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!





Monday, February 7, 2011

Update

This is just a quick update.

Joel's eyes have not yet cleared up. I'm not even sure if they have started to clear up. But at least they haven't really gotten worse. They change alot. One part shrinks, another part swells. Parts turn purple or peel. If anything, they do look better, not worse, but it's hard to really think it's gotten a lot better. Sigh. I have gotten used to it now, myself. But it's still not fun taking him somewhere and being asked what is wrong with his eyes.

Steve's wonderful term job that he really loved came to an end just this last Friday. He was bummed out about that, because it was probably the best job he's ever had, and he really felt good about what he could accomplish with his students, because they were all so enthused and cooperative. Now, he is back to subbing. Subbing is... well... the good thing is you don't have to mark or do up lesson plans or unit plans, etc. The bad thing is that sometimes the teacher doesn't do up lesson plans either, and that the students really don't respect you the same way, and there is a LOT LESS job satisfaction. I know. I subbed for a year too. But, he won't have the same long hours, so we will see him more. Money will be tight, unless and until he picks up another contract. Subbing is about half the wages of full time teaching.

Caeden is doing ok. He had a yucky case of croup this week end. The croup has now morphed into a regular run of the mill cough and runny nose and hoarse voice.

We all remain happy and grateful that we STILL have not had to do the hospital thing, not for such a long time.

In one hour the AquaTech lady comes over to see what she can do about jacuzzi tubs. I'm feeling a bit disheartened about it, as it dawned on me that there is a heating vent just about EXACTLY where we would want to put the tub.... :( I'm just not sure what she is going to say about how far we'd have to run the pipes and all of that. But we will see. We will see. I'll let you know about it as soon as I know.

And that is about it over here.

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