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, May 1, 2010

Probability

Caeden has been waking up lately with a nasty, barky sort of cough. At first I thought it was a cold. But after a couple of days of morning cough with no other symptoms, I have begun to realize it is likely asthma, just like his dad.

So on Monday, I will make a call to his ped to sort it all out. On one hand, it is no biggie. I mean, hey, asthma can be treated.

On the other hand, I find this disease has stripped me of a protection that most of us have. The ability to think of unlikely things as being unlikely. I mean, we all know that the probability of being in a car accident is pretty high. But we are able to get into a car and drive somewhere, because no matter how high the stats, we know the odds are still "good" that we will get where we are going with out serious incident. We (most of us, anyway) have before, so we will again.

And when we are pregnant and thinking about all the things that can go wrong, we switch on that little protective mechanism that assures us that our fears are pretty groundless. That "most" pregnancies go well, so ours will too.

It is a very useful mechanism. It keeps us from going insane, from living in a constant state of anxiety, from being paralysed by fear.

I only wish mine was still working well. Oh, it is still there, or I'd be in a hospital. But it has taken a serious hit, and it is a bit damaged. In fact, sometimes it "malfunctions."

I have learned the hard way that when you look at stats, even when they say only a 1% chance, that 1% is somebody. And you can be somebody too.It is the sort of lesson that doesn't fade easily.

And so I was sharing with my good friend Carolina one evening about all the "ridiculous" fears that I constantly battle. Not so much with Joel. For in his case, those fears are no longer in the "ridiculous" category, and the worst has been confirmed as a certainty. Not much more room for probability here.

But in the case of Caeden. Oh my. You wouldn't believe the crazy things my mind comes up with. Like the morning cough. I started to get pretty anxious about waiting for Monday to come. What if Caeden suffered a really severe asthma attack at night and we didn't hear him?? What if I walked into his room and he was dead. YIKES! All this from a cough that only started a few days ago.

If you think that is bad, how about the time we were driving to the park for a picnic. Now there is a wonderful, happy occasion. How could I turn that into a tragedy? Well, seriously folks, I started to think about what if a rogue bear came along (yup, you heard me, a rogue bear in the local provincial park) while we were having our nice little picnic. You can imagine the horror that started to form in my imagination then. And I started to plan out what would I do, how could I save Caeden from this? I was waist deep in this horr-antasy when I caught myself. "What is WRONG with you," I thought. How did I go from happy picnic to scene of violent death in seconds?

If something like a picnic does this to me, you can imagine other things in life. Walking to nursery school and being struck by a "rogue" car. Deadly illnesses that result from small scratches or start as a little cough, or runny nose. Looking away for a second at the park to glance back at empty air. Oh, you can't imagine it! But I apparently CAN. I know regular parents face this too (from when I was a "regular" parent), but let me tell you, my worry machine is in hyper-drive!

Cause the lightening has already struck in my life once. So I have realized that yes, it CAN happen to me. It CAN happen to my loved ones. And it can be the absolute, more terrible thing. The sort of thing that previous to this, you read about and were so glad that statistics made it so unlikely for you, that you could just stop worrying about it altogether. Put THAT one out of your mind. It'd never happen to YOU.

WRONG. Now I know. No matter what statistics or odds say, bad things CAN and DO happen, even to me. Not that I thought I was bullet-proof or anything. We just ignore the part that says "possibility" and focus on "probability." It is just that little protective mechanism. And now mine has taken a hit.

Sometimes people give me that well-meant piece of advice/consolation. That we are in God's hand, and that He is in control of it all, so we can just leave it with Him. Well, I have to leave it with Him. What other choice do I have? But, honestly, that doesn't really make me feel much better. The whole thing with Joel was in His hand too, but here we are, in this terrible place. A place I can promise you I'd have NEVER willingly gone, no matter how much good God promised to make out of it. (Though I know that one day, far in the future, I will be glad that He did.)

And if you are thinking that God would never allow me to lose my only healthy child, well, I can give you an example of where He did just that, namely Job. I think when it comes to stuff like that, there are no guarantees.

Well, this must all seem pretty depressing stuff. You know I have never promised you sunshine, just honesty. There it is.

So I will say the one honest piece of encouragement that I can say to you and to myself. No matter what sort of statistical group I end up in, I do know that God will be there too. I can't stop every bad thing from happening, or protect Caeden from every evil thing that might head his way. I will, in the end, have to trust God to protect him if that is part of the plan, and if not, then I gotta say, along with Job, "though he slay me, yet will I trust Him." The real thing I control is not what happens, but who will be there with me through it all. And I do know who I want that to be.

Pain, loss, disaster, all can not be prevented. But nothing whatsoever can take me out of God's hand. He is one thing I can hold on to, and no one can take that away. No matter what happens. And so I rest in the shelter of His love.

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