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, January 4, 2010


Today a friend from the online support group reminded me of the day Steve and I sat down and got "the news." She mentioned the expression on the doctor's faces...

I don't remember the exact faces on the doctors, but I did take a trip down memory lane to that stomach churning, horrid day.

What I do remember is how it made me angry that I was in a room surrounded by virtual strangers to get the worst news of my life. I was angry that I was there, in that room, getting such a blow with these grave, calm professional people all around me in my most vulnerable moments of my life. My whole emotional being was laid bare there in that room, and they were all witnesses...

But I realize now that what actually made me angry was not that I was so vulnerable in front of strangers. What made me so angry was that Steve and I were the only ones crying. We were the ones with tears blurring our vision while all around us the kind, but controlled medical staff sat. They were, of course, concerned, but they were not GRIEVING, and this is what I resented.

I wanted them all to lose control too. I wanted them to have tears in their eyes, to grab a kleenex to blow their noses. To sniffle a bit. A floor down from that room a little boy was so sick that he was gradually dying and I wanted some GRIEF!

This has all made me think about things. For one thing, it made me think about something recorded in the Bible. When Jesus' friend Lazurus had died. His sisters', Mary and Martha are grieving for him, and they are surrounded by "mourners" who are doing a traditional "good duty" in their role as comforters to the sisters. They are loudly crying, even wailing, openly mourning the death of this man.

I had always found this custom strange, and somewhat hypocritical. Why would you want so many people around you crying? It is very out of touch with our own society, where our grief is to be controlled, where we are not effusive or demonstitive in our emotions of loss. Solemn constraint, quiet tears, are more acceptable.

Suddenly, I saw the possible beauty, the freedom, in this custom. EVERYONE was weeping. EVERYONE was loudly sobbing, sniffling, wailing. So that the really devasted ones could be free to grieve. No one would stare at them if they cried too loudly. No one to notice if they were "taking it well." Too much noise, too many people crying for anyone to stand out, or feel vulnerable and exposed.

I have a wonderful social worker who has given me a lot of support and help. The best thing about her though, is that when she enters a room and finds me weeping, she cries too. I do not mourn alone. This has always meant the world to me.

And so, when one day my little boy passes away and I face that terrible void, I hope I shall find a group of "mourners" to surround me. People unafraid and uninhibited to wail and cry with me. No one will have to offer me a seditive or avert their eyes in embarrassment at my display. We will all be vulnerable together. And I hope that I will be that way for anyone else who needs it too...

Rejoice with those who rejoice, and weep with those who weep... (Romans 12:15)


  1. There were probably 12 doctors in the room when they told us. We knew that they were going to meet with us that day with the results of the ZS test.

    I was more mad that they wouldnt meet my eye for the two hours I was there with Olivia before the meeting, they didnt come by and tell me to relax there is nothing to worry about. They couldnt. Their silence told me the results although I was in denial until they actually uttered the words. I remember there was one person in the room, she wore a white coat just like all the others. She was crying but trying to hide it.

    I appreciated her compassion ...to care about us and the news our daughter would only live a few months. Everyone cared about us being ok, they seemed to watch us as if to see if we would fall out screaming and I was angry about that too. Because that is exactly what I wanted to do.

    There were a lot of sick babies in that NICU but all had hope of getting an organ or curing an illness or just growing bigger... only our Olivia was absolutely not going to live.

    Thank you for sharing your story Karen. It helps me to deal with mine. HUGS

  2. Thanks for your comments Pam. I love to hear about your experiences, and I sure do relate to them. I hated when they couldn't look me in the eye as much as when I felt they were "watching" me to see "how I was taking it."