Funeral info & Heaven info.

Sorry, this is very late now, almost too late to really be helpful, but for those of you who are still wondering, my Dad's funeral is tomorrow at 1pm.
It will be held at the same place that Joel's was: Wheeler Funeral Chapel, 211 Regent Ave. W.

I kept meaning to put this information up, but somehow never did.  I'd like to tell you something about something, but I have no idea what to say about how I'm doing, or my Mom is doing, or whatever sort of stuff.  My Mom might not like that, so I guess I better tell you that my Mom is ok, and that she is a strong lady with a deep faith in God.  And also that any support for her will be appreciated... because obviously things are going to be tough for awhile.

I continue to be surprised by "how well" I'm handling things, and also by the various "meltdowns" I have had.  :)   You tell me what that means?

Just last week I was having some panic/anxiety attacks.  Racing, pounding heart, feeling faint, that sort of thing.  Not that those really say "how well" you are handling things.  I think situations of such stress and emotional response call the body to these sorts of reactions, and I don't feel bad about having them.  At the same time, they took me by surprise, and made me face the fact that my body is telling me "be careful because you've almost had enough." 

And then, in between all the calmness and facing things and being "reasonable"  (ha ha, had to use my favorite word, haven't used it in so long), I have had a few "take me by surprise" sort of meltdowns.  I guess that is not strange.  Yet my emotional reactions continue to surprise me.  Man, I thought I was so self aware!  Maybe not!

Caeden is good at catching me crying when I think he's not noticing.  The other day tears were silently running down my face as I prepared supper, and I guess he noticed a little sniffle or something, because he looked up from his Lego and said "Are you crying about Grandpa or about Joel?"  And I said "Caeden, I really don't know."  And he said, with a note of slight 4 year old-type exasperation "You have to choose, it can't be BOTH."  And I said "Yes, it can.  Oh yes, it can."

One of the last things I spoke to my Dad about, on his last Friday morning with us, was to tell him about a conversation with my son.   We were driving from the hospital, Steve, Caeden and I, and Caeden was asking me questions about heaven.  Of course, the questions were about details of 4 year old importance, though I can no longer remember what the specifics were. 

I confess, I have often wished that the Bible was more specific about what it is like after we die.  Oh, I know we likely wouldn't be able to understand much about it, in our present state.  But you know, the way Jesus used parables and extended metaphor-type comparisons.  Maybe some explanation of that sort.  I don't even know what I'd like, just more information in general, I guess.  Even while I know that God has promised that being with Him is going to be pretty great.  Still, it is the unknown...

But I framed an answer for Caeden, one I guess I always knew, but for some reason it just really hit me as I was saying it.  I was giving the answer to my son, but I was also giving the answer to myself.  I told Caeden that we really didn't know much about heaven, because Heaven was a surprise for us.  I told him to remember getting his birthday presents and how he never knew what was inside of them, but he was always so excited to see the wrapping paper.  He couldn't wait to unwrap them.  In fact, he obsesses over them days before he receives them.

And heaven is the same thing, I told him.  It is a gift God is giving us, but it is a surprise gift.  We know it will be good and exciting, and God's not spoiling our surprise by telling us what it is before we unwrap it.  And in my mind's eye, I saw how excited, in turn, Steve and I were to give Caeden a gift.  We could never wait to see his face when he opened it.  In fact, this joyous feeling perhaps prompts us to give a few too many presents than we should!  And I thought of God, waiting in heaven, just like a parent, to see our faces when we get our gift.

And I thought, well, I wouldn't want to spoil my surprise after all. 

I shared this story with my Dad on Friday morning, and he seemed to really like it.  And now he has opened his present...

Another "Joel Garden."

I have some blogs to write, I know, but for now, I'm taking it a bit easy...

So I'm going to put up some pictures here of something special to me.  I have make a "Garden" on Joel's grave.  But that wasn't quite close enough for me.  So I wrote quite a while back that I was also planting his name in my front flower bed.

And now it is finally starting to look like I had conceived in the beginning.  Still not perfect.  I'm not a pro gardener or anything.  But I think you can still get a sense of it from the pictures.  And they were taken a few days ago.  It actually looks even nicer now.  So maybe there will be more pictures soon.

As I said, it's not perfect.  But when I see it, it feels like my heart out there, blooming...

Don't know if you could read that, it's clearer when you see them in a row.

If you still can't see it, then here are some of the pretty flowers in the "Garden," and I'll put up better pics another time.  For now:

The Final Chapter of My Dad's Life Here.

My Dad died today around noon.  His family was with him.  His breathing had changed in the early part of the night, and continued to vary into the day.  Just before noon, he partially opened his eyes, as sometimes seems to happen in these cases, as if he knew he was about to go.  We all stood around him, and we took of the O2 mask so my Mom could kiss him and he could get better "hugs."  We kept telling him how we loved him and that it was ok to go home.

And just as my son did, almost three months ago, my Dad's breathing slowed, and became sporadic.  After a few minutes, his breathing died away completely, and he was gone.

I was at the hospital last night, by about 9pm.  He still was responsive for a little bit at that time, but when he fell asleep, he slept deeply.  He did not cough or stir during the night.  He was, finally, very peaceful in the end.  He even told my Mom that evening that he felt really at peace. 

He discomfort seemed to end sometime that evening.  He fell into a deep sleep. He was not responsive, nor did he move, until the last few minutes of his life when his eyes partly opened.  When we took off his O2 mask, an expression flitted across his face, he seemed aware it was gone, and I think he was glad.  He knew he was not going to need it any longer.  I think he was aware of the kisses and hugs...

I will, of course, post details about the funeral, and etc., at a later time.

Thanks for all the prayers.  I am so thankful that my Dad could good so peaceful and gently at the end...

Update on my Dad

Ok, there is no good way to say this.  So here it goes.  My Dad has not been doing well.  Chest X-rays revealed that the reason he is coughing and struggling to breathe is that one of two things (or both of them) is happening.  Either my Dad has pneumonia, or the leukemia has moved into his lungs...  Remember the first bout with leukemia, it was not only in his blood, but had started to localize on a spot on his neck?  Well, the doctors believe that this might be what is happening in his lungs...

The antibiotics targeted at pneumonia did not seem to help, so if it is pneumonia, it is likely a very resistant strain.  They have upped my Dad's chemo meds DRASTICALLY because on the low dose chemo his WBC had jumped from about 16 to something like 27 overnight.  They have upped the chemo meds drastically, not in an attempt to "cure" my Dad, but because a WBC of 27 means a lot of discomfort for my Dad.  Yes, it is chemo, but it is really for comfort's sake.  That is one way that leukemia is a bit different from other cancers.  It's chemo, but it is more in a palliative role, just to try and keep him comfy.

The doctors who spoke to my Mom this morning told her to phone family and let them know.  Of course, they can't really predict much, but they estimated that my Dad likely had about 3 or so days of life left, the way things were going...

It's been a tough week.  I know I keep saying this, but that is because I keep having to see it: it is very hard to watch someone you love feel so miserable.  My Dad tries so hard to be brave, but I can clearly see that even with all the meds, he still feels about the way you and I do when we lie aching in bed with a really bad flu, unable to get really comfortable enough to sleep properly.  You know, that really bad flu where you start to wonder "Do I need to make any last minute changes to my will?"  Then add in that he was on 10 l. of O2 and he was still gasping and working so hard to breathe...

My Mom said that he was breathing a bit easier by evening.  Don't know if it's just because evenings are usually better for him, or if the chemo meds were able to clear out his lungs a bit.  Don't know.  I don't even care, really.  I just want my Dad to feel comfortable...

Tonight I went to see Joel's grave.  Maybe this seems oddly morbid, but really, when you are told your Dad has days to live, maybe it is appropriately morbid.  I saw Joel's grave, and it still looks lovely.  Being as it is out in nature, some flowers continue to be chewed on.  For sure, it's not as nice as the ones growing in my flower beds here.  But there were still lots of pretty flowers, and some of them have been growing so nicely.

And right beside it, the place my Dad will be.  I just wanted to walk around and think, and also to not think.  Think about how pretty and peaceful and nice it was.  Think about how the graves would be side by side.  Think about how property values on my Dad's grave would go up, because he was next to the nicest place on the block!

And not think about hospitals, or medications.  How my son would not really be able to remember his Grandpa.  Or how my Mom would cope.  Or any of the other implications.

But I will ask you to keep praying.  Please pray for my Dad's comfort.  Please pray for that especially.  And then please pray for my Mom, and for wisdom in how to support her.  I've known her all my life, but I still feel a bit at a loss at how to help her through this...  So please pray.

Thanks you.  Very much.

Tough Day at the Office and I Don't Even Get Paid For This.

How's that for a self-pity sort of title?  So, on to the more frivolous.

Most of our gifts in this house are wrapped in Christmas wrapping paper.  Yup.  Because I have to save the occasional still "good" gift bag in case of a gift for someone outside of family.  They get a gift bag, because they might not understand why Snowflakes are on their birthday gift in July.  And Christmas wrapping paper seems to be the only kind of paper I can get the brain power up to actually purchase...  It's funny how when I buy a gift, I pretty much NEVER think "Oh, yeah, and some wrapping paper would be good."  Instead I think "Chaching, I managed to BUY this lovely gift BEFORE the event in question!  How exciting!"

Truthfully, I have never been super good with wrapping paper sort of details, but the last years have not helped me out any.

So, today, the day before Father's Day I realized that I had purchased gifts (Yaaaaay!) but have only Christmas paper.  Oh well.  Frosty it is.  I'm proud of myself, because I'm thinking of actually wrapping the gifts 16 hours ahead of when I'm supposed to give them.  Bonus.

I'm writing on this happier, sillier note, because it's been a tough day for me so far.  Oh, no real reason, other than I lost my son not even 3 months ago, after 2 years of seeing him deteriorate, and now my Dad is feeling crummy in hospital and for Father's Day, even.  Did you detect a note of self-pity in there?  Well, I did.

And I am very easy to upset these days.  Taking even myself by surprise (or maybe ONLY myself) with my "emotional instability."  I'm irritable, hot-headed, easily frustrated and impatient.  I have that "only one nerve left" sort of feeling, and seriously, there IS this eye twitch, but it is internal.  I can feel it though.  Volatile, I believe, would be the word for it. 

By one o'clock to day, I returned home from the hospital and then I lay down in bed.  I didn't even really sleep.  Sometimes I just do this thing.   I lie there and just relax as my brain whirls with so many thoughts, ideas, etc.  Then slowly, slowly it all unwinds.  Finally I get that "Hmm, where was I for a few seconds?" feeling and I feel much better.  Today I lay there for an hour to get to that point.  I never actually slept.  But once I got that feeling I could get up again to "face" things.

So now, here is what you are really waiting for: an update on my father.  Today his WBC were at 27.  (From 87 just a couple of days ago.  Normal is between 5-12, I believe).  My Dad was feeling pretty sick yesterday, and tired.  He slept a lot. 

Let me back track a bit.  They started him on hydroxyuria to supposedly start taking down the WBC.  But the dose they started with didn't work, and the counts kept going up.  They added in the second med (but I won't be able to spell it) and his counts only dropped from 87 to 85.  When you need to get below 30, this is not really progress.  The second drug they used was one of the two my Dad had the last two times, just at a lower dose.  If I understood the doctor's explanation, the leukemia cells now might be sort of resistant to this drug, which is why a lower dose did almost nothing.

So they really, really upped his hydroxyuria to try to get things under control.  Thing is, they had to up the dose so much, that it was basically back almost to what would be a "high dose" and we know that his intestines can't handle that level of toxicity.  So they were watching him closely for signs of inflammation.  They could see signs that his intestines were getting stressed, but he was still able to absorb fluids and so ok.  But, of course, this is not a good treatment option for long term.

Which is why, once his WBC came down below 30, they stopped the hydroxyuria completely.  Now that the leukemia is more "in control," they can try a few other drugs that my Dad has not previously used.  These are oral meds, so he will not need to have needles.  One good thing.  Not that needles are a big deal to my Dad, particularly with all the other, worse stuff, but still.  They hope that the leukemia will not be as resistant to these new drugs.  So they hope that the low dose treatment of these drugs will be able to hold the leukemia below a WBC of 30, or even bring down the count slowly.

They needed to take the risk of the high dose of hydroxyuria, because my Dad was already on it, and they needed to get things under control quickly.  Now they know that it works to bring down his WBC.  So they have that course in an emergency, in the meantime it has bought them time to work with other treatments that are less toxic to my father's battered body.

Leukemia is a nasty disease, in case you didn't know.  (Well, I'm sure that extends to almost all cancers.)  It makes you feel sick.  You get sores in your mouth.  You have fevers and aches and pains.  You are very, very tired.  You can get rashes.  You lose your appetite.

And it is nasty because to treat it, you gotta take poison.  And the chemo can make you nauseous, give you horribly loose bowels, cause sores in your mouth, give you fevers, and make you very, very tired.  See much difference between the two lists?  I don't. 



We know when it has been a bad day for my Dad.  We can tell when he is just feeling so awful.  Because on those days he starts talking about funerals... well, his own, anyway.

Yesterday he was talking about them.  Today he didn't.  Since they stopped the hydroxyurea, my Dad was feeling better.

Do you know how many sick people there are in this city?  In this country?  In the world?  Man, that is a heck of a lot of sick people.  And it makes me feel so sad to think of other people, like my Dad, feeling so much pain and discomfort and discouragement that they are mentioning funerals.  And makes me even sadder to think how many of them, unlike my Dad, are afraid to die.   So they are thinking about death, even as they are fearing it...

All right people, what am I saying?  Don't forget Jesus' ministry to the sick, or how important it was to Him that we visit them.  There are lots of good places to volunteer, but don't forget that hospitals are some of them.  Of course, people with illnesses that affect the immune system might be off limits for visitors.  But there are plenty of others.  I'm just saying...

Reality.

Well, reality sets in.  My Dad is, of course, sick.  It is painful to see that.  I hoped that he'd be feeling better, with the low dose chemo, than he currently is.

Of course, he hasn't started the full dose of chemo until today. 

Still, it was disappointing when he felt sick on Sunday, not due to side effects of hydroxyurea, but with a "leukemia fever."  When he went in to get his blood checked yesterday, his WBC numbers were UP, not down.

So his oncologist immediately doubled his dose of hydroxyurea.  And today my Dad starts on the real deal chemo, just at a low dose.  He'll be giving himself a shot twice a day for ten days, as well as continuing on the hydrox.  Then he is off the shots for 20 days, then back on for 10, etc.

I'm really hoping that now that the shots have started, he'll be able to feel better.  I think my Dad was very discouraged to be feeling so poorly.  He had hoped to go to church.  He had hoped to feel better for his anniversary yesterday, because the last two anniversaries were spent sick in hospital.  He was not in hospital, and he did manage to eat some of the food, but it is difficult for him.  His appetite is a bit low, plus he is supposed to drink a minimum of 2 l. of water a day, and this does hamper your appetite as well.  And of course, it was very discouraging to see that his WBC count was up...  I'm really hoping that he'll be feeling enough better for Father's Day that we can take him out for that mini-golf he's been looking forward to.

My parents looked up the stats yesterday, for this type of leukemia treated with a low dose of chemo.  The average length of time it has given people is 8 months.  Numbers are such a double edged sword.  In a sense, there is hope.  8 months.  That's better than 4.  It's surely better than 2.  And of course, this is an average.

But then it kinda hits you when your mom and dad have their anniversary meal at your house, and your dad is feeling a bit discouraged, and he's low on energy, and his appetite is a bit low and you think, "this is probably the last anniversary they will have together."  It's hard not to feel sad, and even a bit disappointed yourself. 

It is HARD to watch someone you love be SICK AND THEN DIE.

And it is hard, very hard, to do it off and on for three years, not with one, but with TWO people you love very much.

Sometimes the burdens feel too heavy to bear.  That is how I felt this morning.  Like there were too many burdens and not enough hands or a big enough backpack.  But I had a talk with God.  And He gave me His promise "My yoke is easy, and my burden is light."  And so I gave my Dad up to Him, and some of the other stuff too.  I'll just carry the stuff He has for me TODAY, and I'll let Him carry all the stuff from tomorrow onward.

I'm still pretty sad, but I feel lighter.  It is enough for today, to deal with the evil it contains.  It's enough, I don't need any more!  And the Lord is here.  I can "do" today.  Now I'm going out to water some flowers...

A thousand sleepless nights.

So far, the third month after Joel's death has been the hardest...   I guess that shouldn't be a surprise.  Normally you'd being to miss someone a lot more before that feeling would die away.  So perhaps next month, I will miss him even more than I do now.

Joel's death is huge sort of "milestone" in this journey, of course.  Not a milestone I was happy to hit...  But not the start of the grief journey.  By a long shot.  And so, the grief did not start three months ago.  It seems a more continuous journey to me.  Which is why, as I have already said, this doesn't exactly seem as hard as I thought it would be.  Not to take away from how hard it really is.  But because it was already so hard.  And the last month of Joel's life was very, very hard.  I think "the burn" of that month is partly why after he died, I was surprised by how it wasn't harder.

There were still some good memories in that last month...  I can't say it was all bad.  It wasn't how I wanted the last month of Joel's life to be.  But we can't always have what we want.  And I know that there was a trade off.  Because I would have reacted differently to that emergency trip where Joel's lung was full, if the previous month had been perfect.  I think I would have wanted him intubated...  And it would have been much harder to have to let him go...

How is that.  The last month of life was poor enough that it made it easier to let him go...

But still, I miss him in a way that is hard to describe to people who haven't lost a child.  And I find that I grieve, at times, not only the death of my child, but the whole entirety of the last two and a half years.

Here are the words from a song, by Laura Story.  The song is called "Blessings" and I'm sure many of you have heard the song.  A friend put it on her facebook, but I didn't bother listening to it, then one day I heard it, words and all, on the radio.  It's worth listening to, to get the full effect.  But the words say the most.  So I'm putting them up here, well, excerpts of the word, anyway.

We pray for wisdom
Your voice to hear
We cry in anger when we can not feel You near
We doubt Your goodness, We doubt Your love
As if every promise from Your word is not enough.

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You're near?
What if the trials of this life are Your mercies in disguise?

What if my greatest disappointments, or the aching of this life,
is the revealing of a greater thirst this world can't satisfy?

I know a lot of people who carry hurts, hurts from abusive parents, from difficult marriages, all kinds of hurts.  And they pray and surrender it all to God.  But so often that one surrender is not the healing.  We'd sure like it if we could just get the healing, with out taking every little bit of the hurt to God and naming it before Him.   But truly, sometimes doesn't the healing come THROUGH the tears?  It is each tear we cry before God that IS the healing.

And I know that this is so with Joel too.  I must cry every tear, because each tear can bring me to His feet, and into His arms.  God can sew my heart to His, tear by tear by tear.

You know, sometimes a thousand sleepless nights are what it takes to know He's near.  And Joel's life was just short of a thousand nights long.  About 960 nights, give or take a few. 

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.

A bit more optimistic

I feel a bit better about my Dad today.  Apparently the medical staff were quite optimistic about the low dose chemo.  No, it's NOT as effective as high dose chemo.  So most of the time they want people to take high dose chemo.  As long as the chemo itself isn't going to kill them.

But the hydroxiarea had started to take my Dad's WBC down, and his platelets today were ok, and the hospital people seemed to think that he might get a remission with the low dose.  They told him it would take about four months for them to get a good idea of how it was all working.  FOUR MONTHS!  That was actually pretty heartening, to hear that they thought he had four months before they'd get an idea how the battle was going.

They seem to think it very possible that the low dose chemo might not just be measured in weeks or months, but that it might be measured in months or maybe even years.  It sounds like the low dose chemo doesn't really have a "cut off" date, it sounds like they can give it indefinitely...

It was all a relief.  It's hard not to feel so awful about it all, given how bad the last two bouts with leukemia and chemo were.  Yes.  They were not fun...  I'm so glad my Dad can likely be at home, and comfortable, and even doing a few things, maybe for quite awhile yet.

Of course, without a remission, indefinitely would eventually come to an end.  And there are no guarantees.  At any time my father could end up in hospital with an infection or other health problem.  But it sounds like we might have something I really feel like I need right now: TIME.  Yaaaaaay for time!  Here's to more of it.

Mist

Today my new health card came in the mail.  The one that had only three people on it, instead of four.  It was hard to see it, like a knee in the guts.  To see that officially we are a family of three, and that from now on, government documents, no matter what I personally feel about it, will only list three names for our family.

And before I forget, thanks everyone for the support and encouragement in comments, email, and phone calls.  Christina, I'm so sorry, somehow I hit delete instead of approve on your comment.  I really didn't mean to, it was a "I'm a bit nutso and distracted" sort of brain blip.  But thanks for your comment.

My dad went in to the hospital today to let them know he has opted for low dose chemo.  He had a transfusion and was sent home with Hydroxiarea tablets.  Yup, most likely I butchered the spelling there, but if you have ever had cancer, you likely know what I meant. 

These are a step in the chemo process.  It starts to kill the bad cells, but not too much at once.  Because your body has to get rid of the bad cells, through your kidneys (yup, you end up peeing them out) which means that hydration is important, and that you don't want to kill too many at once or your body can't handle it.

He gets blood work tomorrow to see if he'll need another transfusion on Saturday, and also it might show that the Hydroxiarhea has started to work.  Hopefully.

On Monday he will move from the pills to injectable chemo meds.  The good news is that this low dose treatment does NOT have to go slowly through an IV, and he can be trained to give himself the shots, one morning and one night-time.  So he can be AT HOME.  As long as his health is stable.  He can be at home, and he just goes in twice a week for blood work.

So now we know the plan.  I can tell you the plan.  But we don't know what the results will be.  I wish I could tell you, because I'd sure like to know myself.  But no one can say when chemo will work or won't, or how well it will work, or how any one persons body will handle chemo, etc, etc.  Oh, yes, there are parameters.  But they are pretty wide.

So the low dose chemo MIGHT give my dad a remission.  Not likely, to be honest, but it is possible.  Or the low dose chemo might do very little to slow down the leukemia.  Sometimes even high dose chemo does not result in a remission.  My dad was fortunate both previous times.  He went into remission with just one course.  Some people have all three courses and don't get a remission.  So it is really hard to say what this low dose chemo can do for him.  His oncologist warned him that while he can try to do this all from home, there is no guarantee to when/if he has to be admitted to hospital...

I really can't look to far ahead.  It's just all foggy up there and I can't find my way.  Only God knows the path through that fog.  And I just have to hold His hand and keep stepping after Him.

I'm hoping that the low dose chemo will be a balance between side effects and leukemia that will allow my dad to enjoy a beautiful summer of mini golf (yes, my dad likes mini-golf) and picnics and BBQs, helping my mom with her ceaseless garden improvements, and reading stories to his grand kids and drinking lots of tea with his children.  I'm hoping that he manages to avoid pneumonia or infections, or platelets too low to maintain with transfusions, etc, etc, etc.  That is all I got right now.

So.  Here a stone and step.  There a stone and step again.  Deeper and deeper into the fog, stone by stone...

Here is my Dad and Joel, at Christmas just over a year ago.  My Dad is sporting a new growth of hair after his first bout of leukemia/chemo.  Joel is sporting a new Christmas outfit, this was a good time with lots of happiness for him.

And this is my Dad, sporting a new growth of hair, and suspenders, after his second bout of leukemia/chemo and a colostomy (hence the suspenders.  I won't go too much into details, but colostomies and suspenders go hand in hand.  What do women do?).  And here is Joel, sporting a lovely bandage from his very last hospital admission, where he developed a lovely pressure sore.  (hence the bandage, if you didn't already connect that).  This is my favorite picture of them, both in their plaid shirts.  This was our last really happy, good period with Joel.  You can't see it in this picture, but there were still lots of laughs and smiles.

Phone Call

I got a surprise phone call this afternoon.  Not the good kind of surprise.

The kind of surprise where your dad says "How are you today?" with a strange sort of inflection that makes you wonder, "Does my dad think today is a bad day for me for some reason?"  So you say that you are doing ok, and wonder why, exactly, your dad thinks it might be a bad day for you.  Does he know you are coming down with a cold?  Is this some sort of "Joel-versary" that you have forgotten about?

Then your dad goes on to say the words "I'm calling you from the hospital.  I just had blood work done...."

And that is when your heart slowly sinks as you realize that it is going to be THAT phone call.  That phone call that you have been expecting and ignoring the expectation of, for awhile.  But now, again, the day has come.  Again, the day has come, and there is no more time for you.

And you listen quietly as your dad tells you that his leukemia is back, for the third time.

It would be so easy to fall into self-pity.  It would be so easy to say "Why can't I get a BREAK??   Why can't I get more than a few months in between all the bad news?"  And more significantly "What is God DOING to me?"

Or to feel, more subtly, that no one has it as bad as you do.  You win the bad year award, hands down.  What, exactly, that gets you, I don't know.  Maybe at least a plaque?

The truth is, though, that this last year was clearly a gift from God.  It was a miracle that my dad recovered last year, from his almost death due to a combination of leukemia and chemotherapy complications.  It was amazing that he recovered, that he recovered so well, and that he remained around for Joel's decline and death and funeral.  That was what I asked God for last year, when my dad was so sick.  I said "Please don't make me bury my son with out my dad there to support me."

Of course, maybe I should have asked for a bit more!  I got an (almost) extra year with my dad in good health, perhaps I should have asked for at least two.  I say that tongue in cheek.  I really feel a lot of gratitude for the unexpected gift I got in having another year.

Hearing that my dad's leukemia had return, in fact, knocked the legs out from me a bit.  I know I am having a hard time grasping how serious this is.  I just don't want to believe for a second that by this time next year I will be planting flowers at two graves, side by side.  Or maybe even that in just a few months I will be attending another funeral, right beside where my son's body lies.  It doesn't seem real.  How can I believe something so heart rending?

There are three choices my dad can make.  He can refuse treatment.  This means his life will be measured in weeks.  This leukemia moves that fast. 

He can go for high dose chemo.  The last time he did high dose chemo he came away with heart damage and almost died, it took so long for his body to recover enough to make platelets and neutrophils.  His doctor said he has about a 35% chance of surviving the chemo.  If he doesn't survive it, it could mean he goes into hospital tomorrow, and never comes back out...  And then, who knows if or how long it will work, as this is the second time, after treatment, it has returned.

And he can go for low dose chemo.  This chemo would not make him as sick.  He could be an out patient and be at home most of the time.  There is a very small chance he could get a remission from this low dose chemo treatment.  It's a pretty small chance, as even with two high dose treatments, the leukemia still keeps coming back... I don't think anyone feels to hopeful about that.  But the low dose chemo would keep give him more time, and more importantly, it would give him more of the better time, before eventually, the leukemia really takes hold of him.

Frankly, none of the options look that great, though I think he's going to opt for the low dose chemo.  I don't want my dad to die, and if he has to, then I'm not that crazy about the leukemia part.  There really are not that many "nice" ways to die...  At home, in your sleep, at the ripe old age of 95, is generally preferred.  But lots of people don't get that.

I really wish my dad could have had that.  My memories of how sick he really was last time have dimmed very little.  My memories of watching my son slowly die over a few days have not dimmed at all, but they are hard to think of.  And thinking of my father slowly dying this way is not pleasant.  So please pray for us...

I want my son.  I can not have him right now.  I want my dad.  It seems that I can not have him much longer either.  I want my God.  I am glad, that Him I can have, and no one can take that away from me.

More Pictures of Joel's Garden.

As I wrote in an earlier post, there was a really bad frost a few nights after I planted Joel's grave.  It killed or damaged about 75% of the plants.  Some of them are still alive, I think, but just a few little green shoots.  So it might take them awhile to recover.

So I went out a couple days ago and replanted it.  I left some of the old "hopefuls" in, in case they decided they could make it after all.  And I took a bunch of pictures.  You might notice a few very sad and sick looking little plants amongst the newbies.  It looks different now, but still nice, I think.

There is a bunny living very close to Joel's grave.  It's hard to know how to feel about him.  I know that if Joel had been well, he would have loved Mr. Bunny.  Mr. Bunny is very cute, and in terms of nature, well, he's a lot nicer than bugs, or rats or something.  The thing I'm not crazy about with him, is that he, apparently, LOVES to eat rose bushes.  He has already eaten down the lovely rose I planted on Joel's grave.  Seriously, about half of it is gone. 

Seeing the grave again with him around did clear up some questions.  About ten days ago when I went out, I was surprised.  I was SURE I had planted the rose smack in the middle of the grave.  Now I could clearly see that it was off to one side.  How had I done something so sloppy when I was trying to be so careful?  But upon returning, the rose bush was once more centred.  And mystified I examined it closer to realize that Mr. Bunny had been by to "even out" his previous work.  he had eaten one side of Joel's rose and that had made it look like it was planted off centre.  He kindly came back to fix that by eating the other side.

So I might have to bring some animal repellent out with me next time.  I wasn't too sad about the frozen flowers.   As I said, frost happens.  Not nice.  But oh well.  And easy enough to fix.  But I REALLY LOVE the rose bush, and I'm not sure how much more chomping it can take.  Even if it survives, the buds are being eaten as well as the leaves.  Bad, bad Mr. Bunny!  I hope that the animal repellent will work enough to let it all grow and be beautiful.

Joel's Garden isn't the only one out there, though.  I would have to say, modestly, that it is the biggest with the most plants.  But there are other graves there with flowers growing.  Some with a rose bush.  Some with just a few pansies growing.  Or some with the whole grave with flowers.  I gotta say, despite Mr. Bunny, I love the cemetary we chose.  It is so nice.  In fact, being able to plant flowers on top was one of the deciding factors for us in choosing this place for his body.

I would NEVER have guessed it, five years ago, that I would be sitting here, five years from then, typing a blog describing my son's grave...  Life's path has many twists and turns. 

Another child from the support group seems to be about to die.  It's hard to say how this feels for me... I did meet this little boy, just over two years ago at the conference.  Hearing about the trouble with breathing he's having really brought me back to Joel's last days, in particular his last day.  The time is approaching for me to write about that...  But back to this.  Please pray for Nickolaus, and most especially for his family. 

This is the rose.  Just one flower, thanks to Mr. Bunny, but it looks so lovely.

"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...