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!





Thursday, March 25, 2010

Emerg

You think about strange stuff when you sit in the emergency rooms in your local hospital. Like that Emerg and emerge sound the same, and are you in the emerge room, and where do you emerge from and what into??

Made me think of butterflies emerging from cocoons, and of metamorphosis and changes and all of that.

Cause I just spent a good amount of time in the emerg at Children's Hospital. About 12 hours, to be exact. And then I got to go up to a place that I actually had NOT been before, the PICU ward of the hospital.

Where Joel is being closely monitored due to the issues he is having with breathing during sleep. As in, he's not breathing well during sleep, and his oxygen levels are dropping and at times I have been worried that when his airway obstructs, he's just not going to bother trying to get another breath forced in there. Yeah, a real barrel of monkeys. (sarcasm, that lowest form of humour, which tends to come out of me when I spend too much time trying to be cheerful and funny in the emerg, or emerge room)

But in some ways, I can't really hate the emerg at the hospital. I say I do, cause NO, I do NOT what to spend any time there whatsoever, but it is really a sort of love/hate relationship.

Because you sort of feel, once you get there, that everything is going to be ok. The nurses are cheerful, the staff tries to make you smile, the lights are bright, the place is bustling with medical people trying to help you. So you sort of feel, now that you are there, its ok.

Not too logical, really, given the sorts of problems that can land you there. I don't know why being hooked to a monitor makes you feel like breathing is being taken care of, as breathing can still stop at anytime, and it is really anyone's guess if all the king's horses and all the king's men can put it back together again.

Before I type too much more, let me say that I think Joel is going to be ok. I THINK so. Or maybe I think so is more correct. Never any guarantees, so you gotta know that I am worried. But the best info so far would suggest that they can clear up the breathing problems and things will be ok.

Which is good news, because for a kid like Joel, that is not always the case. Which is what that icy tingle I get when I really think too much about it is reminding me.

But I am thankful for the emerg. Cause they always take things seriously, they never just send me home as if I am over-reacting. That is a relief in itself. Though scary too. I mean, sometimes it is not a bad thing to be told you are over-reacting!!!

And of all the doctors Joel has, I sort of feel like the emerg people usually have the clearest picture of the whole of Joel, if you will. Ped sees him for "everyday" stuff, and sort of sucks at anything else. Metabolics knows all about, well, metabolics?? Neurology knows about the seizure stuff and MRI stuff, but not really the whole picture of Joel. It is those emerg staff that actually seem to be the ones who put it all together into one.

The nurses are great too. This time they did their best to keep me from utter insanity as I sat by Joel staring into space as we "monitored" Joel together for about 6 hours. So they asked me all about his illness, and what it was like for me and stuff. Let me cry a bit, or crack weak jokes and then laugh like I was really this totally funny comedian on "Who's Line is It Anyway?"

This is one of those long wandering sort of texts, and doesn't seem to fall too much into any one neat little topic, like some do. That's cause I am taking you with me now into the darker places. I did warn you that life with Joel would take me (and thus you) there. See, I did know it was coming, and if Joel does ok with this one, then they are just coming once again, but we are not going to escape from them. The dark times are unavoidable.

It is usually the best thing to buck up and face them head on. That is what I find. Sort of like when you are going to rip a band aid off. Or when you are feeling sick, and then you get that knowing feeling "Yup, I am really going to puke in a couple of seconds." Or see the dentist or go into labour or what ever it is. You can dread it and shrink from it.

You can do like my little guy, Caeden, did when he had to have eye drops for his pink eye. He fought, kicked, screamed, and cried while Steve held him down and the drops went in. In the end it was a big fuss to no effect. Those eye drops were going in anyway! You are going to puke, regardless! That baby is coming out! You only seem to make two horrible times out of one for yourself. Now you are still going through the pain, but you are also going through the writhing, squirming, useless but horror filled efforts at avoidance.

So every time something like this happens, every time that darkness hits and I have that "It's all hitting the fan" sort of feeling, I try to straighten up. Grit my teeth. Refuse to think about how horrible it is going to be, and just do it. Get the job done, and try and find some guts lurking somewhere in my shrinking body.

So where is God in all this? Honestly, sometimes He gets a bit forgotten in all the fervor of the events. Darkness can be an oddly busy and distracting place. Sometimes it is dark, but it is still loud. Like lots of thunder, but no lightening to brighten up the sky. Still, He is there. Want to know another really weird thing that came to me in emerg?

Besides emerg, and emerge, and butterflies?

It was part of a favorite song. It is really beautiful, so I'm going to write the words here for you.

The river of God
is teeming with life
and all who touch it
will be revived.
Those who linger
on this river's shore
will come back thirsting
for more of the Lord.

The river of God
sets our feet a dancing
the river of God
fills our hearts with cheer
the river of God
fills our mouths with laughter
and we rejoice for the river is here.

So there you go. "In the night, His song shall be with me." (Ps. 12:8)

Emerg. Emerge.

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