2 August Last Year 2008

I sat up till 3:00 am with Harry on the couch - he snoozed and vomited alternatively.

Concerned about dehydration.

This am - 9:00 am went to Dr. Sims for Harry's second IV Vitamin C treatment. He also gave Harry 200 cc of fluid.

Ran around to pick Janine up from airport. We were late due to extra IV fluids @ Dr. Sims. Missed her at the airport - she was waiting at our house when we returned.

Cathy & Dr. Isreals came by - gave IV hook up & portable IV pump, but we're concerned with the amount of sugar in the IV water /solution.

All day Harry's tummy was better, taking some food and keeping down meds.

Lydia's most beautiful thing was helping Janine make dinner - grating cheese for chicken wraps. Mine was having Janine arrive - *so* wonderful to have her support.

Also Jim came with Erika to offer energy from their Ayahuasca Ceremony, done the previous night (Friday) for Harry. Very moving "sublato" (sp?) ceremony or "breathing of energy" via breathe and tobacco. Jim sang sacred songs for us and blessed us, all four of us, with the breathing of energy.

Felt amazingly revived and strong after.

Claude also came to give Reiki and body talk to Harry.

We took him off the IV, concerned with bloating. Now very concerned that black tarry toxins are clogging bowel, as no BM since Friday at 11 pm-12 am. I think he might be massively constipated - how to help him move this out?

Henry's most beautiful thing was the Sublato ceremony with Jim - very moving and so much energy.

But another very sleepless night (saturday), Harry back to vomiting off and on all night.

2 August 2009

Oh to have known that this was our last full day with our Prince Harry in this mortal world. Would I have savoured each moment a little bit more?

Henry and I were feeling pretty exhausted by this point. We had not had a solid night sleep in probably two weeks. Taking care of Harry 24/7 was starting to take its tole on us. It wasn't just the care for Harry. We did that gladly.

I remember when Cathy and Dr. Isreals were leaving, just before they went out the front door, Cathy turned back and asked, "Are you getting much sleep?"

I replied with a shrug, "No, but Harry's hasn't ever slept through the night in all of his 16 months, so I haven't really slept in 16 months, I'm used to it. There will be time to sleep when Harry is healed."

"Let us know, when it is getting to be too much. If you need help." Cathy insisted. "Call me anytime, if you need anything."

"We're fine. We'll manage just fine." I just couldn't imagine any kind of help, didn't want any strangers in our house right now.

It wasn't just the taking care of Harry that was so stressful. It was trying to figure out the best route to healing him that was taking its toll. When allopathic medicine runs out of treatment options, that is just it. They say, sorry very much, there is nothing more we can do. They offer palliative care and medicine to keep your baby *comfortable* in his last days.

We refused to simply give up on Harry because allopathic medicine had run out of their one option and given up. We have read too widely, experienced too many other cultures and ways of being, to simply accept the western, rational-scientific worldview as the final arbiter on life.

As wonderful as our medical system is (and I will defend the Canadian medical system against all critics), it does not allow very much at all for other modes of healing. Well, there is some latitude for alternative healing, but only as a secondary complement to allopathic medicine, for example, Reiki was offered at the hospital, but not as a genuine healing modality in and of its own right.

So we were basically on our own, trying to design a comprehensive alternative treatment healing regime for Harry.

When Harry was first diagnosed, I had picked up a book call, "The Field" by Lynn Mctaggart. This book explains the latest quantum physics behind the idea of what has been alternatively called the Zero Point Field, the Quantum field, the Divine Matrix or just the Field. It is far too complex to explain in this blog post. But, very simply, the idea is that we are immersed in a unifying energy field and we ourselves are fields of energy. Our energy fields are constantly 'downloading' information from the Universal Energy Field (UEF). This field contains all knowledge and memory, past, present and future. This is not science fiction. This is leading-edge quantum physics. But these ideas also unify the ideas of the ancient mystics and saint and modern quantum physics. In leading-edge quantum physics western science and spirituality meet and converge.

Our energy fields have been called chi, life force, prana.

Reiki, energy field work, acupuncture, qi-gong all work with our energy/ energy fields.

In simple terms, (though it is not nearly so simple and I am making a gross over-generalization here) disease is manifest as blockages in our energy fields and different types of alternative healing modalities work on breaking down and moving out those energy blockages.

So were were working on developing a mixture of intense oral vitamin treatment, dietary treatment, and naturopathic treatment (working with a naturopathic doctor here in Winnipeg and a second one in New Mexico). A neighbour is a Reiki master and he was giving Reiki and body talk to Harry, as was another friend. Henry took Level I and Level II Reiki to give it himself to Harry. I took Level I and II in a type of energy field work, called Way of the Heart. And of course, hundreds if not thousands of people were praying for Harry all over the world.

But trying to do all of this learning and research while also taking care of a critically ill child, and trying to somehow keep life normal for his 4 year old sister was very, very, very hard.

Janine has asked me since, "Did I know that Harry was dying?"

Poor Janine, in the week between when we made our plans for her to come from Toronto to help us out and her actual arrival, Harry got so sick so quickly. By the time she arrived on 2 August. He was so thin and frail and sick and weak. I am sure it was a huge shock to her to see him. We just saw our same Harry. Janine has commented to me that she could not believe the level of intensity and stress in our house when she arrived. We had no idea - it was just our life.

Did we know he was dying. No. Not really. You see, when you are pushed to a place at the very edge of life and death, living on that knife-edge, you only have one option. You have to choose. Hope or fear. There is not room enough on that thin edge for both. When you are looking into the abyss, you have to make a choice and the choice becomes very, very, crystal clear. We chose hope. We could not live with ourselves had we chosen any other way. We very intentionally chose to have hope and believe that Harry was healed.

I remember back in the winter, Russell, our minister at St. Mary's Road United Church, preached a sermon about one of the New Testament healing stories and the faith of a woman who had been experiencing hemorrhaging / bleeding daily for over 12 years. Through all of the 12 years of pain and suffering she never wavered in her hope and faith that God would heal her.
Upon seeing Jesus, I think she was one of the people who just touched his robe and either Jesus or one of the disciples asked, "Who touched my robe?" Seeing the woman Jesus said, in his customary fashion, "Your faith has healed you".

Russell talked about how, in our day and age, we would think this woman foolish for having such deep faith and hope in healing, through 12 long years of suffering. We would think it crazy that you would hold onto faith and hope in the face of such sickness. We would think it impossible for someone to be healed in an instant.

I remember thinking to myself during that sermon, "But you haven't been pushed to the edge, to that place where you have to make a choice. Where it is not theoretical. Where you have to choose between faith and hope or fear and darkness. When you are pushed to the edge, you choose hope and faith over falling into the abyss."

And so that is where we were. Sitting on the knife edge, precariously balanced on hope and faith.

But I have to admit, in Harry's last few days, doubts started creeping in. I think it was my sub-consciousness trying to prepare me for what it knew was to come.

My sister had sent a lovely new outfit for Harry for his birthday, but it had only arrived just around Henry's birthday, July 22. The last video we have of Harry is of him opening this gift. At the end of the video, I tried to hold the outfit up to Harry, but he fussed and pushed it away. Then he pointed to his toy school bus and wanted to hold and play with that instead. The outfit sat on our dining room table, I hadn't found time to take it upstairs yet. I remember walking past it once and the thought flashed through my mind, "That is the outfit I will put Harry in after he has died, because it will be new".

Immediately, I was angry with myself for the negative thought and I quickly "cancelled" it.

Thursday or Friday, I had a dream, or a waking dream, either while sitting outside with Harry or walking with him in my arms down the street, "This is getting too hard for all of us. It would be easier if Harry just dies. We'll be okay, Henry, Lydia and I. Lydia especially is so happy, she can cope. We can do it. It will be hard at first, but we can manage." I got so angry with myself for that thought. "What the fuck are you thinking, Cynthia? You know exactly how hard that would be. You know that it would not be easier than this. You do not want that". Again I quickly banished the thought.

But except for those few stray thoughts in Harry's final days, I really, honestly, right up till he passed over, believed he was healed.

Both Henry and I had this intense feeling that we just had to get through the weekend, and come Monday he would turn a corner and be healed.

I knew the vile black sticky stuff he was vomiting up had to all come out. It was the toxins, what was making him sick. We had to get it out. But I didn't know how. But I knew if we could just get it out he'd be okay. Or that was the very, very strong feeling that I had. Henry too, felt with certainty, that we just had to get through the weekend and Monday would be a turning point for Harry. The smell. It had a very distinctive smell. A chemical smell. Like all of the residual chemotherapy chemicals and the toxins were coming out. I will never, ever, forget that smell.

I wish I had known that that last night, Saturday August 2 2008, was the last night we would sleep with our wee Harry. I can still feel him between us, rolling between us, cuddling each of us. I remember at one point in the night, Harry was lying sideways across my tummy and chest. I stroked his head and whispered to him. "Daddy needs to feel you cuddle with him, Harry, go cuddle with Daddy." And he did.

I remember that last morning, the four of us in our bed. We can hear when Lydia wakes up and thumps out of her bed, hear her walking across her bedroom floor, hear her open her bedroom door. Harry always sat up and watched our door, with a big grin of anticipation on his face, eager to see his big sister. Lydia came bounding into our room, always the cheery morning person, "Good morning Hares-y-bares-y-boinga-boy". Henry got Lydia her morning bottle (yes, okay she still had a bottle at 4, we wanted to wean her off of it, but while her little brother was going through chemotherapy was not deemed a good time in our opinion!!!). Harry nursed and she drank her milk. Then I remember, so clearly, Harry sitting up and signing for water to drink. He drank from my cup at my bedside.

Harry still nursed, but to be gentle on me, he had started trying to wean himself his last two weeks. I know he really wanted to nurse, but he was holding back, to try to be gentle on me. In response, I started pumping to try to increase my milk supply and taking "mother's lactaflow" and other herbals to increase my milk supply. I was not going to deny him essential nutrients from my milk. I think he knew he was going, or that he had to go soon. So he wanted to be gentle on me. But I would have none of it. But in his last weeks he nursed less and less and as soon as he finished nursing, he would reach for his Dad. I was okay with that. I knew that Harry knew (and Harry knew that I understood) that he and Henry needed as much time together as possible. I was okay. It was okay with me, for him to reach for his Dad more.

And so in some ways. Our last full day with Harry was rather unremarkable. Except for of course the whole remarkable situation we found ourselves experiencing. It was just another day. Just another joyful, happy, beautiful, hopeful day with our Prince Harry.

2 August 2009 - We are Rainbow People

Harry's sign to us is a rainbow. I will tell you more about this in the coming days.

A few days ago, I asked Harry if he could send us some rainbows, just to once again let us know he is okay and always with us.

Saturday, we decided that we definitely wanted to go to church on Sunday. It was the first Sunday our church would be gathering after our month's holiday in July. I phone our florist to order flowers to have at church in memory of Harry. We choose a lovely summer bouquet called "Rainbow Bouquet". I phoned Russell and left a message, asking if he would be able to receive the flowers Sunday morning and if he could say some words of remembrance for Harry.

Oh boy, did he ever.

Russell did not know about our connection to Harry and rainbows. Yet, when we walked into the service, the 'theme photo' Russell had chosen to project above the alter for the service was a beautiful, bucolic country scene, a barn in a grove of trees, with a perfect double rainbow painting the sky above, and dominating the photo. Both Henry and I were stopped in our tracks when we saw the photo.

But more than the photo. Russell preached about a woman who once was very involved at one of his past churches. Her husband was not only an atheist, but rather rude and aggressive about it. He would criticize her every time she left for church. One of his favourite taunts was, "Oh are you going to visit your Rainbow People". He called us, us 'church folk' Rainbow People, because we are so darn optimistic, Utopian and so full of faith and hope.

Russell talked about how he wanted to disagree with this man, was ready to bring out his full arsenal of arguments against him, but was stumped. He had to agree. We are a Rainbow People. We are full of foolish, lavish, extravagant hope, faith, and belief that the world can be a better place, a place of love, of peace, of freedom, of harmony. Yes, indeed we are a Rainbow People.

And Russell's closing words were especially poignant, "Trust in Rainbows ... we are not alone".

Indeed, we are Rainbow People, we trust in Rainbows, and we are never, never, ever, alone.

Love,
Cynthia