It's so hard to believe that we've already gone six months. As I mentioned in my last post, time flies. When I go through everyday life that's all fine, but when we start putting a time line to things then it makes me sad to think that we are slowly getting further and further away from our time with James. In many ways it seems like just yesterday and I am so thankful for this, that even though time keeps going, my memory of our time together is still very clear and real. And I try to remind myself that even though I get this feeling that he is being left behind ... he is actual ahead and we are the ones behind. We look forward to the day when we will "catch-up" to him.
My memory works more on time periods then actual numbers. Last weekend was a hard weekend for me. Instead of the number 23 I remember the Victoria long weekend. This is a weekend that is always well remembered in our house, but now for different reasons. Nine years ago we got married on the Victoria long weekend and so it's always a time to reflect that we have passed through another year of marriage. This year instead I remember how everything sort of "crashed" last year on this weekend.
We had been going through a period of time where we thought that we had James a bit more figured out and that we were making progress on getting him better. It wasn't until the Victoria Day when he ended up in ICU that we realized how wrong we were. In reality we didn't even realze it intially, but a week later our research had made us come to believe that we were dealing with more then what the doctors believed and that James had PAP. Last year we made a visit to Felkers Falls on the Saturday of the long weekend. We had hoped to go again this year, but a sick boy and miserable weather made us decide against it. I have quite a few pictures from our walk last year and whenever I see them I think of them as the last time James was considered "half-healthy". And my second thought always is "I wonder what his SATs were? Poor guy should have been on oxygen." And so began our extended hospital journey, from one holiday to the next ... as I will also always remember the July long weekend (Canada Day) as our first time at Sick Kids when we had just been faced with the reality of how sick James really was after the doctors had sat us down to tell us that we had a "very, very sick boy" and his illness was terminal without treatment, possibly not if the treatment worked.
So although there are certain dates in etched in my mind, I don't always clue into the actual date to remember what happened on that date, instead I remember events that surround the date. But all in all the past six months have been going okay. Sometimes I feel bogged down by the fact that things aren't getting any better. I guess I thought that there would be a steady and slow progression to this all, but in reality their was only a progression during the first month or so and now it's just a range of mountains that we climb and stumble back down over and over. I am not consumed by this, but there are still times were I am surprised by how much I am still affected by it all, especially because it usually appears out of nowhere, taking me by complete surprise when I thought I was doing fine. I have come to realize that this is how it will be, and it's likely going to take a very long time before I can actually say that I've made further progess, and so we just keep climbing through the ups and downs, always looking ahead.
Although unplanned I did have a chance to stop by the cemetary on Friday. We've only stopped once before and then it was snow covered. There wasn't much to see since we still haven't ordered a stone. I started on the process but wasn't happy with the place we went so now I have to look around yet before we make a decision ... sort of falls in the "time flies" thing, where I suddenly realize another week or two has gone by and I haven't gotten around to it again.
"Praise be to the Lord, to God our Savior, who daily bears our burdens. Our God is a God who saves; from the Sovereign LORD comes escape from death" Psalm 68:19, 20