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!

Thursday, December 31, 2009


Several months back, we were in for an appointment with one of Joel's many doctors. The doctor noted to me that I seemed to be doing much better, and I seemed to be more at peace with Joel's diagnosis. (I am paraphrasing here, as I no longer recall his exact words) I think the words were very well meant, and were supposed to be encouraging to me.

I am afraid though, that other than my utter suprise at his comment (because I am pretty sure he just caught me on a "good" day.) I mostly felt annoyed, or maybe even angry. Not at him though. It was the whole idea of "accepting" the diagnosis that got me mad.

Hmmm. Acceptance. One of the five stages of grief. Hmmm. Here is a shocking statement for you all: I don't think I will EVER reach that one. That must be shocking on many levels, so I'm afraid I have some big explaining to do.

Some of you might think, based on my last two blogs, or on some of the things that I have said, that I have already reached that stage of "acceptance." I can assure you, as illogical as it may seem, I don't think that it is true.

I do remember reading in a book once (I think it might have been a Margaret Laurence book, but I really don't remember for sure) that we don't ever really come to accept or understand anything that happens to us. We just get used to it. I am pretty sure that is much closer in line with what has been true in my life.

I have not at all come to accept this. I have gotten used to it. It no longer shocks me in the day to day, because it has been happening for over a year now. But I can assure you, all I have to do to summon up my feelings of shock and disbelief, is to actually think about it. When I really think about the fact that Joel is blind, is delayed, is slowly dying, I just can not believe it. Surely not!! Most of the time, though, I don't think about that. I have gotten used to daily life as it is, and as it is no longer suprises me much. This is not acceptance, it is just familiarity.

I know I wrote previously about how much I love my boy and how I love his cute blue roaming eyes. I meant every word. I meant that all the love I have for my boy has somehow managed to block out what I used to see. I used to see those jiggly eyes, and I felt immense pain because every time I saw them I thought of how Joel could not see and how his eyes never stayed on me or showed me "emotions" or all that, you know.... regular eye stuff. I can't see that anymore when I look at those eyes, because all my love for Joel blocks it out and I have learned to see how Joel is thinking and feeling with those very same jiggly eyes that would puzzle a stranger. I understand them now. They no longer mean "blindness", now they mean "Joel."

But that is not to say that I have "accepted" Joel's blindness. Or any other thing happening in his body. Acceptance sounds so.... so.... I don't know. So acquiecent, so aggreeable somehow. NEVER!! I can never, ever see that what has happened to Joel is not something terrible and wrong. Wrong, wrong, wrong! Not as in morally wrong. Wrong as in "It was NEVER meant to be this way!"

That might shock those of you who know how I feel about God and His plan. Yup. Look, this stuff isn't always logical. Well, I think there is a sort of logic to it, but it is not a clean, clear cut logic. It is not a 3+2=5 type of logic. It is more of a very long algebriac equation. You have to solve a lot of variables before you can make head or tail of it. That is grief.

But to get back to it all. Ever night the same thing happens in our house. I inform Caeden that it is bedtime. He informs me very sternly and with great emphasis that he is NOT going to bed. He doesn't WANT to go to bed. He won't do it. And every night the same thing happens. Caeden is put in his bed and the lights are out, and he sleeps. And he and I understand one another perfectly. He can not "accept" going to bed. And I will never be angry at him for that. It is only natural. It is the way of Caeden, and I understand him. He understands me too, when he voices this nightly protest. I will put him to bed. And in the end, he will sleep. And there are absolutely no hard feelings between us. In fact, we end the day with a big hug and kiss.

So it is with God and I, but the roles are, of course, reversed. I will feel and voice my protests. God understands me perfectly and He is never angry with me about these feelings and protests. In the end, things will happen as they must, and there will be absolutely no hard feelings on either end.

It is not that I think God caused this. I do know He could heal Joel, but I knew from the beginning that He wasn't going to, at least not right now. It is a very good analogy, I think, when the Bible compares God to a parent. Not the sort of parent who will make sure that every single thing in life is given to the child and ever single pain or inconvience is spared, I am afraid. No, really, I am thankful. It seems to me that God is a very good sort of parent. The kind of parent who cares that His children grow up strong. Who knows that true happiness is not learnt from getting all we want, but from learning how to be happy even in and through all the difficulties and pain. Those are the sort of children to be proud of. Healthy and vibrant, instead of twisted and sickly.

And also the kind of God who takes great joy in transformations. Those medieval alchemists were always trying to find a way to change the everyday into pure gold. God is the real alchemist, because He will transform the most horrible things for you into something truly beautiful. But I don't think what happens in our world is ever the "A" plan. Yes, we have screwed up the world ourselves.

We are seeing plan "B." And because God made up plan "B" too, He is waiting to tranform the horrid into the lovely. I wish greatly that all that was horrible, and terrible, were not here in this world. But I am grateful that God is here, with us through it all. And one day, Taaadaaa! Beautiful.

So there is a part of that twisted up algebra I was talking about. And that is why I think I will never "accept" what has happened to Joel. It is wrong, it is NOT how it was meant to be with our children. And why I know that God understands my feelings and protests. And why I don't think my feelings and protest will change anything. And why I will do my best to let God transform this horrible thing into something good. I trust Him. He is a good parent.

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