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!

Thursday, October 7, 2010

Less Than Pristine

Wow. Some days I come home from the hospital and need to shower my emotional self, instead of my physical self. A nice, hot, cleansing stream to rain over me and wash off all the emotional garbage I come home with. Have I mentioned (complained) how yucky living at the hospital is?

Today I got pretty angry/annoyed twice. The first time was when I was in the Ronald McDonald house, waiting for a turn on the computers. There was a lady there who was BOTH watching TV AND using the computer. Yup. Seriously. She left her coat on the computer chair and her site up on the screen while she went and sat on the couch as watched TV. When I asked her if she was done with the computer, she said no, and went back. She then proceed to sit on the couch and watch TV until a commerical came on, then she'd return to the computer to use it during the commericals. My blood was boiling, but I restrained myself from making a scene.

Then I got pretty annoyed/angry when I realized that Joel had a pressure sore UNDERNEATH his Tagaderm patch. I removed the Tagaderm to see a huge welt, with a blistered section, just waiting to burst. My blood pressure was going up, but I thought I'd try and be "REASONABLE" (Ha! Favorite word, people!). So I let Elm service know (that's the group of docs and residents that Joel is under the care of) and I let the respirologist who came by know. I asked both of them if we could discontinue CPAP for a night or two until the pressure sore healed a bit. Both groups agreed. Then I had a HUGE second blood pressure spike when the head respirologist spoke to the nurse on the phone and said no way could the CPAP be discontinued. I was starting to get somewhat peeved. I told the nurse that if the pressure sore had broken down by tomorrow morning, I'd be mighty steamed and have some choice words to impart to those in charge.

At the same time Joel was transferred to another ward to make room for someone else in the monitored room. The new nurse and charge nurse took a look at Joel's forehead and said the respirologist shouldn't have made the call without at least looking at his sore. YOU THINK?? (ok, I didn't say this, I just thought it) So they re-checked into it, and by the time we left we had gotten the ok for one night without CPAP to see if that would help. Situation resolved.

But I came home smeared in irritation, dripping annoyance. Bits of anger clung to me and I smelled an aroma of guilt, worry and frustration just rolling off me in waves. I think I stepped in some attitude that had gone a little bad. Then there was this gloppy mix of feeling stuck to me, composed of the feelings I felt others had reflected back on me.

You can imagine being coated in this mess made me feel in bad need of cleansing and refreshing. I just want to wash em all away, until I smell sweetly of relaxation, peace, and warm caring. Aaaah. Sounds good, no?

I think I should sit down and read my Bible, talk to God a bit. Like taking a nice warm shower. Get clean again. And that makes me think of a few verses I ran across a few days back.

Psalm 126:5&6
Those who sow in tears
Shall reap in joy.
He who continually goes forth weeping,
Bearing seed for sowing,
Shall doubtless come again with rejoicing,
Bringing his sheaves with him.

So, I think I have the part about continual weeping down pat. Now let me not forget to take the seeds for sowing. Because I'm really looking forward to the day I come home loaded down with a harvest, but light of heart with rejoicing.

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