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!





Monday, May 30, 2011

Caeden

Someone asked in a comment about how Caeden was doing.  So I thought I'd say a bit about him. 

I think Caeden is doing well, and I'm not too surprised at how he is doing.  I sort of had a grasp on his relationship with Joel before Joel died.  And also, I did some work to prepare Caeden for this time.

But that doesn't mean that even I exactly know what is going on inside Caeden.  Because children, particularly such young children, really have a tough time explaining feelings and thoughts, you kinda have to judge a lot from their behavior.  On the other hand, it is really tough to know when certain behaviors are signs of emotional turmoil, or just a sign your child is in another "phase" of development.  So most of what I say about Caeden is a bit of conjecture.  But here is what I have got:

After Joel died, Caeden was understandably a lot more "clingy."  He wanted lots of cuddles.  He sat in my lap A LOT.  This may have been due to the insecurity losing a member of the family creates in a child.  It might also have been a reaction to finally having Mummy's lap ALL to himself.  A reaction to feeling "second fiddle" for so long.  For the first time, all my love and attention was available for him, and he did make full use of that.  Some of that has "worn off" a bit, but he still likes to sit in my lap, and to have a "morning cuddle."

Caeden has been more prone to "meltdowns" since Joel died.  Then again, it is hard to say what that is all about.  He had many off and on times where he was prone to meltdowns, and then "better" times in between.  He is, after all, only 4.  And four year olds are prone to times of meltdown behavior.  Hard to know what is related to stress and change, and what is related to being 4.  All things considered, he seems to be pretty well adjusted.  And happy.

I think it might make people a bit uncomfortable, but the truth of it is that Joel's death affects Caeden VERY differently then Steve and I.  He really wasn't what you would call "close" to Joel.  Last year, when Caeden was 3, Joel was more able to interact with him.  Then, there were times of a sort of "playing" together.  We would play "patty-cake" and if Joel was on the floor, Caeden would bring him toys, and etc.

But all sorts of stuff happened between now and then.  And Caeden's memories of that time are very hazy to non-existent.  The last three to six months of his life, Joel was still interactive, yes, but not in a way that is interesting to a three & a half/four year old.  Joel's role in the family, from Caeden's point of view, was that of a boring drain on Mommy's affections.  Joel was a body that took Mommy's lap up when Caeden wanted to sit there.  Joel was Mommy getting medications and feedings.  Joel was sometimes a lot of unhappy crying.  I'm not saying there was no level of affection there at all.  But Caeden's experience of Joel was COMPLETELY DIFFERENT from Steve and I.  And I'm ok with that.  I really understand.

So with the honestly of a four year old, Caeden will say he doesn't miss Joel.  His feelings are too nebulous and ambivalent for him to completely understand and articulate.  In fact, his grief process so far, I think, has included more of guilt for being happy to have his parents to himself.  And confused, frustrated, and again, guilty, because his parents remain so sad and unhappy about an event that scared him, yes, but did not, in his eyes, change his life for the worse.

The part of it that really tears my heart out is not this part.  It is as I had expected, anyway.  What tears my heart out is when Steve and I broach expanding our family with him.  When we start discussing how he'd feel about adding a sibling.  Invariably he says "One that can walk and talk??"  This makes me feel so sad.  The gap between what was and what could have been.  The gap that he feels more and more.  And the gap he will feel as he grows older.  The sibling he COULD have had.  And doesn't.  This is where most of the "grief" part of his grieving process will end up.  He doesn't miss what he "had."  He will miss what he COULD have had/have, and doesn't.

He is indeed, a big blessing in the grieving process.  Seeing him laugh and run around in delight lifts my spirits and gives me a great joy.  I thank God every day for this.  It is precious.

Of course, the other part of it is that in some ways he makes grieving harder.  Because it is hard to do with him around.  It is nice to have his demands on my love and attention.  But on the days when I feel like I'd just like to shut down for awhile, I am in a quandary.  If I take some grieving time, I feel guilty because in a sense I'm a bit emotionally "absent" for him.  But if I don't, it is tiring and the grief can build up, etc.  It is a balancing act.

Caeden forces me into the world of happy, healthy children.  I'm so grateful for that.  On the other hand, taking him to Purple Stew was SO MUCH emotional work for me.  I must honestly admit that I really didn't enjoy it that much.  It was GOOD.  I was glad I did it for him and for me.  But I can't say it was exactly fun.  He forces me out of the house.  But sometimes I just want to hide inside of the house, instead.  And then I feel a bit guilty...

Of course, nothing about grief is easy.  If he weren't around to force me out of myself, then I might really get stuck in the muck of it.  Love is a powerful motivator.  Thankfully.  But that doesn't mean it is easy.

So what can I tell you about Caeden?  He and I are slowly forging a new sort of relationship.  He doesn't always enjoy the fact that I have more energy to discipline him, making him pick up his clothes and his toys.  But he loves finally having the obvious "first place," in fact, the whole of the place, in our lives.  He hasn't had a nightmare for a long time.  He really seems very happy and contented.  And I try above all else to let him feel what he feels about Joel.  And to check in every now and then about what ever might come up.

He was very happy to get his "Story of My Family."  As time goes on, he'll understand more and more.  I am really not too worried about how Caeden is going to come out of all of this... maybe I should be...but it just really seems to me like he's going to be ok.  Because Steve and I are ok.  We are sad, filled with longing, sometimes regretful, or overwhelmed, occasionally even agonized by loss, only just realizing what has happened and just beginning to deal with it and sort it all out.  And ok.  All I can tell you is that we are ok, because God is here, with us.  And because God is with is in this journey and we are ok, so is Caeden.

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