Josie's Rainbow

I admit that this isn't how I thought it would be. I had imagined trying to be strong for children crying for their mother. I imagined grief that would be debilitating for the whole family. But the reality is that they almost never cry for Shin, we are moving quite normally and I feel almost guilty that we are not struggling more.

When I posted after the first week that the kids were doing well, I really suspected that they were just protected by the initial wave of support form everyone and that things would get harder as we get back to a more normal routine. But now we have been in a routine for a few weeks and i feel more confident that the kids have accepted their loss and confident that things will be ok. I've thought a lot about what made the difference and a think there are several things that have been key. 1) We had our time to prepare, 2) the year-long period of deteriorating prognosis makes are current situation feel quite stable, 3) my mother being here to be a maternal figure for the kids, and 4) the fact that over the past year I had already taken over the daily routine with the kids.

I took a class on organizational behavior in grad school. One of the lessons they taught was about reward and incentive strategies. The evidence is that most companies get this all wrong. Most companies give one bonus at the end of the year and is only generally tied to performance. The better strategy is to take the year end bonus and to break it up and give it more often throughout the year and tie it to specific achievements. Personal satisfaction will be much higher and there will be much stronger incentive to meet performance objectives. On the other hand, bad news is best given all at once. Don't try to break the bad news gradually, bit by bit. Do it all and get it over with.

This framework helps clarify for me part of what I'm feeling. The past year has been the case where little by little we kept getting worse news. There were periods when we were quite hopeful but then hopes were dashed. And all along we knew what the end result would most likely be. Having time to prepare was helpful, but after a year of being on thin ice I think the family feels more steady now. One of the hard parts of cancer is that the steady worsening of news is exactly what my grad course said was the worst way to have to digest bad news. Things feel relatively calm now.

My mother, Carol, was working as a nurse in the US, but retired towards the end of the year to move out her semi-permanently in order to support the kids and me. Toby and Josie have always been very close to her. I think it is a tough transition for my mother, as she doesn't get to be the grandmother who can spoil the kids now. She has to play the role of the disciplinarian parent. She also leaves all her friends behind in the US. But from the kids perspective I think it makes all the difference. Especially for Josie. At night when the kids wake up, Toby always climbs into bed with me. Josie always goes to her nana. One of my mothers friends emailed me and asked why I don't talk more about the role she must had in helping Shin. It so happens that the week I have written most about (Shin's last week) was the week that Carol was on a previously scheduled trip with friends to Egypt. We didn't really think Shin would deteriorate so quickly at the end and I had also told my mother that when I would really need her was after Shin passed away. So I think it was important that she had her time with friends on a great trip even though she had strong misgivings about be away at that time.

I was looking at photos on the computer yesterday. Josie asked to see a picutre of her and Shin. I was able to find one of Shin and Toby first. Josie excitedly call for Toby to come over and look at the picture of Mommy and Toby. Then I found some of Shin with Josie. I have bitter sweet mixed feelings when I see photos of Shin. Toby saw the photos and smiled and said my mommy and gave me a hug. Josie's reaction was pure joy and excitement.

Josie's came up with the idea of making neclases with a photo of Shin. We talked about which photos we would use. Josie said she would use the one with Shin's hands over her heart. I said I would use the one where she is smiling and cuddling Josie. It was a good crafts idea and Josie was proud she came up with it herself.

Josie was over one her best friends' house. They were have a small cake to celebrate Josie's birthday the previous week. Josie said her mother wasn't at her party, "she died too late". Her friends mother said yes, but she is always with you also. They looked outside a little bit later and Josie was really excited to see a beautiful rainbow.

Toby is very clingy with me when he can be, but he is also happy at school and asks to go play at friends houses.

I think they are doing great and I'm increasingly confident that they are going to be just fine.

Tony

Shin's Unpublished Posts - How To Make Friends

Here is another one. Looks like she started it but then stopped. I still think its intersting to see her train of thought and her self reflection.

Tony



Shin's post 6 Dec 2008...

A blog reader asked me an odd but interesting question. He/she wanted to know how I make and keep friends. I'd never thought about that before.

When we were kids, we moved around and changed schools a lot. From second grade (age eight) to high school graduation (age seventeen), I went to seven different schools. My mother told me that each time we moved, I was the least bothered among my siblings about leaving my friends behind and also the first to make new friends when we got to the new place. I liked hearing that about myself. It tells me I can adapt easily to new situations. I suppose it also suggests I don't form meaningful, long-term relationships, but from all the old letters I've dug up from my past, that doesn't seem to be the case either.

The blogsphere's comments on Shin

The blogsphere is wide and diverse. I've received a lot of links to blogs that talked about Shin after her passing. I spent a fair bit of time pondering what it takes to affect so many people of different ages and backgrounds that you have never met. I found it interesting to go through some of the links and I thought I should start to compile some of the ones I've seen into a post.

When the Stars Go Blue
http://whenthestarsgo-blue.blogspot.com/2009/02/another-unit-through-and-done-with.html

Bored Gorgeous
http://boredgorgeous.blogspot.com/2009/02/rest-in-peace-shin.html

Little Gems Unravelled
http://littlegemsinc.blogspot.com/2009/01/goodbye-shin-na.html

Mamayati
http://mamayati.blogspot.com/2009/02/human-with-errs.html

Pheonix’s Wall
http://phoenixlmf.blogspot.com/2009/02/shin-na.html

Simple Complications
http://simplicateme.wordpress.com/2009/01/

Floriticasecret
http://floriticasecret.livejournal.com/3418.html

Back off Cancer
http://backoffcancer.blogspot.com/2009/02/brilliant-life.html

Weifs' whimsical writings
http://weifs.blogspot.com/2009/02/choked-with-emotions.html

Glimpses of my Life
http://musings-of-xian.blogspot.com/2009/02/shin-passed-away.html

Huggies Discussion board in India
https://www.huggies.co.in/Forum/ShowPost.aspx?PostID=1218

Amaryliss
http://amary-llis.blogspot.com/

Mademoiselle
http://liiiting.blogspot.com/2009/02/shins-cancer-blog-i-chanced-upon-this.html

One-2-Zero
http://one-two-zero.blogspot.com/2009/02/my-new-found-respect-shin.html

Taking up the Challenge
http://victorkoo.blogspot.com/2009/02/celebration-of-life-for-shin-na.html

Memories.Moments.Beliefs
http://xi-yuan.blogspot.com/2009/02/blog-to-share.html

Beneath Skin Deep
http://laylachow.wordpress.com/2009/02/01/she-shined-in-her-moment/

Kialee-ilu
http://kailee-ilu.blogspot.com/2009/01/shin-na-cancer-blogger-had-pass-away-in.html

Revived!Refreshed!
http://spiritual-serenity.blogspot.com/2009/01/this-is-post-at-some-sort-of-weird.html

Traces that you Carry
http://disasterriffic.wordpress.com/2009/01/28/endless-story-endless-love/

Glady’s
http://desultory-utterance.blogspot.com/2009/01/345-click-on-this-link-and-unravel-its.html

Lemony Snicket

Shin's favorite character in literature was Odysseus from Homer's "The Iliad", because he was brave, smart and resourceful. Maybe not on quite the same level, I had a strong childhood memory of Violet, Klaus, and Sunny from "A Series of Unfortunate Events" by Lemony Snicket (I even loved the author's pseudonym).

The back cover of the book and the first lines of the story start, "If you are the sort of person that likes happy endings then you should put this book down and buy some other book. Not only does this book not have a happy ending, it doesn't have a very happy beginning, and for that matter very few happy middles." Which of course made me want to ready the book immediately to find out what happens.

The story starts with Violet, Klaus and Sunny becoming orphans when their parents perish when their home burns down. The rest of the story is about them survinging bad guardians and the evil Count Olaf who is after the family fortune. The story appeals to me becuase the kids are so smart, brave and resourceful that they get themselves out of such bad perdicaments. And I like it becuase I always liked suspence better then action and the series is just a long exercise in suspense. I once read someone describe the difference between action and suspence. He said action is "there is a bomb under the table and it blows up", suspense is "there is a bomb under the table...".

So I intoduced these books to Josie, not quite sure how she would take to them. I liked the being able to introduce a story that might make her feel less alone with her loss (here I mean alone as in unusual), and like the theme of persevering through adversity. She loves them and we are now on book 4, "The Miserable Mill". I bought the actual book for the first book but we listened to the audiobooks for the others.

It's been a useful reference in talking to Josie about loss. When I spoke to Josie in Shin's final weeks I read her a list of some things children are confused about. I told the list said that some children wonder if they are considered orphans if they lose a parent. Josie said she knew she was not an orphan, "like Violet, Klaus and Sunny, they lost both their parents" Josie said. Also, in the story at one part it says that "unless you have lost someone very close to you, you can't imagine the sense of loss the children felt". Josie said "I have, I can".

This weekend was Josie's 6th birthday. We went ice skating with friends on her birthday and then over the weekend we went to the Forrest Adventure at Bedok Reservoir. The Forrest Adventure is a rope walkway through the trees. I'd heard about it but we had never gone before. I had assumed that parents would go with the kids, but the kids course is kids only. So Josie said she wanted to do it and as she started, I realized how difficult and scary this was going to be for her (something like 5 to 10 meters high) and thought I've probably made a mistake. But step by step she worked her way through the course. At one point, she wasn't really tall enough to reach the support rope, she felt stuck and scared and was whimpering and called to her grandmother for help. Nana said there isn't anything she can do from down on the ground. So Josie just worked it out on her own and got through the hard part.

I was filled with a strong emotion of pride in her. Smart, brave and resourceful. Shin would have loved to have seen this. Her little Odysseus, my little Violet.

Its Never Too Early To Prepare

Shin asked me many times in the months leading up to her passing to make sure people with a terminal illness know how important it is to be prepared.

Over two years ago one of Shin's friends sent me through a link to a website that talks about preparing children for losing a parent. http://www.winstonswish.org.uk/page.asp?section=0001000100100015&pagetitle=The+Mummy+Diaries.

Maybe six months prior to that, after a chemo visit one day, I asked Shin if we could go and buy the memory boxes we'd long been talking about preparing for Toby and Josie. She was reluctant. She said it was too early and that she had no plans of dying any time soon. She said she thought it would be like admitting that she was going to die when she had no intention of letting the disease win any battle.

I persisted, as I do, and Shin finally relented (which she rarely did) and we went out and bought the most beautiful memory boxes in the world. That started us on a roll of adding to them. Shin was already writing in journals, but that accelerated. We bought presents for future birthdays and found things that Shin had when she was younger that the kids would cherish. The boxes started filling up.

By the time we reached January 2009 and Shin had decided to stop her chemo, she started talking regularly about how unprepared she felt. She would often say "hell of a deadline Shelly, do you think they'll give me an extension? I have so much to do!"

It was then she realised that us buying those memory boxes all those months, even years ago, made a whole pile of sense. She was relieved that she had so much to leave for the kids, for Tony and me.

She wanted us all to know she realised that getting prepared is not about "giving up". Its not about admitting defeat. Its about making sure that while you are able, you do the very very best you can to make sure you give everything you can. To your kids, your family and your friends.

Even Shin writing her letter to us, her "final words" a year ago brought relief to her in the end because she was so happy we would be able to hear from her and that what she said was articulate and to the point.

Five days after I arrived back from Singapore and the memorial service there were two letters in the post addressed to my kids. She had written them on the 14th Jan 2009, just 13 days before she passed.

I feel we are all very lucky that Shin was prepared. We all have so much more of her to remember. Her essence of life and love for it is so much more present because of everything she has left behind.

Thank you Shin.

Michelle

Hospice vs Home-care

When Shin died, Michelle organized for a doctor that Assisi Hospice recommended to come and certify her death. Michelle said he seemed very confused about what was going on. He was mumbling that it very strange for someone to die at home and very strange for someone donate their body to research. In fact, in the days before Shin passed away, Michelle was checking on the various procedures and the police had told her that in the case of a home death that they would have to send to body to forensics for an autopsy - which turned out to be incorrect. We were surprised at how this seemed so unusual here in Singapore.

We were not sure how it would go in the end and Michelle and my mother had already visited several hospices to see which would be the nicest for Shin. Michelle already wrote about how she was really impressed with Assisi. Shin first thoughts were that she didn't want the kids to see her struggling in pain and dying. She expected that going to the hospice would be the right thing.

As it turned out I think we are all thankful that we were able to care for her at home. I don't think many people would be in position to do so, but as it turned out we were. Shin needed 24 hour around the clock care in her last couple of weeks. It just so happened that my employer was thoughtful enough to give me some time, Michelle had not started her program to get her degree for teaching maths yet and Alicia was able to take a couple of weeks off her job. Together, I felt Shin got the most loving care she could have possibly gotten.

Its wasn't easy. It was flat out tiring and we were all sleep deprived. Shin had good moments where she felt good and cheerful. But a lot of the time she was uncomfortable and frustrated that she couldn't communicate well. Due to her weak breathing, she would usually write what she needed to say. I think anyone who is contemplating home care, should anticipate a patient who is increasingly uncomfortable, frustrated and demanding a lot of the time. There were nights when Shin was finally sleeping soundly that Michelle, Alicia and I all had that feeling of relief that we experienced as parents when our newborns were finally asleep.

Being able to be close to family was also important. I have already written about the night when Shin was sleeping peacefully that the children were able to say goodbye to her. Also, Shin's parents, brother and sister came from Korea and the US to see Shin while she was still alert. When she had periods of strength we were all right there to take advantage of those times and in them I think she had some nice moments with her family. I'm not sure you we would be able to have such nice moments if she was in a hospice.

The Assisi doctors and nurses made frequent visits as we needed them. Every few days at first, and up to every day in the last week. We were able to get all the prescriptions for the drugs we needed. I would make frequent trips to the hospital pharmacy to get bottle after bottle of morphine (which is surprisingly inexpensive) and fentynal patches (which are expensive). The hospital pharmacists would stare at me wide-eyed as I would ask for all this morphine. One day Dennis, Alicia's husband went to pick up some more morphine for me. He was up all night working on the memorial slideshow, hadn't shaved and looked rather like a drug addict. He said the pharmacy gave him the third degree, but eventually gave him the drugs.

I don't know what we would have done if Shin had lasted longer. I've heard of some cases where a patient can linger for weeks. At some point Alicia and I would have had to go back to work, Michelle might have had to get back to Australia. We never really ruled out having to go to the hospice, but I think we all felt more comfortable with the way it worked out. I imagine that not many families would have the luxury of time to provide around the clock care for loved one and the hospice is a nice and critical option. But I wouldn't rule out home care even if it is rarely done here in Singapore. I don't think it is that rare in countries like the US and Australia. And I hear of many cases where families rush a dying cancer patient to the hospital to die. I don't really see what the point. There is nothing the hospital can really do, and the racing to and checking into a hospital is not the way for a patient to spend their last days.

And of course it helps that Shin was just one of those people that it was worth it to get every last moment you can to be with her.

Tony

Shin's Unpublished Posts - Cancer Friend Humor

Here is another unpublished post. I miss her laugh. I think she didn't publish this link because she thought it might offend her friends. But she thought it was very funny.

Tony


Shin's post (29 Oct 2008).....

Here's an article entitled, "Man With Friend With Cancer 'Going Through A Rough Time'", from The Onion, a satirical news Web site.