Back to School

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

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!

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

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...

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

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.

W

Misplaced Normal

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