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 1, 2010


I try to be so honest in this blog, but I still find at times that I sometimes leave out something. Not saying anything false isn't so hard. It is saying "everything" that is difficult. There are so many things we don't say or talk about, they are "taboo." Thoughts or feelings that are not condoned or acknowledge with others.

This blog is a bit of back tracking for me, through the past year with Joel. It is amazing to me, how I did love Joel, right off the bat and through it all. Really amazing. How I could somehow love someone who caused me so much pain...

So, I'm really going to lay it all out here in this one. Say some things that others might find really shocking or horrid. So be it. I never said I was an example to be followed, or some great person. I'm just a human being.

I did love Joel, right from the beginning, even though the rewards, really, were few to non-existent. I loved him despite the fact that I suffered an almost torturous lack of sleep. In spite of the fact that I was often, for months at a time, denied the satisfaction not only of his laughter, but even of his smiles. Or any acknowledgement at all that I was his mother. Many days where I doubted he even recognized who I was. I could not even see that my comforting him did him any good at all, but I still tried my best through it all.

Believe me, at times I thought about putting him in his crib and turning the TV on really loud and eating a lot of chocolate. There were times of lots of effort, lots of trouble and pain, and it seemed there was nothing to show for it. It is funny how we can love our children, because I still did love him.

But in all honestly, there were times were I had thoughts that if Joel would die soon, it would be such a relief. Not in a "I can't stand for him to suffer" sort of way. In a very much "I can't stand for me to suffer like this for years to come" sort of way. Truly, when things were so awful back in August, two things happened.

First of all, for the first time I found myself so empty that I couldn't even go to the doctor with Joel, or face the words I was so scared to hear said, that Joel's irritability and discomfort might be a result of his disease progressing. I heard those words second hand through Steve, and with a sickening feeling of confirmation.

Second of all, shortly after that, a feeling of relief. Whew. It seemed the doctors were all thinking his disease was just continuing to progress, we were referred to the palliative care doctors (though in reality, in their second role, of "symptom management.") I felt sadness and horror too, but also relief. Yes, relief. As if I were to be "let off" of a long prison sentence. Maybe it would "all be over soon." Maybe there wouldn't be years of tube-feeding, diaper changes, irritability, being always tied up with a slowly aging, but never developing child.

Yes, I am being honest. Along with all the pain, relief. Whew. One day soon I would go to bed with Steve and no worries about the last feeding, crying, puking, choking, medicines, etc. I would once again be able to go places easily. The three of us could go camping as a family. I'd have time and energy to fix my hair, get in shape, be a social person. The whole story of my life with Joel vs my life with out Joel flashed before my eyes, and the life without Joel, in all honestly, seemed much more attractive. I think, shocking as it may seem, that the secret answer to "Do I want Joel to die soon?" would have been, "Yes."

I apologize here to all the moms who have lost their children. I apologize to you all, because of course, this was all a bunch of bull. The fantasy of an overtired, over stressed, and in "shock" mom. Of course, as time has gone on, I have realized that the death of my son is not an "easy out." I apologize to you who suffer that loss, for ever thinking it would be. Joel's death, I can clearly see now, is not a mountain I will climb and get to the other side of. Joel's death is a passage into a whole new country, strange and grim. It is just an "out of the frying pan, into the fire" sort of escape. I realize that now.

But at the time, and with so little reward in any of Joel's existence in my life, it seemed so to me. And it wasn't totally selfish. If Joel had been happy, I would have felt differently. Joel had seemed to get so little pleasure out of being alive for that first 14 or 15 months. The bad months truly outweighed the good ones at that point, and I didn't want him to live if it just meant more of the same.

What a shock to me when he went from that to this happy aliveness in just a couple of months. Amazing. And I surprised myself by being so grateful, so happy, so relieved. I guess I never really wanted him to die after all. It was all just that terrible state of exhaustion, worry, sadness, suffering, helplessness, shock.

That was a big relief to me, because inside I had felt guilt for feeling the way I did. I always knew I could be a selfish person, here was my confirmation.

Then, when Joel "came back alive," I felt so happy and relieved, overjoyed really. And filled with a sense of wonder at that. What sort of lies was I telling myself, that I would be relieved if he died? It was nonsense. What I truly wanted, even if it meant years of diapering, feeding, physio, lifting into and out of a bath, etc, etc, was for my little boy to be happy. Happy and alive.

Even so, for all my gladness at these happy days, for all my gratitude, it is still tempered. Because I know that I will pay for every happy moment later. I can't help feeling it. The more we bond, the more smiles, playing, laughter, the more love and attachment. And the more of that, the more pain and longing and missing him later. These beautiful "crystal rainbow" moments, will one day shatter, and cut me all the deeper.

Still, I wouldn't trade them for the world. I am so grateful for them. The only things worth anything in this life, always have a cost to them. And often it is the price we pay which is what makes us truly realize what they were always worth in the first place.


  1. Hi Karen
    I have been reading your blogs as faithfuly as I am able. Thank you for the courage you have to be honest. I find it so heartbreaking and refreshing.
    God bless you. You are in my heart and my prayers.
    Your friend and sister in Christ
    Christine McDougall

  2. Couldnt agree more.... I look up to you for speaking the truth..... I feel normal now = ) Hope all is well. Take Care!

    Sarah D

  3. Anyone human would have to feel what you did. But there are a lot of humans who would pretend they hadn't. I admire your courage, which could well help someone else out of that dark place someday.