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!

Tuesday, May 4, 2010


It is Tuesday again, and respite day, and blogging day too. Good, because today I am having one of those "tired" days. Don't know why they happen. Maybe it is internal stress dealing with the emotions that go along with Joel. I would say that it is depression, cause I know that depression can make you very tired. But honestly, I don't really feel BAD. I feel very sad at times in the day, and I also do have lots of happy feelings. But I don't think I feel depressed.

Still, I get these tired days. I just don't want to do ANYTHING but sit on the couch. Sometimes the feeling goes away, or sometimes I start off pretty peppy, but just run right out of gas. I feel bad, and it is hard to explain it to my husband who has to go to work every day and get stuff done. Then he comes home and wonders why the attempts to manage the home seem "limited." It isn't like that every day (thankfully) but I sure do have my days.

It has been just about a week, since Lydia went home to be with Jesus. There isn't much to say about all that, except that I have been feeling really sad about it all. I think about her and Jen a lot during the day. It is really frustrating to be so far away from your friends when they are going through so much pain. So, since it is on my mind, I'm just reminding you of Jen, too. So you can keep praying for her and Micah.

I have been thinking too, about words. I mean, about the power they have. And how they become "charged" either positively or negatively for us. I was thinking about how some words are just ugly, because they stand for something nasty. And how some words can evoke very pleasant feelings. For me, the word "mother." Then that made me think about how words with good feelings attached for me, might not have that for other people. There might be someone for whom the word "mother" carries a lot of yucky emotional baggage. Sadly, it might even be an "evil" word.

In the last year, many words have changed for me. Some have become even more "ugly." Some have become "ambivalent" where before they were "happy."

With so many words constantly bouncing around in my head, with happy, sad, or ugly feelings attached, I thought I'd share a list with you. I guess instead of the "good, the bad and the ugly" it would be more like the "good, the bad, and the ambivalent (or emotionally confused.)"

Here are the real "uglies" for me:

deaf & blind (yes I know that some deaf & blind people have amazing lives, but for my little boy in his limited world, it seems a horrific possibility to me)
life expectancy

Yup. Those are the real badies. If some of those words ever held a good or neutral connotation they sure don't anymore.

This next list may have some surprises. I might explain some of the choices, though I think others will be "no brainers" if you think about it. These words are not neutral. They have strong emotions connected. It is just that they have several different kinds of emotions attached. For any positive ones, there are also negative feelings evoked. Or vice versa.

pregnant, pregnancy, expecting, etc. Any "baby" words, actually.
birthday (or any other age related words, no, its not because of my own age either)
palliative (yes, palliative. Because when your little one is in pain or discomfort, the wonderful people connected with this name will help you.)
test (going along with any other word, like MRI, vision, hearing, etc)
P/T, O/T (things I wish I could see Joel benefit from)
vacation (something other people can plan or go on, something I wish we could do)
wheelchair (something I'd be happy to get a chance to use, oddly enough)
eyes & sometimes other vision words (like when someone says either Joel or Caeden has beautiful eyes)
help (not because I don't appreciate and need it. Because it's something I wish I could give more of and needed to receive it less)
brother, sister, sibling words
next year, planning, in the future, any words connected to the future
three years old (because I am sort of expecting that year of age for Joel will be our worst time)

Well, that list is a starter, anyway. It sometimes amazes me how some of the words that are about good things, can still give me such a pain when I hear them. But don't take them out of our conversation! Pregnancy and babies are beautiful things, I wouldn't want to remove them from my vocabulary even if they sometimes hurt.

Here is a list of the beautiful words. I'm not going to put either God or Jesus on the list. Not because they are not beautiful. Just because I don't think I can "categorize" words with such a special meaning. Just wanted you to know, in case you wondered why they were not on the list.

casserole (and all foods connected to comfort, caring and support. (pizza))
happy or laughing
support group
"Don't worry, I'll take care of it."

and JOEL. And those are truly beautiful words, though perhaps not always pain-free.

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