Welcome

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..







WARNING:







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, May 25, 2011

Blogs are coming soon.

It has been almost a week since I posted a blog.  That's partly because it has been a bit busy around here.  But it is also partly because it has been a tough week here too.

I've still (mostly) been keeping my morning times with God.  That has been a struggle at times, too.  I know it is important and I sure notice when I don't spend some quality time with Him, but there are days when you just feel the urge to avoid, avoid, avoid.  It seems like so much work to get real with God, because it means facing some negative emotions and all that sort of stuff.

You know that the emotions and the work and all that don't go anywhere when you set them aside.  Procrastination has never lessened a load.  Still, it is hard to fight the urge to spend a day in distraction.  Or maybe several days.

I'm trying to keep being real with God.  Each day.  A "bite size" chunk of sadness.  Then if I feel the urge to distract myself later, that's ok.  Best, even, if I can distract myself by doing some good and positive.  But I'll still stoop to tv and video games if necessary.  And if too tired to muster much up otherwise.

I've had some blogs I wanted to write.  I wanted to continue my thoughts on "Where I am and How I Got Here."  I wanted to write a blog about the day Joel died.  I wanted to write a blog about my thoughts and feelings on my "new freedom" for lack of a better way to say it.  In short, there were a lot of blogs to write.  But in the spirit of avoiding painful, tiring and difficult emotions, I obviously did not write them.

It's time though.  Time to forge ahead and deal with some of these things.  Even if it is sad or hard, or as I have stated: exhausting!  It amazes me how sometimes the hardest thing about grief is not the sadness or pain, but the utter exhaustion that comes with dealing with these feelings.  Sometimes it is physical, other times it is mental.  But wow.  It takes a lot out of you...  And now that I have licked my wounds for awhile, I am GOING to get up and write about the fun experience!  Ha ha ha.  But seriously, I am working on it.

Before I go, I'm going to say that I still feel very peaceful about it all, in general.  It hurts.  It exhausts me.  It even sometimes feels overwhelming enough I would like to play video games all day long (which I confess is basically what I did all day on Saturday).  Yet in it all, I can say that I still mostly feel peace.  Peace.  And that is a precious gift.

1 comment:

  1. Long story but I eventually came across your blog and follow it when the time allows. I am struck by the suffering that you and your family have endured for the past couple of years and how it is akin to those suffering with any terminal illness. The difference would be that you are giving a face to a rare illness and in a time when major diseases get the headlines, it is important to not forget about the rarities. Thankfully we have the internet to share the knowledge.

    I completely understand the sense of peace that is mixed into your grief process. Having lost a loved one to a terminal illness, it is a relief when it is all over. You have been in mourning for quite some time and people tend to not to realize that. From the first tears at diagnosis to every doctors appt to the final days, it all was a form of grieving and suffering. It is such a joy to know that your loved one, Joel, is no longer suffering. Your own sense of loss is a cross that you would gladly bear to be sure that he suffers no more. I completely get that. It is a mixed bag of emotions that is unexpected as you miss him dearly but would not wish him back to suffer more.

    It has been years since my loss but I think that the grieving process lasts a lifetime. If the loss was significant enough, it is something that you do not get over or forget but something that becomes the patchwork of your life and is ingrained in who you are. I do believe that it makes you a more compassionate person that in turns makes your contributions to the world deeper and more meaningful. Just like your blogs. They may feel like you are taking people into the depths but in fact they are healing and helping people like me, who never even knew Joel, to understand better how to deal with our own losses and find a path towards God when sometimes we cannot see through the weeds. Bless you and know that your blogging does have a purpose. I am sure that I am not the only stranger that has been touched by your words.

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