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!

Friday, November 18, 2011

Weekend Plans & Pictures.

We are going away this weekend.  Well, not far away.

If you have been reading this blog from way back, you know that just before Joel died, he was granted a wish from the Children's Wish Foundation.  It is so sad for me, that he died before he could have any benefit from that, though I know in heaven he's got it way better.

Just a day or so after he died, the CWF lady called me to tell me they had a gift basket put together for Joel that she was planning to drop off (obviously there had not been time to notify them of his death).  When she heard that Joel had died, she felt so badly.  She asked if I still wanted his gift basket.  I said yes.  I figured the gifts were pretty specific for him and they might not have another child who would use/want them.  And I figured that I was going to be sad anyway, might as well see what was in the basket, as just always wonder.

The gift basket was actually a gift hamper.  It was filled with the most lovely towels and fluffy face clothes for use with the jacuzzi tub we had hoped for.  There was children's music and a CD player with a remote for changing songs while "tubbing."  There was baby wash and lotion.  And there was also a gift certificate for two nights in a jacuzzi room at a hotel, for us to enjoy while we waited for the real wish to be fulfilled.  It is hard to explain how I felt about that basket.  It was very, very sad.  But there was something nice about it too.  And now when I look at those fluffy towels, I think of Joel... and that makes me happy.

The certificates were to expire in December, and I had promised Steve we'd use them, so the time had clearly come.  Tonight we leave for two nights at a local hotel.  With a room with a jacuzzi tub. 

I can't begin to explain all the emotions with this.  So I'm just not going to.  I will say that Steve and I are leaving Caeden with a sitter tonight (or as we like to call it, a "sleep over" with his friend).  So we have the first night to ourselves.  If we need to, we can cry as we wish as much as we wish and we can think about Joel.  As I call it, "intentional grieving."  Good to do.  Specially for Steve,  because with his work so crazy and hectic, he gets little time for actual grieving.

And then tomorrow morning we will pick up Caeden and have a family day and night together.  Caeden does NOT enjoy hot tubs, but he does like pools, and so we will spend some time in the pool.  Maybe catch a matinee somewhere.  Just do fun family stuff.

Grief sure is funny business.  I find the pain level has remained the same throughout the last 3 or 4 months.  But I feel more energetic.  I am able to do more.  I need a bit less sleep.  I am still often wracked by grief, and I know this will be for the rest of my life.  On Monday, I got Caeden's nursery school pictures.  They were beautiful.  Really, I loved them.  But as I dropped him off and left, suddenly the grief seized me. 

Because with the joy of Caeden's pictures is the grief that I never got and never will get any pictures like that of Joel.  He could never have a smile like that for a picture.  The smiles I captured were the result of much, much patience, many "garbaged" digital shots... and were very rare.  I love those pictures.  I do.  But I never will get ones like the one of Caeden.  There will be no school photos at all.

And I realized once again that all through life there will be new things to grieve.  I'll not be able to expect all of them.  (the school photos were a surprise to me, I had no idea I'd feel that way.)  I realize more and more that it really is a good analogy, that losing someone that close to you is like an amputation.  You learn to live with the loss, to function, even, very much like before.  But that limb is gone.  You will never forget.

And I will always love my child.  Always.  I just pray, may God use this sorrow.  It is my offering to God, to use in whatever way He can.

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