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, January 5, 2011

Feeling Bad About Feeling Better.

The problem when I don't get to write for awhile is that my head is full of too many thoughts that spill out in all directions, until I don't know where to start.

So hmmm.....first of all, I guess, is that we had a terrific Christmas and holiday season. It was great, being together was great and I even felt pretty great for most of it.

Which makes me feel guilty, because so many people I know have had horrible holidays. I can't name them, to protect their privacy, but I know four people who really had a difficult holiday season, and many others whom I'm not as close to, but I suspect the holidays were also fraught with pain or sadness.

And I feel badly that we had such a good Christmas when so many had such a struggle. Even though, of course, my own sad and difficult Christmas will be coming up eventually.

So it was hard to talk to them and answer when they asked how my Christmas was.

And then, feeling so good and happy at the holiday season... well, I guess I can't win...

Because I felt quite good. And that was even though I have really been feeling that Joel is not going to be here next year. And I was thinking about how I seem to have this gift for being happy with what I have. Or being able to adjust my expectations to my circumstances....? and then be contented with them. I'm not sure how to explain it. But through life I have been able to be happy in many different circumstances...

And that, put together with my current enjoyment of the holidays, made me feel bad. Yeah, I hear you. How can someone who can feel bad about so much stuff be delusional enough to think they have any ability to be happy or content. Well, I do. And I don't feel badly all the time. I just put it down here when I do.

In any case, I felt bad. Want to know how truly ridiculous it gets? I felt bad, and even worried, because I was afraid that after Joel died, I might not be sad or unhappy enough. Yeah. See? See what I mean? But there you have it. Complete transparency to my thought process.

I thought, maybe I won't be sad enough. Or depressed enough. Maybe I'll spring back and start enjoying life really quickly. Maybe I will miss him, but not enough to devastate me.

And that made me feel quite bad. I thought, maybe I just don't really love Joel enough. Maybe I don't love my boy as much as other mom's do. Maybe I'm even more selfish that I thought. Maybe my love is shallow and my grief is shallow too.

Yeah, I know. I'm crazy and if you've lost your child you are shaking your head at how delusional I could be to think I might feel better "quickly." Well, it's all relative.

Because I suspect that others have felt guilty when they "felt better" whether that was three months later or three years. I write all this stuff down, because I have a suspicion that I might not be alone in these thoughts and feelings. And so, if anyone else has felt these things, or this way, now you have heard them here, from me. You are not alone.

I'm not sure, but I think some of my good feelings might actually just be due to me finally, after two years of grieving, starting to "feel better." NOT really about Joel's death, which has not happened, but I suspect rather that it has more to do with the grieving for other things I have been doing. You know, the loss of a "normal" family or abilities for my son. Those sorts of things. The final and worst loss has not occurred yet, and deep in my heart I know that.

But maybe some of the relief of the heaviness has had to do with a relief in the feelings of loss generated by so many other things. I don't know. But I'm pretty sure it's a common experience for people who experience loss to feel guilty about it on the occasions that they start to feel a bit better.

So, I'm writing to tell myself that even if I sometimes feel good, it doesn't mean I don't love Joel. Because my love for Joel can be seen in how I take care of him. How I cuddle him and how I do what I believe is best for him, most of the time. It's not a perfect measure, because I'll also always feel like I haven't done enough for him. But it might be a little better of an indication than looking at how bad/sad I feel and for how long. I know that I really love Joel, because I have always treated him with love. And it's ok to feel better sometimes. Really.

1 comment:

  1. As somebody who has the privilege to help take care of Joel when he comes to stay with us in hospital, there is no doubt that you love him or that you deserve to feel not just better, but good. It's a crazy ride, and you'll get to feel lots of everything - many times over.

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