Saturday, May 19, 2012

Random Thoughts a Good Ways In

About a year ago I wrote two posts that I still think about quite frequently: this one and this one. Today, a year later, in re-reading these two posts, I'm struck by a few things:

* Man did I have more energy (or youthful enthusiasm) a year ago to write stuff that elaborate. If anyone reading this is just beginning a journey with a special needs / terminally ill child, nothing and no one can prepare you for the exhaustion that will steadily creep and creep in. Our good friends from Minnesota who lost their boy to I-Cell a year ago told us it can take up to 3-4 years to fully restore your energy levels (that is, after the heart-wrenching passing you hope never comes, so it's not like you look forward to it). In re-reading those posts, it was obvious that a year ago we were still tapping into youthful (normal life) energy reserves. A year later ... ha ha.

* Inevitably, people can't relate, or they forget. There's a lot of truth behind the saying, "Out of sight, out of mind." When you don't see things, why would you continually think about them? That's why we pray, set goals, etc... to remind us of what's important and to work against our cognitive short-comings. I definitely feel like I'm writing this for people afflicted by ill health (their own or someone in their family's), and you folks know what I mean when I say that the realities of our situations prevent us from getting involved in normal things. The doubly bad thing is that the situation further decreases opportunities to connect with normal people (i.e. doing "the usual with old friends and family). And the triply bad thing is that when you do re-connect with them, you realize you're living different realities, and you can't catch up like you would after a normal break.

* I can't read at night anymore like I used to pride myself in doing (too exhausted), but I can usually stay awake to watch 10-15 minutes of a Youtube video/documentary so that at least I'm learning some things. Last night I watched the 15-30 minute range from this documentary about Buddha, who – let's be honest – was one of the most positively influential human beings to ever walk the earth (seriously watch it, it's good). Anyway, I've long been acquainted with his story, but watching it last night I realized that people facing terminal or life-altering illness (either themselves or those caring for those who are) are super Buddha's all on their own ... and maybe it was the actor in the documentary or my impatience for the tens of millions of princes and princesses I see on TV, the streets, online (etc), but I thought, "My god ... seriously!? You founded a religion based on overcoming naivety?! Like that's cool and all, but if it worked so well for you, does that mean we need a cataclysmic world event to snap everyone out of the fog?" And then I thought, "How much fog do I have left to clear," and tried to shift back to humble observer ... like Buddha.

* Lastly, my little girl is still with us, and I'm so happy. A year ago, I really didn't think she would be here this long. Amy's last post about the poem was amazing, really. I know it's just a contrived dialogue, but I can say, one year later, after meditating and studying and learning as much as I can about I-cell (which leads to DNA, which leads to molecules, atoms, quarks, galaxies, multiverses, infinity, etc.), my spiritual conviction is stronger than ever. Will we ever know what it is? No. Will we ever know that there is a god? No. Will we ever know that there isn't a god? No. Faith is all we have, baby. And my gut and heart of hearts tells me that Gabrielle has always been with us, and will be after she passes.

One year later, so much has changed. Our little angel. So much of everything, all at once, in large and usually painful doses, and so much better for it.


  1. I have been thinking about your family for days now. I remembered a night w/ Niall many years ago when we stayed at your basement suite somewhere in greater Van before we took off travelling.You and Amy made us spaghetti and we played Cranium and drank beer.Just this morning I was thinking about how innocent those times were and how sometimes when times get tough you wish you could just morph yourself back to those "normal" moments. Your post read my mind. I have so much respect for you both right now and in an odd sort of way, envy the faith you have been forced to find. Your daughter just jumps out of the page at me and without ever meeting her...has captured the hearts of my family!

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