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!

Friday, January 29, 2010


This blog might be a bit of a ramble, and I hope you will pardon me for that. It is just that the what I am talking about has a lot of ambiguities for me, so I am not totally sure where it may take me.

I try not to get sucked in to too much introspection about myself, if possible, which is hard for me as I think I am a bit of a deep thinker (and modest too!). Dwelling on oneself does seem to lend itself to two opposite, but equally harmful directions. If you think about yourself in a positive way too much, you will find yourself proud. And if you dwell upon the negative, you will find yourself depressed and immobilized.

Not to mention that it often bores the heck out of other people. So, please forgive me. But sometimes I feel that I have "lost myself." Ugh. There is an expression that gets put to too much use, and here I am doing it myself.

Thing is, since Joel has come along, I feel like my whole life has been swallowed up, for good or for ill. I feel like most of my personality has been submerged by a title: Joel's Mother. Like that is my one defining aspect, the title that sums up my existence.

I mean, when we go to our frequent stops at the hospital for this or that, it's truly my name. I'm not introduced as "Karen Smith" very often. I hear "This is Joel's Mom." Or the nurse walks in and says "Are you "Mom?" To which I should perhaps reply "Well, certainly not YOURS." It is the only thing that matters here, to these people.

Sometimes it carries over other places too. Someone has told someone else about Joel, and I am referred to as "Joel's Mom."

It doesn't really bother me as I understand the utility of using the title. I mean, I AM Joel's mom.

But sometimes it feels much deeper than that. I feel that something has taken over my whole life, become its' whole driving focus. Perhaps like I myself am defining myself in this new life. As if every thing I discuss, everything I do, all my interests have become attached to this "world" of my PBD child.

I wonder if I bore people absolutely to death? Am I so obsessed with Joel and his health, his future, his care that people give that internal "Oh no, here we go again." when I start to speak? My poor parents who come to tea every week, and listen to nothing but Joel. Joel and his feedings, Joel and his cold, Joel and his liver, Joel and his physio. Or, perhaps worse, me. Me and my support group, me and my fears, me and my grief... Me and my blog!! Ha ha ha ha.

Sometimes, after I have finished explaining something about the world of PBD, I find my mind blank. I cast about for some other topic, and find.......... nothing. "What has happened to me," I think. Parts of me have just wasted away, or been choked out.

Here is the conundrum. I need to be able to talk about Joel, about my grief, about the whole nine yards of it, AND I need to talk about something else, I need to hear about other peoples' lives, I need to discuss ideas and events unrelated to myself!!

A wise friend who can understand this is priceless. Someone who will listen with patience, maybe even interest, as I go on and on about what I am going through. And someone who will bring up other topics, and jump in and share their own life and troubles with me. It is what I need, and it is good for me.

On the other hand, I really hate it when people are afraid to share their own sorrows and troubles because mine are "so much worse." Firstly, who wants to be known as the "Job" (as in biblical man of ultimate suffering) of the neighbourhood?? Not me. Secondly, it really isn't good for me to become locked up in my own suffering.

I promise not to minimize your troubles just because of mine. Ok, truly, if you are very upset because you ordered a blueberry muffin and got a bran muffin instead, I might laugh or take a poke at you. But I would have done that BEFORE Joel too. I won't think, in my mind, when your child is struggling in school, "Ha! My child might not even get to school." Ok, honestly, I might think that, cause I am human, but I promise you that I won't let an unkind thought like that dwell in my mind for long. My problems do not make yours any less, please give me the credit to understand this. I do want to be a friend and get out of my own self pity too!!

I don't want to be swallowed whole by this, swallowed up alive. I don't want to be a plant choked off by this weed until I am all scraggly stems with blighted leaves. I want to have flowers too! I want to be a person with interests and thoughts that go beyond just this one driving part of my life. I want to be developed, and broadened out and whole. Yes, that is it. I want to have flowers again, in my mind and heart.

So, my dear friends, I ask you to try your best. First: listen. Second: talk. About yourself. And anything else that interests you. And I will try to follow along. Maybe in time, there will be buds again...

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