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!

Wednesday, December 8, 2010

Could Whoever Has My Brain Please Bring it Back!

Even before Joel came along, I wouldn't say I was the most organized person. I NEVER have been good at remembering any birthday without some one helping me. My desk has always been one of the cluttered ones.

But this is just plain cruel. How can I function without a brain. Seriously, if you took it, I want it BACK. NOW.

Just when I really thought my memory and organizational skills couldn't get any worse, this week came along. I am almost ready to go to my doctor and ask for a brain scan, in case I'm developing a tumour. Has anyone noticed any personality changes? No, seriously, it really did cross my mind as a plausible answer, for a moment there.

Because I can't believe this sort of complete disintegration of my mental capabilities could be the results of turning 40 and the situation with Joel. I even sat down to make up a list of all the things I had forgotten this week, and you know what?? That's right. I couldn't remember any of them!

But they slowly rose to the surface of the sludge in my brain. Well, some of them, anyway. Like when I introduced myself to someone at church and then they told me we'd meet a few months earlier. Or how I went to Joel's endocrinology appointment (which is about his ADRENAL insufficiency) and then forgot to take his emergency cortisol replacement with me. (no, we didn't need it, but we are supposed to take it everywhere in case of emergency.) I forgot to phone a friend to confirm our plans for this evening. I actually remembered the plans. I just forgot to phone her about what time to meet. If I could remember the half of it all, I assure you the list would be pages long.

And that wouldn't be counting the times I walked into another room and forgot why I went. In fact, there have multiple times where I realized that I HAD gone into another room for something a while earlier, but hadn't actually done/gotten it. But I couldn't remember what it was that I had ended up doing there instead!! I mean, I thought, "Hey, I went to get some sausage from the freezer awhile ago... but there is no sausage?? I remember going to the laundry room....??? Hmmm, no sausage in the washing machine, so that is a good sign I guess.... but what DID I do while I was in here??"

I think the secret to feeling more organized is BEING more organized. Yeah. So no help there. Trying to get more organized at this point would be like taking a hair dryer to the snow outside in the hopes of clearing the driveway and sidewalk. It's a nice idea, but where would I start, and would I ever finish before I died?

And I'm feeling seriously lost. LOST. Like I'm living in this permanent foggy, fuzziness. I feel like I'm a purse that has dropped and scattered lipstick, credit cards, receipts, chewing gum, loose change, etc, etc all over the floor.

If only the brain was like a diamond ring. I could take it for a nice cleaning and get the settings tightened. It would come back all nice and sparkly, like brand new. Only in this case, the jeweler would be informing me that some of the diamonds had already slipped out of the settings... and maybe there's not enough gold left for it to be sized any bigger.

Because I have realized that my brain is like an answering machine that is now full. The only way to put a new message on, is to erase an earlier one. And I think that is what is happening. Every new thing I have to remember is just recording over top of something else. If that something else happens to be plans with you, a task I said I'd do, a common everyday word or phrase, or your name, I am sorry.

I promise I'll change. As soon as my brain is returned. Until then, no amount of effort on my part seems to be helping. For now, could you please phone me to remind me, wear a name tag, and pin my address and phone number to my jacket. And be very, very forgiving.

1 comment:

  1. Hoo boy could I swap stories with you... if only I could remember them all. Done all that, and more. In spite of talking about it just the day before, I get a call as my whole family is gathered waiting for me at my nieces birthday. I completely forgot. In seeing my doctor the other day, and he wanted to get access to a test I had done elsewhere... a fairly unique one involving radioactive dye, only ever had one. And do you think I could remember where I went for it? Nope. Not a clue. Not even which of two doctors that did the test. And he had given me paperwork for an x-ray, when it came out I recently had an x-ray, he took it back, wanting to save me the radiation. Of course, I promptly forgot THAT, and as I walked out had the nurse looking around for my lost paperwork. I've even taken to doing strange things with my medication, placing it in strange places each time like upside down on the coffee maker so I can remember if I took the morning does or not. I guess I'll have to cave and get one of those "old man" weekly pill counter containers. Sigh. And at work, right after I draft up what I want sent to a client and send it to my assistant, if she asks me a question about it, I need to get her to give me a few details about it (literally 60 seconds after I sent it) to refresh my memory. Right there with ya sister. - Zac