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!





Sunday, September 25, 2011

Without Walls.

I meant to write this blog a week ago.  I started it.  Then life sort of happened, and I come back to it now, a week later...  So it's about time I finished it, I suppose. 

Before I get back into it, though, I just want to give a quick update on Star.  She is still in ICU, and still on the ventilator, though they have been able to dial it back and let her to a bit more of the work of breathing.  She is looking better and her heart rate is back to normal.  I do not know what the future holds, and we are sort of waiting to hear whether she will one day be well enough to get home and need a CPAP and oximeter...  Until then, thanks for caring and for praying. 

So, on to deal with the rest of this blog.  The title says it. Wall-less. A lack of walls. There are no longer walls around my heart. Or at least, what remains for "protection" would be more like a tent, then an actual building of some sort.

Usually we don't think of walls around our heart like a good thing. And in a lot of ways they are not, I suppose. Still, we all sort of have em... If they become a fortress, the walls are impenetrable by others, and very unhealthy. But walls can also be a sort of shelter.  And others can enter a home if
they are invited... maybe some walls are good, as long as we leave plenty of doors and windows.   And then we say we need to "guard" our hearts against certain things...   So there may be a sense that we should be careful about the sort of things we let into and out of our hearts...??  It is a complicated analogy, because hearts are complicated things.

During this three year journey, while Joel was alive, I have felt the walls of my heart disintegrate. I wrote a blog, back a long time ago, called "raw," explaining a part of that. I was going to say, now,  that I have felt like my domain was under a continual bombing run. But in keeping with my blog name, I will
instead say that many, many earthquakes were shaking me.

And so, defenses were crumbling... there were gaps and holes appearing.  And since Joel has died, it feels like that last earthquake really finished off the remaining walls around my heart. I stand in the rubble gazing at a tilted door frame. There is the heap of what was the chimney. On the other side, a bit of wall still holds up an unnecessary window, as the breeze blows through where the rest of the wall used to be. 


This is not all bad... I mean, if you live without walls, there is lots of fresh air. You can look up at any time and see the sky. At night, the stars shine bright. And beautiful.  Sometimes walls are barriers.  I feel like there is a way that my heart has been opened up so completely to other people and their pain, and to God, moving my heart...  it is a bit hard to understand, maybe, if it has not happened to you, I think?

I have slowly gotten used to it. And so, I cry "at the drop of a hat" as the expression goes. Or over spilt milk. Or anything else. I'd give you a list of what things make me cry, but there is not always a rhyme or a reason to it, per Se.  But I cry.  And as the walls have come down, I bother less and less to keep the tears in or stop myself from just going with it.  It can sort of be a losing battle and a waste of precious energy.


Last Sunday, I had a little cry in the baby room during Sunday School.  This cry was because I was thinking about the offers I had made to friends to come to my home to pray, read the Bible, and to walk "the Way" of Jesus with me.  And I knew that I had so much time to give to service for God.  Yes, I was thinking about that and I was crying.  I was crying because I knew it was a huge gift that I was in a position that I could offer my home in that way, my hands that way, my time that way... and because it was a gift that I had in large part because Joel was not with me.  And I cried.  

I was not sad that people might take me up on my offer, because it gave me joy to make it.  I was deeply pained that I could do it because of the absence of my child, and I wanted my son so much.  I cried because it hit me how much I wished to be able to just sit and hold him and care for him.  I write this to you "my reader" knowing that in a real sense, this might be something very hard to understand, or maybe you just can't understand...  I will just say that once again, I had a release of tears.  A real cry, right there at 10:30 on Sunday morning in the baby room.

A friend came in upon me.  I don't apologize as often these days for tears.  And this was a friend who understood about them.  She said something about how she appreciated my heart, showing through my tears.  I told her not to be too impressed, because I couldn't really help it.  And she pointed out that while now the tears came as they came, it was still because I had chosen the way of tears, and not the way of bitterness and hardness. 



At the same time, having nothing for walls makes me feel vulnerable at times.  I find I am so strongly sensitive.  OK, I always have been a bit of a sensitive person.  But now sometimes I am just so defenceless.  That is how I feel.  I get hurt so easily.  It doesn't take much. 

I feel criticism will strip the flesh off of me.  Praise makes me very uncomfortable, but criticism really scares me.  I am afraid of it.  I confess that I have cried over the smallest slights or tiniest edge in a voice.  I don't know how to let anything roll like water off of a ducks back, because there are no feathers.  I am laid bare.  I am vulnerable.  I try not to let other people know how easily I bruise these days.  I don't want them to tiptoe or feel guilty just because they treated me like everyone else.

But what I crave is gentleness.  I crave people who are gentle.  I have always been attracted to people who were spirited, spunky, honest and direct.  And yes, I still like those people.  But I find a new appreciation for people who know how to be gentle.  What a gift that is.  Soothing hands on open wounds.

And oh, how good it is that Jesus could be such a gentle person.  No matter how people sometimes react to us, I can say that God has never been harsh with me.  His hands are so very gentle.  And when I feel afraid of being hurt, I remember this prophecy about Jesus.  "A bruised reed He will not break, And a smoking flax He will not quench..."  I remember my Savior is also so gentle.

I am a bruised reed.  I am a smoking flax.  Thank you Lord, You do not put out my little fire...

2 comments:

  1. Hello, my son (4months) was just diagnosed with ASLD, if you would mind helping me I would greatly appreciate it, any information on research, hospitals, etc. Please email me at lauren122885@hotmail.com if you do not mind.

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  2. Karen - Beautiful as ever!xx

    Lauren - please go to GFPD on Facebook, there are lots of great people able to help and offer advice.
    Wishing you lots of luck on your journey xxxxx

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