The Holiday Season

The holiday season is upon us; people are inviting us to parties and wishing us the best. Indira and I are trying to do a little decorating of the house - not because we're celebrating but because we both think we should. Last year Melodina was in the ICU over Christmas and New Years and on to her death. Both Indira and I lived at the hospital, one sleeping in a chair by her bed while the other curled up with other ICU parents on the benches in the waiting room. This is how we remember the holidays. I don't remember which day was Christmas or New Years, I only remember the minutes, hours and days as we sat our watch, hoping Melodina would recouver, knowing she might die.


Indira tried to go for councelling a couple of months after Melodina died. It was difficult to access at first. The Hospital for Sick Children had given us a package that included grief councelling information. Perfect if you live in Toronto. To us it seemed just cold and unfeeling. They gave us information that was useless to us. It was done with the best intentions of beaurocrats trying to help. Nothing personal. Nothing caring. Just send out the package without thought or feelings and congratulate yourself for doing your job. It hurt.


Eventually friends pointed Indira to a service in Orangeville, only 25 minutes away. She called. A very nice councellor came to the house. It was helping. At least Indira said it was helping and that is the best way to know. Right from the beginning she was told that it was expected that she would got to Orangeville for group councelling sessions soon. After five sessions at home, two a week, the councellor told Indira she couldn't come to the house any more. She couldn't provide individual councelling any more. Indira had to go to the group sessions or not recieve help.


The group sessions proved difficult right from the start. The problem is that when your child dies - even if you have other wonderful children and grandchildren as we do - even if you hold life as a sacred blessing, as we do - you still wonder why you are alive. You don't see any purpose to live and you sometimes wish you were dead. Every parent we know who has lost a child would have died so our children could live, if that were possible.

The group Indira went to was populated, understandably, by suicidal suicidal women. Some had attempted to take their own lives several times. The discussion wasn't around the children and how wonderful they were - it was around possible suicide. Indira was scared. These women were talking about things that were to close to her own emotions; they were talking about killing themselves and it terrified Indira. She came home depressed and angrier than she had been for some time. Indira couldn't talk to me about it. I felt helpless to help with a situation I did not understand. That councelling session, which I had not attended, was hard on both of us. That was the end of councelling.


Back to the holidays. Each day is a reminder that the one who loved giving the most, the one who loved family the most and the one who got the most joy out of others' happiness is not here this year. There is a large gap in what we think of as the holidays. We are trying. We have others in the family who are important. It just can never be the same when your youngest child suffered and died. We are trying to keep the spiritual side of the holidays. The idea of being grateful. We will get through it for the grandchildren but quite frankly I would much rather spent both Christmas and New Years alone meditating and reflecting. So be it.

Please don't tell us you understand because your grandmother had cancer and died. This is totally different. Please don't tell me we have too much attachment. The loss of a child is like the loss of an arm. You may learn to live without it but it is still gone. Please done tell us that time will heal. Like the amputated arm time does not heal. Some things are just like that. Whatever the cause, there is a loss that cannot be replaced and most cannot understand. Let us do the best we can. Support us with your love, not your with understanding, which is inadiquate. Thank you.

Am I bitter, sometimes, but not often. The reality is I am trying to live in a world that is completely new to me, a world where the light is dim and the rewards are few. Still I am grateful for my life and I look to understand life's lessons as they come to whatever extent I can. I sincerely wish everyone a wonderful holiday season. Mostly I wish that each of you can face the pain and suffering that you have and still smile. I know we all suffer. I hope that you can see the beauty of nature and our fellow human beings and enjoy the spirit of love while appreciating the blessings, past and present, in your lives. Whatever your religion, whatever your beliefs, I wish you peace and good will.

Another Honour for Melodina

The people of RS Ashram in Jamshedpur India have honoured the life and spirit of Melodina by planting a Peace Garden and erecting a Memorial in Melodina's Name.

RS Ashram is was founded by Sree Sree Mentu Maharaj and the land was donated by the Adivasi community (Indian aboriginal, often poor people). The ashram is considered part of the Adivasi community's Holy Land.

We consider it a great honour to have the contribution Melodina made to helping people achieve their potential and encouraging those she met around the world to live in peace with themselves and each other recognised by these kind and humble people. I feel that Melodina's life was so incredible that it should be an inspiration to those of us left in the world now and into the future. The Peace Garden in India should give many a place to reflect on the things that are important for generations to come.

The centre of the Peace Garden is a banyan tree. The banyan tree is famous around the world as the tree that Buddha was meditating under when he received his enlightenment. The tree planted at RS Ashram in Melodina's name is truly a small baby. In time it should grow into a very large and strong tree spreading much further than the biggest maple. Banyon trees provide shade and protection for humans, animals and birds alike, particularly during the hot hot months of the Indian summer. As such is is very appropriate to have such a tree represent the inspiration, solace and wisdom with which Melodina shaded those she met during her short life. Melodina believed that Buddha's teachings of kindness and compassion were important lessons for all of us to imbibe in our own lives.

H1N1

In order to help protect hospitalized children from coming in contact with the H1N1 virus the Sick Kids Foundation has postponed their awards ceremony until the spring. This is, in my opinion, a wise move. Protect the children!

We were emotionally prepared to receive the award for Melodina at the hospital where she died. It was a bit of a let down but we are looking forward to participating next spring and we thank the Foundation for their ongoing work on behalf of sick children. It has a profound and lasting effect on children here and around the world.

Spirit Award

Indira and I were very pleased to learn recently that the Sick Kids Foundation will be honoring Melodina with an award this fall. It will be in recognition for the effort she put into raising money and awareness for the Foundation during her illness. It is always humbling to be the parent of a child who accomplishes so much in so little time the way Mel did. We are grateful that the Foundation recognises what an incredible human being she was. The following is taken from a letter sent to us by Mr. Ted Garrard, the President and CEO of the Sick Kids Foundation.


"I am pleased to write to you today to inform you that Melodina has been selected to receive the Spirit Award at the 2009 Kids Believe in Sick Kids Awards. Sick Kids Foundation is very proud of all that Melodina did to raise money for Sick Kids during her battle with cancer and feel that she was an inspiration to others during her life. For this we would like to recognize her kindness, strength to endure anything and generosity at this years ceremony...


"We are very proud of the difference the youth that have fundraised for Sick Kids are making in the lives of the children who need our help and I can't wait to celebrate Melodina's inspiring generosity."


As readers of this Blog will certainly know the Sick Kids Foundation is at the centre of our fundraising efforts as a family. This is largely because it meant so much to Melodina but also because the Foundation has demonstrated clearly it's dedication to easing the suffering of sick children however they can. We have met many wonderful dedicated people at and through the Foundation. If any readers would like to donate or donate again to the Foundation in Melodina's name I remind you that you can contact them at the following link: http://www.melodinatribute.org/


Indira and I are at Harmony's house right now baby sitting our grandchildren so that Harmony and Mike can enjoy the wedding reception of a young woman who used to live across the street from us. While thoughts of Melodina are always with us, it is a great blessing to have beautiful grandchildren - Hannah and Carter. They are so full of love and life!!! Just a thought- if you ever feel down and depressed about the troubles that life had given you just observe the simple joy of children. They seem to get such amazing wonder in a very simple and naturally mystic way. There is a lesson there for each of us, I think.

Sears National Kids Cancer Ride

Here I am with Kurt Harnett in front of The Hospital for Sick Children, Toronto, June 20, 2009.

Wonderful everyone!!! Three times I raised my goal and each time people responded and each time more money came and I, once again, reached my goal. Thank you so very much.

I rode 82 kilometers yesterday in the Sears National Kids Cancer Ride. I haven't ridden that distance in years and this was only my fifth time on a bike this year. On top of that it was raining for the first two thirds of the ride. It was an adventure for me but I kept thinking that if Melodina had made that commitment she would have used her will power to keep up. I'd drop back a bit and then push and catch up. In the end I rode into sick kids Hospital beside Kurt Harnett, Canadian cycling World Champion, four times Olympian and three times Olympic medalist.

It was a thrill to meet Kurt. I met him first at Sherway Gardens in Mississauga when we were both called up to the podium to speak. After the speeches I got hugs from many people, some who had lost their own children to cancer. It was an emotional time.

Kurt Harnett and I began and finished the final 20 kilometers together. In between when I was struggling Heather Jagar, one of the National Riders from Alberta rode with me. When I told her I was fine and she could ride ahead Heather said she enjoyed riding slowly and her legs could use a rest. My one fall was when I was riding beside her. (a few people fell in the rain yesterday but nobody was hurt) She didn't need to stay with those of us who were slower but she did. Thanks Heather. Eventually I got my second legs and finished comfortably.

Jesse Porter, Melodina's boyfriend from British Columbia, was there. Jesse is and incredible young man who supported Melodina in wonderful ways while she was alive and supported our family after she passed away. We like to think we are Jesse's Ontario family. Jesse is a very good photographer and he wanted to volunteer on the ride. Unfortunately the ride only takes along people who are twenty five or older because their insurance says these are the only people who are insured to drive. Jesse persisted. He told Melodina's story and he kept after them. The organisers called him in Invermere BC the afternoon before the Sears National Kids Cancer Ride began and said if he was in Vancouver by nine in the Morning he was going along. Jessie was there and yesterday the organisers had nothing but praise for this teenager who was not only taking hundred of photos a day but always looking for was to help out. They were very pleased that he came along. I felt so proud, like he was my own son. Linda, his mother must be very proud as well.

Harmony is an official "Ambassador" for the Sears National Kids Cancer Ride. Her job yesterday was to meet and greret people arriving at the community event on the front lawn of Sick Kids. Its great to hav her involved.

At Sick Kids I was met by Indira, Harmony, Mike, Hannah and Carter along with my sister Ellen, Uncle Bill and Aunt Lorna. It was good to see them. There were lots of people there. Some were Cancer Kids from the Hospital. In addition to talking about Melodina at Sherway Gardens, I talked about Cancer Kids and, how, as a group, they are the most incredible kids I have met anywhere in the world.


As if to emphasize the point I ran into the father who has a two and a half year old daughter with cancer whotold me what a twelve year old cancer boy told him and him and his wife. He was in the hall of a ward at Sick Kids. I know this boy and I know that he has suffered way more than most. He was told many months ago that he was going to die but so far he is alive. I saw him last week and he was smiling and positive in his attitude about his future. This boy looked at the parents of the little girl and said " Little children shouldn't have to suffer the way your daughter suffers. If I could I would die so that she could live and be healthy." The father had tears in his eyes as he told me this story and I had tears in my eyes as I listened. Cancer Kids are wonderful and they are worth saving.

If anyone would still like to donate to the Sears National Kids Cancer Ride, you can still sponsor me at: https://secure.e2rm.com/registrant/LoginRegister.aspx?EventID=25787&LangPref=en-CA and click on James Herman and the click Donate Now. Thank you all for your interest. You're wonderful and I love you.

Sick Kids Hospital

Indira and I had spent a lot of time (virtually all of our time) trying to be with and help Melodina for the last years of her life. It was hard, it was sad, it was inspirational in many ways. Melodina was amazing so were the other cancer kids. They are some of the most amazing people I have ever met. I would not give up a minute of it. Indira and I were talking about the cancer kids with a doctor when we visited the Hospital for Sick Children today. We all agreed that, as a group, they are, in many inspirational ways, the most positively awesome children we have ever encountered anywhere.

It was only the second time we had been back to the hospital since Melodina passed away. We left some information that we hope will help the hospital to improve its service to the children and the families it serves. It is a wonderful thing that Sick Kids is constantly trying to improve the way they do things. They're not perfect but they do try to always improve and that is the sign of a great institution.

After Melodina died there was a period when I was quite lost regarding purpose in my life. It wasn't that I had a loss of faith; I just couldn't function well and it was hard to understand what to do now. I still have days like that but generally three projects have helped me past feelings of hopelessness. I have decided that Melodina's story is important, ongoing and inspirational. Therefore I continue to update this Blog. Our family has decided to try to use our experience to help the Hospital to improve the way they do things with a particular focus on the kids and their families. Third, as a family we are involved in fundraising for research into childhood illness, particularly cancer.

So we went to the hospital today knowing that it would be difficult but feeling that we should. I delivered the information I had brought with me to the mail room and then we went looking to people we know. We met and talked happily with some of the hospital staff. It was good to see people who had cared deeply about Melodina. We exchanged some e-mails and phone numbers. We learned that some children we knew were in the hospital - some very sick - others just there for routine follow up. We first went to the oncology clinic and saw a young boy who is doing very well. The idea that Melodina might have been attending the clinic was, however, very hard. We saw great nurses and kind doctors and we went to one of the wards that Melodina had spent a lot of time on and talked to both children and parents, some of whom needed encouragement and strength. Its a hard life for the whole family on a childhood cancer ward.

All in all it was a difficult but good day. We spent time with some beautiful people and we faced some of our own difficulties. People who suffer and those who serve the ones who suffer are a very meaningful part of this life.

Ambassador

The Sears National Kids Cancer Ride has asked if Indira and I would honor Melodina by allowing them to use her and her story as an "Ambassador". We gladly agreed. I have filled out the ambassador form as if I was Melodina speaking. The following are two questions and the answers as I believe Melodina would have answered them.

Ques: "Tell us what Coast to Coast Against Cancer means to me."

Ans: "I met several National Riders last year as my father rode with them into Sick Kids. I was in my wheelchair and my mother wheeled me over to the community event. I had to wear a mask to protect myself and I was too weak to walk.

"At the community event I met the president of Sears Canada. He asked me to ride with him this year. My plan was to be strong enough to ride in a regional ride with him and my father. Because of this the Sears National Kids Cancer Ride helped me focus my goals and helped give me courage to find my strength during the last months of my life.

"I also dedicated myself to raising funds and encouraging others to raise funds for childhood cancer research. My hope is that events like the Sears National Kids Cancer Ride will lead to a future where no children have to suffer what I suffered and what I saw others go through."

Ques: "Tell us what our message is to our riders, volunteers, sponsors and all Canadians."

Ans: "My watchwords are "strength" and "courage". We will win this battle as long as we continue to fight it together. The children need you. They are inspired and gain strength and courage from your efforts. Thank you."

Mel's sister Harmony has also become and Ambassador for the ride. She has agreed to do anything she can that's "not on a bicycle". I understand Harmony will be greeting and talking to people at a community event in Toronto on June 20th. Indira will be there as will my Uncle Bill. If you like we would like you to come to. I will give you more details (time and place) when I get them.

Our whole family is working to relieve the suffering of children with cancer. I am truly blessed to have such an incredible group of people around me.