Hope

I recently wrote an article for an online magazine. It was in response to a synchroblog, it's like an open stage for writers on a specific theme. The call went out at the turn of the year, and a very stressful chapter in my life–but then I thought about it.

To see what I thought click, and while you are there read the others too.

Why the Wait?

So why the wait ?

At the moment of his birth, we knew

that Marky was going to be short turned.

He would take a different route,

He’d leave us behind.

We never knew when.

So why the wait?

Even now, in the moment,

It seems like he’ll just stay

For a little while longer.

Marky lays in his hospital bed,

tripping on morphine, staring at the ceiling.

So why the wait?

It seems like he’s waiting for Jesus

to come to the door and call his name.

We pray.

We are many,

and the fellowship is intense.

So why the wait?

So Jesus knows, right?

There’s a perfect plan

A perfect time

In the suffering we are made whole,

He is made whole.

So why the wait?

Spitting Nails

Both Mom and Dad are so mad we could just spit nails.

It was another day of e-mails, tweets, phone calls, meetings and hand shakes. What was accomplished? Not much. I did go to meet the good people at The Phillip Azziz Centre. They are the org that is building Toronto's first youth hospice, Emily's House. They call it Toronto's, but it's one of only five in the entire country. The only other one in Ontario is in Ottawa, so I call it Southern Ontario's first youth hospice. It will have 6 beds. It's designed for 10, but the province will only fund 6. I could go on and on about what's not right, but I'm sure glad there are good people working very hard to make that happen.

Later I stopped by Peter Tabuns constituency office. I really just wanted to say thanks for helping bring attention to our situation. I credit his efforts as much as the story in the Star. It was a combined effort. I thanked him and then we got to talking about the bigger picture. I reminded him that this is not just about Mark, it's about all the complex care kids who disappear between the definitions and boundaries. Emily, after whom the house is named has crossed the age boundary and is therefore no longer eligible to live in the house she inspired. Her family faces the very same challenges we do, but they are not getting any of the help we are now seeing.

I returned home to join a meeting with Linda and the nursing agency. We were working out the details of exactly what the 24/7 plan would look like. In the end we agreed on a 20/7 plan simply because the logistics were a better fit for us.

Then we got a call telling us that the Service Resolution meeting that we were going to attend on Wednesday had been cancelled. Actually, we had been dropped from the agenda. We were told that CCAC was having a second look at the situation to see if they could do something more. Later we heard that there was a meeting going on, I suppose that's a good thing.

So what made us so nail spitting mad, it's the 18 years of age line drawn in the sand. All of this time, since the beginning of December, we have been waiting, while the powers that be sort out which side of the line the funding comes from. That may be an over simplification of the bureaucratic complexities that were unfolding, but there is no doubt about the significance of the number 18. The entire funding model is based on whether Mark is a youth or an adult. For special needs kids, they go from pediatric care to geriatric care. Ask the Doctors if this make sense and they will tell you it make no sense. In fact the criteria for adult hospice care is very different than it is for pediatric hospice care. The one very important difference is that in an adult hospice, geared very much to the late stages of life, a feeding pump is considered a life support device and is at cross purposes. So a child with a food pump would not be accepted into anything other than a seniors home. In most cases parents keep these children at home, at great expense (unmeasured by the budget managers) to themselves which ultimately impacts their ability to deliver care. The 18 yr line in the sand does not serve the needs of the patient, it's only function is to protect the funding silo.

I went from being sad and weary, to being tired yet determined. I won't be shutting up anytime soon. I hope the media really gets hold of this story and gives it some serious investigation. My goal is to take this subject trending. If you want to help, than tweet and retweet #youthhospice and FB share and e-mail, and snail mail, and phone and...

Resilience or Tensile Strength

So much has been made of our situation and how deeply sad it is, and it is, and yet there is more. There are moments when I wonder where the breaking point is, mine or Linda's or even Mark's. Someone actually asked us recently, "How close are you to breaking?" How do really answer that question? Having thought about it I realized that I might be closer than I care to admit but somehow I still find some strength somewhere.

In my boredom, yes this is boring, I was surfing u-tube and I found Shinzen Young, a buddhist teacher who said, "Suffering equals pain times resistance." I've been thinking about that ever since. True Mark's impending death is a painful reality, but that is only made worse by my resistance to it.

I think that what Shinzen calls mindful meditation, I call prayer. What he calls Buddha, I call Jesus. The point is, it is this kind of Spirit centred focus that gives my whole family the tensile strength to carry on. Each of us exercises that process in a slightly different way, but the resilience, perhaps demonstrated best by Marky, is seen in each of us.

For the many people who are praying for us, I hope they pray in a way that reveals what is, rather than resists what is. We can fight what's wrong, or search for what's right. I'm watching and waiting and seeing the good in all this. I'm seeing the good work of advocates and politicians, of nurses and doctors, of friends and neighbours.

This evening a man I've never met came to the house to visit, it was beautiful. He's from Rowanda. I think he might know about suffering. He was just so humble. He didn't bring answers or advice, just himself. He prayed quietly for all of us, and then he slipped me an envelope with a little cash in it. It was so beautiful, not because he gave, but because of his faith. He believes in what is, and is not distracted by what isn't.

I'm looking forward to what hope tomorrow brings.

Who Knew?

Today as the Toronto star newspapers hit the floor of the distribution centres, at three in the morning, they carried a couple of healthcare stories that seem to scream at each other. One was the story of the highest paid hospital executives and their bonuses, the other was about our very own Marky and his currently underserved medical needs. It seemed strange (in an outrageous way) to me that a system that can't afford nurses, can afford perks.

A few days earlier, in the middle of a long sleepless night, fuelled by frustration, I had hammered out a plea and sent it to the Toronto Star. I wrote, Marky is my 17 year old son, fading away with a neurodegenerative disorder. He's been declared a complex care kid by Sick Kids. He was turned away from Perram House Hospice because he's too complex. He was turned away from Darling Home for Kids because the funding only covers his final 90 days of life. Really. Mark was sent home on Dec 8th with only 43 hours of nursing support per week. This is a story here of two parents who are slowly being crushed by the burden of a sick son, as the system ducks and dodges. So while it's Christmas eve for many, it's not so much here on Endean. In the morning I wondered if I had made a pathetic fool of myself. Surely there are others who are dealing with these kinds of issues–suck it up Dad.

Then The Star called saying they wanted to carry the story. When they showed up I was completely sleep deprived and Linda was away. We take turns at living and it was her turn. I wobbled down stairs with the reporter and photographer in tow. I perched on a stool beside Mark's bed and began sharing the story. With the vocabulary of a drunk, a sleep deprived drunk, I fumbled my way through, posed for some pictures, then hung my head and let out a subtle sigh–clic clic clic, "perfect" said the photographer.

In the end I still wonder if I've done the right thing. Have I brought the right kind of attention to the situation. Well by the end of the day the story hit the street, Mark's file had grown new legs and was climbing the bureaucratic ladder to the Minister of Health's office. Mark's story was being discussed over the radio and e-mails and tweets were buzzing. It felt good and the possibility of finding our way through this healthcare mazed seemed much more likely.

It's late now, I'm just waiting fro the nurse to show up for the overnight shift. Linda got to go to bed earlier tonight, but she'll be up at 6 when the shift changes back to us. As I sit here thinking about what this story in the paper might have done to lubricate the gears of bureaucracy, I wonder about those whose voices aren't being heard. I really hope this story gets some traction and The Star goes after it. How many others out there are slowly being crushed by the burden of a dying loved one.

Mark coughs, a very productive cough, and I leap up to clear his throat with a suction pump. The process is a bit violent, jabbing at the back of his throat with a rigid plastic tube. When I'm done he looks up and smiles at me. Sometimes he laughs, but not tonight. Tonight he manages a smile.

It's Been a Too Long Time

It certainly has been a long time. The last entry to this blog was Feb 2010. I started this blog in 2008 when my son Mark seemed so near the end of his life, and yet he lives. So what happened in the past 600 days that seemed so unimportant, so unworthy of the blog?

Probably the biggest single change that I never shared is that Mark move out of the biggest room in the house, to the smallest room in the house. The shuffle was to accommodate another family that moved in with us. Mark had moved from his special status of palliative, back to his normal happy self. He went from being the focus to just being part of the gang that live at 47.

In late November Mark took a turn for the worse and was rushed to hospital. I was working in Calgary at the time. I got the call in the evening, he was not expected to make it through the night. I jumped the red eye, hoping to be there before he breathed his last. When I arrived the next morning he was just hangin on. I leaned in close and said, "Hey little buddy, it's your Dad." I had been away for 7 months. His response was minimal. Then I leaned in even closer and said, "If Jesus comes to the door and calls your name, GO!"

I guess Jesus never came to the door, I'm not sure why. My son has died so many times, and then bounced back to die another day. Today there's not much left of him, and yet he lives.

His room is now in the basement/playroom. He's there because he requires 24/7 care and it's less disruptive to the rest of the house to have him there. A nurse comes in for the overnight shift from 11 to 6. Linda and I are splitting the rest of the time.

Although there were several reasons why the job in Calgary didn't pan out, caring for Mark has to be considered a major factor. This scenario is simply not sustainable without the support group that we have in Toronto. Having said that, it's not even sustainable at home. We are hoping and praying that Mark will be transferred to a hospice in the next few weeks.

The words of a song from the 70's have been rolling around in my mind. It's a song that was written by Allen Reynolds and recorded by Crystal Gayle, Ready for the Times to Get Better.

READY FOR THE TIMES TO GET BETTER

I've got to tell you I've been rackin' my brain

Hopin' to find a way out

I've had enough of this continual rain

Changes are comin', no doubt

(Chorus:)

It's been a too long time

With no peace of mind

And I'm ready for the times

To get better

You seem to want from me what I cannot give

I feel so lonesome at times

I have a dream that I wish I could live

It's burnin' holes in my mind

Watching Mark suffer is so hard. I am sure that it will be easier to live with his memory, then it is to live with his suffering. I will continue to share his story with you, or as my friend Terry put it, to metabolize the the grace.

Happy Birthday Dad

A year or two ago, or maybe even further back than that, Linda told me that for her 50th birthday she wanted to go skiing in the Rockies. In the end she had to settle for Mont Tremblant and I had to settle for celebrating my birthday alone. She went with a few friends and the timing just happened to fall on my birthday.

Mark had a bit of a cough all week, but had managed to keep up with the pace. Things were different on Saturday morning. He had a fever and was beginning to show signs of respiratory distress. It's always a tough call, because going into the hospital is stressful especially for Mark. I decided to go, better safe than sorry. So Lynn and I bundled him up and trucked him off to Sick Kids. We were admitted, almost immediately, to a room in emerge. I spent the next 24 hours there. Marks condition was stable, but he was clearly quite sick.

Erin was on her way out of town for a holiday trip to Quebec City. She managed to stop in for a while. It's always tough when Mark goes down. Do we put our lives on hold or do we simply blend our stories. Erin made the decision to live with her plan, and I made a decision not to call Linda, who was skiing in the sunshine on the south side of Mt Tremblant.

By Sunday afternoon Mark was transferred up to the 7th floor. This would be his third stay on that floor. They had determined that it was pneumonia and he was on two different antibiotics. Now it was just a matter of time to see how he would respond. By that time information had leaked (thanks to modern personal communication devices) to Mom that Marky was back at Sick Kids. She called and I told her to stay and enjoy the rest of her time. She did, but not without checking flight availability to Toronto. Who knew that you can fly direct from Mt Tremblant to Toronto Island Airport.

As soon as Mom arrived home the doctor signed Mark's release. He's been at home since then making a slow recovery.

Wow, what a birthday.