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, 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.



2 comments:

  1. Hi Karen...I am still here and still reading. I completely understand what you are saying and your honesty is so refreshing. Even without an ill child to care for as a comparison....I find myself short tempered with William (3 1/2) when he doesn't realize how blessed he is just in his surroundings, health or the fact that he has two parents who love him so dearly and worked so hard to get him. AND...I also feel a bit like I lost him too during our 2nd baby's first year. She suffered from chronic ear infections, was a very clingy baby and then developed a minor seizure disorder that really pulled my attention toward her and I just kind of let my husband tend to most of William's needs...I am just now trying to find my way back into balance with both kids but realize I did miss out a lot on William's 2nd year because of that. It is not just like your situation with Joel and Caeden...but I can kind of relate to what you are saying and understand how you feel.

    Love the picture of the two of you....don't be afraid to post them....you look like a beautiful mother to me.

    Karaleen

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  2. I struggle with those same feelings too, even though we didn't have Genevieve until 2-1/2 years after we lost Makenzie. Too often I have a short temper and have to remind myself that she is only 3-1/2 and preschoolers are simply oblivious to how great they have it. I feel guilty for not enjoying every minute I have with her. I know how short live can be, and that we should be taking advantage of our good health for as long as we have it. And yet, real life makes it tough. There will always be tantrums and demands that make me want to pull my hair out. Then she makes up for it with some sweet cuddle time that melts my heart. I think it's okay for us (grieving parents) to be real people too and accept that caring for our healthy, living children isn't always going to be rainbows and sunshine.

    Love the pictures, by the way!

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