Beraka

Our Family's Hopes and Dreams

2011-11-01T22:16:00.000-07:00

My mom has not helped me with writing my blog for months. Being busy is not the only reason for it. She has been hesitant in writing about our future plan because she does not want to cause anxiety or alarm to my roommate's families and to the staff at my group home. I have mentioned about building a house in my previous blog. This new home will be for our entire family, which includes me. Our family will have to sell our current residence. That means my roommates will need to move and my moving out of the group home will affect the staffing dollars creating job losses. Our plan is now common knowledge, so it is okay to share openly.

My family has observed that I enjoy spending time with them. Also, I learn new skills and use my speech more while being with them. The gains are particularly noticeable when I spend extended periods of time with them. Unfortunately these gains are not sustained after I return to my group home setting. Moving back to my family home is going to benefit me significantly. Our goal is for me to lead a more inclusive and meaningful life.

Today, my family met with my PDD (Persons with Developmental Disabilities) Community Support Coordinator to submit a funding application for hiring my support staff. There are a few not so positive possibilities. I may not be able to access my current approved funding from my service provider. Even if I can, it will only be a small portion of my support dollars. As a result, my application will be for "new" dollars, rather than transferring my current funding to support me at a different location. If PDD does not have available funds at this time, I will have to wait. If my family chooses to take me out of the group home without approved funding, they will need to take care of me until funding comes through. I am not considered to be in an emergency situation, so my application will not be viewed as priority.

At this time, we do not know whether funding will be approved or not, and how long it will take. My mom will not be able to sell our current home until funding is approved because she does not want to move me twice causing additional disruptions to my life. In such case, my family will need to pay for two mortgages.

Spending Time With Mom

2011-05-08T21:09:00.000-07:00

Same old comment - my mom has been ultra busy. Despite being busy and neglecting my blog, my mom still spends time with me on a regular basis. With Emily and Peter home, I get to play Wii games and Mariokart whenever I go over next door to visit my family. I say, "Ball" when I want to play the Tilt Table game. Peter made me an album of picture cards for me to choose which Mariokart track I want. Sometimes, Adelaide comes over to grab my remote controls. That doesn't upset me at all because I like her. I want to kiss her all the time.

My life hasn't been uneventful even though my mom has not helped me with blogging for quite some time. In early December of last year, our family (with the exception of Grandma) went to Disneyland. I still remember the teacup ride and it remains to be my most favorite ride.

Emily, Peter and Adelaide are currently in Australia. They have been gone for over a month now and will be home in a few days. After this trip, there will likely be no more extended trips for our family this year because our new house is finally under construction. It is important for mom, Emily and Peter to be around to monitor and to make decisions from time to time.

Since I won't be going away on vacation this summer, my mom decides to take me on a couple of short trips so that I can get away and have some one-on-one time with her. She took me to a camp over this weekend. She plans to take me to Calgary at the end of June.

I had a great time at the camp. My mom allowed me to make decisions on what I want to do and where I want to go. She would like me to be more physically active, but that was not my choice. My preferred activity was to go to the cafeteria and watch the fans. I spent several hours each day doing just that. My mom wished she had brought a book with her.

Another activity I was willing to participate in was the carriage ride. I rode on the carriage a few times to tour the different areas of the camp. I must say, it sure beat visiting all those places by foot. My mom did manage to talk me into walking a little bit and took me to the petting zoo. I, of course, refused to get near it. I asked for the camera by saying, "cheese". With the camera as the bait, my mom got me closer to the fence. She showed me the bunnies and I fell in love with them. I got brave enough to walk close to the cage. I pointed to a bunny and said, "bunny". That was my way to get my mom to pick up a bunny for me to see. My mom picked up one after another multiple times to keep me interested. I eventually became comfortable enough to stand right next to it, but I couldn't bring myself to touch it yet.

There was a band and they played loud music. I loved it. On the first evening, I sat through the talk and got a few compliments. The second evening, I walked out of the room whenever the pastor spoke. I returned when I heard music. I was in and out of the room for the rest of the evening. After my mom tucked me in bed and turned off the lights, I giggled and laughed out loud. I repeatedly verbalized "fan" and "music". Both mornings, I woke up at 5 am. and I was ready to leave the room immediately to head out to the cafeteria. This morning, my mom used a variety of tactics to keep me in the room. My perseverance won out and we arrived at the cafeteria at 7 am. We sat there till breakfast was served at 9 am.

Mom Has Been Busy

2010-10-24T17:30:00.000-07:00

I have not written for months because my mom has been ultra busy. The only thing that can slow my mom down is for her to get sick. It is unusual for her to be ill and when she does, it generally hits her hard. She came down with the flu over a week ago and she is still suffering from it. Despite her high pain tolerance, she takes Tylenol everyday to cope with bone and muscle aching. Her throat feels raw and she has taken more lozenges this past week than her entire life time. As she gets better gradually, the bug is going around in our household. Both Peter and Grandma are not feeling well. Hopefully, Adelaide, Emily and myself can remain healthy.

My mom went to Vancouver in July to attend a cousin's wedding. She stayed at Emily and Peter's apartment to help with baby care and packing. Initially, the packing was extremely organized and donation runs helped in reducing the moving load. As time ran out, everything went into boxes for moving. Under Peter's supervision, box contents were to be organized and not random. Nonetheless, finding things can still be a challenge at times. They rented a big U-Haul truck and moved back to Edmonton at the end of August.

When our family moved from the westend home to Millwoods and then from Millwoods to our current address, the experience was similar to Emily's move . . . only it was much, much worse. My mom did make attempts to sort our belongings. She couldn't possibly cope with the workload, so there were random stuffs packed in same box and there were "untoouched" boxes being moved from one location to the other. Having been in our home for over a decade, there has been more additions to our garage/basement when other extended family members moved and needed storage space.

Emily and Peter's moving home marked the beginning of a frenzy of cleaning house, IKEA trips for shelving units, organizing accumulated messes, and donation/ECO station runs. The job is endless and work is still in progress. My mom appreciates Emily and Peter's help in this horrendous task of getting our home in order. A lot more work is needed to be done yet.

Camping Trip

2010-07-05T21:07:00.000-07:00

My mom and I left for Clearwater, British Columbia, at 5 am. Thursday morning. It was so early that it took my mom a long time to get me out of bed. I was sleepy and quiet most of the morning. I don't generally sleep while traveling in the car. By the afternoon, I was so tired that I was giggly. After 9 hours of driving, we arrived at our destination. My mom checked into a motel and started to unload the car. I refused to stay in the room and got back into the car. A 9-hour drive was not long enough for me! Shortly afterwards, Emily, Peter and Adelaide arrived.

We visited three waterfalls in Wells Gray Provincial Park the next day - the Helmcken Falls, Dawson Falls and Spahat Falls. The Helmcken Falls is very pretty and it is considered as the Park's main tourist draw. Due to my love for water, I enjoyed watching the rushing water and listening to the roaring sounds. Sometimes I refused to leave the area. While on the trails, I walked slowly or came to a complete stop due to distractions by my surroundings. My mom engaged me in a game of hide and seek by getting behind a tree. I had a lot of fun running toward the tree to find her. That was very effective in getting me to go from point A to point B.

We came across three bears in different locations of the park. My mom, Emily and Peter were happy to be able to see them in such close proximity. We were in our car, of course. Otherwise, the encounter would not be described as "happy".

In order to expose me to a new experience (tenting), we checked into a camp site on Saturday. I have camped many times before in our van. However, the last time I slept in a tent was when I was 2-year-old.

My mom and I slept in a big tent with a fly over it. I called out, "mommy" and pointed to the top of the tent. A big bug (an inch long) got trapped between the tent and the fly. I laughed out loud as I watched the bug flew back and forth frantically. That kept me entertained for a long time before I fell asleep.

It started to rain at dawn and I was probably waken up by the sound of raindrops on our tent. My mom noticed that I was staring at the top of the tent. She asked me, "What do you see?" I said, "滴滴" (meaning drip, drip). I love water and I thought it was so funny having water dripping onto our bed. We planned to camp for 2 nights, but the rain cut our stay short and we came home on Sunday.

Ice Cream

2010-06-27T20:52:00.000-07:00

Yesterday when my mom proposed to take me out on my buddy bike, I said to her, "Ice cream". Her response was, "Sorry, mommy does not have ice cream in the freezer." Well, if she wants me to go on my bike daily, she needs to come up with something more appealing to me than grapes. . . . . Guess what my mom bought today. :)

We have ice cream now, but I haven't got any yet because we didn't go out on my bike today. This afternoon, my mom was struggling with making up her mind. In the end, she decides not to go out due to the extremely hot weather. The heat really gets to her. Tonight, we have a thunder storm and it helps to cool down the house for a good night sleep.

Emily and Peter are going on a camping trip in BC. They have invited my mom to join them for a couple of days. Last night, I was over at my mom's home to sleep over. I was so good that my charm won her over. My mom told me I will be going on a long car ride. She is not sure if I understand what this is all about yet. I will when I see her packing.

Buddy Bike

2010-06-18T19:31:00.000-07:00

The weather is gorgeous today, so my mom decided to take me out on my buddy bike this afternoon. She was not sure if I would resist, so she didn't tell me what we were going to do. She handed me a favorite snack as we walked out of the house. Having that to distract my attention, she got me on the bike with no problem.

This is the first time we go out on my bike this year. My mom remembered how reluctant I was last year and that she had to use ice cream to entice me. To her surprise, I actually enjoyed the bike ride today. I giggled as our bike sailed out onto the street. I helped in peddling from time to time.

I saw a small squirrel ran across the street in front of us. My mom stopped peddling so that I could watch the squirrel climb up a tree. One time when we were in Jasper National Park, I saw a squirrel came out from under a rock a few feet from where I was sitting. I jumped up, screamed and ran away. Today, I wasn't afraid because I was sitting high up on my bike and I felt safe.

Leaps and Bounds

2010-06-17T07:29:00.001-07:00

Adelaide is sure growing fast. Her weigh-in at the midwife's office around mid-May was 7 lbs. 14 oz. We didn't have a scale at home to weigh her accurately while they were here to visit. She was getting heavier to carry, but we had to wait till her next midwife appointment back in Vancouver to know her exact weight. On May 31, we found out that she weighed 9 lbs. 5 oz. The next thing I know, she has gained more weight and was 10 lbs. 5 oz. on June 10. Baby gifts of clothing are coming in and my mom is worried that Adelaide may outgrow some of them before she goes to Vancouver to visit them at the end of July. She hopes that there will be someone we know going to Vancouver soon, so that she can forward the smaller sizes to Adelaide.

My mom went on a shopping spree buying pretty dresses for Adelaide. She took me along one time and I imitated how she looked through the dresses one by one on the rack. Then I started to take some clothes off the rack and restock them on other racks. Instead of stopping me, my mom allowed me the time to hang the clothes back up. That was a very good practice of eye-hand coordination for me. My mom followed me around and placed the clothes back to where they should belong.

Meeting Adelaide

2010-06-01T20:35:00.000-07:00

I have finally met Adelaide in person last week. I call her "baby", as Adelaide is too difficult for me to say at this time. I am sure Adelaide's name is on my mom's "to teach" list.

I shy from getting close to Adelaide. I have not shown much interest in her for a couple of reasons. Firstly, I don't know how to interact with babies. I have not had such experience in the past. Secondly, I am a lot more interested in Peter . . . actually, I am more interested in Peter's computer. When I see Peter, I don't call him "Peter". I say "computer" instead. Peter and computer are not separable anyway.

Peter let me watch music videos on his computer. He teaches me how to use a digital camera. And, he sets up Wii Mario Kart for me to play. How can I not be attracted to Peter when I get so much attention from him! I hope he will visit again soon.

Adelaide

2010-05-19T14:48:00.000-07:00

Adelaide is sure growing fast and she looks different from the time she was born. I am going to meet her in person soon. My folks are going to leave Vancouver Friday afternoon. They plan to split the driving into 2 1/2 days so that they can have frequent stops to take Adelaide out of her car seat. They will arrive Edmonton Sunday night. I may not see them until Monday depending on the time they get home. Emily, Peter and Adelaide will stay till the following Saturday. I am sure the week will go by really fast.

It is a Girl!

2010-05-01T15:40:00.001-07:00

As of last evening, I am officially an uncle. Isn't Adelaide beautiful? I look forward to meeting her when Emily and Peter bring her home to visit around the end of this month.

While Emily was pregnant, she looked like she had a watermelon or football in her tummy. Many people predicted that she was going to have a boy because she carried the baby all in front of her. It was interesting that both Chinese and Caucasian people offered the same prediction. We are happy it is a girl and she is healthy.

Baby Update

2010-04-29T12:02:00.000-07:00

There is no sign of baby yet even though Emily's tummy is getting sore from false labor pains. She sees her midwife once a week until the baby is born. So far, the midwife has been predicting that the baby will not arrive early. So, everybody, have patience.

In the meantime, my mom got all of her income tax returns done. It is a relief for her to get caught up. Now she can start to catch up on other backlogs. One of these days, she will be able to have a life again.

With my mom's support, I applied and interviewed for inclusive post-secondary education at Grant MacEwan and NAIT. Unfortunately, I have not been accepted. My mom was not hopeful that I would. She tried anyway because it is not right to give up without trying.

Beautiful Blooms

2010-04-18T20:05:00.000-07:00

My mom left for Vancouver Thursday morning. After she left home, she realized that she had no map. She continued on her journey, as she didn't want to waste time going home for the maps. She figured she could find her way to Vancouver and then to Emily and Peter's apartment. She arrived safely at around 8 pm. as planned.

As my mom drove over the Rockies, it was still brown everywhere until she reached Hope, British Columbia. Suddenly, it became all lushly green. It was like driving from one season into another. Vancouver is beautiful with cherry blossoms all over the city. Many other flowers are also in bloom creating multitudes of spring colors.

Emily is now staying home awaiting for the arrival of her baby. While my mom was still in Edmonton, she was too busy to get excited. Now that she is in Vancouver and seeing how big Emily is, her excitement starts to mount.

It's A Small World

2010-04-10T16:21:00.000-07:00

My Grandma is giving away her entertainment unit. As she cleans out her stuff, she comes across a few old, old records of children songs. One of them is "It's a small world". I look at the picture on it and it brings back memories of the ride at Disney World. I hang onto this record and refuse all the other ones. I make my mom play the song over and over again. I laugh out loud as I look at the pictures of the ride and listen to the music.

When I want my mom to put the record on, I sing to her, "Dum dum dum dum dum, dum dum dum dum dum".

Spring Retreat

2010-03-28T23:45:00.000-07:00

My mom and I went to the Spring Retreat at Camp Nakamun. This gave me the opportunity of spending a weekend with young people - Junior High and Senior High. I am much older, but I blend in well because I look younger than my age. We had a nice room that is an accessible unit with very spacious bathroom.

On our first night, my mom could hear me laugh out loud after she turned off the light.

I woke up before 5 am. the next morning and was ready to go. I loved the music and singing. My mom supported me to participate as much as I could in activities. When my peers played human foosball, I wanted to join in. Initially, my mom was hesitant and didn't let me. Then she changed her mind and I got to play. My peers were very gracious and accepted me in the game. Whenever the ball came near to my vicinity, they gave me the time I needed to kick the ball. Sometimes, even my opponent team intentionally passed the ball to me. They are such wonderful people.

Saturday night was the best because we had a Talent Show. As soon as my mom mentioned "show" to me, I knew there was going to be more music, singing and dancing. My mom was really impressed by Nigel's awesome yo-yo tricks.

I Love Having a Fit!

2010-02-24T18:44:00.000-08:00

Sunday was the first time I rode in our newly purchased Honda Fit. As my mom pulled out of the garage, I shouted, "Yay!" Realizing that I love the Fit, my mom got a tickle out of my reaction. A few weeks ago, she had a rental car while her van was in the body shop. I did not show any excitement for the rental car. So, she noticed the difference.

Generally, whenever I get into a vehicle, I ask for music. I have given up asking for music when I get into our van because the radio has broken down months ago. Now we have music in the Fit - What a treat! I simply cannot stop smiling. I wish my mom will take me for more car rides. I wonder when Emily and Peter will be coming home. It will be nice to go on a long car ride to the airport.

We are going to have a Fit!

2010-02-17T21:45:00.001-08:00

My mom took me with her to test drive the Honda Fit. We didn't feel welcomed at the dealership. We walked round and round the showroom three times. There were many staff members, but none of them offered their assistance. A few of them took one look at us and then turned away ignoring us. Well, what do I expect, right? A woman with me in tow. In their opinion, we are not the "buy-a-car" type and we can't possibly afford to buy a car.

We are going to have a Fit! My mom will pick it up this Friday. This is perfect timing because our van broke down today. It has a severe oil leak and my mom cannot drive it any more. She parked it and it will sit there until Emily and Peter are ready to move back to Edmonton. My mom will then tow it to the shop to get it fixed.

Flu

2010-02-08T21:46:00.000-08:00

I have been in contact with many others who contracted the flu - such as my roommates, Peter, Emily, and Grandma. My mom gives me garlic pills everyday to help boost my immune system. My mom and I have been lucky up until now. We both have runny nose. My mom aches all over, but she does not know if I have any pain.

My mom has been kind of stiff and sore after a rear-end collision on January 30. A few days ago, she came down with the flu and it is hard to tell whether the pain is related to the whiplash or to the flu.

My mom went for a physiotherapy assessment this afternoon. She did some stretching exercises and had hot packs to her neck and back. She is feeling less stiff tonight. She was given an exercise program to work on at home and to return for another assessment a week later.

Baby on its Way

2010-02-07T18:20:00.001-08:00

My mom has been too busy to help me write my blog. That is why you have not heard from me for a long time. Emily and Peter came home to visit about a week ago. I could see that Emily's tummy is growing. My mom patted her tummy and asked me what was in it. I said, "Baby!"

Over the past few months, my mom has been exploring inclusive post-secondary education for me. She has submitted a couple of applications and will continue to apply to whichever college/university that will accept applications.

I am scheduled for an interview on February 16 at the Alberta Association of Community Living (AACL) office. Please pray for me, as it will be nice for me to be accepted into a program this coming fall. This will allow me the opportunity to meet with peers about my age. I need to learn how to interact meaningfully with others. My mom has been told that the government funding cut is affecting the program and it will reduce my chance of success.

Speakers

2010-01-06T10:52:00.000-08:00

As you all know, I love speakers. Emily and Peter have this cool Sims home and garden game that I can place gazillion speakers into a house. This is so much fun! My favorite is the snowman speaker. I line them up like tin soldiers all over the house and the yard. I also have wall speakers hanging in the air. Hehe . . . they are actually mounted on the walls, which are made invisible so that I can access the inside of the house.

I have been playing the Super Mario car games by asking for "car". When my mom first showed me the different courses, I did not seem to comprehend how to stay on track to complete the race. I was also limited by my short attention span. Initially, I was fixated with the windmill on the Moo Moo Meadow course. I kept going back and forth toward the windmill site rather than finishing the race. After I got bored from looking at the windmill, I tried other courses. To everybody's surprise, I started to complete races and I kept breaking my own time records.

Shingles

2009-12-29T22:13:00.000-08:00

In the evening of Boxing Day, my mom noticed rash on one side of my chest wall. She suspected that I had shingles. I went to a medi-centre the next morning and the doctor confirmed the diagnosis. I started on anti-viral medication right away.

My mom is glad that she is with me when this happens because she can take care of me. It would have been a big worry for her if I were in Edmonton while she is here in Vancouver to visit Emily and Peter. Since I am not able to tell her what bothers me, she has to count on her observations to assess how I am doing.

I have spiked a fever for the first two nights and I get cranky some of the time. Other than these, I appear to cope well with no evidence of pain or distress.

Despite the shingles, I am having a great time here because when I get tired of one activity, Peter and Emily come up with something different for me to do. Whenever I can articulate what I want clearly, I get my wish. The following are examples of what I have successfully asked for:

* "silent night" - This is my current favorite music.

* "bubble" - the Bomomo game.

* "trees" - Peter and Emily have a Sims game. Peter gives me a piece of land to build a forest. I have fun putting in Christmas trees, palm trees and many other different kinds of trees to fill up the entire lot.

* "bed" - I saw Peter furnishing homes with beds. When I ask for "bed", I get my turn to play with moving beds all over the place.

* "house" - Then I got interested in house designs creating funny looking structures. I am not as interested in beds any more because I have found speakers and stereo systems to move around.

* "windmill" - Peter created a game for me. I can make windmills spin when I say numbers. When I say "two", the windmill with 2 blades spins. Sometimes I ask for this game by saying a number. Generally, I say "two" or "six".

* "car" - Peter taught me a Wii car game. My favorite is the Moo Moo Meadow course because it has a windmill. So, when I say, "car" and "windmill", they know exactly what I want.

* "dinosaur" - This is a create a creature game. I have created a few unique creatures. Everybody laughs at the one with a big tummy, which looks like it is pregnant.

* "shopping" - I am not really interested in shopping. All I want to do is to look at fans, speakers and Christmas trees.

Broken Record

2009-12-24T13:41:00.000-08:00

I have kept my mom so busy all day long that she does not have time to help me with writing my blog. I call out, "Mommy", "Help please", "Bubble", "Dinosaur", "Candle" etc. constantly. I say "mommy" in such a whiny voice that Emily laughs about it. I call out for my mom so many times a day that I sound like a broken record.

I must be honest and admit that I have not been in my best behaviors 100 percent of the time. Anyway, who can? Nobody is perfect! Generally, it is when I am hungry or tired that I get agitated. I have made Emily cry one time and my mom frustrated quite a few times, especially during the night. I wake her up and make her feel shivers down her spine when I poke my finger in her ear.

Other than the occasional rascal moments, I have been enjoying my time here in Vancouver with lots of new experiences, including tandem cycling, chocolate fondue, Wii fitness games, different computer games, etc. I am talking/vocalizing more because I can generally get what I wish for when I can express myself with words.

Tandem Cycling

2009-12-19T15:23:00.000-08:00

This morning the weather wasn't too bad and so my family took me outside. Before we left the apartment they showed me videos of tandem bicycles and tried to put a helmet on me. I wasn't too interested in the videos and wasn't keen on the helmet - I would let them put it on but would take it straight back off.

But when they walked into a bicycle shop I got very excited. I just wanted to grab one of the bikes and go! My family organised a tandem bicycle rental and we took it out on to the street. Now that I knew what was happening, I would tolerate the helmet. I just wanted to ride this bike! My sister and Mom were there to support me all the way through and they took these videos:

And just like any other type of ride, the corners were the best bit. On some of the bike paths you had to turn left or right and then get the bike between two poles. I'd yell out "wee!" as we went through. It was much more interesting than riding in a straight line. :)

I kept very good balance the whole time and we never had a problem. That's despite the large number of dogs we passed. Vancouver people like their dogs! When I'm up higher on a bike, the dogs don't worry me.

Chocolate Fondue

2009-12-15T10:42:00.000-08:00

We have chocolate fondue two nights in a row. I fall in love with it and would like some more this morning. My mom is not in a mood for it, so she puts away the fondue set. I am not going to give up and I have created my own apparatus.

It is raining outside, so I suppose we won't be going out today. I guess I shouldn't complain because a big snowstorm (20 cm.) was predicted for last night. Yesterday, an advice was announced on radio for people to stock up some foods at home and not to go out, if possible. The snow isn't here yet.

Wii Balance Games

2009-12-13T13:39:00.000-08:00

I have been getting up early the first couple of days in Vancouver. Last night, we went to attend a Christmas concert at church. By the time I got home, I was so tired that I fell asleep almost as soon as my head hit the pillow. This morning, I slept in till after 8 am. My mom and I "camp" on the living room floor. It was so nice to wake up to see my mom's cheery face. I felt rested and was playful. I giggled and laughed as I interacted with my mom.

For the past few days, I have been having fun listening to music, playing Bomomo on the computer, and going out for walks or shopping. Emily and Peter showed me how to play some Wii balance games. I surprised everybody by how fast I learned the Table Tilt game and how well I am doing.

Vancouver

2009-12-10T12:28:00.000-08:00

Over the past few evenings (when possible), Emily and Peter called me on Skype. They had their webcam on so that I could see them. They told me that I would be flying on an airplane to go to Vancouver to visit them. They also helped me to count down. My mom thought I was beginning to understand what was going on. I felt a surge of excitement when my mom asked me to carry the suitcase to my room for packing.

Finally, the day (yesterday) came for me to go to the airport and my face broken into a bright smile a few times during the flight. Our flight was delayed and we got to Vancouver later than scheduled. I was tired and was kind of stubborn. It took a while before I calm down and fell asleep.

As soon as I woke up this morning, I asked for music. Peter set up the computer to play music for me to enjoy all day long. When my mom offered to take me out shopping, I said, "no." I played Bomomo for a long time today. Whenever I need a new page for my creative designs, I said, "Mommy, help please." or "All done." My mom showed me how to click for a new page. I have not mastered the skills yet and continue to count on my mom's help.

Greyhound Bus

2009-10-23T09:51:00.000-07:00

Grandma and my mom arrived Vancouver safely this morning. I mentioned that my mom started a knitting project for her long Greyhound bus ride. When her carry-on luggage was checked prior to boarding, she was told knitting needles were not allowed on the bus. What a disappointment! What was my mom going to do for the next 20 hours?

Their bus driver was a young fellow named Peter. "Great!" my mom thought to herself, "Peters are nice guys!" She asked Peter, "I want to ask you a question. You don't need to say "yes". Will you allow me to knit on your bus?" Guess what this friendly guy said? My mom promised him that she would not hold him hostage by using the knitting needles.

Vancouver is raining and has been raining for the last few days. Since Grandma and my mom come from sunny Alberta, they may be able to bring them some sunshine.

Uncle-to-be

2009-10-21T15:45:00.000-07:00

I am going to be an uncle in May of next year. Everybody is excited about it, except me because pregnancy is too abstract a concept for me to understand. My mom starts to tell me, "Emily and Peter and baby."; "Baby in Emily's tummy." I imitate and pat my tummy while saying, "baby".

My mom told me she is going to Vancouver to see Emily and Peter. She is not sure if I can understand. Grandma and my mom leave tomorrow morning and will be back on November 9 by Greyhound bus. This is the first time my mom travels by Greyhound. Since this is going to be a long ride, she started a knitting project and this will keep her occupied. Initially, she bought several Chicken Soup for the Soul books for the road. However, she needs to take a camp bed and her laptop. So, she changed her mind about books because they are heavy.

The bruise on Grandma's face is now finally less noticeable. She fell a month ago and hit her forehead. Since she is taking Aspirin, which is a blood thinner, she developed a huge hematoma right away. As the blood drained down her face, she looked like a raccoon for many, many days. She warned my mom not to tell anybody and not to post her picture on the net.

Swimming

2009-10-12T09:00:00.000-07:00

I used to love "swimming". I don't actually know how to swim, but I enjoyed being in water. Back then when I saw water, I said "jump" and I jumped in. Many years ago (probably 20 years ago), we were at a lakeside one time. I kept running towards the lake wanting to jump in. My mom made full use of that opportunity to train my gross motor skill. After I got to the shore, she took me back a distance. I ran towards the water again and then she took me back. Despite my mom's creative efforts, to this day I still don't run very well.

There was another time. My mom was mopping the floor. She had a bucket of water in the kitchen. When she went out to the living room to do something, she saw me moved quickly along the hallway towards the kitchen. I could really run when I was up to mischief. By the time she caught up with me, I was already stuck inside the bucket.

My mom used to take me swimming weekly. Since I enjoyed it so much, she registered me for Special Olympics swimming. That was about 10 years ago and I participated for about one year only. Initially, my support workers went with me. Then, for some unknown reason, I started to become reluctant to go swimming. My mom had to come along to encourage me to participate. Often times, when I arrived at the place I stopped at the general office area instead of going to the change room. Some of you may be able to guess why I chose to linger there. They had a fan in the office! My mom would borrow their fan to get me to follow her to the change room. Gradually, I absolutely refused to get into my swimming trunk.

My mom felt sad that I lost interest in swimming, as it is important for me to be physically active. Due to my strong resistance, my mom decided not to force me to continue to attend the swimming program. From time to time efforts were made to take me to swim. However, whenever anybody tried to put a swimming trunk on me, I refused. It got to a point that I would refuse to put shorts on because I thought that was for swimming too. So, my mom backed off and waited for a few years before she tried again. I wouldn't even enter the building when she got me to the Jasper Place Recreation Centre. Then she tried a different pool. I went into the building, but I backed out as soon as I saw the pool inside.

When we went on the Alaska cruise, my mom got me into the pool once. After that, I wouldn't even get near the swimming pool deck. When I went to Disney World with Emily and Peter, they got me into the pool a couple of times. I was reluctant initially, but Peter managed to get me to dive under water to pick up pebbles from the bottom of the pool. My mom was so happy that I obviously enjoyed the experience.

Last week, my mom decided to take me swimming again with the help of a support worker. We got into the Jasper Place Recreation Centre with no problem because I have been going to the exercise room in that facility. When my mom and the support worker got me into the change room, I hang onto my pants so that they could not put the swimming trunk on me. With gentle persuasion, my mom managed to get me to cooperate. The water in the pool was nice and warm.

Birthday

2009-10-04T18:33:00.000-07:00

Today is my 27th birthday. Even though my mom has been telling me it is my birthday today, I didn't get excited until I see the candle on a cupcake. Yes, a cupcake! Let me post a picture for you to see it.

I kept asking my mom to light the candle while she was busy with cooking supper. She told me to wait till after supper. Oh boy, that was really tough. I was so antsy that it was not funny at all.

Finally the time came for me to watch the candle being lit and then I was allowed to blow it out. My mom knew I want to blow out the candle by myself. She does not trust that I can do so "safely", i.e. blowing it out without contaminating the whole cake. When I was ready to blow, she took the cupcake off the big cake and placed it in front of me. I blew and clapped. Job done and I am happy! I don't even want to eat the cake. In my opinion, the sole purpose of the birthday cake is to hold the candles.

Free Potatoes

2009-09-29T14:31:00.000-07:00

Last Saturday, there was a free potato giveaway event in NE Edmonton - 50 lbs. per person. The staff decided to take me and my roommates there as our outing. My mom and Grandma wanted to see what this was all about, so they came along. My mom grew up as a city girl and thought it would be nice to go to a farm. Since we could not fit into one car, my mom drove. It was great for me to spend time with my mom and Grandma going on a long car trip. I giggled and clapped from time to time. Shortly after my mom drove out of town, I said, "Emily." My mom had a feeling that I thought we were heading out to the airport to pick up Emily and Peter.

By the time we got close to the site, there was a long, long line up of cars ahead of us. We inched forward at snail speed. It was a beautiful sunny day and my mom told me she would have taken me out to walk along the road side if she wasn't driving. Grandma got out of our van to walk a bit and she picked up some potatoes from the fields. It took us over two hours to get to the place. By that time, all the potatoes were gone. My mom was disappointed, not because there wasn't any potatoes, but because there wasn't anywhere we could get out to move around for some physical activity. My mom found out from the news that there were over a thousand vehicles crawling along the highway in pursuit of potatoes that day.

Potatoes or no potatoes . . . . . I don't care. I had a good time!

Bomomo

2009-09-17T18:23:00.000-07:00

Peter sent the Bomomo link to my mom some time ago. She experimented with it a few times, but she has not let me try it yet. The weather has been so wonderful over the past couple of weeks that she prefers to take me out biking. She knows the balmy weather will not last long.

It rains today, perhaps to my delight, because I don't have to go out on my bike. My mom decides this is the perfect day to expose me to the new experience of Bomomo. I am fascinated by the colors and the movements. I definitely prefer the movements of going in circles to going in straight lines. I just love the spinning movements and, from time to time, I verbalize "turn" and "dum-dum-gin".

I play for over half an hour and my mom wants me to go home because she has work to do. I refuse to leave and she let me play some more before guiding me downstairs, which I comply reluctantly.

Hair Cut

2009-09-13T14:31:00.001-07:00

Today is another nice day. My mom decided to take advantage of it to cut my hair in our backyard. Cleaning up afterwards is a lot easier when it is done outside. I have come a long way considering the fact that a few years ago, both my mom and myself dreaded having my hair cut. Today, I carried a chair outside and sat patiently waiting for my mom to get all the haircut tools ready. Within minutes, my hair was cut and I look handsome now.

I am sure you cannot imagine what a kerfuffle it used to be when I got my hair cut. Firstly, my mom put a fan right in front of me so that I was willing to sit there. My mom had to do the job really quick, as I won't sit still and I ducked constantly. When I started to get restless, she would light a candle and placed it on the floor to my left. When I turned my head to my left and looked down at the candle, she cut the hair on my right side. Then a candle was lit and placed on the floor to my right. The very last resort was a lantern to keep me entertained till the job is done.

Indian Summer

2009-09-11T18:43:00.000-07:00

We have a very nice day today. My mom knows that this kind of weather is not going to last long. She took advantage of the warm sun to enjoy the fresh air outside. She took me for a bike ride in the afternoon. Every time we go out, I am responsible for closing the garage door with the remote control.

Upon our return, I got off the bike and ran towards the garage side door. I wanted to visit with my mom some more before returning to my home. I couldn't get in because the door was locked. I turned to my mom and pointed to the garage door. My mom said, "You can open it. You know how to open it." I walked back and forth in circles between the garage door and my mom at least half a dozen times. My mom just sat there and waited patiently. Eventually, I figured out the solution. I went to the bike's basket to reach for the remote control.

My mom took me out again after supper. She gave me a pile of Emily's thank you cards to mail. With the mails in my hand, I knew my assigned task. After I dropped the thank you cards in the mailbox, my mom proceeded to take me for a walk in the park. However, I kept wanting to cross the road towards our home. Again, my mom allowed me to make choices. With the exception of stopping me from jay-walking, she followed my lead. I walked past my own home and headed straight to my mom's door. I am so happy my mom let me in. I indicated I wanted to watch TV and she put on the Lawrence Welk show for me.

Show

2009-08-27T19:19:00.001-07:00

I used to have several Lawrence Welk show VHS tapes that I watched regularly. They got so badly overused that Grandma disposed them. Somehow one tape escaped extermination. I have been watching it for a couple of days now. I enjoy it so much that I laugh and clap as I watch the show.

My mom has been taking me out on my buddy bike almost daily. She always has a bowl of ice cream on raspberries waiting for me. That is the only reason I am willing to go on the bike with her.

Today, as we turned the street corner to near the vicinity of the dog statue, I said, "Dog". I feel pretty safe because I have figured out that the dog does not move. My mom is happy that I talk to her. When I saw a windmill, I said, "Windmill". There is a water fountain in somebody's front yard. I stopped and watched it. My mom asked me, "What do you see?" I replied, "Water".

Making Choices

2009-08-22T18:34:00.001-07:00

My mom would like to allow me to make choices. Every day, she asks me a few times if I want to go on my buddy bike or not. My response has always been a definite "no". We have only been out on my bike once this summer. My mom feels that it is such a waste to have it just sitting in the garage. Today she prepared a big bowl of raspberries with a small amount of ice cream on top. Again, I said no to the bike ride. She gave me a spoonful of the treat and then I was willing to go with her.

My mom got me to sit on the bike and then she gave me the raspberries and ice cream. She waited till I finished my snack before she peddled us out of the parking lot. Powered by the ice cream, I started to peddle as well. We were going so fast that my mom stopped peddling.

We passed by a house where there was a dog statue sitting on the front lawn. I stared at the dog and I wondered why it did not move. I kept turning my head around to see if it came after us. Noticing that I was intrigued by it, my mom took me back to the spot and let me look at it again. I stayed there for the longest time staring at it. I am really puzzled by this motionless creature.

Tragic Loss

2009-08-12T20:42:00.000-07:00

An aunt was killed in a car accident. My mom was in shock and denial for some time before she finally begins to accept the reality. She hasn't been sleeping and is feeling exhausted emotionally and physically. She stayed up most of last night typing a tribute to my aunt. This helps her to cope with the loss. The funeral will be on Saturday. Hopefully, my mom can reach some form of closure and be able to move on.

Starting from tonight, my mom will adhere to her doctor's advice and take a prescribed medication that promotes restorative sleep. She need some good sleep/rest in order to be more functional and productive.

Emily and Peter will be coming home Friday morning. My mom is looking forward to seeing them. This definitely gives her morale a boost. She started her cooking frenzy already. Yesterday she did some baking. Today she shopped for ingredients to make wonton. Stuffed chicken wings will be on this weekend's menu.

Doctor's appointment

2009-08-06T22:32:00.000-07:00

I am determined to impress my mom and to make her proud of me. This afternoon, my mom took me to see my doctor. Generally, when I realize that we are outside the doctor's office, I refuse to get off the van. Today, I got off and walked into the office without my mom dragging and pushing me in. That was nothing as compared to when the nurse called out my name to go with her. Instead of running towards the door trying to escape, I stood up immediately and followed the nurse to go inside. My mom was in shock. She couldn't believe what she was seeing.

Dental Appointment

2009-08-06T19:24:00.000-07:00

I had an appointment to clean my teeth yesterday. Having a dental appointment for you may be as simple as getting there on time. For me, it requires a lot of preparations. One time, when my auntie cleaned my teeth, I clamped my teeth on the mirror. It horrified everyone present to hear the cracking of the glass inside my month. I wouldn't let go of my bite for a long time. Thank God the mirror did not shatter in my month. I continued to crush a few of my auntie's dental tools. The other times that I had my teeth cleaned were either under anesthetic or given medication to make me sleep.

I will not allow my teeth to be brushed properly and I have not had my teeth examined or cleaned for a few years. So, my mom would really like to have it done. She obtained a prescription from my doctor for a sleeping pill. She delayed my bedtime the night before. I was waken up early in the morning to help in making me tired in the afternoon. I was given the sleeping pill after I return home from my volunteering. My mom put me to bed in our van. I fell asleep almost instantly. When I started to snore loudly, my mom drove me to the dental office. I woke up when she turned the ignition off.

I could recognize the place and I immediately switched to a high alert mode. My mom tried very hard to coax me back to sleep, but I didn't feel safe to doze off. When it was time for my appointment, my mom used a wheelchair to wheel me in even though she didn't have any confidence that I would allow my teeth to be cleaned. I saw many familiar faces at the office - family and friends. That helped me to calm down a bit. My cousin (the dentist) came in and sat right next to me. While we were waiting in the parking lot, my mom explained to me that my cousin would be brushing my teeth for me. I started to make sense of what my mom was telling me.

When my mom told me to open my mouth for my cousin, I comply. Other than wiggling away from time to time, I allowed my cousin to clean my teeth. My mom helped in keeping my mouth open and she spoke to me calmly and praised me the whole time. My cousin managed to clean the front of both my upper and lower teeth. They didn't want to push their luck too much and decided not to do the entire job in one sitting. I will have to go back another time. May be or may be not. My cousin noticed that I have a wisdom tooth coming out and there is not enough room for it. I may have to go under anesthetic to get the wisdom tooth pulled out. In such case, any other dental work that needs to be done can be taken care of at the same time.

My Favorite Cousin's Wedding Day

2009-08-03T13:08:00.001-07:00

My favorite cousin got married on August 1. I do not understand abstract concepts, so I have no idea what a wedding is all about. I just know that there are music and lots of happy people. I had a great time at the banquet that evening. I laughed when everybody else laughed. I clapped when others clapped.

After my mom tucked me in for the night, I continued to chuckle. I sat up a few times and said to my mom, "Mommy . . ." I wanted to talk to her, but didn't know how to express myself. My mom figured that I must have wanted to tell her how happy I was. Every time my mom tucked me in again, she repeated my bedtime prayer to send me a strong signal for sleep. I finally dozed off at around 1:30 am.

Emily's Wedding Day

2009-07-28T15:44:00.000-07:00

We had rehearsal the night before Emily's wedding. On our way to the Hastings Lake Gardens, it rained and we were lucky that it did not rain during the rehearsal. I had no idea I was to be the best man and I didn't know what I was supposed to do. I was a bit nervous or tensed that evening because I didn't know what to expect. I moved away from my spot from time to time and I needed to be guided back. Overall, I listened reasonably well and did okay.

On the day of the wedding, I was reluctant to go up to the gazebo. Peter and Herman were very patient with me. They talked to me calmly and gently guided me up to where I was supposed to stand. I gradually calmed down and began to enjoy my role. I was relaxed and I smiled constantly.

God has blessed Emily and Peter with beautiful weather all day long. A lot of pictures were taken in the morning. The afternoon was too sunny and hot for more pictures, so we proceeded to Hastings Lake Gardens and took a rest at the community hall before the wedding ceremony. My mom loved the little balloons tied to the top of the Lego church Emily built years ago. This was Grandma's idea, which was copied from the movie "Up".

Edmonton was hit by a thunderstorm the next evening and apparently there was a tornado warning. It hailed in some parts of the city and the power was out temporarily for many homes. We heard from the news that some big trees were uprooted and there were damages to buildings, e.g. the front entrance of CN tower collapsed. Aren't we glad this didn't happen on Emily's wedding day!

Oncology Follow-up Appointment

2009-07-07T11:55:00.000-07:00

Grandma had a mammogram test done last week and she saw the cancer specialist at the WW Cross Cancer Institute yesterday morning. Everything is fine and Grandma does not need to see the specialist any more. She was instructed to see her family doctor every 6 months and take yearly mammogram test.

Again, the weather was great for my second Walk for Jesus on Sunday with my other friend. Supports continue to come in and I have now raised a total of $6,120. We walked down the River Valley Trail to the bank of the Saskatchewan River. There were so many canoes on the river that attracted me to lean on the fence to watch them glide downstream. My mom wishes she could take me on a canoe too as a new experience for me.

This week our weather resembles that of Vancouver. It is nice for our lawn to get a good soaking. We just hope that the rain is not here to stay for too long. My mom has been checking the weather forecast regularly. Yesterday, her spirit dampens when she saw that rain is in the forecast for Emily's wedding day. She told Grandma to help in praying for good weather on Emily and Peter's big day. This morning, she is relieved that the rain prediction has disappear.

Walk for Jesus

2009-07-01T23:32:00.000-07:00

My mom has committed to raise a total of $,6160 for Chinese Outreach ($2,000 for office furniture and $4,160 for 1/2 hour airtime per week for one year). By the day of the Walk on June 28 (last Sunday), I have raised $6,170. Three of my friends signed up for the Walk. One of them could not join us that day, my mom decided not to change the date.

I walk with two of my friends last Sunday and will walk with the other friend this coming Sunday. My mom feels that since I have been so well supported by my family and friends that I should walk more to be worthy of their love.

Last Sunday morning, the rain dampened my mom's spirit a bit. She was happy that by the afternoon when we went for the Walk, the sun was out. The weather was really nice for the walk. We walked for an hour from my friend's home to a park and back. The park was not that far away. It took that long because I walked so slowly. We also stopped now and then to take pictures.

What Is Good Music?

2009-06-22T23:02:00.001-07:00

I think everybody knows how much I like music. Listening to good music, or even playing music on the piano, are some of my favourite things to do. Take me shopping and I'll dance into any store... so long as it has some good music. But what is good music?

My family and friends sometimes try out different music with me. I know my own tastes, but I still need help finding music that I like. For example, I was visiting Pastor Mike's home and he put on some European band for me. No-one in my family knows the name of the band, but who cares? I had a great time and spent the whole night dancing. Pastor Mike even joined in with me for a bit! :)

On the other hand, Peter recently gave me his iPod to listen to. He says it was Snow Patrol, but I think it was terrible. Whatever he gave me, there was no bass, no beat, just some guy squealing away. I took out the earbuds, looked at Peter and clearly said "Music". I'm sorry, but Snow Patrol just isn't music. :P I think he got the hint, because he gave me some U2 after that. :)

P.S. Pastor Mike has this massage chair. I tried it once because everyone wanted me to, but it was so ticklish I just jumped back out again. I went back on my own for a second go (yeah, you have to try these things). It was no different the second time though - that thing is really weird.

Family Reunion

2009-06-21T16:03:00.000-07:00

My mom returned to Edmonton early Wednesday morning after a long day of driving. She had to take repeated rest periods during her trip because of her sore back. Emily and Peter arrived home for a visit Thursday night. It is so nice for our whole family to be together, even though it is only for a few days. I went along for a car ride when my mom drove them to the airport. When we got there, I said "teacup". My mom has a feeling that I have associated the airport with going on a trip to Disney World.

This has been a busy weekend for Emily and Peter. They have accomplished a lot in terms of finalizing their wedding preparations. I went shopping with them and I am all set for my best man outfit.

The Walk for Jesus event is fast approaching - a week from today. I have now raised $5,680 (95% of my $6,000 goal). I would like to thank all my supporters for their donations and prayer support. Their generosity has enabled me to contribute to God's kingdom.

Stanley Park

2009-06-13T20:02:00.000-07:00

My mom went to the Stanley Park a few days ago. She walked along the Lost Lagoon for a bit before she headed east into the other part of the park. She found the Rose Garden. There were only a few blooms on the rose bushes. She ventured further and found the Aquarium. She read on the news that a baby whale was born there the day before. My mom then decided to walk towards the Seawall to ensure that she would not get lost in the park. The Seawall goes around the circumference of Stanley Park. The total distance is 9 km. It was not possible for my mom to walk the entire Seawall that evening. It was time (8:30 pm.) to go home when she reached the location of the 9 O'clock Gun.

Peter has offered a few times to take my mom on a tandem bike (front and back seats) to go around the Seawall. My mom does not know how to ride a bike, so she didn't think it would be possible to ride without falling and breaking her bones. Yesterday, Peter proposed to rent a tandem bike again. He was very confident that it would work out fine. My mom was not sure about it at all. At the bike rental store, she looked at the bike and became nervous. Being a risk taker, she decided to give it a try despite having visions of bruises and scraped knees. My mom has wanted to learn how to ride a bike for some time. She even bought protection gears (knee and elbow pads) back home. She wished she had them with her.

Off they went to Stanley Park - Peter and mom on the tandem bike and Emily on her beautiful green bike. My mom hanged onto the handle tightly for her dear life. She didn't really pedaled because she was afraid of going too fast. By the time they reached their first stop, my mom's palms were all red from the pressure of her grip. Gradually, she started to gain some confidence and began to relax. It was an enjoyable ride and she got home in one piece.

Vancouver

2009-06-06T08:55:00.000-07:00

The weather in Vancouver has been wonderful - sunny and warm. There has been a very nice breeze so it is not too hot. Peter's apartment is nice and cool. It actually gets cold at night if the windows are open. My mom has been sleeping well.

There are a couple of things that are out of the ordinary for my mom. Firstly, she has watched two movies. To illustrate how unusual it is, I will tell you the average number of movies she went to in a decade - two. She has done a lot more walking than usual and she enjoys it. She has walked to Chinatown (about 3.5 km. one way) to do grocery shopping. She has heard of English Bay many times and now she knows how to get there. Peter's apartment is only a block from Stanley Park. It will be a shame not to take advantage of it to go for a walk in the park. This is something she plans to do before coming home.

My mom's back is still troublesome. On good days, it does not bother her until the evening. There are days that she has to start lying down in the afternoon.

Saying Farewell

2009-06-01T19:32:00.000-07:00

My mom and Grandma left for Vancouver Thursday morning and arrived later that night. Since I did not go along, my mom was able to lie down for a rest whenever her back starts to bother her. My mom is happy that the weather during her stay in Vancouver is going to be good.

The last few days went by really fast and my mom already starts to lament that she will soon be heading home (June 12). She loves Emily and Peter and she always feels sad when it is time to say goodbye to them. She loves me too and she misses me while in Vancouver. It will be nice when all of us can be together. That is going to happen from June 18 to 21 because Emily and Peter comes home to Edmonton for a short visit.

My mom came across the following today:

"Life is a long series of farewells. . . . ." It is true! We always seem to be saying farewell to someone or something. Letting-go skills are high on the scale of life skills."

Vancouver

2009-05-25T20:20:00.000-07:00

My mom was going to take me and Grandma to Vancouver for two weeks leaving on Thursday (May 28). She has been very excited about this trip for some time. Unfortunately, her back has not recovered as much as she'd like to. The CT Scan appointment is not available yet. The nurse estimated that it can be as late as in July or August.

Reluctantly, my mom decides not to take me with her on this trip because she cannot manage caring for me 24 hours a day. This has taken away much of her joy as she struggles with making up her mind. On her bad days, she knows it is wise not to take me. On good days, she becomes optimistic and hopeful that she can manage my care. Since I don't know what is going on, it does not bother me at all. So it appears anyway. It is difficult for others to know how I am affected when my family goes away without me.

My fundraising is expected to slow down for the next couple of weeks during my mom's absence. I have done remarkably well so far and raised $5,320, which is 88.5% of my new goal ($6,000).

Mow Lawn

2009-05-23T16:46:00.000-07:00

My mom's back is still bothering her, some days worse than the other. She is now waiting for a CT Scan appointment. She does not want to take a chance of hurting her back, so she got me outside to help her with mowing the lawn.

A couple of years ago, my mom bought a hand mower for me to use. She tried to teach me how to mow the lawn, but I was more interested in pushing it round and round in the parking lot. Let me tell you why. It is much easier pushing it on land than on grass. This year, I must have gotten stronger because I don't mind pushing it on the grass any more. Or, I have gained a better understanding of what the lawn mower is supposed to be for. I stop when I get to the edge of the lawn. My mom shows me how to turn it around to go over another section of the lawn. I have trouble going in a straight line, but that does not matter. I just criss-cross all over the lawn with my mom directing me to areas I have missed. She also helps with the hard-to-reach areas.

I have done such a good job that I get rewarded with ice cream on strawberries. I want the ice cream, but my mom wants me to have the strawberries. After she hands me a bowl of strawberries, I said to her, "ice cream." My mom sure makes me work for my ice cream. With the help of her signs, I said, "I want ice cream please."

Record Breaking

2009-05-15T07:27:00.000-07:00

Yesterday, my mom's back was very sore and she was in agony all day long. As a result, she was not able to help me with my blogging. After being in bed for 10 hours, she is feeling better today.

With the help with my mom's signing, I can say "I walk for Jesus" now. I raised $4,780 at my last participation of the Walk for Jesus event. This year I aim at breaking my own record. I have successfully broke my record two days ago by raising $4,940. The Walk is scheduled for June 28, so I still have 6 more weeks to raise funds. I decide to increase my goal to $6,000. Please continue to pray for me and the success of the event.

Mother's Day

2009-05-10T21:32:00.000-07:00

My mom's back is getting progressively worse. She can only tolerate sitting for a short period of time. She had to get up from the table half way through supper and finished her meal standing up. She cannot finish this blog in one sitting as she constantly wants to crawl into bed.

Tomorrow morning, my mom will make an appointment to see her doctor. She needs to get better soon because she will be taking me and Grandma to Vancouver on May 28 to visit Emily and Peter.

I did not reach my goal today as expected. Nonetheless, I have done well and raised $4,690 (98% of my goal) in 2 1/2 weeks. I only need another $90 to break my own record. I have learned to say "Jesus". When my mom says, "Walk for . . . ", I join in and say, ". . . Jesus".

Back Pain

2009-05-08T22:31:00.001-07:00

My mom's back has been bothering her for some time. It gets worse in the evening when she is tired. She didn't really do anything drastic that injured her back. But she has been moving furniture, carrying heavy stuff, and sometimes I "wrestle" with her when I decide not to comply.

Yesterday, my mom's back was so sore that she had to go to bed. She figured it was triggered by fixing the kitchen cabinet door hinges. Half way through the job, she decided to quit to give her back a break and finished the job the next day. She rested a lot today and started to feel better.

The lock to the courtyard was not working properly and the door could not be opened. Since this is a safety issue, she decided to fix it right away. She is not a locksmith. Every time she replaces a lock, she has to screw and unscrew many times before she gets it right. Repetitive movements are challenging for her. At the best of times, this task can trigger pain.

I got curious about what she was doing and I offered my assistance by grabbing the screw driver. With hand over hand assistance, I did some of the screwing for her. It is good that I can help, even if it is only in small ways.

O Canada

2009-05-07T19:23:00.000-07:00

I went over to visit my mom and Grandma after supper. I sang, "O Canada" to prompt my mom to go and practice playing the piano. She is getting better with it now. Last week, she was really struggling because she has forgotten so much.

This morning, my mom took me to see our family doctor for a prescription renewal. I recognized the place and I refused to get out of the van. It took my mom a long time to persuade me to get off and to go inside. I am not as frightened of seeing the doctor as I used to. I was hesitant, but my mom did not need to drag me into the examination room.

I have now raised over $4,500 and reached 95% of my goal. There is a good chance I will reach my goal by the end of this week. I will have to raise my goal soon. Thank you so much for your love and support of me!

Piano

2009-04-29T17:40:00.000-07:00

My mom stopped piano lessons before she left for Hong Kong and China last spring. After she returned in the summer, she sustained shoulder separation injury from a bike accident. The shoulder took months to heal. Then Grandma was diagnosed with invasive breast cancer in the fall. As a result, she has not resumed piano lessons yet. After not playing for such a long time, she has forgotten what she has learned. This week she started to spend some time each day to relearn the songs she played before. Progress is slow but sure. She is hoping that she will regain her confidence to start taking lessons again in the near future.

Walk for Jesus update - I have raised over $3,500. Thank you again for your love, prayer support and generous donations!

Chinese Outreach Ministries

2009-04-28T18:46:00.000-07:00

My mom has been kept busy with the Chinese Outreach ministries. So much needs to be done that she wishes she can commit more time and energy in the renovation, open house, preparation for the internet broadcasting, etc. Now her focus is on organizing and promoting the Walk for Jesus event.

It certainly does not help to contract the flu in the midst of multiple responsibilities. In addition to knocking her out for days, the flu has triggered her asthma. Her energy level remains low and she feels exhausted by late afternoon. One evening while being lethargic, she was not motivated to do much. She sat in front of the computer and visited several websites including the Chinese Outreach, CIAM Radio and a few other sites. She came across the CIAM birth story and was very much encouraged by it. God is faithful and He answers prayers.

Last Friday, my mom went to a computer store to purchase the components for building a server for internet broadcasting. One of the components was back ordered and would take two weeks or longer to arrive. My mom placed the order without realizing that the person who can build the server will be away in May. We need all the components this week. My mom prayed, but her faith was smaller than a mustard seed. Indeed God is faithful and He answers prayers. The back ordered part arrived this morning. Instead of two weeks, it only took two working days!

Disabilities vs Capacities

2009-04-25T10:45:00.000-07:00

Praise the Lord! As of today, I have raised over $2,000. Thank you for your support. It is your generosity that enables me to be a contributing member of society. What is more important is that you believe in me. You believe that I can do it. Instead of focusing on my disabilities, you see my strengths and capacities. Thank you!

When the focus is on my disabilities, expectations on me becomes low. This can be a barrier for me to learn new skills. My mom encourages me to take responsibilities and to help with various chores. For example, my mom got me to help her with peeling garlic. I dropped garlic peels all over the floor. She told me to pick them up. I quit after I picked up the bigger pieces. She prompted me to continue with picking up the smaller pieces. I have trouble with picking them up because my fine motor skill is not good. I walked over to the kitchen to look around, but could not find what I was looking for. My mom knew I was looking for the broom, but she pretended she didn't know. She was happy that I was trying to problem-solve. She wanted me to use my brain so she didn't jump in and help immediately. My mom urged me to pick up the rest of the garlic peels. I went back to the kitchen again and opened the cupboard underneath the sink. Not there! Eventually my mom suggested that I could go to the washer and dryer to look. I know where the washer and dryer are because they spin and I love them. I found the broom and dustpan near the washer. I proceeded to sweep up the garlic peels and finished the job well with my mom's help.

My Appreciation

2009-04-23T19:08:00.000-07:00

Supports are coming in right after I sent out the Walk for Jesus information. Within hours, I have raised over $1,600. I appreciate your love and support. I am happy for this opportunity to contribute to the kingdom of God.

The Walk for Jesus event is scheduled for June 28 (Sunday) at 3 pm. My mom decided to hold the event in a mall because there will be other special needs individuals joining me in this meaningful activity. It is easier for families to manage in an indoor environment because we will not need to worry about the weather.

Walk for Jesus

2009-04-23T14:12:00.000-07:00

My mom serves at Chinese Outreach, a Christian organization with a radio broadcasting ministry. This year, Chinese Outreach expands its broadcast from 2 1/2 hours per week to 3 hours. A decision has also been made to develop internet broadcasting. It is time for me to Walk for Jesus again to raise funds to support these initiatives.

I am a very successful fundraiser. My very first experience was participating in the Canadian Liver Foundation Stroll for Liver event two years ago. With my mom's support, I was the #1 top individual fundraiser of the event nationally. My mom was so encouraged by my success that she created the First Walk for Jesus event to fundraise for Chinese Outreach and I raised $4,780. This year my goal to break my own record. I need your prayer support for the success of this event. Thank you!

My Contributions

2009-04-19T15:07:00.000-07:00

It has been two weeks now and my mom has not recovered a 100 percent yet from the flu. Her bones are still aching and her energy level is low. The flu has now triggered her allergic asthma giving her an irritating cough. Being sick forces my mom to slow down and to take rest periods. This give her the time to reflect on what has been happening in our lives.

I am devalued when others view people with disabilities as burden to society. My mom knows this is not right, and yet she finds herself trapped in this inappropriate negativity. She is very thankful that Emily and Peter care so much about me, but is also concerned about me being a burden for them.

It is important for others to keep in mind that I am able to contribute in different ways. I can help people around me to become more loving, caring, patient and compassionate. My mom is proud of her problem solving skills. Little does she know that I am the one who trains her over the years to become who she is today. Caring for me enhances her critical thinking and creativity.

Wedding Bells

2009-04-13T20:48:00.000-07:00

Emily and Peter came home to visit over the Easter long weekend. Since they have started to give out their wedding invitations, I can now feel free to talk about their wedding plans. Their wedding will be on July 17 this year.

Both Emily and Peter want to involve me in their wedding ceremony and they desire for me to have an important role - I am going to be the best man! I am blessed that my family believes in me. By giving me the opportunity to take on new responsibilities, it allows me to contribute in meaningful ways.

Whenever we get a chance to be together, Peter makes special efforts to spend time with me and to get to know me. I used to shy away from him, but not any more. I feel very comfortable around him and I know I can trust him.

My mom, Emily and Peter are all sick with flu symptoms. On Sunday morning, I put my hand over my forehead and said, "Hot, hot." My mom was all excited that I could communicate my discomforts. She took my temperature which turned out to be normal. My mom asked me if I have pain. I imitated what she said - "tung-tung". She then asked me where it hurts. I touched my forehead. My mom hopes that I won't get sick.

Making Choices

2009-04-01T23:12:00.000-07:00

To help a friend, my mom attended a 3-hour workshop last Saturday to be an observer and wrote a summary report of the event. I am 100% sure that none of you can guess what the workshop was all about. It was a workshop on film-making! As you may know, my mom is not even good in taking pictures. It is really a stretch for her to learn to be a film-maker and/or director. She participated in the activities of the workshop, such as designing how to shoot a scene and how to direct the crew and the actors. All the other participants were young men and women. They must wonder why this old woman wanted to learn how to make a movie.

Saturday nights are my sleep over nights at my mom's home. With movie on her mind, she put on the Sound of Music for me to watch before I went to bed. As soon as I saw Julie Andrews' picture on the cover of the DVD, I said, "Do-Re-Mi". She was really surprised that I already knew what I was about to watch.

I do know a lot more than what I have been given credit for. When others are not cognizant of my capacity and abilities, it is easy for them to set low expectations for me. This becomes a barrier for me to reach my potentials. Very often, I am not allowed to make choices I am capable of. Everything is decided for me for "my own good". I would like you to know that I want to be given the opportunities to make some choices in my life. This is how I will learn and grow.

Deficits

2009-03-19T18:55:00.000-07:00

The management of my home will be switched over to a service provider on April 1. Persons with Developmental Disabilities (PDD) provides funds to pay for the staff to look after me and my roommates. My mom does not get paid for managing the home or for covering staff shortages and providing personal care to my roommates. As her contract with PDD draws to an end, she noticed that the funds in the bank account are lower than expected. She went through her financial records and discovered some mistakes in her invoices to PDD. So far, she found out that she has under-billed PDD by $7,000+ in 2007. My mom is very upset with herself for the mistakes. She needs to remember that she has been too busy and stretched over the past few years. It is not surprising at all for her to make mistakes. After all, she is a nurse, not an accountant. It is becoming nerve wrecking for her as she continues to find more mistakes.

My mom has been totally stressed out as she knows it is difficult to recover funds for previous years. She is very thankful that the financial clerk at PDD has been very kind and patient. This has certainly helped her in coping with the situation. PDD's decision is not to release funds at this time. My mom has to come up with her own money to cover for the shortages of the March payroll. It is unknown at this time how many thousand dollars she needs. She will meet with PDD in May to resolve the problem. My mom will need to celebrate when this real life nightmare is over.

Sleepless Night

2009-03-15T19:09:00.000-07:00

Lately, I have been asking for mai-mai (little sister) on a regular basis. My mom always respond by saying, "Mai-mai is in Vancouver." Today, I have been practicing how to say Vancouver. I was over at my mom's home to sleep over last evening. Mai-mai called and I said "Hi" to her.

My mom was working on the Beraka Residence book-keeping last night. She was so behind in her work that she was relieved when I fell asleep. She was able to balance the books for the budget year 2006, but was shocked to see a hefty deficit for budget year 2007. She was really stressed out and was trying to figure out what went wrong.

I woke up at about 1 am. and wanted to watch the Teacup video. My mom tried to coax me back to sleep while she anxiously reviewed the 2007 invoices and funds received. With my distraction, she couldn't concentrate. So, she gave up at 2 am. and turned the computer and light off.

I stayed awake all night long. Sometimes I laughed out loud while other times I got very agitated. Since my mom was right beside me, she calmed me down whenever I was upset. We got up at 7 am. and, for a change, we were at church really early this morning.

On our way home from church, I started to doze off. It is extremely unusual for me to fall asleep in the car, even when my mom takes me on long driving trips. One time, my mom drove to New York. The whole trip was 12,000 km. and I fell asleep twice during that trip for a total of less than 15 minutes. Today, I slept so soundly that I snored. When we arrived home, my mom didn't have the heart to wake me up. She covered me up with a few afghans and let me sleep longer. After lunch, she put me to bed hoping that I would take a nap. No luck! She came over to my room shortly after 9 pm. to check up on me. I was already half asleep and I went "unconscious" before she left my room. :)

Grandma's Travel Plan

2009-03-13T17:48:00.000-07:00

My mom has been checking airfare and greyhound fares everyday to look for sales so that Grandma can go to Vancouver to visit Emily. Yesterday, my mom found the Air Canada seat sale of $79 one way to Vancouver. She has booked flights for Grandma departing on March 17 and returning on April 8 (about 3 weeks). Emily and Peter will be coming to visit us over the Easter weekend. Unfortunately, the fare for the same flight is $145, so it does not work out for Grandma to come home with them.

Grandma gets tired easily and needs to increase her physical activities. However, Grandma cannot go out much as it has been very cold and the sidewalks are slippery. Today, she took advantage of the nice weather (9 C) to go out for a walk. Visiting Vancouver will give her the opportunity to go out for walks more. This is also a good time to visit because of the cherry blossoms. Grandma has wanted to see them for some time and her dream can come true this year.

Transition

2009-03-09T12:40:00.000-07:00

Since making the decision to switch the management of my home to a service provider, my mom has been busy with:

* working with the new service provider during the transition. A week after working with one manager, a change of caseload brings us another new manager. This places more demand on my mom's time and energy.

* facilitating a smooth transition and being supportive to our team of staff

* catching up with the administrative work that has piled up on her

* responding to the government's request for a financial review. She has to wrap up the financial records anyway, so it works out well even though the time pressure adds to her stress. Grandma's illness and the many things that happen in my mom's life necessitated postponing the deadline a few times. The financial records are now ready for submission.

My mom has trouble sleeping many nights because of the budget deficit for February. There are surpluses from previous months to cover for the shortfall, but due to her mistrust of the "system", she worries that the funds may not be readily available for the staff's pay cheques. It is too complex for me to explain the situation. She is hoping that it will all work out in the end and that the staff will get paid on time. She has been reassured that funds will be released to cover the deficit after the families submit their February invoices.

Collapse

2009-02-28T21:15:00.000-08:00

I think I have finally watched enough of the teacup video. I still enjoy it, but I am not fixated on it and I stop wanting to watch it over and over and over again.

Tonight my mom teaches me how to play Collapse. I just go click, click, click. That is easy enough to do. I have learned to click the bombs too. I have a short attention span, so either my eyes drift off the computer screen or I stop clicking. I am sure you can guess what happens - Game Over.

Nonetheless, I am getting better and better at it. Initially I kept clicking the same spot even when it did not produce any effect. Now I move the cursor around and click. My mom gives me verbal prompts, such as click the bomb, click the red blocks. She does not know if I understand color concepts or not. She figures that there is no harm teaching me colors at the same time.

Service Provider

2009-02-20T15:10:00.000-08:00

The management of my home has taken a toll on my mom. Even though she has been very stressed, it was difficult for her to make a decision to switch to a service provider. Last night, a meeting was held and she announced the change of management to the staff. The effective date will be April 1. Since my mom has done this for so long, a friend asked her if she was serious, thinking that this may be an April fool's day joke.

Maybe my mom will be able to have a life again. I am looking forward to spending time with a less stressed mom. It is time to start dreaming and if I dream hard enough, my dreams will come true. It will be nice to go to Disney again. Cruise will be nice too.

When I visited my mom this afternoon, I asked for the "car". My mom set up the Wii game and the steering wheel with base for me. After a while I got frustrated with the steering wheel. My mom gave me the black steering wheel I used to play with. I was definitely happier with it.

The Worst is Over

2009-02-16T22:34:00.000-08:00

Grandma's burned skin starts to peel off. She is feeling better as the area is no longer itchy. As expected, she gets tired very easily. She is supposed to be more active to build up her strength and endurance. However, it has been too cold and slippery for her to go out. My mom tries to take her out regularly, but sometimes she refuses to go when it is really cold outside.

I have been waiting "impatiently" for either Emily or Peter to announce their wedding plans because I don't want to be the first one to publicize it. I am so glad Emily finally did. Now, I can talk about it too. I am going to be a good brother and help her in any way I can. I have offered to do some pick ups for her on her wedding day. As you know, microphones and speakers are my favorites. I will love to pick up the sound system for her.

Teacup

2009-02-15T21:41:00.000-08:00

Last night was my sleep-over night at my mom's home. As soon as I got into the room, I asked for "teacup". My mom turned on the video of me on the teacup ride. I smiled and clapped as I watched it. I asked her to replay it over and over again for a few times before I was willing to go to bed.

As grocery prices go up, our freezer becomes fairly empty. My mom capitalizes on this week's meat sale to stock up. After tucking me in, she went downstairs to cut up and package the meat. She came upstairs to check on me periodically. Every time she came up, I was sitting in front of her laptop. I know how to turn on computers, but I have not figured out how to turn on the laptop yet. I sat staring at the laptop hoping that it would come on automatically.

My mom finally finished her task by around midnight. I asked her very nicely for "teacup", so she turned the video on for me before she went to brush her teeth. When she came back, I was viewing the video on a full screen. She was surprised because she didn't know this could be done. It took her a while to figure out how I did it.

The video showed that at one point, I laughed so much that I almost drooled. When I watched that part, I started to swallow.

Stretched to the Limits

2009-02-13T17:04:00.000-08:00

Managing my home, caring for Grandma and chairing the Board of Chinese Outreach are all very demanding on my mom. She is feeling stretched to her limits. It would have been worse if she has to go to work. This is her third year of leave of absence without pay. Last year, she substituted occasionally at the Faculty of Nursing, U of A. This year she can't even do that because she has been so busy.

Despite her lack of time and energy, she continues to take me home for visits. She gives me crayons to color or pen and paper to draw. She also puts on the Sound of Music songs for me. The song I enjoy the most is Do-Re-Mi. One day when my mom asked me if I wanted to listen to Do-Re-Mi, I said, "Fa". Today, when she "sang" (I use the quotation marks because her singing is terrible!) Do-Re-Mi-Fa, I said, "So". I started to sing along and when the songs goes like this ". . . I must have done something . . .", I join in and sing, "good".

Comfort Foods

2009-02-05T17:41:00.000-08:00

My mom has been feeling stressed and she turns to foods for comfort. Every so often she jumps out of her chair, hops downstairs looking for a bite. She tries to pick healthy choices, such as fresh fruits. She generally doesn't go for sweets. However, she has a pitfall - nuts.

In the afternoon, she heads outside to remove the packed ice on the parking lot as a strategy to suppress her urge for comfort foods. This also gives her an hour or two of needed exercise. The activity gives her the added bonus of stress relief.

When I come home from my volunteer job and see my mom attacking the ice with vengeance, I offer my help. My contribution doesn't lie in how much I do. To be honest with you, I really don't know how to do the job. I have a support worker who is willing to take the time to teach me. With his help, we have cleared a section of the parking lot for safe passenger loading.

Radiation Burn

2009-02-03T13:28:00.000-08:00

At the beginning of her radiation treatments, Grandma got a nice tan on her chest. Now her chest is black from radiation burn. The area hurts and she finds the itchiness unbearable at times. Fortunately, there is no blister or skin break. We have been told that the effect of radiation peaks in two weeks. We are currently at the two-week point. Hopefully, her skin condition will not get any worse than what it is now.

It rained a few days ago and our parking lot is very slippery. My mom has been going out daily to work on breaking off big slabs of ice. She can only do some each day because she will be in too much pain if she does too much. She managed to remove all of the ice in front of the garage so that there is at least a safe area for loading and unloading passengers.

Super Paper Mario

2009-01-30T14:56:00.000-08:00

It was so nice to have Emily home for one week. She bought a new game called Super Paper Mario and I got to play with her a couple of times. My mom does not know how to play this game. One day, Emily was not home and I asked for it. My mom put the Elebits CD in and I kicked up a big fuss because that was not what I wanted. There was another time I wanted to play and only Grandma was home. She tried to help me, but didn't know how. Both of us got frustrated about it. To resolve the problem, she found an opportunity to hide the remote controls when I was not watching.

Last evening, my mom took me along to drop Emily off at the airport. When I saw the luggage going out to the van, I smiled and said, "tea cup". I honestly thought I was going to Disney again. When Emily said goodbye to me, I turned to my mom and waved goodbye to her.

Peter's Blog

2009-01-27T20:38:00.000-08:00

Peter wrote several blogs from January 24 to 26 about our trip to Disney World. He posted many photos of me on my favorite rides. He also included a video of me on the spinning tea cup ride. He did a much better job than my mom in describing the rides and how I enjoyed them. Please feel free to access his blog to view the photos and the video.

Emily enjoyed the Splash Mountain ride and would like me to give it a try. After I got frightened by a few fast and scary rides, Emily, Peter and my mom started to show me the rides (if possible) and they allowed me to decide whether I wanted to go on the ride or not. They took me to a spot where I could see the boat dropped rapidly downstream causing the water to splash. I said no to the ride and they asked me a couple more times to make sure I really meant no. My decision was clearly expressed. They turned me around to look at another section of the same ride. After watching the boats meander slowly forward, I agreed to go on the ride. Emily got excited about my change of mind. Peter is indeed a true friend. He would not allow anyone to cheat me. He turned me around to show me the dropping boat again. I said no and my wish was respected.

Fond Memories

2009-01-24T20:21:00.000-08:00

I am blessed that Emily and Peter care so much about me. Without them, it would not have been possible for me to go to Disney World. My mom showed me pictures of our trip. It brought back fond memories of my favorite rides. I smiled heartily and my eyes sparkled. As I looked at the pictures, I said, "teacup", "car", "dum-dum-juen (round and round)".

Emily is now in Edmonton visiting us for one week. Tonight is my sleep-over night in her room. My mom put on some Christmas music for me and I am giggling as I listen to the familiar songs.

The Sound of Music

2009-01-21T19:04:00.001-08:00

I have not written for a while because my mom has been too busy and tired to help me with it. I visit her regularly to listen to music, to feed the fish and occasionally we play Elebits. I have been listening to "The Sound of Music" recently. Tonight I said "Do-Re-Mi" to my mom to let her know that I want to listen to the songs.

Grandma has finished her last radiation treatment on Monday. She hasn't experienced any side effect so far. My mom continues to watch her skin for radiation burn. The doctor told them that the effects of radiation will peak in about 10 days after the end of treatments. Her follow-up appointment will be on July 6. She will have a mammogram done two weeks prior to seeing the doctor.

Radiation Treatments

2009-01-09T21:49:00.000-08:00

Grandma is tolerating her radiation treatments well. Her last treatment will be on January 19. There is some swelling in her chest and right upper arm. The doctor told us that the excess fluid will be reabsorbed gradually. Grandma will see the doctor one more time this coming Thursday. The next appointment will be six months later.

Grandma has also tolerated the Tamoxifen well. She will need to take this medication for five years.

Flying Home

2009-01-07T16:14:00.000-08:00

We got up at 3:30 am. to go to the airport to catch our flights home. Emily and Peter headed for Vancouver while my mom and I headed for Edmonton. The flight my mom and I was going to catch was moved ahead by an hour to 6 am. We were not notified of the changed schedule. The check-in line was so slow moving that by the time we checked in, it was too late. Emily and Peter were very worried when they departed on their flight home.

We went on the standby list for the morning flight to Chicago so that we could catch our connection flight back to Edmonton. Unfortunately, there was only one seat available. One passenger was very kind and offered her seat to us so that we could catch the flight. However, the United Airline staff told us that it was not allowed. They booked us for the 3:17 pm. flight to Chicago and the 10:30 am. flight to Edmonton. They suggested that we could standby for the 8:00 pm. flight to Edmonton.

Thank God Emily was able to get me a wheelchair making it easier for my mom to manage the next 8 hours at the airport. There are two shuttles connecting the terminal to Gates #1 - 29 and Gates #30 - 49. My mom took me on these two shuttles back and forth to kill time. Every time, she took me onto the first car and placed me directly facing the front window. I loved it and made "wee" and "ooo" sounds. One time, the lady standing next to me chuckled because of my obvious joy. She said, "another Disney ride!" Whenever we were off the shuttle for a while, I would make a request for "toot-toot train".

We were not as lucky at the Chicago airport. There was no wheelchair upon our arrival. My mom tried to get a staff member to help, but she said that was not her job and left. A passenger was very kind and he went to another gate and asked the staff there to call for a wheelchair for me. In the meantime, a dog showed up right next to me. I started to dash off as my mom tried her best to hang onto me. Eventually, the wheelchair arrived and we were taken to the other end of the terminal. We were not allowed to keep the wheelchair. By that time, I was impatient and I didn't want to sit still. My mom took me to walk around, with our belongings in tow. We came across another dog. My mom spotted it right away and directed me toward a different direction. I saw it too, but since my mom was already leading me to the opposite direction, I was able to stay calm.

There was a MacDonald at the airport. My mom bought me some foods there and that kept me contented for a while. My mom was relieved that I was willing to sit with her while waiting to board the 8:00 pm. flight. We arrived home late in the evening. I went to bed at around midnight (2 am. Orlando time). It was a long day for us. What amazes my mom was that even though I didn't have enough sleep the night before, I stayed awake the whole day.

Last Day at Disney

2009-01-07T15:34:00.000-08:00

Time flies especially when one is having a good time. I have a great time at the Magic Kingdom Park enjoying my favorite rides over and over again. My folks allow me to choose my rides and the directions I want to go. From time to time, they take me to different rides to offer me new experiences. I get nervous going on unfamiliar rides. They make joyful sounds such as "wee" and "ooo" to illustrate their pleasure in order to help me to relax.

Sunday was our last day at Disney. We were going to head home early so that we could swim at the hotel. I went into the pool twice on this trip. My mom considered it to be remarkable because, for many years, I have refused to go swimming. With the encouragement of Emily and Peter, I was not afraid of submerging myself into the water to pick up pebbles at the bottom of the pool.

We got out of the park and I clearly indicated that I wanted more rides by articulating "tea cup" and pointing toward the park. I am very fortunate that my folks value my opinion and wishes. We returned to the park to go on the rides I desired for.

Disney

2009-01-04T04:47:00.000-08:00

We have been heading to the Parks early and coming home late, so I have not been able to write about my days. Today is the last day of our vacation. We decided to sleep in to get some needed rest.

I used to love roller coaster rides, but not any more. I have become very nervous about them. The park I enjoy the most is the Magic Kingdom because it has many rides I like. My favorite ride is the spinning tea cup. The rides I will ask to go on include Dumbo, Carousel, Speedway (racecar), Orbiter (spaceship), and Small World. Peter took pictures of me on these rides.

Another highlight of this trip is learning how to use a camera. To ask for my camera, I place my fingers in front of my face as if I am taking a picture and say "cheese". My mom is teaching me how to say "camera".

I am all ready to go to the Park. We will depart as soon as Emily and Peter can get out of bed.

Universal Studio

2008-12-26T19:34:00.000-08:00

We went to Universal Studio today. When we got there before 8:30 am., there weren't too many people yet. We got on a couple of rides before more people showed up at the Park. My mom watched my facial expressions during the rides to assess how much I enjoyed them. I smiled a little bit, but not enough for mom to be sure that I liked the the rides.

After a few rides, I started to be nervous and I refused to go in. I was so resistant that we ended up leaving. We went to the Barney's show in the afternoon. I was again reluctant to go inside. It was a good thing my folks persuaded me to stay because I enjoyed the show very much. There was singing and dancing. I clapped along and I smiled a lot.

Best Christmas Ever

2008-12-25T21:14:00.000-08:00

This is my best Christmas ever! I got to go on a plane (actually two planes) to arrive at Orlando, Florida this evening. Then, there was the train ride to the airport terminal. We were at the very front car, so I had a very good view of where we were going. After that, it was the bus ride to the car rental office. We drove round and round trying to get to the hotel. One missed turn took us all over the place. Honestly, I don't mind the long car ride at all. I have been smiling throughout the day.

I wonder what surprises I will have tomorrow. I am so excited that I have trouble falling asleep. Stay tuned and I will keep you posted.

Exciting News

2008-12-23T21:49:00.000-08:00

Emily and Peter's flight was delayed by 5 hours. Instead of arriving at 10 pm., their plane landed at 3 am. Saturday - the day of Cousin Andrew's wedding. There are going to be more weddings coming up for our family. In case you have not heard yet, I have an exciting news to share with you. Emily and Peter are now engaged.

Grandma continues with her daily radiation treatment. She is starting to get a "tan" on her chest. Hopefully, she will not get a burn from the treatments.

Family Reunion

2008-12-19T23:11:00.000-08:00

Thanks to the support of family and friends, all of Grandma's rides have been arranged.

My mom prepares some foods for freezing to make cooking easier for Grandma. Tonight, she made meatballs. They are now in the huge freezer - our garage.

We are going to have a mini family reunion, as Emily and Peter are coming home tonight. Their flight has been delayed and they will arrive after 2 am. We all look forward to seeing them.

Needing Rides

2008-12-17T14:34:00.000-08:00

Grandma went to the WW Cross Cancer Institute for some X-rays this morning and will start radiation treatments tomorrow morning. It is a good thing my mom is available to take Grandma for the early morning appointments this week. Her Friday appointment is 7:30 am.

Since we (Emily, Peter, Mom and myself) will be in Disney World from December 25 to January 5, Grandma will need rides on December 29, 30, & 31 and January 2 & 5. The appointment time is good at 2:30 pm.

Grandma's last radiation treatment will be on January 19. Hopefully she will not experience any side effects from the treatments.

Walk More

2008-12-15T16:47:00.000-08:00

Grandma takes a high blood pressure pill daily after she checks her blood pressure. The day after her surgery, her blood pressure was low. Her nurse at the hospital instructed her to skip her medication for the day. Since then, she has skipped a few doses due to low blood pressure. My mom feels that she should be re-assessed by her doctor.

Grandma saw her doctor this afternoon. He told Grandma to stop her blood pressure medication and to see him in three weeks. He suggested that Grandma should go for more walks to reduce weight. If she can lose five pounds, she won't need to take the medication any more. Being winter, outside is too cold and icy for Grandma. "More" walk will become "mall" walk.

The doctor had another advice - do not eat too much salt. Grandma always complains that my mom's cooking is not salty enough. It bothers my mom every time she watches Grandma sprinkles salt on her foods. Recently, she gave Grandma a bottle of salt substitute. You should see how Grandma sprinkles to her heart content. My mom hopes that she will soon ease off on the use of it.

Cold Weekend

2008-12-12T19:14:00.000-08:00

Normally, Grandma does not want to go out in the evening. Tonight, when my mom asks if she will go out with her, she readily agrees because she knows that she will be housebound for the next few days due to the expected extreme cold weather this weekend. By Monday, the temperature will be day time high at -29 C and night time low at -34 C. Grandma will have her first radiation treatment on Thursday. The weather will be a little nicer. Day time high on that day will be -16 C and night time low will be -20 C.

Emily and Peter will come home on Friday and Cousin Andrew's wedding will be on Saturday. Hopefully the weather will improve for them by then.

When it is so cold, it will be nice to go some place warm. I have no idea I am going to Florida soon. I will be very nicely surprised by the time I realize what is going on. It is very kind of Emily and Peter to be willing to invite me and my mom to go to Disneyworld with them from December 25 to January 5.

Repeat

2008-12-11T20:42:00.000-08:00

I went over to visit my mom tonight. When I saw my new CD player, I remember my mom taught me the word "repeat" last night. I said "repeat" to her, so my mom set it up for the CD player to play and repeat the song "Silent Night".

I watched for the song to finish and I jumped to search for the song. My mom tried to stop me, but she was too late. It was, then, my mom's turn to watch for the song to finish. She sat right by my CD player and stopped me from touching the buttons. She told me "repeat". Sure enough, I didn't need to do anything and "Silent Night" came on again. I think I am beginning to understand the meaning of "repeat" now. I didn't touch my CD player for the rest of the evening.

On the Mend

2008-12-09T18:36:00.000-08:00

Yesterday morning, Grandma didn't even want her coffee. That is serious because she loves her coffee. She is feeling better today and she is eating reasonably well.

Grandma attended the Christmas celebration at church this morning. Many of her friends commented on how well she looks.

I am still fixated on "Silent Night" and sometimes I sing along. I have a new CD player for Christmas. I am keeping it at my mom's home so that I can play my CD's when I go visit. This CD player has a "Repeat" button. My mom is teaching me to set it to play my favorite song over and over again.

Radiation Treatments

2008-12-08T09:39:00.000-08:00

The WW Cross Cancer Institute called and Grandma has an appointment on December 17 for some preparation work. Her first radiation treatment will be on the following morning. My mom will get a printout of the treatment schedule on the 17th. The 20 treatments will be on weekdays only because the radiation department is closed for weekends and holidays. The treatment appointments are not going to be at the same time each day.

Grandma started to have some feeling of indigestion yesterday. It is getting worse and her surgical wound area is also bothering her today. She is now in bed getting some rest. Please pray that she will get better before the radiation treatments start.

Christmas Party

2008-12-07T22:45:00.000-08:00

Today is another long day for us - church in the morning, grocery shopping in the afternoon and a party in the evening.

My mom and I went to my uncle's Universal Dental Lab Christmas party. This is the first year we go without Emily. There were music, singing, dancing, and Santa Claus. I had a good time. My mom asked me several times if I were ready to go home. I responded with a "no" every time.

Silent Night

2008-12-07T15:12:00.000-08:00

I am currently fixated with the song "Silent Night". After the song finishes, I search for it to replay it.

Yesterday afternoon, a staff phoned in ill, so my mom had to take me home. I wanted to listen to my CD and refused to go with her. After she got me home, I rushed back to my room. We ran back and forth a few times and eventually my mom unplugged my CD player for me to take with me.

In the evening, we went to visit my mom's friend and had a turkey supper there. It was 11 pm. by the time we arrived home. I was tired, but I didn't want to go upstairs to sleep. My mom succeeded in persuading me to go to bed and I fell asleep fairly soon. My mom took advantage of the quite time to get some work done - work that she planned to do in the afternoon. I woke up before she could go to bed. I was up and down like a yo-yo from my bed, wanting to go downstairs to listen to "Silent Night". My mom kind of debated whether she should bring my CD upstairs to pacify me. She decided not to because she knew that I would be staying up searching for the song repeatedly. She kept hoping that I would give up and go back to sleep. I finally did, but that was more than 2 hours later.

I don't know how much sleep my mom had last night, probably not very much. When she woke up, it was already 8.35 am. She rushed and rushed to get me ready for church. I was such a challenge for my mom. At first, I refused to sleep. Then, I refused to get up.

My mom seldom has headaches, but she is having a tension headache right now.

Support Circles

2008-12-02T08:51:00.000-08:00

My mom has learned about the importance of building a support circle for me some time ago. She thinks about it a lot, but has not taken any action yet. Reaping the benefits of a few not so good nights, she finished reading a book called "We Come Bearing Gifts" by Janet Klees.

The book lists some barriers to creating support circles:

* reluctance to ask people to become involved - we feel like we are asking a lot of the time any ways and this is just one more time commitment,

* uncertainty with just exactly what we were asking people to do or to get involved in,

* discomfort with taking charge of the group itself, or uncertainty about who should or would do so,

* some previous uncomfortable or unpleasant experiences in a support group,

* not convinced of the value of support groups,

* having trouble keeping the circle energized,

* having trouble hearing everyone's voice - facilitating the conversation well,

* finding a common time that is convenient to all of the busy members,

* having a sufficiently important reason to call people together.

Some of the above are true for my mom, not all. But, the main challenge for my mom is that she is constantly overwhelmed with the affairs at hand that she does not have the energy and time to devote to starting a support circle. There is always one crisis after another that she needs to deal with.

I am lacking in meaningful relationships with others. This makes me very vulnerable. This book describes helping the individual to connect to the community by facilitating the development of friendships as one of the most important responsibilities of the paid support worker. Caregiving and companionship roles are necessary, but are of less importance. The book suggests that paid supporters should evaluate themselves from time to time by asking the following question:

If I had to leave the country next week and not be able to continue to support this person at all. WHAT WILL I HAVE LEFT BEHIND? Will I leave behind only a good memory in his mind of someone who appeared on the scene and was fun to be with for awhile . . . or will I manage to leave behind something more lasting that continues to make an impact on his life for a long time to come (like: connecting him with a new friend, finding and supporting him in a volunteer position where his gifts are welcomed, or figuring out a business where he is truly involved and the central figure?)

What really strikes a chord for my mom is:

As human beings, we get tired. Families, especially those whose sons or daughters with the greatest support requirements, have maintained many hours a week of physical care and support for their children, including often the general running of a second home. In addition, all families are the main coordinators for scheduling, arranging, filling in and guidance of both paid and informal support persons. This is not only physically and emotionally draining, but continually provides food for the ongoing worries about "what happens when I am no longer here?".

CT Scan of Liver

2008-11-27T18:07:00.000-08:00

Grandma went for a CT Scan of her liver. Since my mom was at a workshop, a friend came over to provide transportation. After the test, Grandma had to drink ten cups of fluids. When my mom arrived home, Grandma stated she drank so much that she was almost nauseated. She didn't really want any supper. My mom waited till later and fried her an egg. Grandma ate the egg, toast and soup.

Grandma is really not comfortable with bothering others. She told my mom how long the test took thinking that my mom will pay our friend by the hour. My mom told Grandma that our friend helped us out of love. She didn't do it for money.

Best Behavior

2008-11-27T17:42:00.000-08:00

My mom attended an all day workshop to learn about creating a good life for me and planning for my future. Since nobody was available to support me at home for the day, I got to tag along. I was in my best behavior the whole time and my mom is very proud of me. I got quite a few compliments from other participants.

My mom brought along a few flyers and catalogues, pen and paper, scissors, and my iPod for keeping me busy. We walked into the room and my attention was totally captured by the nicely decorated Christmas tree with flashing lights. I started off looking at the flyers and catalogues. This is a great time of the year for me. I enjoyed the pictures of colorful Christmas trees and decorations. Then I started drawing and scribbling. My mom whispered to me from time to time. She took turns with me drawing and coloring when I needed some attention. As my demand for attention increased, she pulled out my iPod. There is new music on my iPod! She must have figured out that I got tired of the music I had on it previously. I bounced with the rhythm and occasionally I hummed along. When I smiled and appeared to be enjoying the music, my mom got curious and took one of my earphones to listen in to find out what was amusing to me. We need to get something to allow both of us to listen to the music at the same time, so that she does not have to snatch my earphone.

Half way through the afternoon, the music went dead. I handed the iPod back to my mom. She figured the battery must be dead. I resumed my drawing and scribbling on the flyers. I was behaving so well that my mom didn't need to employ alternative strategies, such as scissors.

Radiation Therapy

2008-11-26T16:40:00.001-08:00

Grandma attended her pre-treatment appointment at the WW Cross Cancer Institute this morning. She has become the first person in our family to have "tattoos". They are permanent on her chest to mark the area for radiation.

There is a waiting period of about 3 weeks, so treatments won't start till around Christmas. My mom wants to be present for at least the first few treatments, so she told them about our Disneyworld trip from December 25 to January 5. If the treatment cannot start on December 22, it will be postponed to after we return to Edmonton.

Social Activities

2008-11-25T10:23:00.000-08:00

Since the drains were removed, Grandma feels more comfortable in resuming some of her usual social activities. She went to church on Sunday and she is attending the senior's fellowship this morning. She will go out for lunch with her friends before coming home. It is good for Grandma to get back to some kind of normalcy before she starts her radiation treatments.

Grandma has a pre-treatment appointment at the WW Cross Cancer Institute tomorrow morning. She will be measured and the radiation dosage will be calculated. We do not know when the radiation treatments will commence. We only know that it will be 20 treatments. The radiation department closes on weekends and holidays. Even if the treatments can start on December 1, her course of treatment will span over the Christmas holidays.

Emily and Peter are going to take me and my mom to Disneyworld leaving on December 25. That means we won't be home when Grandma gets her last few treatments. My mom will have to make arrangements for someone else to transport her to and from the cancer hospital.

Dance Dance Revolution

2008-11-22T22:40:00.000-08:00

It is so nice to have Emily and Peter home this week. They brought the Wii and a new game - Dance Dance Revolution (DDR). I love the game as it has music, flashing lights, and spinning images. I ask for it by saying, "tap, tap".

I have been reluctant to visit my mom for some time lately. Now that there is the DDR at mom's home, I keep coming to the door and knock on it.

Emily and Peter will be going back to Vancouver tomorrow. We are going to miss them a lot.

Tamoxifen

2008-11-20T04:52:00.000-08:00

Grandma starts taking Tamoxifen today. The pharmacist gave her a list of natural health products to avoid. Grandma does not go to health stores to buy supplements. However, the list contains foods that Grandma eats. My mom searched the net to make sure she knows all the listed items and was glad she did. She didn't know anise is the spice we sometimes use in our cooking. She knows the Chinese name but not its English name. Wild yam is on the list and it is a relief to find out that it is not the yam and sweet potato we eat as foods. Grandma loves sweet potatoes.

The following are foods that Grandma should avoid:

* alfalfa
* anise (八角)
* bitter melon (苦瓜)
* dong quai (當歸)
* all types of ginseng (參)
* flaxseed
* licorice
* milk thistle

Oncology Consultation

2008-11-19T22:02:00.000-08:00

Grandma saw the oncologist (a fancy name for cancer specialist) this morning at the WW Cross Cancer Institute. The doctor recommended a course of radiation (20 treatments) plus Tamoxifen for five years. Grandma's immediate response was she would not take the radiation treatments. My mom asked for more time to make a decision. The doctor was going to call us in a week and she explained that the sooner the radiation treatments start after surgery the better.

After my mom talked it over with Grandma, she indicated that she did not want to bother others in terms of transportation daily for four weeks. My mom told her that not wanting to inconvenient others is not a good enough reason to refuse radiation. Eventually Grandma agreed to the radiation treatments. She has an appointment to go back on November 26 to do the preparation work for radiation.