This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Saturday, August 21, 2010


I have definitely lost my stride. If I ever had it. The past few days I have felt like I have been trudging through mud up to my knees. I'm tired and I have no motivation.

Joel has been very irritable once again. It's going on three weeks more or less now. The first week wasn't too bad. I still felt optimistic that it was all just going to pass. Every now and then Joel will have one or two "off" days and it's no big deal. But as time goes on, it starts to get much, much harder to see the end of the unhappiness ever coming.

I guess I'm going to have to bring him in on Monday, or at least contact a doctor to see what we should do about it all. It is odd, the last time this happened, it happened at almost exactly this time of year. At that time Joel was thoroughly checked and when they couldn't find any reason for it, we put him on meds for neurological irritability.

And slowly, slowly, over time Joel "came back" to us. I got my playful, smiley, noisy little boy back.

But there is always this fear. That THIS time we won't get him back. That this irritability is a sign of something ominous. Or even just that it will take so long to get him back, like it did the last time. That I will have to wait for MONTHS.

You know what? Dying sucks.

I know that Jesus has vanquished death. I'm not afraid of death.

But the DYING part of it sucks. Really. I don't know who it is worse for, Joel or me. In some ways it's a moot point. When it is your child, it feels like it IS you. In fact, I have had to correct myself many times. Many times I have caught myself about to say MY neurologist, MY palliative care team, etc. etc. And then I correct myself. I don't say Joel's. I say OURS. Because that is really what it is. A group endeavour for the whole family, like it or not.

So I've been feeling a bit down in the last couple of weeks. I did have some plans of what I would do with the last couple weeks of the holidays, but... each day that Joel is not his happy self, each day that I have to sit and hold him for half an hour or more while he cries, each day that happens and I just can't figure out what the point is of actually organizing my bedroom.

I feel pretty wiped. Right now, one of those mythical days I joke about where I stay in bed under the covers eating potato chips and reading books, wow, one of those days looks pretty good. But there really isn't much you can do to escape when your child is not happy. Sure, I still go out for respite, but it's not without it's trade-off in guilt, knowing you left your unhappy, maybe even in pain, child behind.

I might be depressed. I sure am feeling sorry for myself. And helplessly immobilized.

There is something else I'd like to say though. On a more positive note. For those of you who prayed for my Dad, you especially will appreciate this. I just want to let you know that my Dad went in this week for a check up with his oncologist. Who told him that he now had a second life. He told my Dad that a healthy person who endured a perforated colon as long as he had would only have had a 50% chance of surviving the surgery. He felt that for my Dad, in the state he was in after chemo, with some heart damage, low blood counts, all the rest, that it was only a 5% chance that my Dad would pull through the surgery.

It's easy to forget, or to minimize it after it's over. But my Dad really was at death's door. And I really believe that God answered those many prayers of people asking Him to let my Dad stay with us a little bit longer. So thank you for praying.

It's a wonderful gift. My Dad is using his walker and is slowly able to walk a few steps without it. It is a slow recovery, when you have been as ill as my father. But it is so nice to have him come over to our house again, and see Caeden's face light up when Grandpa arrives.

Right now for me, its a slow trudge through the mud and the sludge. I hope I get to the other side one day. Does anybody have a helicopter?

1 comment:

  1. I hope you get to the other side one day too. I hope you get your happy Joel back also. Thinking of you...