Memories help

Missing Trevor hurts so much. But he had such a full happy life. There isn't one thing that I wanted to do with him that we didn't do. He went to Disney world 3 times. He ate sand from the Atlantic ocean, Gulf of Mexico, Hayward lake in BC and stones from the Pacific ocean. He went kayaking in the Pacific ocean several times. He rode on a Greyhound bus twice at Christmas. He held new born puppies and was gentle. He got to touch a new baby on his tray and was gentle. He went to school, went bowling, swimming, to Playland, on boat rides, to music programs, bus rides and much more. He went to numerous spray pools all over the lower mainland. We went for walks at Golden Ears park along Gold Creek. He went in the water at Allouette lake. He went to the Abbotsford air show, the Northwest Washington Fair in Lynden Washington. He went to Colorado for a week. And, he did it all while coping with Duchenne Muscular Dystrophy. For some unknown reason Trevor was severely developmentally delayed as well. And along with his neurological problems he had a lot of digestive problems not normally seen in someone with DMD. Trevor didn't let any of that slow him down for long.

When he'd lose an ability such as the use of his hands, he'd be sad for a week or two but then would bounce right back and figure out a new way to do things. He was so inventive. When he had trouble moving his arms so he could play with his beads he figured out that if he put the beads in his mouth and moved his head it would move his hands into the right position to play. When he could no longer lift his hands enough to play, he started saying words such as "Lun" which meant that he wanted you to go to his room, get the lamb he slept with, bring it to the living room and put it under his hand to raise it up. When he was little and still mobile he'd twist his legs in such a way that he could rest his arm on his foot. He looked like a pretzel.

Trevor was an amazing child. He was so healthy. He only had a few colds all the years I knew him. With his last colds in early 2008 he needed suctioning. He hated that. He didn't even like to have his teeth brushed. If he'd survived this one illness life would have been so hard on him. He would have had to sleep with the bipap mask on at night. I know he wouldn't have liked that. He might have adjusted to it but he wouldn't have liked it. And, whenever he got sick, which he would have increasingly, he would have needed to at the very least been on bipap all the time but more likely would have ended up in ICU on a ventilator each time. He hated that ventilator tube in his mouth more than anything else he's ever faced. God knew that this wasn't the right life for Trevor. He lived his 16 years and 10 months to the fullest. He'd done all he needed to do in his life. Now it was time for him to be free of the disease that had robbed him of so much all through his life.

I'm glad that the decision was clear in the end. Not one person questioned the decision to remove him from the ventilator. And, we weren't rushed into doing it. We gave him time to recover from the unknown infection that made him sick. But in the end it was clear that his body just couldn't do it any more. I'm sorry we didn't have longer after the tube came out but again, how quickly he started to have problems just made it clearer that he was truly at the end of his life.

And, we know that the end was truly just the beginning for him. As I thought through the decision regarding the ventilator I thought of what a friend had told me once. She was talking about the decision to have chemo if she had cancer. She said it was a matter of "chemo, or heaven" chemo or heaven. I thought for Trevor that it was a matter of "ventilator or Heaven" Really in those terms there was no other choice.

I miss him something awful. I don't remember it hurting this bad after Kayda died. But my circumstances were diferent then and I wasn't really allowed to grieve openly. I know I've done a lot of grieving for Kayda on anniversaries and birthdays over the years.

I started to put away the Christmas things today. That was hard as Trevor had watched me put them up. He loved all the lights so much. I'm so glad we put everything up early this year. He had about 3 weeks of enjoying the lights.

I know I'll miss Trevor forever. I still miss Kayda and it's been over 8 1/2 years since her death. But I also know that God has one or more children left to care for. I look forward to seeing who comes next.