Saturday, March 7, 2009

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.

Thursday, February 12, 2009

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.

Monday, February 9, 2009

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.

Sunday, February 8, 2009

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.

Sunday, January 4, 2009

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.


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.

Tuesday, December 30, 2008

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.

Friday, December 19, 2008

Posting Frequency Indicates What?

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."