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, August 6, 2011

Joel's Birthday.

I wish more of our pictures  from the conference had turned out.  I could blame it on the fact that we don't really have an expensive camera.  I think it might be more that we've never really learned to use all the settings properly.  But I do have a few pictures, and I will put up a few of them in the next few blogs.

So, my choice today is to either write about Joel's birthday, or about a precious realization I had on the trip....hmmm.

OK, I will go with Joel's birthday.  You'll have to wait for the other one. 

Joel's birthday this year was... oh boy, how to explain it.  Let's see if I can get a list of adjectives going here, that all apply in some measure or other.  It had moments that were: poignant, affirming, wistful, joyous, peaceful, heart wrenching but in a good way, comfortable, lonely, awkward, restful, fun...

It was a very different day, I am sure, then it would have been if I had been here at home.  Yes, I felt both awkward and comfortable at times throughout the day.  I felt very comfortable, being with all my fellow PBD families.  I also felt awkward at times.  I felt comfortable because I knew they understood the importance of the day and what my son meant to me.  I felt awkward, because I could feel them worrying and wishing so hard to ease the day for me.

It was both lonely and heart wrenching, because so many people left that day, and by the end, we were the only family who had lost a child.  It felt a bit lonely from time to time, seeing all the living PBD kids.  And of course, heart wrenching too, but in a painful but good way.

Everyone did so much to remember the day and show their support.  We had a very late brunch with friends Tracey and Ken (Graham up in heaven).  It was good to spend that time with other grieving parents.  Though in truth, all the PBD parents are grieving parents, just that the focus of the grief is different.  

  We spent the evening at the home of  Shannon's (Sam's mom) parents.  Her and Melissa (Ginny's mom) worked together, and with some fancy footwork from Melissa's husband, Brant, they managed to get me the balloons I wanted to hand out to the children who were there.  Shannon's family also provided a lovely Chinese lantern to light, and as we lit it and sent it up into the sky, we sang Happy Birthday to Joel.  It was very beautiful and special, but the very best part of it was the people who surrounded me and cared so much.

The absolute best gift of the day happened in the morning.  Throughout the conference, I was able to hold, cuddle and interact with lots of PBD kids.  Every time it was so special and a beautiful gift to me.  My friend Sarah let me hold her boy, Jordan, lots of times.  And most of the time, he didn't even cry at the strange lady holding him.  I loved every single one of the kids I saw from even before I ever laid eyes on them.

But the highlight of Joel's birthday was when I formally met, for the first time, a little boy named Clayton.  His mom, Jen, let me hold and cuddle him for about 20 minutes on the morning of Joel's birthday.  Yes, I wept.  Lots.  And I was so thankful for those precious moments.

Clayton is, of course, his own sweet person.  He is not Joel, he is special and unique and wonderful just as himself.  For that part of it, I enjoyed every minute as I would have even if I had never had Joel.  But holding him also did something beautiful for me.  It allowed me to remember Joel more clearly than I have in a long, long time.  There were so many things about him that aided my mind's eye to feeling Joel in my arms again, to seeing the beautiful expressions on his face.  He was not Joel, but he loved cuddling the same way, and he smiled and laughed with delight over it.  His eyes glimpsed up at me as Joel's so often did.  He made little noises of happiness as Joel did.   I can't even explain it.  It was just priceless, feeling those memories wash over me so clearly.

So, I'm going to end with some pictures of me holding him.  I'll put up some pictures of the other special and precious children another time.  This is about Joel's birthday, and seeing me holding Clayton is about the best explanation of what that day was like for me that there is.

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