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!





Saturday, August 7, 2010

Water-logged

One thing I hate about life with Joel is the dunkings.

I can never seem to prepare for them. Even when I'm anticipating one, I can't anticipate it.

I am floating along in the boat. It might be a bit choppy, but we have hit equilibrium, so it is relatively calm and stable.

And then - DUNK. I'm suddenly in the water.

It really reminds me of the summers I worked at a camp. Let me give you some of the background, for fun (for MY fun, since I loved that camp). I spent 3 summers, from April to August, working at a camp located on a tiny island between Vancouver Island and the mainland of B.C.

It was one of the best things I've ever done with my life, though I came to it a bit later than most people I know. Most people I know started working at camp immediately after they were too old to attend camp themselves. I have only been a camper once in my life. And I didn't head to camp to work until I was 26, which isn't exactly ancient, but I was the oldest person there who wasn't the cook, the nurse, the bus driver, or the camp director.

And due to my inexperience, I got a lot of "on the job" training, and usually from people who were a few years younger than me. It was all totally great, though at times I sure felt like a dweeb, the uncoolest person at camp. Everyone else knew how to canoe, how to shoot a bow and arrow or rifle, etc. I was good at craft shop though! One summer I spent a whole month working there, teaching campers how to make "stained" glass, or paint wooden knick knacks.

I got a lot better at canoeing over time. And I learned that I absolutely LOVED row boats. Though at camp we didn't have any sleek racing skiffs! We are talking what was in essence a yellow bathtub with oars. Honestly, the row boats were not really considered too cool by the other staff. Canoes were popular, and kayaks. Clunky yellow row boats, not so much. But I loved them, and eventually had the rep as the best rower at camp. Perhaps a dubious distinction, but I was proud of it!

All three years there I wanted to learn to kayak. But one thing held me back. The wet exit test. Before I would be allowed to take out a kayak, I had to roll it over, so I was upside down in the water. Then I had to "sit" in it calmly and tap on the sides of the kayak for three counts before I exited the kayak and came to the surface. They made us do this to prove that we wouldn't panic and get trapped under the kayak if it flipped.

I made a few unsuccessful attempts. It really wasn't so much that the freezing cold shock of the water disorientated me. I wasn't really panicked. I just couldn't seem to "stay" in the kayak. Back then I was, um... let's say A LOT slimmer. And working at camp, also a lot more muscular. (that's my story and I'm sticking to it.) I would try to tap the kayak three times, but I just fell out into the water as soon as I let go of the sides.

And though I'd try and explain, the kayak teachers wouldn't hear it. Sorry, that was only TWO taps, and I need THREE. Or, even worse, "You tapped three times, but it was really a bit too fast." (Because I was falling out of the kayak, not because I was panicked!)

The reason they didn't believe me had a lot to do with the very nature of the ocean itself.

The ocean is utterly captivating. From like a glass, to choppy little waves, to great monsters. You never know what you will find underneath. I learned about limpets, gooey ducks, urchins, starfish, bull kelp, oysters, crabs & more. Tides change the face of the world several times a day.

I learned enough to do a "beach study" with the campers. My teacher was the camp director, Dan. Let me tell you about Dan. This is becoming a story, within a story, within a story. But Dan has since passed away from skin cancer. I guess this is my little tribute to this special man.

I'm not sure what he thought of me when I first arrived. He did hire me, surprise, since I had no camp experience. I think what might have cinched it for him was when the application asked why I was applying for camp and I wrote the whole story of how I had quite my job last minute because I felt it had become unethical and I believed God wanted me to work at camp instead.

In any case, I think his first real impression was that I was a bit older, sort of stuck in my ways. Because one of our jobs was to clean the camp. I was not too impressed with the camp cleaning supplies and asked if he had any Mr. Clean. They didn't.

Myself being the somewhat independent-minded young woman that I was, and having certain ideas about cleaning and how it should be done, I promptly purchased some Mr. Clean to use when it would be my turn to do cleaning.

I think this whole episode annoyed Dan until he saw how I cleaned. I am pretty sure he thought I was some hottie-tottie know it all sort of person, because he sort of admitted as much later on.

You'd never believe it now, I'll bet my mother-in-law is in utter disbelief due to what she finds in my house every time she arrives with her whirlwind of cooking and cleaning to help me out. But I have been a mighty fine cleaner in my day. Trained by having to clean hotel rooms. Bathrooms in 5 to 10 minutes, everything must be polished and there can be absolutely NO hair or dust ANYWHERE. Even the bathtub and sink must be dried out. And the TP folded! Yeah, row-boats and 10 minute bathrooms, that is my claim to fame. Of course, keep in mind some of the cleaning competition at camp was not only 18 or 19, but also half of them were MALE and 18 or 19. They didn't stand a chance.

Anyway, the next week Dan presented me with a HUGE jug of Mr. Clean, just for me, and a sort of apology. (Which I'm not sure I entirely deserved) He told me "When Karen says it's clean, it looks clean, it smells clean, and it IS clean." I think from then on I was sort of an adopted daughter. He was a great man.

So, one thing Dan taught me about the ocean was the word "Iconocaucusgrandulocious." You say that like it is spelled. He said that though he's taught beach studies for years, invariably some one will bring him a something that he has never seen before and has no clue what it is. In which case you promptly tell them it is an iconocaucusgrandulocious and very rare indeed. Dan was right. You can live on the ocean for years and years and still find strange new wonders.

For all the great stuff about the ocean, it is absolutely frigid. (The Northern Pacific, anyway) I would wear a life jacket whenever swimming, not because I was afraid of drowning, but because otherwise it was too cold to last more than 2 minutes. You'd just jump in the swimming area, stay in at max. about 10 minutes and then get out and warm up. Because otherwise you really could get hypothermia. Seriously.

The kind of cold that makes you feel like you can not breathe. And it doesn't matter that you are jumping in with this knowledge. You prepare yourself for the cold. You brace yourself. But when you jump in, for a few seconds you really can't breathe. Then you sort of acclimatize (read get so cold on the outside that you are numb) and it's not quite so overwhelming.

And that is what I am talking about (in an unusually round about way). The way my life with Joel makes me think about taking a spill into the ocean from a kayak or canoe. (The only way to tip one of the yellow bathtub boats was gross incompetence) One moment paddling along nicely. The nice moment - DUNK! Into the shocking frigid ice knife cold. Thing is, just like when I tried to do a wet exit or when I jumped in on purpose, knowing it will happen is absolutely no preparation for it.

And even though the changes of life for Joel are not usually as instantaneous as an ocean dunking, they still seem as shocking.

So I brace myself for the next change. I remain aware that at any time Joel could: have a prolonged seizure and need 911, suffer from adrenal insufficiency, develop a more serious liver problem, or even a life threatening bleed, aspirate and develop a fast-acting pneumonia, lose his hearing, break a bone.... does the list seem endless to you?? Because it sure does to me. So though I try not to panic when ever there is one of his innumerable fevers, or he is unusually fussy, there is always an icy thread of undercurrent there.

And every time something like this happens for real, even if it's something not quite as serious - DUNK. An icy coldness, knife-stabbing, I-can't-breathe panicky-ness. It's not really a physical feeling (usually). It's the emotional equivalent to what I have described. The emotional reaction to a sudden change in temperature and circumstance. Emotional dunking.

I hate it. And just like the physical dunking, it doesn't matter how many times it happens, or how much I prepare mentally, it still would take my breath away, so to with this emotional dunking. Physically, in a few minutes I'd be ok. I'd get my bearings, relax, and trust my life jacket to get me through. I'd start to breathe again.

And emotionally, I'm wearing a life jacket too. I'm not going to drowned, or freeze to death. It's just those first few "moments" (days, maybe months?) while I get my bearings. That life jacket is there, keeping me afloat, and staving off hypothermia, all the time. It is just the perceptions while I catch back my breath. It's the first response of panicky-I CAN'T BREATHE- edness that I hate so much.

The time it takes to realize each and every time it happens that I'm going to survive and be ok. That I'll get my breath back. That, no, there isn't anything I have to DO. I just have to trust. Because every nerve in me is screaming that I should DO SOMETHING. It takes a bit of time for that first reaction to slow as I re-remember time and again that there is nothing I can do. Just relax and breathe. Let the life-jacket do the rest.

Until it's time to upright the vessel and climb in. Get underway on the journey again.

I'm so grateful to have a life-jacket. And I know that in the end, no permanent harm done, I might even be stronger, or more importantly, more compassionate. But oh. Oh. OH. I HATE the dunkings!

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