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!

Sunday, January 3, 2010


Yesterday was Caeden's birthday. As he is the eldest, healthy child, I have often worried that he is being neglected, or scarred, by what goes on in our house. But it doesn't seem this is so. (and in truth, I think I neglect both my children equally.)

I am constantly suprised by how happy and well adjusted he seems to be. Of course, he is too young to grasp most of what is happening to Joel. He has only just barely grasped it that Joel eats through his tummy tube, and the whole thing about Joel being blind is still a dim flickering in the back of his mind. Never mind all the other ramifications of the whole thing.

But despite the sadness, and perhaps even some depression, that has been part of our home for the last year, despite all the appointments and some hospital stays and all, he seems to be a bright, cheerful child who is developing and growing in a perfectly normal and healthy way.

So, I wanted to write something about him, the boy we all ask about second, or sometimes not at all.

Because he is something of a saving grace that God has given to us. When I first joined the online support group, I expressed some suprise that I could only "find" one other person in Manitoba whose child had this disorder. That doesn't add up to the population, even if you count the short life span involved.

One of the parents told me that she thought some people just never connected to anyone. She said when their child was the first one and thus only child, they often just "hid" themselves away, as it was just to painful to be involved...

I was suprised by this, as it is something that seemed so foreign to my own nature, I had a hard time conceiving of it. But as time when on, I came to understand it very well. As we actually lived with Joel's diagnosis, I discovered the terrible pain involved in being involved.

Let me share my experience so you will understand how deeply life can cut. I still remember this, and it happened over a year ago. The first time I took Joel to the infant room at church. It was a very painful experience to explain about Joel's ng tube that he had at the time, and that he could possibly have seizure activity, and that he had very low tone, etc. I don't even know how to explain this pain to you. Like having to explain to people that your husband has left you, or you ran over someone and killed them. Like trying to crack a nut on a decaying tooth, just grinding down on it till your eyes water...

It is so good that our society is making headway in including people with disabilities and in seeing beyond the disabilities to the abilities. It really is a great thing. The hard thing is that I think it makes it difficult for people to really understand that there is still pain involved for a mother, when her child is suffering so many losses. I think they sort of feel that it should sort of be "business as usual" for me when I deal with it all. Of course, I will be seeing the "abilities" too. They don't realize that as a mom, those damn disabilities just won't lie quiet.

That first day of explaining as I filled out forms and handed them the little information paper I had carefully typed up, I was on the verge of a breakdown into tears the whole time. I can imagine why any parent would start to avoid these experiences. Staying at home is much less painful.

And then, I still remember this clear as day: when we got into the infant room there was the most gorgeous, healthy little girl about Joel's age. She was in a white and red dress. She was so strong, she was almost able to stand while grasping her mother's shoulders, and sitting was no problem. Her chubby little thighs were so nice and fat and strong. Even a year later, I can still picture her. And there I sat, with my thin little boy fussing and wailing in my lap. Even I could not comfort him... So I sat in that baby room ready to burst into tears, trying so desperately to regain my control...

So, I can understand why people might bury themselves at home. Much, much easier. In fact, I can see that I myself might have done that. If it wasn't for one thing: Caeden.

He was my cure. My normal, healthy little boy who needed and deserved to be involved in the "normal" healthy world of children that run and scream with laughter. Who needs to go to Sunday School, and Nursery school, and swimming pools and all.

And really, he makes all healthy children easier for me to bear and be around. Because he himself is healthy. It is sometimes painful for me at Christmas or other special events, because he highlights for me all that Joel misses. But because he does this, it makes it pointless to try to hide away. Everything that is different about Joel, every experience he will never have, Caeden points this all out with great clarity. I have to face it, because I am not prepared to live without Caeden in order to avoid it!!

This is painful, yes. But I am so, so, so grateful for this. Caeden forces me in to the healthy, happy world of children. Away from doctors and illness, worries and disabilities.

Into knees that are scraped from falls running, and disappointments when new Christmas toys break. Into struggles to make clear grown up expressions "it was your puweasure Grandma" (pleasure). Into wanting to "do it myself" and fears of monsters under the bed. And birthday parties where the big excitment is the cars on the cake...

It still pains me sometimes, when I see a little babe half of Joel's age and able to do 4 times as much. Of course, it pains me. But I can deal with that. Because it is such a beautiful and wonderful thing too. My own sweet little oldest child has taught me that. He has forced me to be brave, to be tough, to face all the goodness in the world of children without flinching.

So I must say, thank you to God, for giving me Caeden first, and to Caeden too. For just being himself.

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