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!

Wednesday, December 22, 2010


Today was a special day. I was able, through the love of my church, to give Joel a gift. A gift that he actually enjoyed.

And I really didn't have to do much. I baked some cookies. I made an invitation. I vacuumed, which needed to be done anyway, and I cleaned the bathroom, which REALLY needed to be done anyway. I gave Joel a nice bath and dressed him in his new, soft, flannel Winni-the-Pooh jammies and his little Gagou Tagou sheep slippers so he'd be at his best. I turned on all the Christmas lights and lit all the candles and dimmed all the lights. I set out tea, coffee, and hot chocolate.

And then at few minutes before 8pm, the arrivals started. People. More people. Even MORE people. More people that I had expected. I think it was just about the whole church. There were around 30 "children" depending on where you'd put teenagers. And there must have been around 30 adults. Our little bungalow was bursting.

And then the singing began and it was beautiful. I held Joel as we all gave him the most beautiful concert, complete with harmony and the amazing acoustics of people close together in a small house. We sang to him until 9pm.

And I for the first time in awhile, Steve and I were able to give Joel something he really enjoyed. His eyes were half closed, but this was because he was intently listening. His whole body was tense, which indicates his attention and concentration. It was amazing how his body tensed as soon as the singing started and how he stayed "on alert" until the concert was done. He never even smiled, but I could read his attention and interest and enjoyment in his face and his body.

It was a special night, with special people, with a special gift for a special boy. Merry, merry Christmas Joel!


  1. Karen, it is absolutely amazing to hear about the jewel of a church you have become apart of. I am blown away by the support you have received from them and thank God for them in your life. Wishing you a Merry Christmas from our family to yours.