hands and mum was at her head talking quietly to her. The seizure lasted about 90 seconds and then Sadie came back.

A little later we met Axel. He had just come in from the Island to stay for the weekend. He is over to play power soccer with a Vancouver team. We had a quick chat and then it was time to go.

After saying goodnight to everyone I realised what a good night it was.

I left the house happy.

Brothers J--another set -- go squirrel Hunting

Today when I appeared on the Kids floor I sat down on the couch. M-girl was being held by a volunteer. It was about 10 minutes to five and I could sense I was in the perfect position to take over. To hell with dinner! I quickly got to move in and had my chance to cuddle Baby M. Hockey was on, I was in a comfy chair, things were perfect. For the next 45 minutes or so I just hung doing the cuddle thing along with the B-man and K-man (who came up from the main floor)! After a while the crew came up--Janelle with the Brothers J crew2. Oldest brother has been called Jeffrey in previous posts.

The M-girl was nice and happy so the nurse put her in her bed. The boys and I went downstairs so I could catch up in the food department and we discussed the night strategy: squirrel hunting was in the plans.

I had no idea! In the end we went outside, leaving K and B - Men on the Kids Floor and went to catch us a squirrel.

The boys were hi - larious. We found a bucket, some string from jeffrey's bag, some bird seed, and whole lot of patience. The plan was for the unsuspecting squirrel to get the seeds placed under the propped up bucket, and pull the string and catch the squirrel. Simple. So we hung by the bird feeder and waited. Squirrels in the trees staying a minimum of 30m away. Lots of chickadees around, a few song sparrows, and one junko. So me being the bird loving fool that I am start whistling to the birds: MAGIC! The chickadee call "cheese burger" is (i believe) a territorial call. After a few minutes of cheesburgering I had the whole group of local chickadees cheeseburgering back!

We never caught a squirrel so we went inside for bathroom breaks. We collected the B and K Men and went upstairs. Even found a plan to catch a squirrel.

We eventually came across some pinecones and string and decided to to make bird traps (aka bird feeders). string...peanut butter...sunflower seeds. Done. Hung them out on a tree and a birdfeeder. It was dark and the birds were in bed. I bet the squirrels destroy them in the night!

It was a cool night. I like to hunt squirrels.

A Quiet House

This Friday was such a contrast from last Friday.

3 kids in the house, plus a mum and a sister who hung out on their own, plus a dad and a brother who went to a hockey tournament.

That was it. Santos, Joan, Jenelle and I were on hand along with the nurses and PCAs.

It always seems like there is a lot of people on any one shift and it is on nights like these that I sometimes watch what the nurses are doing when they are not in contact with the kids. They are busy! They are always doing something. Writing in reports, in the med room preparing stuff, checking other stuff. The PCAs are are also busy as hell too. This is what they need to get done every shift (I am supposing) whether they have a kid in front of them or not. Unless a kid is in their room sleeping (and being monitored by video!) they are ALWAYS with a family volunteer, PCA, or nurse. As volunteers we are to be there for the kids in the house, but I realise that we are also there for the nurses. The nurses do a hell of a job. I am happy that as a volunteer we can help them do even better!

Our job tonight consisted of serious hanging in the Sunroom. We were perilously close to repeating nap time, but managed to stay awake while G-Dog and C-Girl (I have become ever so taxed on creating new names) watched a variety of shows on TV. I hung a bit with the S-Man while he demolished a video game.

This was S-Man's second stay at the house. I ate supper with his family and had a little chat with his mum and dad. I found myself telling them how awesome this place is because of how NORMAL it is.

Canuck Place takes a uniquely special kid with uniquely special needs who receives uniquely special care and makes every aspect their care and visit normal.

That is what this place is about.

A full House!

What a great hangout day.

After a fairly miserable day at work and a rushed drive to Delta and back it was nice to slide into the house and sit down for dinner amongst a bunch of familiar and some new faces.

One of the first things I heard was, "here comes trouble". Little did she know that I was called Trouble when I was 3 or 4.

At the table there were the Brothers J, Single J, AJ, and StepJ. Volunteers Santos, Amanda, and Joan, all onsite for the night.

Let it be known that I ate too many servings of potatoes and chicken and fish.

As usual we tend to meet up in the schoolroom to hang and to figure out what we can do for the night. This works for AJ because she gets to listen to and watch Shania Twain on the comp! We always end up having cool discussions finding out how things have been with everyone since the last time they were here for respite, or getting to know those who we haven't met before.

After a while we split up: me, Joan, and the Brothers J move outside. Last August the Brothers J were in the house. Read about it: http://canuckplaceadventurechallenge.blogspot.com/2009/08/week-after.html

We played some bball, we played some hockey. We played for a long time!

After a while we went back upstairs. Walk into the classroom and I get a great surprise! There is a teenage girl (KJ) at the house who I have known for 5 years. She doesn't talk, but she sure knows how to smile...especially with her eyes. Every time I see KJ I break out into "I'm walking on Sushine" by Katrina and the waves, take her hand and do a little dance. It is worth it to see the smiles on her face!

A little bit of Wii with the Brothers J, a little bit of hangout and the night is done.

Some of the most rejuvenating 4 hours I get to spend anywhere.

Messages from the house

On occasion we (volunteers) receive an email notice about our kids passing. More often than not the notice contains the words "in his parents arms", or "surrounded by family". I am always saddened by these emails. Most often they are about the kids that I don't know and the news will always makes me sad. I am not sure how I will react when it is someone I have come to know better than others.

For the first time in 5 years I replied to the email from our volunteer coordinator. I just replied without much thought. In it I expressed how proud I am to be a part of Canuck Place

In fact I am proud of every doctor, nurse, volunteer, parent, sibling, and Canuck Place Kid I have been fortunate enough to meet there. Even Santos.

When you are sick...just stay clear,

One of the things I notice when I look at the blog is how much stuff gets missed. I was sick on Friday and had to call in to the house to cancel for the night. Miss a shift and all of a sudden my time there is reduced to once in the month. I HATE calling in sick. I realise that it is my time at the house that creates awesome moments with awesome people for me to write about!

Even if you are just 'a little' sick your bug could be devastating to the kids in the house. So we steer clear.

The start to another 6 months of fundraising is underway as I officially signed up for the 5th Annual Canuck Place Adventure Challenge! www.adventurechallenge.ca

Take a visit to the site. Take your time to go to the house as well: www.canuckplace.org

Men's Pairs Roller Chair Dance - 2010 Olympics

Whoa! A new event is on the horizon at the Canuck Place Olympic Classroom Plaza. Men's Pairs Roller Chair Dance. Santos and I are still trying to sort out Compulsary Elements for the event.
I believe we are destined for Gold as we are the only men's pair in the house.

Amanda and Joan are not men and therefore unable to compete.

A second event: Olympic Face taping. Pictures to follow? Not sure!

A third event: Pokemon Counterfitting by Aldo.

It is nice to be back at the house after a long while (one shift forgotten...one shift sick).

Running report tonight maybe......!

News Flash - Abbotsford to create its own Canuck Place

November 24, 2009
Abbotsford to create its own Canuck Place
Council in the Fraser Valley city approves lease of land for buildings to house seriously ill patients
By Tiffany Crawford, Vancouver Sun

Abbotsford council approved a plan Monday night for a Canuck Place children's hospice in Abbotsford that would eliminate the long trip to Vancouver's facility for hundreds of sick children and their families.

The city agreed to lease .6 hectares (1.5 acres) of land on Marshall Road to Canuck Place, Matthew's House and the Abbotsford Hospice Society, all of which will offer support services for patients with terminal or life-threatening illnesses.

One of the reasons for the new Canuck Place is that more than 40 per cent of the children staying at the Vancouver location, a heritage house in the tony Shaughnessy area, are from the Fraser Valley, said Filomena Nalewajek, CEO of Canuck Place Children's Hospice....(click here to read more...)

What I Learned...

Hey everyone,

heehee. So neither Malcolm nor I have posted for over a month, but it's justified! Malcolm is very busy with school, and so am I with Pharmacy.

However, even during this crunch time before my final exams, I feel the need to post even a very short entry on this blog to document what I learned last shift on Friday, November 20th.

When I walked into the hospice that afternoon, I immediately noticed that the green lamp was sitting on the receptionist's desk, and turned off. Making a note to myself to be more sensitive to my surroundings, I went into the volunteer room and met up with Tony, Jen, and Amanda, the other volunteers during my shift.

We checked in upstairs with the nurses and realized that there were literally no kids who needed volunteer attention. We decided to stick around for dinner, and then figure out if we were still needed.

Half-way through our lonely volunteer-only dinner, an elderly asian lady sat down to join us. I noticed that her eyes were red and puffy. Tony, being the kind soul that he is, tried to engage her into conversation. We soon realized that she could not speak English very well, but she told us that she was from Hong Kong, so I offered that I could speak Cantonese, and Tony that he could speak Toi-San dialect. Turns out that she knows a bit of Toi-San, but speaks primarily Cantonese.

After a few more bites of dinner, she started to talk to us. The nurses told us later that she had not talked to anyone outside of the family all day because of the language barrier, so knowing that Tony and I could understand her, she opened up to us and spoke the feelings she had harboured in her heart from an event that occurred earlier in the day : the passing of her granddaughter.

We listened to her talk, and we did our best to speak comforting words in the hopes of making her feel even the teensiest bit better.
I hope that through her sharing of the story with us, a bit of the burden was taken off her shoulders.

From that night, I learned yet another important role of the Canuck Place volunteer. Shift after shift, each filled with kids and games and relaxation, I often forget why I am really there. But on a night like last shift, I recalled a phrase that I once read in the family volunteer description : we are there to be that "missing friend". Even when the kids don't need us, the families need us.

I'm so glad we decided to stay for dinner.

The return of Dave

SilentFury said...

sorry malcolm/joan, I never got around to finishing he blog entry.

18 October 2009 05:40

Malcolm said...

sphen.....what now?
don't worry buddy. we'll get to it!
tell you what...if the spirit moves you...do it on the comment thingy!
malcolm

19 October 2009 09:59

SilentFury said...

all right, here goes,

" ’DAAAAAAAAAVVVVE’ is back! As soon as Malcolm and Joan showed up, the first thing Kenny said was, ‘Nooooooooo maaaaaaaan, iiiiiiiiii’m Daaaaaaaaaaave!’ It took a while, but Malcolm managed to find a video of ‘Daaaaaaaaaaavvvvve’ on Youtube. I (Sphen) went down stairs for a bath, and thought the ‘Daaaaaaaaaaaavvvvve’ thing would pass, but sure enough when I got back Kenny and his brother Kam, were still shouting ‘Nooooooooooo maaaaaaaaan, iiiiiiii’m Daaaaaaavvvve!’ and we still were laughing hysterically! For the rest of the night Kenny, Kam, Pavel, Joan, Malcolm and I were trying to come up with a new saying, or catchphrase, or whatever it was. Malcolm and Pavel were doing a bit off of Ferris Bueler’s Day Off. Malcolm would do the ‘BAH BAH…’ and Pavel would carry it on with the ‘ChikaChika.’ That was funny too." You guys can add whatever you want

Nehal

NormieNehal is a charmer. It is an absolute joy to be around him and I look forward to watching him grow up. If ever there was a twinkle to be put into your eye it can be done by Nehal.

Chubby Girl Babies + Normie

Hey everyone, it's Joan!
Tonight's shift was very quiet, enjoyable, and low key.
Volunteers on shift were : me, Martin (subbing for Malcolm and Steve), Chris and Janelle (both subbing for Amanda).

After dinner of huge, delicious ravioli and turkey meat loaf (aka bird loaf), Jeffrey went back into bed. He is still recovering from his surgery from the summer, but he is doing much better!
Chris, Janelle, Martin, and I all went to the school room with Collin and Kay. Chris watched videos with Collin, Martin started chatting it up with Collin's dad, and Janelle and I sang songs to Kay. Kay has trouble hearing and has an implant in his ear to help him, but his earpiece keeps falling off! Still, when we sang songs that were familiar to him such as "Happy Birthday," he would all of a sudden give a huge grin in recognition and get excited! Tonight, however, he was not having his best day so the nurses put him to bed early.

Afterwards, I went downstairs to see if the nurses needed any help, and I got to hold and cuddle baby Kary. She is so cute!! She has smooth black hair, soft cheeks, tiny hands and feet...and she's so adorably chubby! I kept having to sit her up more because she has laboured breathing, and she fell asleep in my arms a couple of times. She loved the attention! Around me were 3 other baby girls : Jenna, whose parents were there for a bit, Maggie, and Josie.

The thing that will make me remember this shift most, however, is my discovery of an article taped onto the white board at the nurse's station. And who was this article about? Little Normie, real name : Nehal! (Since his real name is in the article, I suppose it won't do any harm to mention it here.) He's the little 4-year-old boy we've talked about many times who absolutely loves rockband. Nehal has a heart condition for which he has had 3 successful surgeries in the past, but because of the complexity of his condition, he is going to Stanford in November to receive another surgery. His mum, Shalini, is such a wonderful person, and Nehal is such a lovable little boy; I really hope they will find what they are looking for in California.
If you would like to read this article, please click HERE.

It appears I was a happy camper

Or maybe I just like to have my picture taken. I promise you that where you see me running, and smiling on the out side...my insides are crying. Can't wait for next year! Adventure Cam to come soon...and a race report.

Last Friday - night of extremes

Hey everyone!

Joan is back! I've been a bit MIA with posting here - my excuse is that I've been busy with back to school and now, school. I am starting my first year in UBC Pharmacy, and it is a bit overwhelming now, but it is all very interesting and I'm sure I will adapt to it all very soon. Tonight I finally have a bit of down time, and seeing that Malcolm hasn't posted about last shift, I will do the honours!

On volunteer shift that night were me, Malcolm, Santos, and new peer volunteer, Amanda! Jen, the receptionist-family hybrid volunteer was also back at reception after a long break to take care of her dog and summer holidays. Welcome back, Jen! Kids in the house included Nina, Nina's brother Doug (I forgot what name he wanted!), Isaac, Elvis, Patrick, and Christina.

The entire night can be effectively described by one word : extreme.

After dinner, we all gravitated towards the Sun room. We turned on Barney to keep Nina happy, plugged Elvis into his celtic and campfire songs on his CD player, and the rest of us sat on our bums and just talked. With Barney's and the singing children's soothing voices, as well as the room's dim lighting, all of us started getting sleepy. We seriously could have just lay our heads down on the sofa and taken a nap - but no! That's not what good volunteers do!

After awhile, a burst of energy came by and Santos, Malcolm, and Doug started having an intense matches of air hockey. And I mean INTENSE. Play was accompanied by frequent yells of joy and frustration, so loud that we had to turn Barney on to almost full volume to keep Nina satisfied. Anyways, the boys finished their matches all tired and sweaty, and I believe Santos was the ultimate winner. =)

And of course...I had my friday-nightly toast and half-a-toasted-bagel with nothing on it.

psych!

I woke up to a $9000 donation today! my mind raced!
long story short: do you own donations online...and make sure you check what you have submitted!!!
$9000 has been refunded. $900 coming our way!