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.
Monday, August 18, 2008
Sunday, August 17, 2008
28
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
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
Saturday, August 16, 2008
Home is Where Your Heart Hangs Out
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.
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.
Thursday, August 14, 2008
Suffering Differently
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
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
Wednesday, August 13, 2008
Owee
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.
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.
Monday, August 11, 2008
Encore
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
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
Sunday, August 10, 2008
Both And
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.
W
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