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, June 11, 2011

Death Day.

I'm feeling a bit apprehensive as I start to write this...  I'm not sure how difficult or painful it is going to be.  I'd like to just write it, my thoughts, without being too engaged in the emotions, but I'm not sure how possible that is. 

I'm also not sure this is a one blog sort of post.  I sat down and wrote about this day on my word processor, and at 8 pages, I was not yet done.  This post will be a bit different from that writing, but still...  There is more than my heart can contain involved in that day, and how many words are necessary to capture it?

So what do I tell you about the day my son died?  A day so painful that barely thinking of it usually dissolves me in tears.  What do I want to say?  And what do you want to know?

Here is my warning.  This might be a very disturbing post for some of you.  Do I think you should read it...?  Well, yes, I suppose that is the obvious answer, because otherwise would I put it up here?  But also, read with caution.  If you have already lost a child, you might not be able to read it.  Before Joel died, I read what some friends had written about the death of their child.  I found that helpful.  I did.  And also deeply difficult.  I had to sometimes read in "bites," stopping when it was too much and finishing later...

I reread my post I wrote on the day that Joel died.  It was all the truth.  I did not utter one false word.

But here is what I have found about that day.  On the day itself, I was carried through.   On the day itself, there was so much peace...  I can't explain it.  And I wrote the blog that day and said it was not horrible, like I had imagined it would be.  And I have discovered that was true for that day, because I was carried through.  No.  That is not accurate.  Something was lifted from me and carried for me. 

All the horror.  All the parts that were what I can only label as "traumatic."  All the worst and most difficult things about it.  It was as if God said,  "These are too much for you right now.  I will take them from you.  You will hold your son.  You will be free to love him, because I will bear these burdens for you.  Later, you will have to deal with them all.  But now, rest in my peace.  I will carry them for you."

And so I find that what the DAY ITSELF was, is different from how I feel when I REMEMBER it.  I have feelings about it now, that I never felt on the day Joel died.

How can I explain it?  One event happened that day: My son died.  But really this one event is divided into two concurrent parts.  There is the sacred.  And the profane.  And I really can't think of two better words to describe it.  They are almost perfect in describing what I am trying to explain...

Sacred means: dedicated to God, safeguarded, or inviolable.  And profane means: blasphemous, obscene or to violate.

And these two parts I witnessed clearly.  It's not that the profane part was hidden from my eyes... somehow I only had to feel the sacred part.  The only way to describe it is to say that somehow the profane part had no weight for me...

So let me go on about the profane part of it for a bit.  I'd rather end with what was sacred.  It is the profane part of my son's death that really pains me now.  Beware...

Though at the time I saw, but did not carry it's weight, in retrospect it has a traumatic heft to it.  The part where I heard my son's breathing.  Let me stress that most of the time Joel seemed relaxed.  His face seemed clear of distress, and when we briefly saw signs of stress, we gave him a larger dose of morphine.  I really think that for Joel, he did not carry any of the weight of dying either.  I saw peace on his face.

It does not entirely ease the pain of the memory of his breathing.  The breathing that said his body was making a last ditch effort, pouring all remaining energy into trying to get enough oxygen to live.  It was an autonomic response that Joel had no control of.  But my, doesn't it hurt my heart to remember it.  Most especially, it rends my heart to remember that breathing, that last, and futile, effort that still could only give him 25% of the oxygen his body needed. 

I'm glad his body did not go cold.  I'm glad the oddities of his metabolism kept him nice and warm.  Because the coldness of his limbs would have also been distressing.  But nothing could stop the blue colour that slowly crept up from his extremities.

Profane.  Yes.  That is the only word that I can use for watching the colour of life drain slowly from your child's body and the blue/gray colour of death slowly, slowly creep up.  It is profane.  An obscenity.  A violation.  His spirit was still there, clinging to life.  But death was coming so slowly.  Creeping up and in, cell by cell by cell.  The memory of watching this is a sort of agony.  Being so helpless to stop something so wrong and ugly from happening to your child's body.  And knowing that one reason it was happening so slowly was because that little body could not stop fighting such a hopeless battle.  That little body kept fighting, as it lost cell, by cell, by cell.

The pain of that day has loosened, just a little... but it is very hard to think about that day.  I imagine I will deal with that day in little bits over many, many months and years.

I said that God seemed to carry the weight of that profane part of it for me, on the day that Joel died.  None of the feelings that came to me the next day about it all were there the day Joel died.  So the memory of the day has horror in it.  But in the memory of the emotions, it is very different.

Because the part that I experienced THAT DAY with my emotions, was the part that was sacred.  That is how it seemed to me.  Utterly sacred.  Devoted to God and inviolable.

Dr. H., my favorite palliative care doctor (sorry, I shouldn't have favorites, and they are all great) asked if Steve and I were sure we didn't want him to call someone to come over and be with us.  I asked him if he believed in God.  With a note of surprise in his voice, he said "yes."  And I told him that Steve and I also believed in God, and we knew that God was there with us, and would be with us through it all.  I told him that we knew that friends and family would be a necessary support in the coming days.  But THAT day, we were ok, because God was there, and we had peace.

And I did.  There was peace.  God felt so near.  Not near.  There.  As I already wrote to you, Steve and I prayed a bit.  We sang a bit.  We talked to Joel lots and lots.  We kissed him and held whatever part of him was closest to us at the time.

There was just peace and love.  It was very, very tiring.  I had no idea that a person's body could hang on so long with one lung full, the other filling, able to only get 1/4 of the oxygen necessary.  I was tired, and after a few hours, I began to hope that Joel's spirit would let go of his body soon.  I was ready to see him at peace.  Even though I felt no horror at the time, I could see him turning blue, it was all so irreversable and I began to long for  him to just be free.

The end,  when it came, seemed almost sudden compared to the previous hours.  Steve ducked into the washroom, and I immediately saw that Joel's breathing was suddenly very erratic.  I was warned that erractic breathing could go on for awhile, but this didn't seem like it would somehow...  I called for Steve to hurry back as I held Joel in my arms.

Steve came in as Joel began to take longer pauses in between gulps of air.  And both of us told him we loved him so much.  We told him to let go and God would take him.  We told him to be free and at peace with God.  We repeated this over and over to him as the gulps came more slowly, and the light died out of his face and his eyes...

And those moments seemed sacred and holy.  I felt like God Himself was right there reaching for my son's spirit as it left his little body.  It was a holy moment...  I don't know how else to explain it.  Sacred.  A moment devoted to God.  A moment safeguarded  by Him.  Joel's soul passed out of his violated body, but his soul was inviolate, safeguarded by God's hand...

There was the profane part as his body was slowly destroyed completely.  Death is profane.  It is a violator.  There is something obscene about the destruction of life.

I have seen it with my own eyes.  And yet, I can say "Where, oh death, is your sting?"  Because one day this violator of life will be destroyed, because Jesus Christ allowed Himself to die, in order to destroy death itself.  I see more clearly now, the meaning of what Christ did.

And there was something sacred about Joel's death.  Because his body died.  But his spirit went to be with God.  So there was a holiness to that moment when Joel's connection to earth was severed, a holiness I felt as it seemed God's hands were right in the room with us to hold Joel in that moment of death.

After Joel died, I held his body for awhile.  At first he was warm, and we kissed him and stroked his cheek.  But it didn't take long, minutes really, for the coldness to start moving in.  And then moment by moment what I saw kept flickering back and forth.  One moment I looked down at his face and thought "This 'non-Joelness' is wrong" and it was almost repulsive to me.  And the next moment I looked down at his face and I felt awed and amazed at how beautiful his face was, in death, not even blue any longer,  but white, alabastar, perfect.

I think it was easier than I had thought to give up his body because of this.  Later, when I saw his body at the funeral home, it was different again.  It seemed more like a plaster mold of him, than like his real body.  Of course.  It was cool to the touch.  The funeral make-up even made it feel sort of like smooth plaster.   And of course, hard and stiff.  Again, like plaster.

My MIL took some pictures.  At the time, Steve said we didn't want them.  I think now I might want them after all.  I never thought I'd be much for "funeral day" pictures, but you see, the last two and a half months of my little boys' life he had these ugly, ugly eye bumps and I took almost no pictures of him.  And the ones I do have are not my favorites.  But the time right before his death is another story all together.  I will write about that part another time.  For now I'll say that even though Joel no longer looked much like Joel, I think I might want to those pictures, just to remember how he DIDN'T have ugly eye bumps that day, that his face was really, really beautiful.


  1. I can't even imagine. - Zac

  2. Thanks for sharing this Karen. I was surprised, myself, when it was actually easy to give up Makenzie's body once she was gone, for the same reasons you mentioned. I was eager to see her at the funeral home the next day, but it was a lot like you described, how it didn't really look like her anymore. That wasn't my Makenzie anymore and it certainly helped accepting the loss by seeing that for myself.