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, May 21, 2010


It's hard to imagine how such a tiny little person can leave such an enormous crater behind him when he dies. But that's what he's going to do. When Joel is gone, the hole he leaves behind will be crater-sized, as in the kind a meteor creates it makes it through the atmosphere. Even a small one makes a huge dent.

I've already been grieving for a year and a half. Grieving for all the things we will never have, and the things we are slowly losing. But there's going to be a whole lot of grieving left to do, when we no longer have Joel with us at all.

And the vacancy Joel will leave in my life is a double whammy. Because I'm losing a person I love so much and because I am losing what has become a very large part of the purpose of my life. I'd say I was also losing my job, but that makes it seem more trivial. There is passion and feeling involved in what I do for Joel. Job is too slim of a word. Vocation seems more like it.

Not only will I miss his beautiful face, and his tiny hands, his big smiles, his little coos. The way he turns himself into me when he wants a cuddle. All that stuff.

But what am I going to do with my life? I mean, much of my time and effort in the day revolves around Joel. The four feedings which each take about 2 hours. Giving him medicine three times a day. Holding him so he gets some play, loving, and stimulation, instead of just lying there all day.

People sometimes tell me that I must be so busy. I'm actually not. Well, that is, I'm not when things are status quo. When Joel is ill, it is different. But day to day, I'm not any more busy than anyone else who works for a living. It's not that Joel fills my whole life up with "busy-ness."

But he IS WHAT I DO. I manage his prescriptions, phone em in when they are getting low. Check out the side effects. And I manage the doctor's appointments and medical info. I keep a special watch on his day to day health. I think I take his temp about every other day because he naturally feels so warm all the time, and his fevers are so hard to control. I monitor his breathing whenever he is sleeping. Even when I'm sitting here typing an email, I am also listening with one ear for any changes.

Joel has filled my life in ways that healthy children don't. I mean, he still fills my life just like a wee babe. He does nothing for himself, not even shifting position, getting a thumb to his mouth is about it. But he fills it in ways above and beyond that.

Managing his health sometimes fills my horizon, from sea to sea, if you will. Sure, that is often a sad and difficult thing. But it has become the view from almost all my windows. It is the environment I have adapted to.

I feel like a sailor up in the crow's nest. A vast sea of Joel is all around me. There are storms, loud and threatening. And big waves that are frightening. But I have my sea legs. It's been almost two years on this voyage, out at sea. I have forgotten what anything else is like.

And what will I do, when all that vast ocean is drained away? I will be left in a vast, vast crater, a stinking, mucky, mud-flat and ooze wasteland. I will be run-aground with nothing but slime as far as eye can see. I have no land legs. It will be such a long, difficult, mud-encrusted journey back to find some "dry land."

My life is full of Joel. That's ok, I wouldn't change that, because my time with him is so short. I don't mind the view from my windows, because one day I won't be able to see him anymore. But oh, Joel, what a hole, what a terrible hole, you will leave behind you...

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