Universal Studio

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

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

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

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

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

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

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

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

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

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

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

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

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?".