From Marky's Room

Hope

2012-01-19T10:07:00.000-08:00

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?

2012-01-11T17:11:00.000-08:00

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

2012-01-10T19:10:00.000-08:00

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

2012-01-05T19:00:00.000-08:00

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?

2012-01-04T10:33:00.000-08:00

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

2011-12-18T20:37:00.000-08:00

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

2010-02-25T13:57:00.000-08:00

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.

New Moan Ya (not)

2009-12-21T06:58:00.000-08:00

This blog has always been about sharing the gift that Mark is. I started it at a time in Mark's life when he seemed to be fading away. He was to weak to get out and it seemed like his whole world was in his room. For a period of time I wrote faithfully and often. Trying to share the wonder of Marky's life. Over time my enthusiasm with blogging began to fade. It is a little like sitting in a closet and talking to yourself. I always found it easier to write about Mark when there was real drama. For most of this year Mark was so healthy that the story became so ordinary it was boring. Last night that all changed.

Mark's health is measured in terms of his responsiveness, frequency of seizures, and his stamina/physical strength. Over the past couple of months we've notice a very subtle erosion in all of these markers. His seizure activity is creeping up, and his strength is failing. His responsiveness has remained consistent, as long as he's not being pushed to hard. Road trips are starting to be too much. I first noticed that when we went to the airport to get his big sister who had been away for seven months. We were all so excited, but poor Mark just looked like he wanted to be home in bed.

Yesterday at church, something Mark usually enjoys, he was looking very weak. We got him home to his bed and cared well for him. By evening things were getting worse. We knew we were going to have to take shifts through the night. We started a discussion which we haven't had in over a year, "do we go or do we stay?". These discussions always involve the whole family. We all decided, based on past experience, that it was better to go sooner than later. So, off we went to Sick Kids.

Mark has no language, non-verbal they call it. I think he's very verbal. He's just non-wordal. Mark has a few expressive tones which for those close to him don't require much translation. He expresses boredom, happy/content, happy/funny, funny/oh stop it your killing me, unhappy, unhappy/unwell, and feeling like a sack of sheep dung. Last night it was mostly the later. At one point it was something different, it was like happy/sheep dung. It was like he was telling us he felt awful but that he loves us and appreciates our loving care for him.

Today Mark is sleeping it off.

Mark's health is a puzzle. We can never be sure if the increase in seizures indicate underlying problems or if they precede a decline. When Mark was so sick in 08 his neurologist described his seizures as constant non-convulsive. That's just like it sounds. It's like having hundreds of tiny seizures a day. The only evidence is in his eyes. When Mark is well he speaks through his eyes, when he is not you see it in his eyes. Lately mark has being like that. His neurologist has adjust one of his meds. It will take a few weeks to see the difference.

I've also come to realize that when Mark is sick nothing else matters to me. I still have responsibilities, and I still do my best to meet them, but my passion, my focus, my creativity all seems to melt down into this time and space that I call Marky's room.

I don't want to miss a single moment of the gift that he is. I think this is true about all my relationships. Life is so precious. How much of it is wasted because we are paying attention to the wrong thing? Mark has taught me that life is so simple.

Thanks Marky buddy, you are my hero.

Almost 15

2009-10-17T07:31:00.000-07:00

Wow! Mark will be 15 in a couple of weeks. It seems impossible. How did that happen? I know this sounds like every parent who is in denial of their own age, but Mark really isn't 15. We recently took Mark to see a nutrition specialist. He told us that physically Mark is the size of an 8-9 year old and mentally like a 1 year old. That just doesn't add up to 15. As I sit in his room, writing this blog, he's laying in his bed making cooing noises like a baby. He's so special, unique that age just doesn't matter. Often when people ask us how old he is, I realize how confusing the evidence is. We were visiting a church recently and this kid, a real tough guy, came up and asked us how old he was. When we told him he said, "no way". Then he ran off to get his friends to come and see the kid in the wheel chair. To some people his behavior might have seemed offensive, but to me it was a reminder of how special Marky is. For half of those 15 years I was hoping that Mark would somehow catch up. Then when he almost died and I stopped hoping for for what might be and started celebrating what is.

Everyday I thank God for the blessing that my special son is in my life. I know his mother and sisters are saying dito, dito, dito.

Busy Summer

2009-08-30T09:28:00.000-07:00

Things around Marky's room have been very different this summer. It was just a year ago when Mark was so sick that we thought we were going to lose him. The blogs then were deep and sad. These days Mark is doing much better and the blogs are much fewer and further between.

This past week Mom and Dad went on another honeymoon. It was our twenty-ninth anniversary on the 16th. Last year we walked from Sick Kids to Fran's on College. This year we jumped on the bike and went to Bancroft and then up through Algonquin Park, Huntsville, Washago and home. It was a beautiful week. It's only possible for us to get away like that because of the awesome people at Safehaven. That's the respite home where Mark stays when we are away.

Mark is going back to school and is stepping back up to three days per week. We'll be blog'n about that I'm sure, so stay tuned.

Sailing

2009-07-16T03:53:00.000-07:00

It's early. I got up early to start Mark's feeding process because today we're going sailing. Bob Buckley is taking us out on Lake Ontario.

Mark is happy this morning, maybe it's left overs from talking to Lynn on Skype. Mostly he's just happy cuz life is love and he's got lots.

Stay tuned for a full report on our sailing journey.

Progress

2009-06-07T13:04:00.000-07:00

Mark continues to progress toward standing. He recently got a new pair of foot braces. At school he is working towards spending time in a stander. What's next? Maybe walking. Mark seems keen.

Yesterday he sat on his stair glide for the first time in a couple of years.

Small increments on a long journey.

Mark is a very simple reminder that life is about where you are, not where you think you should be.

Slow down friends, slow down.

...and I Have Two Big Sisters

2009-05-03T16:38:00.000-07:00

Marky here. Well, not really. Actually it's my Dad typing what I tell him. I say, "aahhhwaaahhh" and he trans-turpulates it.

I spent the week at Safehaven while Mom and Dad went up to Collingwood for a week of R&R. On Sunday evening they came to pick me up. When I got home there was this party. My friend Deyen was at my house with his Big Mum and his Slim Dad. When I say Big, I don't mean fat. She's big cuz she has a baby livin' in her. And, when I say slim, I don't mean skinny, I just mean that when he stands behind my Dad I can't see him anymore. Anyways I was glad to see my buddy Deyen and he was happy to see me too. After supper we went up to my room and watched Tree House together. When Deyen watches TV he's like in a trance. I kept giving him wet willy's (goobered finger to the ear). That's what friends are for. It sure is good to be home.

Did I mention that my room looked like a base camp for an international mission trip? Well it does, and it is. My Big Sister Lynn is going to Zimbabwe in the morning. She's going for three months, to be a teacher. That's super far. I'm going to miss her, but I think she's gunna miss me more.

I still have one more Big Sister. That's right, I have two Big Sisters. My other Big Sister Erin is home from Universally. She showed me her report card. It said, "AAAAAAAA". My Dad trans-turpulated that and he says it spells AWESOME. I think she's awesome too. She loves me and I luv her too. I'm glad she'll be around for the summer.

Thanks for droppin by my room for a visit. See ya!

You're dismissed

2009-04-16T03:37:00.000-07:00

Yesterday Mark was dismissed from the Palliative Care Team that has followed him so closely since he was so sick last summer.

That's it, the shortest blog ever.

Oh, there will be more, because next week Mark is being fitted for new AFO's.

Next stop, vertical. You go Marky.

Marky Goes to Church

2009-03-07T06:51:00.000-08:00

Last Sunday for the first time in a very long time Marky made it to Sanctuary for the Sunday Thang. He sat through the first part, lot's of singing and dancin. When we brought him home at the half-time he seemed like he could have stayed for more. In fact as I carried him to his bed he let me know that it wasn't what he had in mind.

Mark is going to school two days a week now and seems to be continuing to progress. Sometimes when we change him in his bed he struggles to sit up. We get him up everyday and as the good weather comes he'll be back outside too. At school they are doing therapy with him that will help get up and around. They've even called for new foot braces. Is it even thinkable that Marky will be back on his feet. I know Marky thinks its possible.

On the other hand, his seizures are returning. They seem to be triggered by certain sounds. The two most noticeable are the telephone and the backup beeper on the school bus. Those sounds send him into convulsions with absolute predictability. We haven't changed his meds in over a year and in that time he's gone from terrible seizures ten times a day to none and now back to ten, although these are more the laughing kind than the terrifying kind. It makes me wonder just what those drugs do.

What goes on inside of Mark's head is still a big mystery but that something is going on is very clear. Mark laughs and makes lots of happy chatter. He's back to playing with baby toys, which may not seem like a big milestone, but for much of the past year he was not able to lift a feather.

Today Mark is alive with the sound of music. Lisa, a volunteer who comes in to sit with Mark on Saturday mornings has brought a DVD. Mark follows, or at least seems to. He certainly enjoys the company. Lisa is a very rare volunteer who is willing to come in an spend time with a child who is so mysterious. She is not a nurse so we can't leave the house but she is still a huge help as one of us can go out and get groceries or we can both work on our reno project.

Thanks to volunteers and nurse helpers and Safehaven we are able to keep Mark at home with us. I don't think I need to explain how important that is.

Thanks also to the many who read this blog. This blog is a stream of consciousness, as you read it and connect yourself to Marky's room you become part of his support network too. Many of you pray and your prayers are shaped by your awareness.

Others have supported us financially through the Marky Care Plan - Don Valley Bible Chapel, 25 Axsmith Crescent, Toronto, ON M2J 3K2. This charity plan has helped us purchase equipment for Mark. Currently he needs a portable food pump that will cost $700. Having a portable pump would allow us to make trips with out regard to meal times. It would also mean that we wouldn't have to get up at 5 a.m. to start his morning feed on school days.

Thanks all for walking with us and loving Marky.

Up an At'em

2009-02-12T20:52:00.000-08:00

Mark has recovered well. He went to school on Thursday and all went well.

This weekend he's going into respite care. It's Dad's 50th birthday and Mom and Dad are celebrating in style in downtown Toronto. Some level of government has provided funds for a weekend holiday for parents who care for special needs children at home. This mini get away includes a limo pick up, meals, accommodation and tickets to three attractions.

Mark will be staying at the exquisite Safehaven Manor, where he will enjoy endless loving attention from the staff who truly love him.

Thank you Safehaven for helping us take care of a very special young man.

Down Turn

2009-02-09T13:25:00.000-08:00

It's been such a good stretch from late August until now. Over the past month or two we've seen a slow creeping back of the seizures that have plagued Mark so much. Then over this past weekend things have gone from a few to 15/day. On top of that he isn't holding his food down. The strange thing about all this is that he doesn't seem to be sick. In the past, heightened seizure activity was often connected to an underlying illness. If there is something causing this round of seizures, we're not seeing it.

Please pray for us.

Paths That Cross

2009-02-08T05:45:00.000-08:00

Last summer when Mark was so sick, as he lay in his bed so weak and helpless, all we could think about was how to make him comfortable. As his father I would have traded places with him in a heartbeat, but I couldn't. He was alone in his struggle and he had no voice. All I could do is sit there and watch.

My work is like that too. Every morning I trade morning giggles with Marky, offer our prayers for a few special warrior friends, and then I head off to the shop. There I work with individuals who also experience great struggles, alone and with little or no voice. It seems that all I can do is be near.

I want to share their stories in all their sad detail, but I don't want to expose them in all their private pain. What's more, I don't know how to make sense of any of it. It's like sitting beside Marky's bed and watching him grimace and then trying to guess why. But I must tell you some because all of the stories have leaned over the side of Mark's bed and shed a tear.

There was this guy who lived in the valley. One stormy summer evening, while he was out scoring some crack, a large tree fell on the exact spot where his sleeping bag was. When he was only eight years old his Mother took two of the kids and fled a drunk and abusive husband. In her flight she lost control, the car plunged off a bridge. All souls were lost. Crack won't heal that pain, but that pain has been to Marky's room. That pain has stood beside his bed and understood, without words, where Mark is. That pain prays for Marky.

Another friend took me to the house, where he was so abused by his father, that he begged me to pray the demons out. His father played cards with his friends and the winners got to have their way with the losers son. That is even more horrifying than it sounds, especially if you are one of the boys. Well, that wound has been fed enough booze and drugs to kill a man a few times over, and yet he lives. That pain prays for Marky.

I've heard about a step father who tied a boy to a chair. He made that boy watch as he tied his sister to the kitchen table and had his way with her. That torture included threatening to chop her to pieces with a chain saw. Those two kids spent the rest of their lives trying to escape the pain of that moment. A few years later that girl ended her life and fifteen years after that her daughter did the same. The boy lives on in his pain. That pain, on some broken and screwy level is Marky's friend too. He pushed Marky's wheelchair out of the hospital.

So, what's the point? None of these people have experienced a father's love. Each has a pain so deep that its ripping them apart. Each has a very real and turbulent relationship with their Heavenly Father. Mark has been lifted by their prayers.

The next time you encounter pain and struggle, sit down, shut up and spend a while.

Mark has been lifted by the prayers of these and other friends. He continues to be happy and well. Thank you friends.

All Fired Up and Someplace to Go

2009-01-04T14:06:00.000-08:00

New Years Eve is always a time of looking back. This year I stayed home with Mark while Linda was out with friends. I didn't watch any of the party stuff on TV. I just sat quietly reading a book. I didn't really want to look back. Sure there were some good things in 08 but mostly it was about watching Marky losing his grip on life.

Now, a few days into January and I find myself looking ahead with great expectation. This seems strange, I usually spend most of January waiting for the days to start getting longer. This year I'm full of hope and ideas. Some of these ideas are kinda crazy. I've been known to have crazy ideas before, but they usually happen in the spring. If I had to blame someone for this new energy I'b blame Marky.

Marky has been continuing to improve. If you review the blog you can see for yourself how week he was in July and August. At that point his decline was a couple of years old and seemed to indicate that the end was near. Sick Kids Hospital listed Mark as palliative. That's there way of saying there is nothing more we can do except help him die well and comfortably. Marks turn around began in mid August. It was truly the low point of his life. Then quietly Mark began to improve. His seizures went away, his eyes brightened, and he began a long steady climb back to life. We began to wonder if he could get fired from the palliative team.

This week Mark goes back to school, twice a week. He is sitting up well and has been playing steadily with a rattle toy. Now we're starting to wonder how long it will be before he sits up freely, and how long after that until he's crawling and walking.

It's this kind of hopeful thinking that has me thinking up new and crazy ideas. This dream is so crazy that it involves me and Marky on a stage performing together. Whether it ever happens is not as important as the ability to dream.

Dreams are what draw us along. I hope Marky's journey draws you along too.

W

I'm sorry there haven't been more pictures. We can't find the cable for the camera. We're working on the pictures, both moving and still. Stay tuned.

Christmas Day

2008-12-30T09:56:00.000-08:00

Christmas day is always a big struggle for me. I really hate the pressure that the commercial Christmas dumps on us. Even the traditional brings pressure. The whole scene has become a series of trappings: the tree, the gifts the stockings to be stuffed, the turkey, the lights. I know so many poor people who can't live up to that and I've seen how it makes them feel. For many, the holidays are about sustaining a good drunk, at least until it passes. The whole scene makes me angry.

For Linda, the tradition of Christmas is where she's stored her very best memories. Ornaments that once decorated the Grandparents house are carefully unwrapped. Once again, for a couple of weeks they will remind us of what a special family time this is. Old family recipes play a role as well. Every detail is very important.

Over the years we have struggled together to find a balance. It's always been a swinging pendulum. This year the pendulum was just ever so slightly to Linda's view of the season. All the trappings were out. We did agree to be very modest in our shopping endeavours. We had a turkey. My Dad paid for it, I picked it. Linda took a look at it and asked, "what were you thinking?" Well, I was in a hurry. I guess I was just thinkin, gettr done. The bird was a monster. I think it must've grown up under the powerlines or something.

On Christmas day we all gathered around the table with my Dad and Rosemary too. We shared the holiday spirit, some old memories and we chalked another one up to a tradition of good memories. I think the high point of the day was having Marky sit on Grampa's knee. It was a sweet and tearful moment. We all remembered that it was only a few months earlier that Mark was struggling to stay alive.

We ended the day by putting all the left overs form birdzilla into two large plasticware containers and dropping it off at one of the homes that Sanctuary runs. That was a sweet moment for me. I've gone to the devil's doorstep and back with the man who recieved that gift. It was something special for both him and me to share Christmas this way.

Somewhere in this there's love.

Posting Frequency Indicates What?

2008-12-19T16:11:00.000-08:00

If you read this blog regularly, you may have noticed that the frequency of postings has tailed off considerably. So what does a waning PF indicate? It could be the sign of declining interest, or perhaps increased activity in other areas. It could reflect the exhaustion of the writer. It could also simply mean that the subject has simply become to boring to write about.

If you read this blog regularly, you may have noticed that it is a little about Mark, but mostly about the impact his little life has on all those around him. Within the family we've always been aware of that significance. It was only this summer when we really thought we were losing him, that the need to share the gift that he is became clear to me. I am Mark's father, and I am the writer.

Yesterday we loaded Mark in the van and drove him up to Bloorview Kids Rehab. He had an appointment to have six teeth pulled. Owee! I did the driving, the ramp unfolding, and the pushing of elevator buttons. Once up at the second floor I turned into a whimp and sat in the waiting room as Mom and Marky went into the chamber. I prayed for Marky as these strange people did strange and painful things to him. I can't be sure what he understands, so I insert fear where there are blanks. I was tired because I had to get up at 5 a.m. to start his morning feed. Mark is fed through a tube and it takes two and a half hours. Once up I can't go back to sleep. So in my very tired state, stressed and fearful, I prayed for peace for my son.

Although my eyes were closed, I was not asleep. Although I was in a busy waiting area, I felt very alone and the space that surrounded me seemed dark and bottomless. It was as though I were suspended in the depths, well beyond the point that the light reaches down to. I wasn't holding my breath but it felt like I was. My thoughts were troubled. I probably should have been praying for myself. I kept thinking what if they can't control the bleeding. Then I remembered a friend who was praying for us. My thoughts began to reach for the light. Then I heard him, "arrrrrrrrrrr". I opened my eyes. There in front of me was my little hero. There were no tears in his eyes. There was no bleeding. Everything was okay.

Today Mark is talking more. He's saying, "arrr eye eeee, ahh" Which loosely translated means, "love". It means I love this video I'm watching. I love my bed. I love my room. I love whoever I'm looking at. I love my music friends. I love my far away friends who pray for me. I love my nurses and my teachers, I love life.

It's impossible to imagine what is going on in Marky's head. It's nearly impossible to share it with you. Sometimes it's so simple that it defies explanation. Sometimes it's so simple that unless I slow down and spend some time here I completely miss it. I suppose it can be said that sometimes it's just for me. I sit here and watch him sleep. There is nothing more peaceful than a sleeping child. Sometimes I read to him as he sleeps. When I stop I wonder where the words went. Maybe they're in there.

As I write I wish they could be his words. I want nothing more than to share his thoughts. I want nothing more than to share the thoughts of my son. Most kids grow up and do that all by themselves. Both my daughters share their thoughts with me. I love that too. "Hey Dad, guess what"they'll say. I know I don't have to guess cuz I'm going to hear anyways. With Marky I can only guess.

There was a time when all I wanted to do was photography. Then I came to this place where all I wanted to do was be there. If I take out a camera and start observing then I won't be there anymore. Somedays I feel like that about this blog, I'm either in the moment, or I'm next to it and writing about it.

Posting frequency indicates nothing, and it indicates everything. Thanks for spending time with us.

Before I go I want to share something a friend said about Mark.

"The Lord comes with healing in his wings. Strange how that shows up. I've never met Marky but he's one of my heroes. There are places where the veil is thin and I think he peeks through to the heart of God in ways we can't."

Kiowa Flute Prayer

2008-11-30T08:10:00.000-08:00

Mark's room is empty and quiet. I pick up my native flute and go up and down the scale. It makes a soft and peaceful sound. The man who made it describes it as a prayerful flute. I agree, so I play a prayerful little tune for my son who is away at Safehaven.

Today is the last day of November. Have a look back at the two posts called T-minus at the end of July and the beginning of August. Some 90 days have passed and Mark is still with us. These days his responses are much more than a tiny laugh. Now he looks right at you and smiles. He's back to school one day a week and in the new year he'll be up to two days. He's able to hold his head up. He's not sleeping as much and once again he seems to enjoy getting out. Go Marky.

Um... I lost my thought. I was sitting here in the quiet, blowing a prayer on my Kiowa, thinking back to how far Mark has come. Then Keith heard the music and popped his head in the door. A couple of minutes later Linda and then Lynn. This Kiowa flute calls people. Now the guitar is out, and the bamboo sax, and who can concentrate any more?

Writing a blog is a strange thing. Its a little private, a little public, and definitely in the moment. At this moment I'm missing Marky, but I'm enjoying a little freedom. I think I'll go back to praying with my Kiowa.

Music Therapy

2008-11-23T06:07:00.000-08:00

A few months ago Mark had a few sessions with a music therapist. His response was quite remarkable. We always knew that Marky had some music in him. When he was just 3, he was making special sounds with an electronic keyboard. When he came to church with us he would often make vocal noises during and even after a hymn was being sung. However, when his health declined over the past couple of years he has had less opportunity to practice or even experience music. We are not a very musical family. Erin probably leads in that department but the rest of us are just not that way.

In the spring when Mark started spending his days in bed, we went out and bought him a TV with a built in DVD. It's mounted over his bed. It's not hooked up to cable so it only functions as a DVD player. Mark watches movies and listens to music CD's. It's fun to watch and listen with him, he's very responsive.

Then, on one of his very low days, I watched as the music therapist got a living response from an almost lifeless little boy. It was something I will never forget. It planted a seed deep within me, or perhaps it watered a seed deep within me. I went out and purchased a tongue drum for $25. If you've ever purchased any musical instrument you will know that $25 doesn't buy very much. This drum was no exception, it was kinda junky. I brought it home and played it for Mark, he smiled.

I invited friends to come and play for Marky. Some have and each time has been special. We have a friend who lives in Vancouver and is a music therapist. She was in Toronto and made time to sit by Marky's bed and share a little music.

The disappointment in the tongue drum drove me to search for something else I could play in Marky's room. My search went on-line where I found all kinds of weird and wonderful things. There were home made instruments from plastic tube but they looked like they'd occupy half of his room. I searched some more, and then I discovered the native american style flute. What a sweet and healing sound. I decided to buy one.

It was just around Mark's birthday so I justified the silly purchase that way. I went to the website and dialed up the flute. Then something happened, I noticed that Erik the Flute Maker also makes a Bamboo Sax. I pressed the little button for the sound sample. BAM! SOLD! I bought them both.

When our music therapist friend came to play we had to borrow a guitar for her. After she left the guitar sat around the house for a few days. On a couple of occasions Lynn picked it up and play with it for Mark. Notice I said, "played with it". Mark smiled.

Enter Keith Hamm into the musicification of the Rumsby's. Keith is boarding with us as he studies at the Glen Gould School of Music. Keith is one of those anoyingly gifted musical types who can pick up anything and make music with it. I once saw him pick up a piece of cold pizza, take a bite, and start humming. OK that was a bad joke but the kid can make music. His only mistake is thinking everyone else can.

So Keith sees Lynn foolin with this borrowed guitar and says, "Oh Lynn, I didn't know you played". Lynn laughs and says, "I don't". Then Keith says, "Well you should. If you want to work with kids in South Africa, you should play a guitar".

The next thing I know I'm standing in Long & McQuade buying a guitar with my daughter Lynn.
Then on the way home we stopped at the post office and picked up my bamboo instruments. So now we have all these instruments and no idea what to do with them. Keith has promised to have Lynn playing a song before Christmas. I promise to try to make my flutes make something other than a duck call, when I'm not sure.

Remember, it's all about Mark. Mark doesn't care how good it is, he only cares about how free it is (and I don't mean cheap).

Thanks to Fayona, and Matt, and Dan, Anne, and Strawberry, and Brian P, and Brian B, and Denis, and Michael, and Erin M, and Red Rain, and the Sanctuary Worship Gang, and of course Keith the Hamm, or the musicification of Marky's room and hopefully his family.

Honk bleeep erp!

Owee

2008-11-11T05:17:00.000-08:00

Mark has been doing so well. When things are going well I blog less. Things get busy, focus changes and on a good Tuesday Mark gets on the bus and goes to school.

This morning Linda got up at 5:30 and started Mark's feeding. He's tube feed so it takes a couple of hours. At first he seemed fine but by about 8 he was definitely not fine. Suddenly school was canceled and the doctor was being paged. This is not the recipe for a good Tuesday.

Mark has always had a high pain threshold. There are very few things that make Marky cry but this morning he's crying steadily. There are very few things that get me off my game, but Marky crying steadily is one of them. My focus on the bigger picture of life, my responsibilities at Sanctuary, my longer term goals, all that shuts down. I'm left clinging to the lifeboat that is Marky's room.

Some things are universal and really require very little explanation, parental compassion is probably near the top of the list.

As I write this Dr. Kevin has arrived. He has a very peaceful tone which has an immediate effect, on us anyway. He discovers a low grade ear infection. It's not so low grade to Mark. Antibiotic treatment is ordered.

In the past Mark's seizure activity always went up when he was sick. Over the past couple of days we have seen some seizure activity. It's nothing compared to last year but he has been having low level seizures. For the most part he just looks like he's staring at the wall. We know it's a seizure because we can't break the stare. It never lasts more than a minute or so.

I called the shop to say I won't be in. I'll spend the day in Marky's room. I'll use the time to do some work at home. Part of my work is very practical, but much of it is compassionate. I will use this time to focus on the compassionate.

I've been out to pick up the Amoxi. I've just administered the first dose. Mark is resting quietly. Mom has gone back to bed, she's working the evening shift today. The house is quiet except for the gentle clicking of this keyboard. Mark yawns and sighs. Peace.

Better

2008-10-29T17:53:00.000-07:00

Mark is feeling better.

What more do I need to say?

Happy Birthday?

2008-10-28T20:31:00.000-07:00

Today was Mark Andrew Rumsby's 14th birthday. It was a happy birthday for most of us who weren't sure he'd actually make it this far. It was not so happy for him, he was sick. When we got up this morning to get him ready for school, he seemed a little off. Mornings are usually his best time, not this morning. We check for fever, there was none. We went ahead and dressed him and sent him off to school. He didn't do well and by noon Linda was picking him up to bring him home.

I came home early so Linda could go to work (evenings on Tueday). He was resting but it was apparent that he was still uncomfortable. I gave him some Advil and then he went of to sleep. The upside to a g-tube is that you can feed and medicate him, without disturbing him.

Tomorrow is another day and we can only hope he's feeling better.

Happy Birthday Marky

Back to School, Really and Truly

2008-10-14T02:27:00.000-07:00

It's 5:30 in the morning. I've come down from the third floor loft to start Mark's morning feed. He'll be getting on the bus at 8:15, so reverse the math and it equals extremely early. When I come down to his room he's already awake. We're not sure when Marky wakes up, cuz he lays there so quiet. He's quiet until he hears foot steps and then the rolling laughter starts. By the time I get to the side of his bed he's in hyper-laughing mode.

I wonder if he knows what's going on. We've been telling him for the past week or so that he's going back. I wonder if he knows. He sure seems happy this morning. The truth is we just don't know what does on inside his head. It might be so simple, then again it might be simply awesome.

I have been praying with Mark lately. I pull up a stool beside his bed and wrap my hand around his and just start talking to Dr. Jesus. He's more than a medical doctor, Jesus has his PHD in everything. As I pray I believe Mark prays with me. It's not like he's making up sentences in his head. It's more like when he talks to me, it's love gu gues. So how could something like that have any power? Well, God is love... duh!

Faith is such a personal thing. How I imagine God may be very different than how you imagine God. However, how God really is, is not limited by either and even if you think the concept of God is a ridiculous notion, it is possible that he exists beyond your understanding. Therefore, while faith waivers, God is constant.

So, when we pray what does God hear. Does He hear luv gu gues or does He hear whining? What we pray can't be that important. I don't really believe that Sovereign God requires my instruction or that like a candy machine he grants every wish. I think what is important is how we pray. I believe that prayer is a form of meditation. It is a time for us to consider things we don't understand. As we do this, if we mix in what we know about God from the Bible, we can begin to think of things differently. Our thoughts, our prayers begin to align with his patterns. It is in that moment, when our prayers take on agreement with the Creator, that the words become powerful enough to move mountains into the sea. When Mark prays gu gue luv, I think he's there.

Morning prayers with Marky the mighty little prayer warrior, it's my favorite place to be.

Thanks

2008-10-11T19:14:00.000-07:00

Here we are at Thanksgiving. Earlier this year I would have believed that I would be mourning rather than giving thanks. On this beautiful autumn day things were different. We loaded Mark in the van and took him down to Cherry Beach. It seems to be a tradition over that past few years. We stroll past all the little sailing clubs on Unwin Ave. They are busy wrapping up their season. The dog runs until he wobbles. He's having so much fun he doesn't want to stop, but his tired old body can't keep up to the little puppy within. I know the feeling.

Thanksgiving shouldn't be a time of denial, pretending that everything is okay. Instead, I think it should be a time of reflection. As I reflect upon this year I remember that this has been a tough year.Truly, it's been a tough couple of years.

In the spring of 07 we'd had just gone through a long tough spell with Mark. He finally had a g-tube installed and so we had some peace of mind around feeding and medication issues. Then I had the motorcycle accident. I spent most of the rest of the year recovering.

By late summer my mother, who had suffered a whole range of illnesses, finally passed away. It seemed to have taken too long. I only say that because for my mother, living was working. It was sad to see her go that way, it might have been more fitting if she died in a sowing accident or perhaps a gazebo collapse.

Marks health continued to slide and it was becoming difficult to send him to school. He was no longer able to sit up, so on the bus ride to and from school he would slip down in his chair until he was so uncomfortable that he would just be sobbing. Then came the series of ambulance rides and hospital stays that defined this year for us. By the middle of the year the doctors were defining our care strategy for Mark as palliative.

Meanwhile, several friends marriages have tanked, another friend is fighting of the creditors in a desperate attempt to avoid bankruptcy, and then Steve, my work partner and friend, had his turn with a motorcycle mishap. Many of our Sanctuary friends have experienced terrible things as well. Suddenly everyone is becoming a diabetic.

Whoa! Slow down. That's a lot of crap. So, how can we be thankful. Well, for starters it's important to be thankful for what is rather than what has been. Just stop and take account of what you do have.

I actually have an ex-diabetic friend. My friend (we'll call him Bob) took someone to a healing prayer group. He was hoping that God would touch this person who had many problems. That may have happened, but God also touched Bob and healed his diabetes.

Steve has recovered from his motorcycle mishap about 4 times faster than the doctors had predicted.

My financially troubled friend is still on the edge, and he's still a great creative mentor and artist.

Sadly when marriages breakdown it's tough not to end up on one side or the other. However, as with any journey of pain, I find myself closer to the halves that I have and am truly grateful for both the hurtin and the healing that they have shared with me.

Mark who was declared palliative is still here. He's also experience a prayer healers touch. His seizures were in the order of 5-6 majors a day. Since August 12th the majors are completely gone and the very minor abscence seizures have almost no impact on his quality of life. On Tuesday, Mark will be getting on the bus to go back to school.

My mom's passing was sad, and a great loss to my Dad. My own Grampa Muir died just one year after his wife. I wondered if Dad might just give up on living too. Apparently not, because on September 20th my Dad slipped a ring on Rosemary's finger and vowed to live happily ever after.

As I count the blessings in my life I realize that I have a lot to be thankful for. My wife, my girls, my very special son, a meaningful job and a great bunch of friends, mentors and supporters.

Thank you all and thank God.

Back to School

2008-09-29T14:06:00.000-07:00

The term back to school usually refers to that day in September when kids all head back to the classroom. In most cases it represents a new and greater challenge. It's a time to raise the bar, a time of growing up.

Earlier this year, as Mark's health declined, we had to pull him out of school. At the time we weren't sure if Mark would make it to the end of the year. When he stopped going to school it seemed to be a permanent decision.

Back to school can also simply mean a time of life learning. I had a great uncle who would often remind me that each and every day holds a new lesson. Mark has taken us back to school when it comes to hope. His seizures have stopped, his mind is clear, and he is full of laughs. While the doctors can only guess and do their best, others have prayed. Mark has taken us back to school on matters of prayer too. I'm convinced that he has a special connection with the Almighty. I think it's like a prayer hot-line, one that requires no words or fancy poetic speeches.

Today, a friend who knows how well this prayer hot-line works, asked me to pray for a very serious financial situation. Because I was already in Marky's room, I rolled over to his bed and asked him if I could interrupt his movie watching. I turned the TV off, took his warm little hand in mine, looked into his eyes and told him we needed to go to Dr. Jesus with a special request. Marky knows Jesus as a doctor who heals all kinds of hurtin things. I prayed and Marky cooed and laughed. How pure is that?

Next week we're hoping to send Mark back to school, really. One day a week to start. So on Tuesday we'll roll him out to the curb and put him on a bus. We never thought this would happen but Mark has taught us so much about hope.

We'd like to thank all those who have faithfully prayed for Mark. Keep on praying until he runs into the street and says, "This great miracle has come from God through Jesus".

I know, that's completely crazy. So what do you believe? Do you believe in the TSX or John McCain or Prime Minister Harper? Do you believe in guns and amo? Call me crazy but I believe in Holy Love, and Light, and Truth. I believe that anything is possible, in Jesus name. So while your RRSP goes in the tank, and the world goes to hell in a hand basket, why not do something completely crazy, why not ask God to show you his crazy love? Ask God to take you back to school, you may be surprised.

Bloorview Mac

2008-09-21T20:33:00.000-07:00

That's right, Mark is at Bloorview MacMillan Kids Rehab. He's staying in the respite center. He's been there since Friday. Grampa Rumsby's wedding on Saturday would have been too much for Mark. Shoot, it was almost too much for me. Furthermore, Sanctuary Staff are away for a retreat on Monday and Tuesday, so we thought it best to have Mark in respite. In the past Mark has always gone to Safehaven for respite, but we wanted to try out Bloorview Mac.

So, Marky's room is empty. I was up there checking e-mails this afternoon. I decided to knock off for a nap. I crawled into Marks bed and just got off to sleep when suddenly the bed motor began to whirl as my head was being lifted. I lurched into action, flipping over to see what or who was the source of this aggravation. The room appeared empty. Then I looked down and saw Lynn on the floor laughing uncontrollably. I tried to go back to sleep, but there was a little to much adrenalin coursing through my system. Grrr, kids just don't understand how important those naps are.

I got up and drove Erin to the bus station. She's headed back to Brantford. Life is different without Erin around. I don't think we fully understand how different. When I stop and think about it my head goes back to the early 90's when she was just a little kid, reading a bunch of books. Actually, not much has changed.

Linda and I took Erin to see Mark in his new room. She sat in a chair, giving him a big hug. Erin misses Marky more than anything.

Mark has been doing better lately, we're hoping to get him back to school for a day a week.

Isn't it strange how life is so different from one day to the next and we still do everything we can to make it the same. My prayer for tomorrow is, "Lift the blinders of expectation, so that I may see God's abundant provision.

Up'n At Em!

2008-09-18T04:57:00.000-07:00

It's Thursday morning, about 7:20, and we're just changing Mark's bed. My job is to scoop mark out of bed and sit in the chair will Linda freshens the bed.

I still remember when Mark would greet us in the morning by standing at his dutch door. Later when he slept in a tent (a safety measure) he would be kneeling when we arrived. One of the concerns I had when I designed his bed was whether the sides were high enough when he was kneeling. By the time the bed was built he wasn't even sitting up.

This morning, as I cuddle with him, he does something different, he lifts his head off my chest. When I realized what he was trying to do I sat him up in front of me. A month ago he couldn't hold his head up at all. This was exciting, I was holding his chest and back, it was like holding a three month old as they begin to discover the world around them. Then I noticed that Mark even has a little worn bald spot on the back of his head.

Mark will be fourteen in a month and we're celebrating such simple things. Who knows where this journey goes next?

Music Therapy

2008-09-14T17:21:00.000-07:00

I haven't been writing much from Marky's Room lately. He's been so stable and life has been busy, so no news and no time.

Recently a bunch of my music buddies came over on a Saturday morning. We dragged Mark out of bed and down to the living room. We sat him up on his bean bag and played a hodge-podge of music for him.

He was sleeping when we brought him down but as Denis began to play on the keyboard, Mark turned and looked. Before long everyone was playing together and at the end of each song Mark would give a little laugh to show his appreciation. It's beyond words what happened in that short time. I think there was a little healing for all of us.

Mark is still doing better than he had been for many months. His seizure activity is still less than it has been in a couple of years. We've only seen one or two big ones in the past month. There have been several other occasions when he appeared to have small ones. Those are more difficult to identify because they don't involve any movement our vocals. A small seizure really just looks like a blank stare.

Overall Mark seems well enough to go to school, although we're finding it a difficult decision to make. All the what ifs come to mind. He is stable but still very weak, so the idea of rolling him onto the bus seems crazy. On the other hand, we need to think about how incredibly boring his days are. By the end of September we may try to send him in on Tuesdays.

Next week Mark is going to try a new respite place. He has been going to Safehaven for several years and we love them, but due to his increasing needs we've turned to Bloorview MacMillan. It's a rehab hospital for kids. Mark has been followed by Dr. Biggar and a team of specialists from BloorviewMac for most of the past decade. They have a respite facility and it is right in the hospital. That just gives us a little more peace of mind.

Mark visited Sick Kids in March, April, May, July and August. Three of those visits were in the back of an ambulance. He has been doing well but it's only been a month, and you can see by the record, that's not long enough for us to relax. I'll close with a picture of Mark at Sick Kids. It's not easy but it's very special.

Laugh, Laugh, Laugh, Laugh... Big Breath. Laugh, Laugh, Laugh, Laugh... Big Breath, Laugh, Laugh...

2008-09-01T18:41:00.000-07:00

Mark was away at Safe Haven this week. We were helping Erin move to Brantford where she will be studying at Laurier. We were also working on our latest home reno project. We were so busy that I didn't often stop to think of how Mark was doing. I think I'm still pinching myself about how his seizures seem to have gone. Do I dare hope for more? Or, If I call will I hear bad news. It's a strange way to feel, hope and fear don't belong together.

Then Erin and Linda popped in for a visit and returned with a story that he had been laughing. When I heard that my heart jumped.

Today we drove Erin to her new home. She's just off campus in downtown Brantford, sharing a rental house with a couple of other girls. It felt strange as we drove away, leaving her to her own journey.

When we got back to the city we went to pickup Mark. I was wondering as we entered the building if there would be more good news, or something else. Checking out at Safe Haven is a detailed process and we each have or roles. I look after equipment, clothing, and body check. Linda reviews charts and counts back any remaining meds and signs a gazillion forms. It's a busy time. As I was hustling around doing my thing, I was desperate to know. Finally I blurted out my question, "Did he have any seizures". The answer that came back was, "No, but he laughed his head off".

One of Mark's little treasures is his laugh. You can never quite predict what will push his funny button, but when it's pushed it's awesome. It's been quite a long time since we've heard Mark laugh til he can't breathe. Sure we've had little tiny hints of laughter, but not the real deal. Well, this afternoon as I walked across the great room at Safe Haven Mark started to laugh. I had been there for a few minutes and had been walking back and forth, but it was as if he'd just figured out who I was. This is often the case with Mark when we've been apart for some time. He looked up, saw me coming towards him and he started laughing. His face shines with a big happy smile and his body rocks and shakes like a Briggs & Straton. As I got closer his laughter pushed my funny button. Then there were two of us on this big bean bag, laughin' and jiglin'. The pattern of the laughter was regulated by our need for oxygen. The laughing was the priority, the breathing only done to facilitate the laughter. Laugh, laugh, laugh, laugh...breathe.

Since Mark's trip to the hospital he has had only one seizure, and now the laughter has returned. Dare we hope for more?

Yes, I do!
Dad

Raise Up Marky to Be Just Like Bill

2008-08-24T19:30:00.000-07:00

Linda and I went to church tonight. We haven't gone together in quite some time. It was a beautiful time. For those who have never been to Sanctuary on a Sunday night, or for that matter, for those of you who don't even go to church, we do things just a little differently. At Sanctuary, doing church is less important than being the Church. We are simply a community of faith choosing to walk with Jesus, to share worship and prayer and love and care for the poor. The result is a church experience that is as different as the people who show up each week.

Tonight, as we turned our attention to Jesus in the communion time, a woman spoke from a place of deep and painful need. In some churches she would be considered an interruption, but we listened carefully. She read from Thessalonians and as she got to the part where it says,"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you" her voice went very quiet. She told us about how isolated she feels with her current housing arrangement, and then she wept. Then it occurred to me that her interruption was similar to several recorded in the bible. On more than one occasion, when Jesus came near, he was hijacked by some poor sick and blind person asking for healing. So, when Jesus said, "Where two or three get together to remember me..." Well, tonight I think Jesus was nearby.

Linda left at the half time to go home to start Mark's evening meds and feed. I stayed because a friend was preaching in the third quarter. I have never heard him preach, although it isn't really preaching, it's more like sharing. I listened as my friend shared openly about his struggles with, and deliverance from, deep depression. He thanked his wife, his therapist and a very close friend for helping him through, but most of all he thanked Jesus for being nearby.

Marky's name was mentioned at prayer time. Actually it was more than a mention it was a prayer for complete healing.

I walked home afterwards. It's a lovely walk on a summer evening, through Cabbagetown and Riverdale. As I strolled along I thought of that prayer and the countless times that I've prayed similar prayers. When people ask me what I pray for I say,"Just two things, speech and mobility". Sometimes when things are looking grim I simply ask God to raise him up or take him home. Tonight as I walked along Victor Avenue my prayer was, "Raise him up to be just like Bill". Wow! I was kind of surprised at that just popping out of nowhere.

Bill was Henri Nouwen's buddy at L'Arche Daybreak. I had the pleasure of hearing Bill speak to five hundred street outreach workers at the Street Level Conference in Ottawa. He was there with Sister Sue Mosteller. I don't think I've thought of Bill more than once or twice since and not recently that's for sure. So why Bill? I knew right away.

Imagine, Mark sitting on a stage at a Street Level Conference, sharing his life story. It would be so awesome, I'd be Silly Putty.

Misplaced Normal

2008-08-21T10:55:00.000-07:00

After spending over a week at the hospital with Mark, we thought for sure that coming home would get us back to normal. After a couple of nights, things are still abnormal. We seem to have misplaced normal. I'd ask you to come and help us find it, but you'd be looking for something different.

Of course our normal hasn't really been misplaced, it has just morphed into something we don't recognize. Mark's room is now a noisy place. He seems to be wanting to talk so much. There are no words, but there is a constant flow of vocal expressions. He might actually be bored. His mind is clearer and so his normal has changed. There's more to think about, more to respond to.

Most of us spend most of our time keeping track of our normal. There's nothing more disconcerting than when our normal gets off-track. We use all of the standard navigating techniques. We keep our eye on things that we think are reliable, and then we measure and track the changes in distance between our current position and that fixed point. The beginning of September and the start of school will be one of those fixed points. Whether or not we have kids in school, this annual milestone keeps many people on track. Then after that there's Thanksgiving, Christmas, New Years and of course anniversaries and birthdays. There are career way points too. Each of us keeps track of how things should be and takes steps to stay between the lines, but what happens when life blurs the lines?

Lately, our life lines have become a little blurry. Many of our friends ask if there is anything they can do, and others wonder if we shouldn't just put Mark in some kind of institution. In the last century that is exactly what happened. In the century before that kids like Mark just died off before they became to much of a burden. Today they build hospital rooms that are designed to accommodate overnight guests. The doctors and nurses defer to the parents experience when it comes to care giving. The way we care for special needs kids has changed. The cost of caring is shared with the family, but we wouldn't have it any other way.

Mark is our little gift. He is our normal. All four of the adults living in this house adjust our normal navigation way points according to his needs. That's how we get where we're going. Without Mark in our lives, life would be easier, but we'd all end up somewhere different.

Like you I am going to work hard to protect the normal I've been given.

W

Home Back Home

2008-08-18T21:35:00.000-07:00

That's right, we're moving home back home. The head pediatrician on the floor came by today and admitted that after watching Mark for a week they really have no answers. They introduced an acid blocking drug to help reduce the acidity in his stomach. This will help if he has reflux, but they can't be sure if he does or not. All through Marks life he has stumped the experts. Clearly there is something wrong, but nobody can say what.

Strangely, while all the attention was on fixing his tummy, his seizures stopped. For the entire week that he has been at Sick Kids he has not had a single seizure of any kind. I think this is big news, but the doctors can't figure that out either. Prior to this week he was having 4 to 6 seizures a day. These were full blown seizures complete with clenched fists, eyes rolling back and grimaced face, but lately we haven't seen even a sign of seizure activity. Hmmmm!

We're not really sure what to think anymore, but we're sure glad to be heading home.

28

2008-08-17T04:54:00.000-07:00

Yes, it was the 28th celebration of our marriage. Both Lynn and Erin came by the hospital to be with Mark while we went out. We walked over to Fran's on College just west of Yonge. As we sat waiting for our meal to arrive we pondered our journey. Then we decided to try to come up with one defining event from each of our 28 years together.

There's not a chance that I'm going to publish the list, but the process was fun. It was like digging in an old shoe box of memories. As we started we weren't sure that we would be able to come up with something for each year. Then one by one we pulled out stories, but soon what was happening was that other stories were popping up. After only a few minutes we were so bogged down in stories we actually needed a pen and paper to put some order to it. Of course a list, all neat and tidy, was not the goal; we were just happy to take a stroll.

Our children have been around for most of those 28 years, each a story, an adventure and most of all a precious gift. These days the focus has been on Mark, but the truth is that each of our stories is unfolding and being woven into something special. I love the package and wouldn't have it any other way.

W

Home is Where Your Heart Hangs Out

2008-08-16T04:46:00.000-07:00

We've been taking turns sleeping over at Sick Kids. Last night was Linda's turn. Linda had arrived just after nine in the morning, but I decided to hang around as long as I could. I really wanted to be part of the daily meeting with the team of doctors who are taking care of Mark. Finally at about 1 p.m., after sleeping on the bench/bed for a couple of more zzzeees, Doc Christine showed up. She's more like a friend than a doc. We spent 15 minutes reviewing Mark's situation and then she left. It was time for me to head home, or so I thought.

When I walked into the place where we live it felt like walking into a museum. It seemed to be like a special exhibition of how we used to live.

Oh cool, look at that they even have a couple of pieces of junk mail on the floor inside the door. The one facing up is from one of those credit card companies. They make you think you are the only person on the planet who doesn't yet have one of their cards. They believe in you so much that they've even gone ahead and put your name right on a card, your very own (fake) credit card.

As I move through the exhibit everything speaks of who might have lived here but none of it looks completely real. It's very quiet. I wander into the place where they might have hung out together, the place of food. I reach out and pull the door open on the cold box, there's actual food in there. I grab the milk jug, give it a sniff and go to find a glass. It all feels so strangely familiar.

This place is like a near perfect replica of our home, but it's missing something vital. There is no life here, my heart isn't here. When I left the hospital room, I left my heart there. Marky's Room is where his heart is and our home is where our hearts are together. That's it! Home is where your heart hangs out.

It's eight o'clock on Someday morning. I fell asleep in the exhibition. I have to get up, shower and go home.

Suffering Differently

2008-08-14T14:05:00.000-07:00

Suffering is a difficult subject. Philosophers and theologians and little people like me have all struggled with the subject. Today I live in the presence of suffering, my son's, my wifes, my daughters and my own. I have seen and been near suffering before and often the experience was painful and full of fear and anxiety.

How does one protect themselves from suffering without abandoning the person who is suffering? These days I often here people express their desire to help us in our suffering by asking, "What can I do?". "What can I do", is all about fixing, or somehow changing without embracing. Somehow the idea of bringing relief to the suffering is the best thing to do. The problem is that unless you have a very specific set of skills you will probably not bring any relief at all. On the other side of the coin, the sufferer is being and not doing. Perhaps the secret to suffering differently is a simple flip of the coin.

If the sufferer could do rather than be, what would that look like? I often think of the fear that is so often present in suffering. Perhaps if the sufferer were to share the sufferings, the fear might diminish. I have a friend who spends his days in a wheelchair. He is highly disabled and yet he lives out his life and struggle with any and all who are willing to receive the gift he offers. What happens as you draw close to him is that the tendency to focus on the suffering is changed into a celebration of life. Likewise, if those looking in on suffering were to set aside the idea of doing and simply be present, then again, the suffering might be transformed into celebration.

We have opened Marky's room to visitors and I've open my heart through this blog, as an act of sharing the suffering. The few who have embraced the opportunity have all gone away with something other than deep sadness. In fact, there is really a strange kind of hope that can come out of this suffering differently. It's not easy but it sure is worth it.

W

Owee

2008-08-13T08:33:00.000-07:00

I have a dear friend who lives on the streets of Toronto. She often uses the term "owweee" to discribe wounds. An oweee can be a broken windshield, a scratched motorcycle or in my friend Steve's case, a severely broken heel bone and in some cases a bruised or broken spirit.

Life this week has been full of oweees. On Monday afternoon Mark had an owee. That led to Erin having an owee as she rode with him in the ambulance. When I got the call my heart sank and I got an owee. My friend Bob, who I was with at the time, shared my owee. Later Lynn showed up at Sick kids ER and developed her own owee. All the while Marks owee continued. Finally by about 8 in the evening Mark was transferred to a room on 7C. Sometime after that his owee subsided.

By noon the next day we decided to feed mark again. We had skipped his breakfast because there was some concern that it might be stomach acid reflux that was causing the problem. We went ahead with the lunch feed but turned the pump speed way down (from 140 to 90). Within an hour Mark was having more OWEES.

We skipped any more feeds that day and agreed to give him an early morning feed starting at 5. By 6:30 it was more OWEEES.

Then Linda, who had gone home for a normal night sleep, called to tell me that she had run into trouble on her way in. She was driving along Gerrard and some bicyclist decided that she had cut him off. He began pounding violently on the back of the van. He chased her for several blocks and ended up calling the Police. They arrived and after only a couple of minutes were able to figure out that the cyclist was an accident looking for a place to happen. Linda was sent on her way, but the entire event was another owee.

It's now Wednesday nearing noon and Mark is sleeping like an angel. He'll be fine as long as we don't feed him, but of course that's not an option. The docs are working out exactly how to move forward while avoiding any further owees. It looks like we'll be here for another day or so-owee.

W

p.s. I arrived home to discover that sometime during the last week our deep-freeze died. It was half full of meat.

Oweeee.

Encore

2008-08-11T15:40:00.000-07:00

This afternoon Mark's nurse called 911 because Mark was going into respiratory distress and was not responding to the treatment she was giving. This event was very similar to the last one exactly one month ago. The respiratory problems seem to be brought on by acute abdominal pain.

911 response in our area is very quick. Within just a few minutes the street was lined with two police cars, a fire truck, an ambulance and then a little later a second ambulance. This brings with it all kinds of curious onlookers, from caring neighbors, to kids on bikes who had chased the firetruck down our street. The EMS workers whisked Mark out the door and into the ambulance. Erin jumped in the front while the EMS team attended to Marks needs in the back. The trip to Sick Kids doesn't take long and soon Mark is back in the trauma room that is becoming too familiar. The nurses and Docs are beginning to recognize is.

That's the story but how do I feel. I don't. I don't feel much. If anything I'm beginning to feel experienced at this. Linda too, she just turns on another mode. Feelings are shut down and surviving takes priority.

As I write this blog, as I stop to think, an ache begins deep in my chest. If I stop to focus on it I can touch my deep feelings. I close my eyes and imagine touching a button, like an elevator button. It was no number, just tiny letters spelling F E E L I N G S. I am so deeply sad at the sight of Mark thrashing on a hospital gurney. He arches his back and cries out. His legs tremble. This is not a seizure. Marks movements are too purposeful and he is conscious and responsive. There is nothing I can do. He seems so alone, because he can't tell us how he's feeling.

I lean in close so he can feel my fuzzy whiskers. This time I'm not listening for a laugh, instead I'm here to deliver some good news. I tell him,"Daddy's here and I love you".

W

Both And

2008-08-10T09:31:00.000-07:00

I've been hearing a little feed back about my blogs, especially the one called T minus 45 of Another Sort. It seems that some found it to be dark and brooding. Perhaps it was. There are days when I feel like that and the purpose of the blog is to share those feelings. A journey always has its ups and downs, this one is no exception.

Today Mark is resting quietly. Helen, a respite nurse and friend is with him. If you asked me how he's doing I'd say, "quite well". That answer of course is relative to his current circumstances. Mark is very week and can't even lift his arm. He's barely able to move his head from side to side and only does that when he feels the return on investment is reasonable. The very sad truth is that Mark is fading away.

As we sit and watch this process some very deep philosophical and theological questions come up, meaning of life questions. I'm not going to float all my questions in this blog as they will provoke more turmoil than peace. I will say that the questions seem to boil down to one of the two following ideas. Are we supposed to live through and learn from this situation or are we supposed to rise to and overcome. I suppose seeing this as a battle then begs the question, which weapons do we choose?

The most conventional weapon, at least in this time we live in, would be medical science. The most strange, even to many followers of Jesus, would be faith. Faith as a healing mode is only strange because we don't understand it and so many of us live in the modern era that pride's itself of rational knowledge. I have to say I include myself in that group. Although I have embraced the Christian faith as a guide to many of my decisions, I have to say that what I have embraced the most, is the idea of being restored to the Creator by the sacrifice of Jesus. I have bought into, believed in, the idea of being separated from God by my own wilful actions, and then being redeemed or restored by the gift from God. It's a soul level restoration.

Mark has had this disability from birth. Part of me believes that's just the way he was made. That's the way he's supposed to be. Then another part of me, the timid unsure part of me, believes that there is something wrong here and we need to cry out to Creator to make it right. So, because I can't know for sure, I do both. I live with Mark and celebrate the gift that he is everyday, and I cry out to Creator to redeem this wobbly little oops. I think it's what we mean when we pray, "on earth as it is in heaven".

Let's not miss the wonders that are part of our journey by wishing for something that we think is better. At the same time, let's not miss an opportunity to experience the awesome redeeming power of the Creator who is Love. It's both and.

Normal

2008-08-09T05:08:00.000-07:00

I woke up early this morning. My bladder was screaming, "Run, run". I have to be careful not to jump out of bed to quickly. Our bed has been pushed out of the way for renos, and my side is up against the low sloping side of the front dormer. So, carefully I make my way down stairs. Regardless of my own urgent needs I stop in to see Mark. He's awake. I drop the sides of his bed and look into those big brown eyes. I kiss his cheek and he laughs, everything is back to normal. I set up his morning feed, crush the seven pills that are part of his normal, and then I stumble off down the hall feeling like a Diet Coke with a Mentos in it.

Aaaaaaaaaahhhhhhhhhhhhhhhh! normal.

Long Journey, Long Journey

2008-08-08T13:06:00.000-07:00

Mark's room was on hold all week. Like an unused movie set, it was dark and quiet and peaceful in a disturbing way. Meanwhile, one floor above things were looking like a war zone. Wayne and Linda were playing "This Old House". The third floor loft is the master bedroom and yet it has somehow been missed during the decade long makeover. Then on a rainy day in July the roof in the rear dormer sprung a leak. That was it, our cue. So for the entire week that Mark was away and we were supposed to be experiencing a little relief from the daily grind, we were busting our backs.

After the first day of demo we looked at each other and wondered if we were completely nuts. As with all reno projects, it always ends up being worse than you thought, taking longer and costing more. By Wednesday evening it was clear that we were not even close to winning. With Mark coming home on Friday, winning would look like a clean house. So on Thursday we pushed our selves to get past the really dirty stuff. By 8pm I was up a ladder, leaning over a stairway, and hacking off a huge and useless part of this old house. It was probably a hundred pounds of hundred year old dirt, wood and plaster. It was stubborn but I was more so. Finally it came crashing down, safely. Then we tossed it all off the back roof. In the end the loft looked like a big mistake, a hole, a mess. So, how in this craziness does one find rest?

Linda and I have been married for 28 years. We have journeyed together through thick and thin. Unlike many of our friends, our marriage seems to come together in times of difficulty. We've almost always worked together and often dream about doing crazy things together. For our 25th anniversary we jumped on a motorcycle and went for a 2000 mile ride. We are a team and we find ourselves when we jump in over our heads. This week was rest simply because we were able to be ourselves, doing what we do best, and doing it together.

Having Marky back home is wonderful, but it means that we must set aside ourselves in order to care well for him. That's not such a sacrifice because, well because he's Marky.

As I write this post, Marky is in his bed, Mommy has climbed in too and their listening to Dan Robins singing Long Journey. The words remind us that life is a journey, a journey home. It also reminds us that we're not alone, we're journeying with Jesus.

Dad

Yellow Submarine

2008-08-05T04:15:00.000-07:00

Here I am in Marky's room, early on Tuesday morning. Mark is still away at Safehaven and the room is strangely quiet. Although Mark himself is so quiet these days, all of his pumps can make his room sound like a submarine.

I close my eyes and try to imagine being in a sub with Marky and then the Beatles lyrics come into my head.

We all live in a yellow submarine
Yellow submarine, yellow submarine

And our friends are all on board
Many more of them live next door
And the band begins to play

We all live in a yellow submarine
Yellow submarine, yellow submarine
We all live in a yellow submarine
Yellow submarine, yellow submarine

[Full speed ahead, Mr. Parker, full speed ahead!
Full speed over here, sir!
Action station! Action station!
Aye, aye, sir, fire!
Heaven! Heaven!]

As we live a life of ease (A life of ease)
Everyone of us (Everyone of us) has all we need (Has all we need)
Sky of blue (Sky of blue) and sea of green (Sea of green)
In our yellow (In our yellow) submarine (Submarine, ha, ha)

We all live in a yellow submarine
Yellow submarine, yellow submarine

.....

Marky's at the helm
and he's having quite a time
and the rest of us are here
we're all feeling quite sublime

We all live in a yellow submarine

What a trip, thanks Mark. We miss you, see you soon.

Dad

Missed But Not Missing

2008-08-03T21:54:00.000-07:00

This week Mark is in a respite home called Safehaven. We miss having him here with us but this time affords us the opportunity to do things we can't normally do.

This week both Mom and Dad are on holidays and are doing more reno work on the house. Tearing down old walls ,making dust fly, and bringing yet another room up to date. Doing this with Mark at home would be impossible. We'll get things cleaned up before he comes home on Friday.

Safehaven is not far away so we drop by for visits from time to time. The staff there are very good and they love Mark almost as much as we do. However, Mark makes it clear to us that he likes his room better. We really like having Mark home with us too, but a respite break helps keep things sane around here.

I know you're probably wondering how sanity and renos fit together. Renovating our old house is one of the things that keeps us together. Linda and I really love to rip things up and make them better. We bought this old house in 99 and have been fixing it up at a rate of one room per year. This year it was a toss up between the laundry room and the master bedroom. A leak in the roof helped make that decision for us. So over the next few months we will be chipping away in the loft. This week was demo week. What will follow will be a slow and steady transformation, all the while caring for Mark.

We may be busy but we're missing our precious Marky even though he's not missing.

Dad

T Minus of Another Sort

2008-08-01T05:06:00.000-07:00

This morning, like most mornings, I make my way to Mark's room. Stumbling, one foot after the other. My brain is not fully engaged. All I can think about are the very basic necessities: a pee, a yogurt and a smile from Marky.

When I peek over the canvas sides of his bed he's almost always awake. This morning he needs a diaper change, so I take care of that first. Then I take care of my need, that smile or better, a laugh to fuel my day. I lean in and bump noses, but there's nothing. I try again, and then there is a tiny sound, a whimper. I turn my ear to his mouth and ask if he's trying to say something – another whimper. Mark is telling me he's not feeling well.

Yesterday morning was so good that it was easy to forget what is really going on here. This morning there is no mistaking, Mark is dying. That's the sad truth, but what really brings the tears is that he has no voice. Mark can't even tell me how he feels in all of this. There are times when I strain to imagine what he's thinking, and then in some sad way I try to be his voice. This morning I can't even do that.

T minus of another sort is so similar to any other lift off. It involves careful preparation: packing as much love into his little soul as he can stand, making music and keeping him comfy. All this so that Mark can overcome the gravitational pull of this life and blast off...

...to infinity and beyond.

Dad

T Minus 45

2008-07-31T05:02:00.000-07:00

45 five minutes to lift off on what appears to be one of the finest mornings of this summer season. Launch preparations are going well as I prepare to fight the gravitational pull of my bed and head out to work. The fuel for this journey is pure and powerful and wonderfully simple. I lean in close and let my nose touch Marks, and then there is an almost imperceptible, single syllable laugh. That's it, that's enough to launch my day.

To infinity and beyond ;)

Get It?

2008-07-30T22:10:00.000-07:00

I spent the evening with friends who get it. The reason they get it is simply because they're tuned in. Sometimes when we listen we aren't really paying attention. Instead we're listening to the little voice in our head that is busy telling us what they should be saying. Tonight was not that kind of experience. These friends are all musicians who have heard about Marky's current situation and want to help. They took me out for supper and listened carefully as I told them about why I think Mark's room is so special. I told them that although Mark can't speak, I think he has something to say. I went on to say that I think we all have a role to play in giving him a voice. In order to do that, we have to listen to the silence, and read his eyes. It is a deeply spiritual process. To some it's just deeply strange - they stay away. The few that have dared to enter have all been touched by the process. It is in these very special circumstances that we stretch and grow in ways that otherwise would not be possible. That's the "it". Pay attention to life, especially the difficult stuff.

We've been paying more attention lately and have invited others to join in the process. Those who will come will stretch (maybe painfully) and grow. My musician friends will come and share from their own gifts and will leave with a little of Mark's gift (quiet love).

It all makes me wonder if we shouldn't be paying more attention, even to the little things.

Sunday - day of rest.

2008-07-27T13:36:00.000-07:00

I grew up in a time and place where Sunday was called, the Lord's Day. It was a holy day of rest. We were up an at em bright and early. It was a whole lot of frenzy which included baths, hair dryers, white shirts and ties, dresses and hats and of course our bibles. Then there was always the last minute snag when my sister would decide to change dresses. "Hurry up we're leaving in five minutes", Mom would say. Then it was off to the first of three services that day. Each one was separated by the drive back and forth. This was, The Lord's Day of Rest. It was a time of fasting, a time of focusing on the things of the Lord. Above all it was a time of toy abstinence. On Sunday, one did not play with toys that brought pleasure for a season.

Today we live in a different time and place. This morning, on this Day-of-Rest, we slept in. I got up to do a pit stop with Mark, diaper and a splash of fuel. Then it was back to sleep. When I got up at noon, I stumbled down stairs to find Mark being cared for by Helen (a respite worker) and Linda on a lawn chair out back. With a few hours of respite remaining we decided to go for a motorcycle ride in the country. We headed NE and ended up at Whitamores Berry Farm. We bought some fresh raspberries and a blueberry pie and turned our motor toy towards home. That was a day of rest.

By four thirty Linda was leaving to go to Sanctuary and I was sitting down to write this. Sanctuary's service starts at five and runs through to about seven thirty. Lately we've been taking turns going. Big sister Lynn offered to take care of Mark so I could go too. I decided to stay home and rest.

As I finish my writing I look over my shoulder at Mark, he's resting. Mark has been resting all day. These days Mark lives in a state of sabbath. This is one of the reasons that I love being in Marky's room.

Just Another Summer Evening.

2008-07-26T19:36:00.000-07:00

It's Saturday evening, about 10:30. I can hear an ambulance siren in the distance. I look to check on Mark. The siren reminded me that it was only a couple of weeks ago that we called 911 because Mark had been crying out in pain for a couple of hours. We had exhausted our options and were forced to call the ambulance. It was the first time we had done that. Another first, like a milestone on our journey. It was late in the evening and it cost most of us, most of our nights sleep. Linda stayed at the hospital with him until they were released at six in the morning. For Linda there was no sleep. In the end, after tests and x-rays there were no conclusive answers, maybe it was bowels pains they thought.

Now the siren has gone, Mark is resting peacefully. When he sleeps it's hard to imagine there's anything wrong with him.

Welcome to Marky's Room

2008-07-26T18:17:00.000-07:00

Mark Rumsby was born October 28, 1994. The birth was as normal as any can be. In other words, there was no birth trauma, but soon it became clear that Marky was not all there. By eight months he was not able to lift his own head and by 24 months he was still unable to crawl. Doctors have never been able to put a label on what's holding Marky back. He's simply suffers from a genetic defect that is to small to show up in tests, yet significant enough to affect his development. Marky is very special.

Somewhere between the age of three and four, he started to show signs of epilepsy. At first the seizures were very small, moments of absence. Drugs helped to keep them in control and by the time he was five, he was seizure free for a year. In that year he made great progress. At one point he even walked across the living room with no walker at all. That was truly the high point in his life.

Today Mark is confined, by his weakness, to laying in his bed. His seizures are out of control, ranging from full blown, grand malls to constant non-convulsive seizures. Like a computer that crashes six to ten times a day, it makes life very difficult. Mark is very weak, unable to scratch his own nose. He can't eat, he's fed and medicated through a G-tube. He can't go to the bathroom ( no further explanation required). His life has been reduced to breathing and sometimes that doesn't work so good either. He lives in a hospital style bed complete with oxygen equipment and a super snot sucker and his own little DVD screen.

For the family it is a sad time, like watching the lights go down at the end of a really good show. Every morning we go to his room, he's always wide awake and clear in the morning. We look for the look. Those big brown eyes that say so much. These days, that look is like an encore to the show that was Mark Andrew Rumsby.

Processing this sadness has led each of us to a new level of awareness of our relationship with Mark, each other and the world around us. In Marky's Room life is reduced to a simple gaze. All that matters to him is to be able to look into our eyes. All that matters to us is the same. If he laughs, it's like icing on the cake. Is this profoundly simple approach to relationship transferable? Is this something we can share?

Marky's room has become a special place. We have invited any and all to come to his room to receive the gift of Marky. Friends have brought their kids and their pets. Some have brought guitars and flutes. Some come to pray for Marky and his care givers. Some have learned to come and pray with him. Although Mark is so weak and appears uninvolved, he has on several occasions proven that he is all there.

Part of Mark's support team out of Sick Kids Hospital is a music therapist. Fayona comes every other week and plays and sings to Mark. Once as she sang to him while he slept, his hand began to move. The movement was significant and in perfect time. It gave me goose skin. This boy can't reach out to touch the ones he loves but he responds to music. I wondered for a moment if I had any friends who could do this with him. Suddenly all I could think of were musician friends. There was Dan and Doug and Greg and Les and Phil and Sharon and Brian and Brian and Sam and Paul and WOW! Suddenly I realized just how many people I could share their gift with Marky, and how many could be touched by his.

This blog is our attempt to share some of what is going on in this room. We will share the pain and sorrow, and we'll share the joy and celebration. We'll make music, pray and turn to the Great Provider for strength, courage and life.

Stay tuned.