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!





Thursday, April 28, 2011

Stickers.

First, if you haven't read the previous blog, then please, please do so!

That slippery cat jumped out and surprised me once again.  This time I was at a nursery school, to register Caeden for the fall. 

The nursery school where he went, not this year, but the last year.  And where, when I took him, I also brought Joel with us, pushing him in his stroller and pulling Caeden in the wagon behind us.

I surely don't know why I continue to be so surprised by my reactions...  What do I expect to happen when Joel has only been gone for just over a month?  Yet, once again, I am completely surprised that as I walk down the stairs and into the school, I am suddenly awash in emotions.  I am blinking back tears and trying to "maintain my composure."  I am surprised, because I thought:  nursery school = Caeden.  I am taken aback to arrive to find that:   nursery school = Joel, all of a sudden.

I get myself under control to talk to the teacher, who is new this year and did not know us, or Joel.  But then one of the parents, who also works there, walks by.  And I know if I tell her, I'm going to cry.  But I also know that if she walks out without me telling her where my other son is, I'm being...bound?... by feelings that somehow it's better to appear in control and unaffected and not "embarrass" people with my emotions.  And she did know Joel, and I don't know when we'll see her again, but surely people deserve to know and not wonder where my other child went.

So I stop her and tell her.  And of course, I cry a bit.  And in front of the nursery teacher who has only just met me. 

It's ok, though.  I'm glad I told this parent.  She's a nice lady and my son has continued to ask about her son all through this last year.  She gives me a hug and says she is sorry, and that Joel was a very sweet little boy.  She says she will be praying for us, and then she leaves.

I'm glad I told her, but then it does leave me in an awkward situation with the nursery teacher, who is a very nice lady, but...

Let's just say that it is hard for me sometimes when people who don't really know us come along to be "helpful."  By which I mean that they are worried, of course, because we have lost our child.  And they don't know the resources we do or don't have, or the supports, etc. 

So then I must give them what feels like a short "psych evaluation."  I'm sorry, but it does!  "Do I have family living close by?  Do I have a church I attend?  How is Caeden doing with it all?"  Questions I answer quite a bit, trust me.  I feel I should have a real evaluation and then just pull it out and hand it to the well meaning people.  I'd really rather that they'd just ask about Joel.  But aside from asking about his illness, they don't really know what to ask...

And when it comes to the last question, the one where they ask about Caeden, really, there is no good or safe answer to give.  If I tell them Caeden is doing well, I see the thinly veiled skepticism there.  I can see they think that I must have a mother's blind spot there.  How could a child be doing "well" after his sibling has died?  I think that answer almost distresses them... if I'm not mistaken about his reactions, then the thought that a child could be ok with the death of a sibling is disturbing perhaps.  I don't know.  It all looks so different from where I stand, and I'm not sure I can see other people's positions as well anymore. 

And of course, the only other answer is to try and give em some details of how it has affected him.  You know.  He's had a few nightmares, or he's acted up a bit... although those are really the only two things I can really think of that show much distress about it all.  But do I really want to talk to people who don't know us about how Caeden is doing?  No.  And even less do I want to hear them give me advice about it.  I don't want to hear them tell me that "it might show up later."  Partly because I already know this.  And partly because I already know a lot more about Caeden and his relationship to Joel then they can even try to imagine.  So I don't want to hear advice about how Caeden might feel guilty, or whatever obvious advice other people have to give on it.  It's not like I haven't thought about it, or worried about it, or tried to help him with it. 

I guess it is mostly because I feel like these people who don't really know me have already assumed that I have been and will be so consumed by my own grief that I can't see or care about my son's grief.  And this is a difficult response for me to see them making.  I am a mom, which means I feel guilty for grieving because it might hurt Caeden.  And their assumptions don't help. 

And a small part of it might be that there is a sore spot in grief.  This sore spot is called "advice."  I know I have been guilty of giving it too.  Guilty as charged.  Still, no matter how subtle or well meant, it's hard to hear people offering you advice or words on how to deal with things.  Some days you really do want to get a medal just because you got out of bed, and brushed your teeth.  And you don't want to feel like people think you should join the support group they are suggesting, or that you should get out more, or whatever.

Seriously, maybe I should put up a chart for ME on the fridge.  Complete with stickers.  Got up?  Automatic sticker.  Took care of personal hygiene?  Another sticker.  Took Caeden "out" somewhere?  Three stickers for that one!  You know, it's not a bad idea and it appeals to my sense of ridiculousness.  Which is seriously pretty strong.  I have a really vibrant sense of ridiculousness, and maybe I need the smile each day when I see the chart.  And maybe I need the stickers too!

And yes, the most important part would be: read the Bible and talked to God this morning?  I know that is my lifeline.  And that reminds me.  Didn't do that yet this morning.  So I'm going now.  :)




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