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!





Wednesday, October 19, 2011

Prequil Number One to "Thanksgiving."

Did I spell "prequil" right?  It isn't in my dictionary, and my spell check didn't pick it up...  So, I wrote a post on "Thanksgiving Part One" and now where is part two?  Well, I wrote that part a few days ago now, but just wasn't convinced I should put it up.  For a number of reasons.  It was really long, and took a lot of explanation to get to the main point.  It then didn't really do the main point a lot of justice.  I just really didn't like what I wrote...

I often don't really know if what I write has any merit or value, other than me expressing myself.  Which is exactly what happens when I write a post and then don't put it up on the blog.  While at times posting something on this blog is an exercise born of vanity, I think just as often it requires just a small amount of courage.  "My thoughts are my own," yes, that is a thought to be valued.  Once they are placed out in the blogosphere, they are no longer private property and invite all sorts of comments, replies and judgements. 

Not that you, my blog readers are not supportive or that anyone is openly critical.  But many times when I put up a post there is a cringe inside and a "quick, hit the button and stop thinking about it" moment before I post it up.  Because i am aware that my thoughts are not always really that amazing or great.  I can aspire, maybe to greatness, or maybe just a reasonable amount of cleverness, for a post or two.  But a continuous twice a week flow is quite, quite beyond me.

OK, now this blog seems to definitely have taken a turn to vanity, cleverly disguised as humility, and it is time to get to the brass tacks of it and quite goofing around.

Quite simply, I found my blog about "Thankfulness" apparently needed some background work.  And most of all, I found it was really inadequate to what I wanted to say, and requires a lot more time and effort. 

For it was just full of meaningless generalities.  So I am planning to write a blog that is specific and that will take some work, but mean so much more in the end. 

After all, every Thanksgiving don't those of us who pray say "thank you for shelter."  Very generic.  And thus, really, only a small amount of thankfulness (speaking for myself, you may disagree). 

But really, examining that statement fully, I would have to say a lot more to really get at the heart of it.  For I am thankful that Steve and I rent a house from my brother who gives us a rent that is many pegs down from reasonable to insanely generous.  And in this housing market, his rent has remained the same, which moves it from half of what he could be making to more like a third. 

And I am thankful that this house had a WASHER AND A DRYER.  I do not have to go to the laundromat... when in many parts of the world, a laundromat in and of itself is a crazy luxury.  I have a DISHWASHER, in fact.  What's more, I have so much water that I extravagantly waste it.  I run the tap until I get the hot or cold I desire.  The lukewarm water just goes down the drain.  I take a bath, and pull the drain.  No one reuses that water for another bath, or to wash clothes in.  And all this water comes straight to me, into the exact receptacle where I use it, sink, toilet, bath, washer...  That is just crazy...

In this shelter, I have the ability to adjust the temperature to the exact measurement I like.  It's not even a range, like 65-75.  I put 70 on the thermostat, and my home is maintained there!  Think about that!  No hotter or colder than I choose!  Not to mention all the blankets and pillows.  That my chairs are not just a place to rest, but that they are comfortable, and that I can even pick out the colour I prefer them to be.

My shelter is not just a shelter, made of corrugated tin, or canvas and sticks, or mud.  It is a HUGE place, with many rooms and all sorts of comforts and conveniences.  It is staggering and mind-boggling, the things I have.  I know people who won't even camp for fun.  How fortunate am I, are we, that what I do for "fun" in the summer is the way many, many people in the world live all the time...

This is what I mean about thankfulness... it is one thing to glibly say "Oh, I am thankful, God, for a home."  It is another to really, really think about what that means...

And I was going to write some things on my blog about Joel, and what I am thankful for.  But I found I was writing things like "I am thankful because Joel taught me so much about waiting patiently."  Very generic.  Says almost nothing, really, though.  So I wanted to really take the time to pick some things apart.  Oh yes, "unpack" statements like that.  I want it to be specific and real and absolutely from the depths of my soul.

And so, my post is delayed.  Coming soon.  Or maybe "Coming eventually" would be more honest....  :)

Until then, I have to write some update posts about Caeden, and such like.  I'll try and get to em.  I have been having some "avoidance issues" ever since Thanksgiving.  Not been online as much.  Struggling with balancing grief with the rest of life.  And as odd as that may sound, that is not a sign that my dealing with grief has gotten "worse."  It is because I am trying to do more.  Trying to be a better wife and mother, and take more care of my home, etc, etc.  Which means doing more, which means less time to rest or to grieve. 

And I am struggling with how to make that work, because grief is so up and down.  But it is really hard to say "Well, yesterday I cleaned the bathroom, did the laundry, baked cookies and made a good supper.  But today I only feel like lying on the couch with Kleenex and a good, distracting book, and only coming up for air to care for Caeden and make supper."  It is starting to look more and more like "laziness" on my part, and it feels hard to justify that to a husband who is working so hard at a difficult job. 

 At the same time, at times my grief still lays me low...  I find myself falling into the "time trap."  I myself am thinking "well, it has been over SIX months now, surely I can get up to all the regular household tasks, it isn't like it is that demanding with only one child!"  It is quite a task,  separating it all into reasonable and good expectations, particularly when if there is one thing other people appreciate, it's consistency!  And right now I feel just oh so inconsistent! 

I know there is nothing magical about "six months."  I know that when defining the grieving process, it is more accurate to say that it is learning how to live with and around the pain of loss, than to say it is a magic formula for lessening the pain.  I know that I'm better off pacing myself in this.  Mostly I just feel guilty that Steve's job is so very demanding, and I can just literally "rest" myself at home, and recover at will... 

So, pray for Steve.  I don't know how he manages to do his job so well, with so much stress, and with the burden of grief as well.  Ok, I DO know.  He trusts in God, and he asks for His help every day.  But it is hard to see my husband carry such a burden.

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