Kiowa Flute Prayer

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

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

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

Mark is feeling better.






What more do I need to say?

Happy Birthday?

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

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

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.