Hope

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

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

Why the Wait?

So why the wait ?

At the moment of his birth, we knew

that Marky was going to be short turned.

He would take a different route,

He’d leave us behind.

We never knew when.

So why the wait?

Even now, in the moment,

It seems like he’ll just stay

For a little while longer.

Marky lays in his hospital bed,

tripping on morphine, staring at the ceiling.

So why the wait?

It seems like he’s waiting for Jesus

to come to the door and call his name.

We pray.

We are many,

and the fellowship is intense.

So why the wait?

So Jesus knows, right?

There’s a perfect plan

A perfect time

In the suffering we are made whole,

He is made whole.

So why the wait?

Spitting Nails

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

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

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

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

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

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

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

Resilience or Tensile Strength

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

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

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

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

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

I'm looking forward to what hope tomorrow brings.

Who Knew?

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

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

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

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

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

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

It's Been a Too Long Time

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

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

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

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

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

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

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

READY FOR THE TIMES TO GET BETTER

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

Hopin' to find a way out

I've had enough of this continual rain

Changes are comin', no doubt

(Chorus:)

It's been a too long time

With no peace of mind

And I'm ready for the times

To get better

You seem to want from me what I cannot give

I feel so lonesome at times

I have a dream that I wish I could live

It's burnin' holes in my mind

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

Happy Birthday Dad

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

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

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

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

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

Wow, what a birthday.

New Moan Ya (not)

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

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

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

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

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

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

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

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

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

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

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

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

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.