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!





Tuesday, November 22, 2011

The Gospel as Explained to Caeden

First of all, I didn't take any pictures of our weekend away.  I didn't even think of it.  Sorry.  It was a good weekend though.  Caeden LOVED it, and I was glad that we were able to shower some love and attention on him.

Now, I have decided to write about something that happened last week and filled my heart up with joy.  It's not really connected in any way with Joel.  Still, I thought I'd write about it and share it.

It's going to be a bit of a stretch, maybe, for some of you unfamiliar with Christianity, or if you are an atheist, or etc.  I'd never make anyone read something against their will.  So I leave it up to you.  I'm not in your den right now, I'll never know if you read it or not.  It's up to you.  This post is about God.  And Jesus.  And one of the happiest things that I have ever been a part of, so I'm sharing it.  This blog is about sadness and grief most of the time.  Now this post is just plain about joy.

I have been praying for Caeden for awhile now.  Steve and I take him to Sunday School, we read to him from his children's Bible, we tell him about God.  I do this without any hesitation.  How could I hesitate?  I am convinced of the truth of the Bible, and I believe in telling my son the truth. 

Caeden has not been that interested though, to be honest.  He hasn't really wanted to memorize verses for Sunday School, and I don't make him.  He has verbalized that he wasn't interested in videos "from the Bible" and thought other kids videos were better.  He told me that he wasn't choosing God's side and he wasn't choosing the Devil's side.   (yes, he has also been taught about the reality of spiritual evil, but only AFTER he'd been taught about a good and loving God who was omnipotent.)

And I speak the truth to my child.  But I respect that he is an autonomous being that must make his own choices.  I have always tried NOT to force him about spiritual things.  God has never forced me, He offers us a choice.  So too must I parent my child, letting him make the final decisions about what spiritual choices he makes.  Though of course I make decisions as a parent on what cartoons are OK, etc, etc.

So, on with the story.  I have been praying for Caeden for awhile now.  And I talk with him about God and answer his questions, etc.

Last week he asked me a very, very good question.  He said (OK, this is not an exact quote, my memory is not that good, but it's a close paraphrase.  And same is true for all quotes following.) "If God made Satan, then how come God let him be bad and become His enemy?"  So I answered as best as I could.  I admitted that I had NO idea. 

I said "I don't know the answer to that, Caeden.  I don't know the answer because the Bible really isn't the story about God and Satan.  The Bible is the story of God and PEOPLE.  I don't know the answer for that about Satan, but I know a much more important answer that has to do with why God lets people choose if they will love and serve Him.  The Bible teaches that God wants us to love Him, and it can't be love if we don't choose.  God wants us to choose Him, that makes our love real."

From there I talked about how it says in the Bible that "All we like sheep have gone astray, we have turned each one to his own way." (Isaiah 53:6)  And we talked about what that meant.  I explained how in each of our hearts we wanted to go our own way.  We didn't want God to tell us how to act or the right way to go.  We said "I want to be number 1.  I want to make all the decisions.  I don't want to listen or obey God."  And just like silly sheep, our own way led us into trouble.  We got lost, we went the wrong way, we ran into wolves, we could not find our way back home to God.

Then I talked to Caeden about how Jesus said "I am the door of the sheep... If anyone enters by Me, he will be saved...I am the good shepherd.  The good shepherd gives His life for the sheep."  I explained what that meant, how Jesus came to earth to die in our place so that we could have new life and a new heart.  I even explained some things about sheep and sheepfolds.  I told him that those olden day sheepfolds had no door, only a frame.  I explained how the shepherd would bring the sheep in, and then sleep in the doorway, making HIMSELF the door, keeping the sheep safe and sound by protecting them with his own life.

Then I let it drop, as his attention seemed to flag.  Later that day while we were playing a game, he wanted to be "#1" and he wanted to be in charge and make the decisions.  I pointed out to him how his heart was just like everyone else's, that he also wanted to be "the boss" all the time.  How often he didn't want to listen to what I said, and how often when he "went astray" he got into trouble.  I could see him mulling this over.

The next morning I was reading the passage that I had shared verses from the day before.  It's John chapter 10, and it is a beautiful passage if anyone is interested in reading it.  (L.P. or C.P., if you are still reading this, take it as a recommendation  ;)  )  After quoting parts to Caeden, I really wanted to re-read it, and start to memorize it.  He found me reading and asked me to read it out loud, so I did.

Then he asked me "How did you enter the Door, Mommy?  And how do I enter the Door?"  So I asked him "Do you mean that you want Jesus to be your shepherd, and be the door for you to be saved?"  And he said "yes."

So I explained to him that I had prayed something like this:  God, I am sorry for my heart that doesn't want to listen to You, that wants to do wrong things and go astray.  I want to go in the Door.  Thank you that Jesus died for me so I can be forgiven.  I want Jesus to be my Savior."

He told me "That's too long for me, Mommy, I can't remember that all.  So I took him through step by step and he repeated a prayer after me.

And then I just bawled.  Tears of joy just streamed down my face.  It was the most beautiful moment, and I am so glad that I had the privilege of sharing Jesus Christ with my son.

I know that he has lots to learn.  I know that there are parts he did not fully understand.  But I know he got the main parts, that his heart had been rebellious towards God, and that through Jesus he could come safely back into the sheepfold. 

And I know that in heaven there was a big party and Joel and my father were part of it, rejoicing.  I said this wasn't really to do with Joel, but look, here he is showing up at the end of the story.  Just like one day he'll show up at the end of mine.  And at the end of Caeden's too.  But best of all will be meeting our Shepherd in person, the one who loves us so much that He gives His own life for us.

Friday, November 18, 2011

Weekend Plans & Pictures.

We are going away this weekend.  Well, not far away.

If you have been reading this blog from way back, you know that just before Joel died, he was granted a wish from the Children's Wish Foundation.  It is so sad for me, that he died before he could have any benefit from that, though I know in heaven he's got it way better.

Just a day or so after he died, the CWF lady called me to tell me they had a gift basket put together for Joel that she was planning to drop off (obviously there had not been time to notify them of his death).  When she heard that Joel had died, she felt so badly.  She asked if I still wanted his gift basket.  I said yes.  I figured the gifts were pretty specific for him and they might not have another child who would use/want them.  And I figured that I was going to be sad anyway, might as well see what was in the basket, as just always wonder.

The gift basket was actually a gift hamper.  It was filled with the most lovely towels and fluffy face clothes for use with the jacuzzi tub we had hoped for.  There was children's music and a CD player with a remote for changing songs while "tubbing."  There was baby wash and lotion.  And there was also a gift certificate for two nights in a jacuzzi room at a hotel, for us to enjoy while we waited for the real wish to be fulfilled.  It is hard to explain how I felt about that basket.  It was very, very sad.  But there was something nice about it too.  And now when I look at those fluffy towels, I think of Joel... and that makes me happy.

The certificates were to expire in December, and I had promised Steve we'd use them, so the time had clearly come.  Tonight we leave for two nights at a local hotel.  With a room with a jacuzzi tub. 

I can't begin to explain all the emotions with this.  So I'm just not going to.  I will say that Steve and I are leaving Caeden with a sitter tonight (or as we like to call it, a "sleep over" with his friend).  So we have the first night to ourselves.  If we need to, we can cry as we wish as much as we wish and we can think about Joel.  As I call it, "intentional grieving."  Good to do.  Specially for Steve,  because with his work so crazy and hectic, he gets little time for actual grieving.

And then tomorrow morning we will pick up Caeden and have a family day and night together.  Caeden does NOT enjoy hot tubs, but he does like pools, and so we will spend some time in the pool.  Maybe catch a matinee somewhere.  Just do fun family stuff.

Grief sure is funny business.  I find the pain level has remained the same throughout the last 3 or 4 months.  But I feel more energetic.  I am able to do more.  I need a bit less sleep.  I am still often wracked by grief, and I know this will be for the rest of my life.  On Monday, I got Caeden's nursery school pictures.  They were beautiful.  Really, I loved them.  But as I dropped him off and left, suddenly the grief seized me. 

Because with the joy of Caeden's pictures is the grief that I never got and never will get any pictures like that of Joel.  He could never have a smile like that for a picture.  The smiles I captured were the result of much, much patience, many "garbaged" digital shots... and were very rare.  I love those pictures.  I do.  But I never will get ones like the one of Caeden.  There will be no school photos at all.

And I realized once again that all through life there will be new things to grieve.  I'll not be able to expect all of them.  (the school photos were a surprise to me, I had no idea I'd feel that way.)  I realize more and more that it really is a good analogy, that losing someone that close to you is like an amputation.  You learn to live with the loss, to function, even, very much like before.  But that limb is gone.  You will never forget.

And I will always love my child.  Always.  I just pray, may God use this sorrow.  It is my offering to God, to use in whatever way He can.

Wednesday, November 9, 2011

Caeden and I.

I have not posted much here in the last few months.  It's not so much that I don't have something to say, as that I'm not that sure it is interesting enough for people to read it. 

It was inevitable, and therefore, not unexpected to me, that around the time of Joel's final illness and death, my blog had a huge surge of activity.  My "readership" grew enormously.  And then, in the months after Joel's death it slowly died down once again. 

And I expected that for many people, that would sort of be "the story" they were reading.  Joel's life, his impending death, death, and immediately after.  That makes sense to me, that others would feel most interested in that.  Of course, to keep "readership" up, posting more frequently helps, but even before I started to "slack off" in the past few months, readership was down.

I am OK with that.  It's one of the reasons that I have been less frequent about posting.  I just post when I feel like it, and when I think I have something interesting to say, when I have the time and the energy.   "When the stars align" as the saying goes.  And all those things do not happen simultaneously very often.  So it seems.

Still, I will keep posting a bit longer, while I still have something to say on here.  Eventually, I think, this blog will end.  I'm thinking about starting a new blog, though.  Because, like so many other vain people, I enjoy hearing myself think!  Ha ha ha!  That blog would be different.  It would just be about what I am thinking about, which might often be Joel, but also might be other things.  But that would be later on.

Today, I think I will write about Caeden.  I know people wonder about him.  Hmmm.  Even I wonder about him!

He is mostly happy.  He's a very up and down kind of kid.  0 to 60 in under a minute.  Quicksilver.  So one minute he is miserably complaining like a peach colour Oscar the Grouch that he DIDN'T want bacon in his scrambled eggs, he wanted BACON apart from his eggs (we only had some bacon bits, not strips, but it was REAL BACON, in my defense!) and then the next minute he is happily gobbling them down, humming all the while with a totally contented face.  Yes, I realize this is a characteristic of all children, but in my child it seems hugely magnified.  My writing can not possibly capture the real life drama of every moment in my house.

The thing about Caeden is that I have sure had my struggles with mothering my son in the last few months.  He is human, and less than perfect.  In fact, as many children are, he is often bossy, grouchy, greedy, explosive, and persistent in his nagging.  He doesn't have many requests, but boy, does he ever have a list of demands.

Just being honest.  At the risk of being criticised, because yes, I know, how grateful should I be for having such a happy, healthy child, when some people don't have even ONE?  I am grateful.  I love him to pieces.  And he has many, many good points.  But the truth is the truth.  Sometimes he is difficult.  Very difficult.  Sometimes I am not a very good, patient, understanding, etc., mother.

And there are other things that get into the mix.  Because even though you might think that having Joel would make me so grateful for Caeden, would make me aspire to do all I can to experience and cherish his preschool years, in fact,... well...in the past few months it has not.  In fact, in some ways Joel's death has just made it very hard to be a mother to Caeden.  I have, for example, struggled with resenting him...

Well, not exactly him.  But it would make me so irate when he would complain about things.  Because, of course, he has no idea how fortunate he is.  (and yes, this is always, silently, compared to Joel.  Compared to the other sick kids out there...)  His seeming ingratitude drove me nuts, I wanted him to be so grateful for his good health, his abilities, the comforts of his life.

And then there is the part of me that resented his intrusion on my grief process.  Yes.  Being honest.  At times when I was tired or sad, I resented his needs.  Or maybe even more, his wants.  He wants me to play, he wants me to do everything for him and with him.  And I want a few hours to curl into a ball and be silent, be sad, think, rest, in short, to grieve.  A huge conflict between my wants and needs and his.  But I am his mother, so how can I refuse him.  If I do, I feel guilty and then resentful.  If I don't, then it is straight to resentment.

It is hard for Caeden and I, because Joel is always there, between us, in a way.  And this past few months, I have been learning how to live with Joel, without him coming between me and my other son.  I am learning how to keep a son on each side of me.  It is a day by day, in the strength of the Lord, kind of thing.  If there is one thing that this has all really taught me, it is about my own weakness.  But that is another story.



And with this, I am also better able to love my son.  Oh, I don't mean emotionally.  Emotionally I always felt connected to him.  I mean practically.  I feel better able to love my son, practically.  And I know he needs it.  He dictated an email to me, for his Nana and Papa.  In his dictation he said "Please keep Papa from getting sick."  Telling words, for how he is also still thinking of illness and death.

 At times, I am even grieving for what I lost with Caeden in the times that Joel had so many needs.  Especially that first year with Joel.  It is a year that is lost to me, with regard to Caeden.  I didn't even have respite.  I have almost nothing of Caeden from that first year, and it makes me sad.

So I am happy to be able to come out of myself.  I am happy to be able to start to appreciate this last year at home with my son.  I know it is precious.  So precious.

It's partly that I might be coming out of a certain season in my grief.  Yes, surely, that is possible.  I think it is partly, too, a grace of God I am feeling, working in my heart.  My eyes being opened to my need of help to be a mother to my son.  And as I make my heart willing, confess my failure, weakness, and selfishness, I see a grace growing in me.  The ability to do the thing I wish to do, but find beyond my own strength.  Grace.  A gift. 

I don't usually put up pictures of myself, because I don't really like them.  If I never see a picture of myself, I find I imagine myself a lot better looking.  Soon as I see myself in actual picture form, the illusion is shattered.   It seems I am exactly "that manner of man" who looks into a mirror, then goes away an immediately forgets what I look like!   But I will put up a picture here, for you.  It's Caeden and I, proud of a jigsaw puzzle we did together.  Me and my beautiful, healthy, happy, passionate son.