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!

Monday, February 22, 2010


How many times have we said it, or heard it said? Don't judge a person until you have walked a mile in their shoes.

I think most of us, at least, myself, anyway, have said it quite brightly and glibly. And with a lot of confidence. We are being compassionate and understanding people this way, and, of course, we don't actually have to walk in those shoes.

I actually think it is a sort of stupid expression, in fact. I mean, shoes? What do those give you? Blisters? Sore feet? Corns? Bunions? I know what the expression MEANS, it just seems to me that it lends itself to the more superficial.

How about "You can't know what it is like, until you have been in the same war?" Or "Reserve judgement until you've gone through an earthquake yourself." At least that would be a bit more serious, for the more severe occasions, no?

I have been thinking lately of the time when I worked with children with CP(Cerebral Palsy). I must admit, I think that I somehow felt, however unconsciously, that this somehow gave me immunity myself from having a child with special needs, or maybe "severe and life-threatening needs" says it more clearly. I might have had this vague notion that because I liked these kids and was warm and caring, it should be my get out of jail card from having this sort of thing affect my own family. I don't know. Maybe that is just hindsight. After all, most of us don't think something like this will ACTUALLY happen to us, no matter what we do. Hence the word "shock."

I can tell you this. I did admire the parents, and thought they were great people. I was also sometimes just a wee bit critical, deep inside of myself. That is not hindsight, just the truth. I think that I truly thought if I were the parent of those children, I would do a better job of making sure that physio and stretches were done everyday TWICE as they were supposed to. I was critical of them, wondering if they even managed half of what was needed, and then their children need painful surgeries and all that goes with it, because they couldn't put things aside for their child. Yes. I did think that way.

I had no idea. There is looking at those tiny little pointy toed high heels, and then there is actually trying to run the marathon in them. Two different things altogether. And chanting the platitude like a mantra will never actually drive that home to you, the way that, well, doing it will.

Now I look back on those parent's faces. I look back on their cheerful practicality while they talk about their child. How they seemed upbeat and confident and adjusted with everything. It sure fooled me then.

Now I wonder: Did they go home and cry in the shower that night so the other children didn't see it? Did they lie awake and sorrow over the future, desperately afraid of the eventual failure of their child's health and at the same time drained at the thought of having to take care of them until they were "old?"

I know more now. I received an education.
Now I know how anything LIKE a schedule can keep slipping out of your fingers until you sit in your pj's until 1pm in despair of every finding one for more than a day. Now I know how things like physio and stretches must constantly war with flu's and colds and Dr. appointments and all sorts of other difficulties, not just for a couple of days, but for weeks. Until it seems like the days with out it are more numerous than the days with it.

I wonder at those faces. What was behind those happy, friendly smiles? Oh, nothing sinister, I know they were not false faces really. They just didn't show the whole story. They didn't' show the sadness, the pain, the frustration, grief and sorrow and loss. Or maybe I just didn't see it. Maybe I wasn't looking. I don't' know.

I know a lot more now. Experience is a very harsh teacher, but boy, will you ever listen when she speaks. I'm not sorry I learnt these lessons. I am sorry that I didn't know more at the time, didn't see more, didn't care or love more...

But I know now. If nothing else comes out of this whole thing, I hope that I will forever see more, understand more and care more. I hope I will love more, and in that loving I will risk more, share more, and give freely, without reservation or judgement.

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