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, March 19, 2012

Plan for March 23rd.

March 23rd is almost here.  There has been a lot of emotion in the last couple weeks, and I have been very, very tired.

But I am ok.  Or maybe even I am good.  There are things much worse than being emotional and tired. 

I think I have decided what I'd like to do on Friday, and Steve has concurred with his usual "sounds good."  I think he thinks he is doing everything to help me, and I think that it will actually be good for him too.  :)  Thus is a good marriage made, right?

Steve's work has graciously, very graciously, allowed him the day off work.  Normal that particular day is "don't even ask, don't even think of asking" for it, but he has been treated very graciously and given the day off with pay, which was unexpected.

So we will take it easy and rest.  We will go to Joel's grave, and bring out with us a lovely new hummingbird wind chime.  And we will clean it up and fix it up.

On Friday night I have invited our church family to come over for an evening of singing and prayer.  It's a special way to remember Joel, because they came to sing to him twice before.  It is also something I'd like to do, because we will sing praise and thanks songs to God, and I would like to spend that evening just thanking God for giving me my son.  It wasn't long enough for me, but also every single day was a gift, and I am very grateful.

And we will have a prayer time too.  A special prayer time, to pray for all of the "Joel people."  Those are my special people, whom I met because of Joel.  They include medical people, and respite people and the families of other children with Joel's condition.  So if you are one of those people, we'll be thinking of you on Friday night!

I really couldn't think of a better way to spend the evening of March 23rd than thanking God and praying for people that God brought us to love, through Joel's beautiful life.

P.S.  If any of you would like to join me and my church family on Friday, you would also be welcome.  Just give me a call, so that I know who I am expecting.  :)


  1. What a beautiful way to remember your sweet baby! XOXO- Krissy

  2. I love the way you are remembering Joel. I will offer up prayers for you on friday also.