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, April 9, 2011

Another Kind of Loss List, Part Two.

Yesterday was a tougher sort of day. The RANA delivery person came to pick up Joel's O2 equipment. His feeding pump was also picked up. When I awoke to this thought first thing in the morning, I cried. ``````````````````````````````````````````````````````````````` Which took me by surprise. Back sometime in the fall, I think, I wrote a blog that was a "Loss List" and wrote about how I was feeling about the very thing that happened yesterday, many months later. So I guess I shouldn't have been too taken aback. But in the last two weeks, thinking about the equipment pick up didn't really seem to faze me. ```````````````````````````````````````````````````````````````` Joel wasn't in the equipment. The equipment helped him live longer, but the equipment WASN'T HIM. I was grateful for it, and saddened by the need of it. I wouldn't term it a love/hate relationship, the emotions connected to this machines wasn't anything so strong or easy to define. And I thought whether they disturbed me by their presence in the absence of my son, or if the blank spot that their departure left was a sad reminder... well, it didn't seem like much of a difference. ``````````````````````````````````````````````````````````````````` So when I woke up with the heavy sadness and tears, it was oddly unexpected. When the RANA gentleman, the same one who has made deliveries for us for about 8 months, phoned to say he was a few minutes away, it was all I could do to keep my voice level on the phone. And to somehow compose myself for his arrival, which I somehow managed to do. It was hard for him too. His eyes were a bit red and teary as he shook my hand for the last time. `````````````````````````````````````````````````````````````````` And then the oxygen equipment was all gone. And after all the tears and pain, a strange feeling of liberation also washed over me. I was so sad there was no longer a reason for the equipment. And I was so... released? that there was no longer a reason for the equipment. There was a tiny flutter of joy in amidst the other feelings, a flutter of joy because Joel no longer needed any assistance in breathing. ```````````````````````````````````````````````````````````````````` I guess it's funny. I wrote about that day, FOUR MONTHS before it happened. And I wrote about how I was going to feel. And yet how I felt was astonishing to me. And when I go back to that blog post, I think I pretty well nailed it. Yeah. ````````````````````````````````````````````````````````````````````` By the way, for the record, the day Joel died I did throw out all his meds. I forgot to pour them down the sink first, or maybe I was just too exhausted. I just tossed them into the garbage. A tiny little baby step in the lost list. The easiest one for me. I didn't love the meds, though they made Joel's life better. I didn't mind the work of giving the meds. I just didn't like the need for them, or the side effects they might have. So yes, I really did throw them away the day he died. And of course, I did that with tears too.

1 comment:

  1. I cannot imagine the strength and fortitude of your heart to endure this. What beautiful sons. I am so, so sorry beyond words that you lost your beautiful Joel. Thinking of you...