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!

Tuesday, April 5, 2011

Red Chair

The post below this is the words I said at the funeral. I felt the need to preface those words here, particularly for anyone new to my blog. Those words I said at the funeral are as true a week later as they were then. But they are the result of a long journey. A journey that was over two years in the making. ````````````````````````````````````````````````````````````` I wanted to note that, because I didn't want anyone who doesn't actually KNOW me, to think that I walked every moment of those many months able to say some of the words I said at the funeral. Not that God wasn't my source of peace, or strength. But those words mark a place in a journey, and a journey has many, many landscapes. `````````````````````````````````````````````````````````` I have felt, ever since Joel died, that I am being carried in the eye of the storm. We had over two years of adjusting and preparing ourselves for what we could slowly see coming closer and closer. All those months were time for us to batten the hatches. To board the windows. Check flashlights for batteries. Stock up on food and water. Have blankets ready. You know. Prepare for the storm. ````````````````````````````````````````````````````` And since Joel has died, I have felt that we are sitting safe and warm while the storm has been causing devastation around us. But I think the day is coming when we will have to step out of that house. Then we will take a look around us and see fallen trees. Smashed fences. Water and mud everywhere. Dead animals. Ruin and chaos and devastation. ``````````````````````````````````````````````````````` The aftermath. The part where you have to start the slow job of cleaning up and rebuilding. Grieving in earnest. The hard part of getting back to living. ````````````````````````````````````````````````````````` For now, I'm grateful for this quiet and peaceful place of safety. It is really, really hard to explain if you have never taken this journey, how very painful and hard it is to watch your child deteriorate. I keep saying how hard it is to explain, and then I keep trying to explain it. Seeing your child's death slowly approaching is...beyond words. `````````````````````````````````````````````````````````````````` And in a strange way, it meant that some of the grieving I'd "normally" (what is normal about any of this, right??) be feeling right now, I had a jump on and dealt with before Joel's death. I grieved some of it already. This slight lead on the grief process will end. Grief will catch up on me eventually. There were feelings and experiences I couldn't have during the previous two years. And they are coming for me. `````````````````````````````````````````````````````````````````` But for now, I'll not worry about them. I really needed this break. Because what we did for the last two years was... the sort of thing that makes this calm now very important. ````````````````````````````````````````````````` Let me tell you about the little red chair. It's just a glimpse into what the last two years have done to our hearts. ```````````````````````````````````````````````````````````````` It's a carry over from the first days after Joel's diagnosis. The days where I carried the hope that Joel would be "milder" and thus be able to learn to sit, walk, and live for many more years. I picked out the little red chair in this time of hope. An affirmation of hope, a gesture of joy. This red chair is like a "Bumpo" chair, but the Cadillac model. It cost about $80 dollars and I choose it over a "Bumpo" because it was a bit narrower in the seat and better designed for a child who had difficulties with tone. ```````````````````````````````````````````````````````````` And for a time, we were able to use this chair. Maybe sometime I'll put up the picture I have of Joel in it. He could never completely sit in it on his own, but he was progressing and learning. He could sit in it for just a few seconds, maybe 5 or 10 seconds as a guess. And if one of your children is a famous brain surgeon, you might have an idea of my pride, my joy, and my hope in those seconds. ````````````````````````````````````````````````````` But after only a few months of making progress, Joel started to regress. The disease started to take hold of his mind. We never used the red chair again. ````````````````````````````````````````````````````````````` And when it comes to Joel's bassinet, or his playpen, or his clothes, these items I will lend, give or maybe use myself if we are ever fortunate enough to have another child. It won't bother me to see a friend's child using them, or to see my own child using them. There is a special happiness in those items, along with the sadness. ````````````````````````````````````````````````````` But when it comes to the red chair, I really don't think I want to see it anymore. I don't want to see another child use it successfully. There is a pain associated with that chair that goes beyond words. So it will go to someone I don't know. ```````````````````````````````````````````````````` I needed to mention that red chair to you, so that you could see that two things were very real. The pain is very real. And the peace is very real too.

1 comment:

  1. Karen the I feel your pain. I know how badly you you wanted Joel to be able to enjoy and sit in his red chair. Just like I wanted soo soo badly for Jordan to be able to play on the playground I bought for him when he learned to walk. Now it sits in my backyard and I cant bear to sell it to someone I know.
    Im glad to hear you enjoyed your short Vaca. Hope to chat soon. =)

    Sarah D