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, April 13, 2011

Gave Back the Equipment and Kept the People!

Today was another day with an equipment pick up scheduled in. After the last one, I had some ambivalent feelings about what I thought today would be like. In fact, it seemed like it was more difficult than even handing over Joel's equipment. ````````````````````````````````````````````````````````````````````` Because our case manager, and the palliative care nurse, and one of the palliative care doctors were all coming over too. And it occurred to me. This time I'm not just giving up the inanimate machines that were part of life with Joel. This time I'm giving back people! ``````````````````````````````````````````````````````````````````````` Which is even worse. I've already written about giving back the equipment, and how it feels like you are losing a part of the presence of someone you love, even though you know it's ridiculous to think any part of them resides in MACHINERY. But it still feels like such a FINAL disconnection. ```````````````````````````````````````````````````````````````````````` And these were not machines. They were people who had been part of our lives for a long time. They had seen us at our worst. They held memories of Joel inside them. They had been supports in time of need. Sometimes they understood what no other people seemed to get. They were not electronics and wiring. They were flesh and blood. `````````````````````````````````````````````````````````````````````` And they were a part of the story of Joel. A story which I don't want to believe has ended, and indeed, it hasn't. It's just another section, a different chapter. But writing these characters out of the book seemed like an obliteration of previous chapters... well, what am I say? How can an analogy prove my point? These were people, real people, and they had lived with us through much of our journey with Joel. Letting them walk out the door so finally seemed...??? `````````````````````````````````````````````````````````````````````` It did seem like letting part of Joel go. For sure no part of Joel remains in a machine, but for sure some part of his life and existence touches those who knew him, and how could I let that part go when I no longer had him here with me? It did feel like a very real connection to Joel was done and ended. These people had a share in a very special and sacred thing. They had a share in Joel's life, and in his dying. ```````````````````````````````````````````````````````````````````````` I felt sad. Can I underscore that? Sad is such an insipid little word. A weak tea word, but the feeling I had was like very strong and black coffee. I was pretty sure when they walked out the door I would go to a corner and cry like a baby. ```````````````````````````````````````````````````````````````````````` But during the visit I learned that I didn't have to "return" these people with the equipment. They invited me to keep in touch as I wished to, and even offered to come out for a visit again if I liked. In fact, our case manager asked if it would be ok for her to check in on us from time to time for the next year. So I said "Sure!" This was all I needed. `````````````````````````````````````````````````````````````````````````` I gave back the equipment. This time I didn't even really feel sad as I saw it go out the door. I gave back the equipment, but I'm keeping the people! Turns out I didn't go to the corner and cry like a baby after all. People are a very fine thing to keep.

1 comment:

  1. "People are a very fine thing to keep". Wise words from a wise woman. Thank you for being one of my people to keep. xo T.

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