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!





Sunday, June 27, 2010

Roses

I had a few blogs in my head, but now I find I'm having a hard time settling down to them. It's been a tough slog the past couple of weeks, though I have been trying "not to notice." My dad has not been doing very well. The first time he went through chemo, it took three days for his blood counts to start going up.

It is now day 17 or 18 and his blood counts are still not up. It's been almost that long since he has taken any food, and most of that time he has been lucky if he can have ice chips. He's had a fever off and on, and today we found out (finally!) the source of his infection, he has a perforated colon. He has spent two weeks in bed, using the "port-a-potty" and the big excitement of the day is sitting up for 10 minutes a few times a day. His mouth is constantly dry and he sleeps most of the day. He manages a few sentences at at time, and if he's up to it he listens to music or taped sermons. And I think it is safe to say that at times he is pretty discouraged.

Now I am waiting to hear if they are going to do surgery right away (risky) or if they think they can wait a few days to see if his blood counts go up (which also has risks of course.)

When I go visit him, I'm somewhat speechless. What kind of small talk would you waste your five "good" minutes with your dad on? And what sort of meaningful talk can you have in just five minutes? I never get a moment alone with him anyway. And I refuse to resort to platitudes or things I don't mean or believe, things I can't say with 100% sincerity. So I tell him I love him.

And I tried to tell him today how much I appreciate all he is going through for us. I know that when he signed up for all the pain and trouble of chemo, it was for us. My dad is so unafraid to die. And right now, I think that at times maybe he wishes for it. That he could leave and be happy and at peace. But there I stand at his bedside with my enormous, sad eyes, silently pleading "Don't go yet. Not yet. I need you to stay and be here when Joel dies. Don't go yet. I still need you."

I'm glad I wrote my little blog about my dad when I did. Because if I had waited, I don't know if he'd ever get the chance to read it. I sure am hoping that he gets the chance to read this one. And that I get to have many more talks with him, both small talk and great talk. I want to have many more days to tell him he's the greatest dad and I love him.

So this is a reminder. One of my favorite all time books is "The Little Prince." Roses are ephemeral. So are we, at least in this place and dimension. Roses bloom their hearts out and provide those around them with the sweet smell of their love. Let's bloom our hearts out too, without reservation and without holding back.

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