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..


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 13, 2011

Singing in the Car.

There is a continuing tension I feel in speaking to other people about how a relationship with God transforms my life experiences, particularly those relating to Joel.  Even when I type the previous sentence, I feel a part of it.  I just said I had a relationship with God.  If you are not familiar with this idea, it could sound nutty, arrogant, or self-righteous.  So as I started typing this paragraph, I had a wry smile on my face... Particularly because at times I AM nutty, arrogant, or even (gulp) self-righteous.

So, about this tension...sometimes people say that I must find that my religious views help me through the loss of Joel.  It's hard for me to know where to start with this.  Because at other times, I wonder if some of the things I say sound trite... like I'm being a good Sunday school attendee, so I know that the right answer is automatically "Jesus."

And when I write this, I smile at myself again.  Because that IS the trite answer that children quickly learn to shout out.  But then again, at the deepest level, don't I actually believe that "Jesus" is the answer to all "the big questions" of life?

OK, enough of this abstract stuff.  I want to be real and honest.  About this tension I feel.  Because I am sure that having God here, with me, changes everything about this journey aka "life."  But I'm sure it is misleading and highly inaccurate to give the impression that I have found, or believe that it somehow lessens the pain.   Or precludes certain experiences of the less than pleasant sort...

Still being abstract, I know, but this isn't easy to nail down...  Let me say I have heard a few people remark at times that they didn't feel someone was being totally and completely honest when they talked about God, difficulties or sorrows, and how those two elements related to their life.  That they spruced things up to be conventional.  That maybe they were giving answers they didn't completely believe themselves.  Or maybe more accurately, answers they felt were the right ones, the ones the Sunday School teacher wanted to hear, even if they didn't feel much conviction about it themselves.

And one of the things I have been wrestling with is what, exactly, the difference is, being in relationship with Jesus.  I'm disregarding the whole "truth" part of it right now.  I mean, I don't believe what I believe BECAUSE of what I think it can do for me.  You know what I mean.  Believe you can be ANYTHING and you can do it.  Therefore, believe you have a relationship with God and you WILL feel better.  This is NOT my mantra... I have a very "old-fashioned" relationship to the truth, things are true or they are not, imaginary friends are nice when you are child, but if I am playing some complicated game with myself where God is my imaginary friend because I think that makes my life better, well, that isn't intellectually viable to me.  I mean, I can't live that way.

So I believe in God's existence and in His personal nature because I am convinced it's true.  And I've not been questioning that...  What I have been mulling over is, does being convinced of this truth make a difference in experiencing grief...??  In how I cope???  In the person I am at my core..??

I can't come up with any real, straightforward and simple answers, in all honesty...  Because I do know people who live with out any real belief in God who seem to cope quite well.  Who seem to incorporate grief into their lives and make good out of it...  Who are as healthy and well-balanced as anyone.  And then I know of some who seem to have a very deep and abiding belief in God, and yet they struggle.  Life almost seems to have them by the neck at times...

Of course, part of the problem is how do any of us really know what the "best coping" looks like.   Or if holding on by our fingernails for awhile might not put us in better stead one day then seemingly coasting through...  And I can't really answer that when it comes to other people... I haven't lived long enough, I'm not wise enough, I haven't known enough people to detect these things.

I am unable to compare myself with others.  I really can't tell you.  And I suspect that it is unwise to do so in any case.  Here is what I can tell you though.  I can tell you about my experience on my son's birthday, and about my realization afterwards...  And then you can decide what you think about that.

We were headed out for a lovely pizza dinner at my friend Shannon's parents place.  It was Joel's birthday, the first one without him.  I don't know what that means for other parents, I only know that I had braced myself for a tough day.   So far, it had been O - K.   And we were driving out and it was about a 30 minute drive.  And I started to sing.  I WANTED to sing.  I do not even remember now what songs I was singing, but they were songs to God.  Praising songs.  And while I sang, I was filled with what I can only call "assurance."    I was going to say that God spoke to me.  But then, what did He say?  How do I know it wasn't just feelings?  No, I don't hear an audible voice, no there was no burning bush.  I'm not making that sort of claim.  Maybe "spoke" is the wrong word...  So that is why I say it was an assurance.  I was filled up with the sureness that God did love me, even though both my son and my father had died within months of each other.  And I was filled up with an assurance that one day it would make sense, and something beautiful would come out of it...

There were tough moments too that day, that week, and continuing on.  If you check what I wrote, you'll see I didn't feel any sort of impression that I was done with pain or sadness.  I didn't.  I just felt an assurance that God would be with me and that, yes, as I said, all will be well.

Later on, I thought about it.   It is so hard for me to explain on one hand how painful it is to miss my son.  It is so hard for me to explain that some days I just don't want to give to anyone else.  That sometimes I have no energy.  And that praying can be a battle.  AND that at the same time, I am sure that keeping God close does make this BETTER, even though I am not sure that the word "easier" applies.

And then the revelation  came to me.  I was thinking about how when Joel was alive, each day was hard, but each day had an incredible joy.  Every day I cried, but every day I laughed too, out of the joy of just being there with my son.  It didn't take away the pain.  It didn't mean I still didn't feel overwhelmed by doctors and medical procedures and seizure management.  Some days were very hard.  But every day I had such joy in being with my son.  I could not hold him in my arms without feeling the happiest rush of love, and with it, a great unquenchable joy that he was mine and he was with me.

So, I realized, it is with God.  I can't tell you that it isn't still very painful.  I still have to go through all the pain.  I still have to face the difficulties and frustrations.  But King David once wrote, in a Psalm "In YOUR presence is fullness of joy."  I find myself strangely happy in the midst of this tragedy,  if by happiness you mean a blessed, peaceful contentment...  I don't know how to explain how you can be content in a life where you constantly long for your child.  But my life with Joel was full of  joy even though it was full of pain, sorrow and difficulty.  And my life with Jesus is still full of joy, even if there is nothing easy about loss.  It is true, in His presence is fullness of joy.

I'm going to put up some pictures from the conference now.  I hope what I was trying to explain about God and what He means to me through this, did not sound trite.  I hope it didn't sound like Sunday School 101.  Because I promise you I paid to learn this truth, that the presence of the Lord gives fullness of joy, with my own tears.  There was nothing cheap or trite about it.

 This is Sam.  He is my friend, Shannon's boy.  I have some pictures where he has the biggest smile, but they came out really blurry, and at least in this shot you can see him walking (with some assistance).  Pretty cool, and did I mention that Sam not only has a PBD, but is almost done with treatment for leukemia as well.  GO SAM!
Cute as a button!  This is Kenna and her mom, Vicky.  I am just getting to know them, and looking forward to it very much.

This is Ginny.  Melissa Gamble is her mom.  I have a good picture of Mel somewhere too, and I'll put it up.  The first time I spoke to Mel on the phone, I thought "She sounds just like Ellen Page!"  Ginny is super cute, but I didn't get to hold her much because she has more refined taste, and preferred her mom...

This is Ciera.  Sorry, Jen, I just got part of your face!  I love this picture!  Ciera is trying to grab some of the decorations from the fiesta.  Yes, she has a PBD just like Joel, but she can see well enough to grab for an object.  Actually, each of the four kids I put up here has good use of vision and they are all in some stage of walking, assisted or unassisted...  Wow.  Wish I could have shown them to Joel's doctors...

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