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, June 1, 2011

"The Heaviness of Nothing," or "Zero Takes up Space."

Zero.  The absence of anything.  But yeah, check out some numbers, you will find it in many you come across.  Like 2,085.  And without that zero in there, taking up space, the meaning of the numbers around it changes.  Sometimes significantly.

Somewhere between 24 and 48 hours after Joel died, a strange pain developed in my side.  Oh, I know some would say that it was a "psychosomatic" type of pain.  A physical manifestation of mental and emotional pain.  I suppose that in a sense that might not be entirely false.  But I am really pretty convinced that the pain had an actual physical cause.

Like I was saying, it appeared sometime in the 24 to 48 hours after Joel died.  It was the strangest sort of pain, like an ache, a REALLY uncomfortable ache.  It only started when I sat down.  I was totally fine lying down.  And I was usually pretty good standing up.  But if I sat down for longer than a minute or two, it slowly started up, a pitch of pain almost below the frequency you would notice, but gaining in volume and discomfort.  It was a great relief when sometime between 10 to 14 days, it faded away.  Because it was quite unpleasant, and made meal times or visiting with people or watching TV or reading a book, or typing on the computer all activities I couldn't enjoy for long.  It was not extreme pain, but it was pervasive and persistent.  It forced me to go lie down many times in the first two weeks.

What do I think caused it?  Oh, as crazy as this might sound to you, I am pretty sure it was the physical loss of the weight I carried when I carried Joel.  You see, for a very long time I had been holding Joel EVERY SINGLE DAY.  I am pretty sure that in his whole life, there was not a single day that I missed holding him.  The time might range between 2 hours, minimum, to 4 or 6 hours, maybe even 8 hours on days where he was not feeling well.  I held him A LOT. 

And, even though I was technically suppose to vary how I held him, I pretty much held him the same way most of the time.  Oh, it's not that he didn't get position changes.  And yes, I held him sitting up at times.  I played with him lying down.  He slept about equally on either side.  But when I held him, just for cuddles or sleeping or whatever, I always had his head lying in the crook of my left arm.  This left my right hand free for whatever.  Free to grab a kleenex, free to eat a sandwich, answer the phone, read a book, help Caeden open something, whatever.  So if he was snoozing or cuddling or whatever, he lay with the greatest part of his weight resting on my left side.  Day in and out for over two years.  Each year, more weight.

And do you know, I NEVER once in that time felt any strain or stress or pain?  I propped up my arm with pillows or on an arm rest.  I was always really comfortable, though sometimes my arm/hand did fall asleep.  But I never noticed any discomfort, any muscle trouble or back trouble or anything.

Until he died.  And after the first day of not holding his weight, this distressing pain started up on my left side.  ALWAYS my left side and ONLY when I was sitting.  It was like all the muscles in my abdomen had subtly strengthened and grown in an exact and special way to hold my child.  And others had atrophied or grown weak through lack of use.  And the sudden shock to my body of no longer getting into that particular position with that exact amount of weight caused a painful protest.  An absence marked by a very physical reminder...

For a long time I kept expecting this the emotion of numb nothingness to turn into grief.  I thought I must be in shock.  Which would wear off in time and cause me agony and tears.  Well, the agony and tears come in fits.  I wrote, a month or so ago, about "Phantom Cats and Hollowness."  About how grief was so elusive, and how the hollow feeling that I often had was so uncomfortable and distressing.  I said how I wished grief would "come when I called it."  How when the tears came it was a relief.

At that time it seemed to me that it was shock, this feeling of hollowness.  This empty feeling. 

No, it NOT a lack of activity.  Sure, keeping busy helps.  But not because I feel a lack of purpose.  No.  There is plenty of purpose here, and plenty to do, if only I can muster up the  motivation to do it.

  And yeah, doing stuff helps, but that is because doing stuff is distracting.  If you whap your finger with a hammer, it will help to "do something to take your mind off the pain" as well.  But that is not because the pain is due to you being bored or without purpose.  No.

So, back to this empty feeling.  This hollowness.  It has taken me a lot longer to realize than you would have expected, seeing as how I have gone through grief before.  But I finally realized the hollow emptiness was not caused by shock, denial, disbelief, or the surreal feeling I have about the events of the last 6 months.  I have stopped waiting for grief to arrive.  You see, the hollow emptiness IS the GRIEF.

Yes.  I finally figured it out.  Sometimes grief is lashing waves of pain and sadness.  But lots of times grief is an empty hollow feeling.  It's not about purpose or activity.  I have that.  (in fact, I am truly surprised that I do feel so much purpose in my life right now)  This empty hollow feeling is the feeling in your heart when someone you love is gone.  It is often not unbearable agony.  Not like I fell and broke my leg, or sliced off a finger.

It might just be this extremely unpleasant feeling inside.  A strange humming discomfort whenever you sit down.  The loss of something that used to be.  Because nothing can be heavy.  And zero takes up space.  That space is technically held by nothing.  But zero is important. Without it, the numbers around it would not keep their meaning...  I see, reluctantly, that so it is with this hollow feeling...





1 comment:

  1. Hi Karen....I haven't posted too much lately...but I always checking in on you and keeping up. I really think you have hit the nail on the head here....yes...grief is a constant and loss (or emptiness) takes up space. Hearing you describe the pain and the absence of Joel in your arms really made a lot of sense to me....I KNOW I would have the same type of feeling if I lost one of my children...the body has memory...the body knows...and it knows when something is missing...and if that something comes with emotional grief...the body feels it too.

    Still loving all the photos you keep posting of your beautiful boy.

    kd

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