Welcome to Marky's Room

Mark Rumsby was born October 28, 1994. The birth was as normal as any can be. In other words, there was no birth trauma, but soon it became clear that Marky was not all there. By eight months he was not able to lift his own head and by 24 months he was still unable to crawl. Doctors have never been able to put a label on what's holding Marky back. He's simply suffers from a genetic defect that is to small to show up in tests, yet significant enough to affect his development. Marky is very special.

Somewhere between the age of three and four, he started to show signs of epilepsy. At first the seizures were very small, moments of absence. Drugs helped to keep them in control and by the time he was five, he was seizure free for a year. In that year he made great progress. At one point he even walked across the living room with no walker at all. That was truly the high point in his life.

Today Mark is confined, by his weakness, to laying in his bed. His seizures are out of control, ranging from full blown, grand malls to constant non-convulsive seizures. Like a computer that crashes six to ten times a day, it makes life very difficult. Mark is very weak, unable to scratch his own nose. He can't eat, he's fed and medicated through a G-tube. He can't go to the bathroom ( no further explanation required). His life has been reduced to breathing and sometimes that doesn't work so good either. He lives in a hospital style bed complete with oxygen equipment and a super snot sucker and his own little DVD screen.

For the family it is a sad time, like watching the lights go down at the end of a really good show. Every morning we go to his room, he's always wide awake and clear in the morning. We look for the look. Those big brown eyes that say so much. These days, that look is like an encore to the show that was Mark Andrew Rumsby.

Processing this sadness has led each of us to a new level of awareness of our relationship with Mark, each other and the world around us. In Marky's Room life is reduced to a simple gaze. All that matters to him is to be able to look into our eyes. All that matters to us is the same. If he laughs, it's like icing on the cake. Is this profoundly simple approach to relationship transferable? Is this something we can share?

Marky's room has become a special place. We have invited any and all to come to his room to receive the gift of Marky. Friends have brought their kids and their pets. Some have brought guitars and flutes. Some come to pray for Marky and his care givers. Some have learned to come and pray with him. Although Mark is so weak and appears uninvolved, he has on several occasions proven that he is all there.

Part of Mark's support team out of Sick Kids Hospital is a music therapist. Fayona comes every other week and plays and sings to Mark. Once as she sang to him while he slept, his hand began to move. The movement was significant and in perfect time. It gave me goose skin. This boy can't reach out to touch the ones he loves but he responds to music. I wondered for a moment if I had any friends who could do this with him. Suddenly all I could think of were musician friends. There was Dan and Doug and Greg and Les and Phil and Sharon and Brian and Brian and Sam and Paul and WOW! Suddenly I realized just how many people I could share their gift with Marky, and how many could be touched by his.

This blog is our attempt to share some of what is going on in this room. We will share the pain and sorrow, and we'll share the joy and celebration. We'll make music, pray and turn to the Great Provider for strength, courage and life.

Stay tuned.