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!

Saturday, July 9, 2011


I feel that I should be writing in this blog.  At the same time, my thoughts have been going a MILLION different directions.  Seriously.  Processing what happened in the last three weeks, thinking about my Dad's last days here.  Thinking about the future without him.  Thinking about what life will be for my mom.  Thinking about what life will/should be now for me.  Thinking about Caeden, what he has lost, and how good a sibling would be for him.  And us.  Maybe?  Thinking about two funerals.  Processing Joel's last days here.  Processing Joel's almost three years of life.  Thoughts and feelings about God.  About heaven, death, the meaning and "purpose" of pain.  You see.  And I feel sometimes that a lot of it is "re-thinking" so it's likely stuff I've already written about. 

I can say that in the last couple of days, I have once again been feeling those regretful feelings.  But I'm not longer even sure that it's correct to call them regrets...  They are longings.  Really.  Longings couched in regret-terms. 

I've been feeling "I wish I had held Joel more,"  and most especially "I wish I had played with him and sang to him more."  The truth is, though, that I really have NO IDEA how much I did or did not sing and play with him...  I mean, I know that I did both of those things.  I have memories of doing that.  But obviously I can only actually get the mental picture of doing this several times.  I can not possibly mentally view ALL the times I did this.  I did not, of course, record the hours and minutes I spent doing this.  And so, really, I have no idea of the quantity of time... it's impossible to get that information, because life with Joel was so up and down that weeks went by when I was virtually unable to play with him or even sing to him. 

And then, of course, there were times when I could do that every day.  There is no way for me to now evaluate if I did this "enough" or not, because I can't even get the data to try to decide something like this.  (and neither can you, by the way.  How can I trust YOUR data on this, when you have even less than I do?)

So, I really can't get a grasp on how much playing and singing I really DID do.  Unfortunately, along with remembering times I did this, I can remember times I did not do this.  These times pain me.  I know there were reasons.  Joel was sleeping most of the day.  Joel was not "feeling playful."  And then, at times, I was not "feeling playful."  What I mean is that in the good times, I could recover my "moxy" (or whatever you want to call it) enough to sing songs with playful motions, instead of just lullabies, or get out Joel's light box and see if he could focus on the spinner, or massage him with lotion...etc.  But often after a hospital stay or nasty bout of "irritability" or whatever, it might take a few days or even weeks for me to get up the courage to "try again," as it were, with the more stimulating activities, instead of just comfort care.

I forgive myself for that.  Because those times, I just really COULDN'T do it.  I know that all the down turns just kept happening so quickly for me.  The short time of progress for his body was just so short.  The regressions just started so soon...  I don't even know the words to explain it.  Just how incredibly hard those constant and steep steps down were.  Just grab the railing and keep moving your feet so you don't start tumbling head over heels.

So, the pertinent points are that I really have no idea exactly how much of the time available for singing and playing was used for singing and playing.  And how much of any "lost" time I really just couldn't do more than hold him or rock him, or whatever and let that go and forgive myself would be the best idea here.

But I strongly suspect that what are disguised as regrets are really just longings.  I say "I wish I had played with him more," because I just so much wish that right now I could play with him.  And so I remember a moment that I DID play with him, and wish I could go back and experience again.  And then I think, why isn't there a never-ending supply of those memories of playing with him?  Oh, if only I had played with him MORE!  When really, I suspect that: 1. my faulty memory can not extract them from the hidden depths of my brain, and 2. there would never be enough because they are limited, and what I really wish is for them to be current and ongoing.

I know I have written about this before.  Sorry, this really isn't so much for you (unless you too are dealing with regrets), this is for me.  Because this is how I feel, and how I have to work it through when I am hit by a "regret-time" in the grief process.  Yeah.

So, changing the topic completely, here is the latest "series" of photos of my Joel-Garden front flower bed.  :)

1 comment:

  1. I would like to read that article. And I also want to say I am so sorry for your loss. I remember how much it hurts. I am watching one of my best girlfriends go through something similar. Her son has SMA. He was given two years to live but just turned 3-but he is very sick and paralyzed and can't speak...it is SO VERY HARD. Like you I want to carry a torch for my girls forever. I never want to let go. I feel like they were torn from me and I feel hurt and angry. Life has such a rift in it now. I am struggling to move forward. Thank you for your encouragement.