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, February 23, 2012

Various and Sundry.

This is a bunch of unrelated stuff put together into a blog because I'm not going to the "trouble" of a bunch of three line blogs... :)  If that makes sense.

So,  two words for any would be quilters out there: rotary cutter.  Wish I had realized how important one of those can be in making your quilt exact.  So now I have bit of a problem which I will have to fix.  I have a square pattern I bought with an outside measured for large squares and an inside measured for 4 smaller squares to make up the larger.  Problem is, without a rotary cutter, when you measure with a fabric pencil the outside measure is just a tad bigger and the inside measure is just a tad smaller...  But no matter.  I'll figure it out.  And get a rotary cutter...

Oh, and in answer to the question of if the quilt is to hang on the wall: No.  I already have pictures of Joel on the wall, including a lovely sketch done by Megan Benson (who has a business doing this if anyone is interested.  I think I put the link up somewhere in a previous post?).  I also have Joel's lovely wooden box sitting in my living room in exactly the spot where his playpen used to be. 

So yeah, nope, the quilt is not "on exhibit," the quilt is for me, just me.  Oh, you can see it if you come over.  I'll show it to you.  I mean that the quilt is a hands on tactile way to remember Joel.  Because I can feel the clothing in my hands...  it's not the same as feeling it when Joel was wearing it, but it is something, anyway.  So it is going to be in a place where I can feel it and cuddle it to my heart's content.

Then there is Caeden.  He's doing really, really well.  He loves numbers and is learning to add one and two to the numbers 1 -10.  And he is learning his alphabet and already knows some of the sounds of the letters quite well.  He'll be more than ready for Kindergarten in the fall, even if I won't.

He is also not cuddly anymore.  This makes me sad, even though I know it is really sort of his "true nature" and a sign that he feels secure once again...  He never was a cuddly baby at all.  Seriously, not at all.  He was an affectionate toddler, he'd come for a quick hug, but he didn't cuddle...

After Joel died, that all changed.  Each morning we'd have a cuddle on the couch.  He wanted to cuddle lots and lots.  I enjoyed that.  It was a new experience for me, and for him.  Now, he's been moving away from that.  Once again, he is affectionate, but his affection is quicksilver and brief.  He likes what is traditionally more "boy" type cuddling.  You know.  Chasing and wrestling and tickling...  And I know, in a sense, that it is a "good" sign for him.

It is doubly sad for me, though, in that Joel was always my cuddle-muffin.  He loved to snuggle, particularly with mommy.  He'd be face out from Steve's lap, playing.  But when I took him, he'd turn in and snuggle up.  So it was nice, for awhile, to suddenly have Caeden want to cuddle up.  Now I miss both cuddling Joel and Caeden... life is like that sometimes.

Joel's "deathaversary" is coming up soon.  I'm still not sure about that day or what I want to do on it, how it will feel for us, whether alone is better or not...  It's kinda hard to really know.  For one thing, this is, I am so glad to tell you, the first real "deathaversary" I have ever had to keep.  So it's kind of a big unknown. 

 And just like your wedding anniversary, you can ask a bunch of other people what they did, it might give you an idea, but it really doesn't inform your decision much, other than listing options you might have otherwise been unaware of.  And of course, just like a wedding anniversary, it will also change over time.  What you do for your first wedding anniversary is usually quite different from what you do for your 25th anniversary, thought the constant usually is that you celebrate it each year.  So, the one year after Joel's death day is kinda like that.  If you think of it like a wedding anniversary, only really sad instead of (hopefully) happy,  maybe it will help you understand how I'll never forget that day each year, but it might change over time...

I am going to admit that I have been "feeling" it coming though.  I have notice less motivation and more tiredness creeping up on me.  I know there is quite a bit of pain and sadness growing in me.  Which seems odd to me to say, because I hadn't really ever NOT had some pain and sadness.  But I know it is growing because I know the need to grieve is growing.  And one of these days I'm going to need to sit down and watch some videos and read over the blogs...

I know it is a bit hard for people to remember this.  I can understand that and I don't blame them.  That is why I just keep reminding you.  If you wonder why I keep saying "Well, in 4 weeks it is the day Joel died" or "I'm not sure how I'll be feeling then," etc, etc, it is just that I really am making sure that you don't (as I would and do) forget that day is coming and it is a heavy and meaningful day.  That day is "fully loaded."  I just want to make sure that if you phone on March 22nd and I start bawling, you don't get off the phone and later kick yourself "Oh, tomorrow is THAT day, I totally forgot."  I know some of you are super good with dates.  But some of us (like me) are not.

Last of all, I wanted to apologize for how silly I am!  I mentioned a blog or two ago that I had started a new blog, and then I NEVER TOLD YOU THE NAME!!  Silly me!  The blog is called "Treasure in Heaven" and yeah, you can see the title of a post there "Initial Thoughts about Postmodernism" and all I can say is: WHATEVER possessed me to title it THAT???!!!??  It is like I was subconsciously thinking "Hey, I don't really want anyone to read this, so how can I best discourage them?"  Yeah.  I'll have to make the titles more cute, witty and generally interesting to trick ya into reading it... ha ha ha.

Seriously, though, I sorta figure that a lot of my readers here will not really go read that blog, because if you read this one, you read it for Joel's story, and my other blog is quite different. 

"Treasure in Heaven" is a place for me to write about things that I have been slowly mulling over for the past year or so.  Many, many things.  Here is a sampling: postmodernism - ha!, reason vs experience, prayer, faith, the emerging/emergent church, authority, mediation/yoga, mysticism, the future, do you get sort of an idea?  And this is all stuff that I have been coming across and thinking about.  I wanted an outlet for my thoughts, a place to organize them, and maybe even to share them with anyone with similar interests of thought.  You are under NO obligation to read that blog, even if you are a friend or relative, though you are VERY welcome in any case.  And it is very possible that some of those topics might interest you and others not so much.  The choice is yours.  :)

I think that is about it.  I hope I didn't forget anything.

Monday, February 13, 2012

Quilt

So, I guess I better put up the promised pictures of the start of the quilt.  I'd like to say I was surprised at how very guilty I felt at cutting up some of Joel's clothes.  He has some clothing items which were beautiful, no stains, barely worn at all, and super good quality.  I felt so bad cutting them up and denying them to another child.

But I did it... After all, I did pass on a lot of his clothes from his first two year of life, and I have flickers of regret for that.  I'm not truly stewing about it, because honestly, how many memory quilts could I make if I had kept it all.  I know that is just silly.  Still, sometimes I sure wish I could look through those clothes again. 

Grief is like that.  It refuses to be satisfied.  It is a restless, complaining customer.  Why?  Well, of course, because the one and only thing that it wants off the menu is out of reach!  So you can't please it at all.  Keep the clothes?  Oh now what do I do with them?  Cut them up?  Feel bad.  Keep em in storage?  What good are they if you never see em.  Give them away to another child?  Oh, now you wish you had them.  I have realised that you can never appease or satisfy grief.  So I try and ignore those voices.

Which is why I did cut up the clothes anyway.  In the tears, there were also lots of smiles, because my son was so beautiful and so sweet and such a blessing.

I'm not a quilter or a sewer or a crafter.  Unless you count words.  I like words.  But I'm not that great at handy-type stuff.  So, this quilt is very much in progress.  Some of the pieces are a bit rough.  No, I'm not really sewing much of it together until all the squares are done.  Because I have no idea where I want things and I'm just going to make it a big puzzle at the end figure it out then what the "picture" is supposed to be. 

But the pictures will give you the idea.  And I have to admit, I love what I have so far.  I love it.  It's not going to be perfect, no.  Some of the clothes even have stains on them.  Part of the charm.  Yes.  I am not perfect, the past was not perfect, life with Joel was not perfect, and this quilt will not be perfect.  But it will be wonderful.  And I'm going to let the imperfections of the quilt just speak that for itself.






Wednesday, February 8, 2012

New Blog.

No seriously, I didn't mean a new post, I meant a new blog.  As in, I started one.  :)

I've been thinking a lot later (a dangerous past-time, I know) and I wanted to have a place to write about it.  I mean thinking about things that were not specifically about Joel.  And I wanted to keep this blog about the things that this blog has always been about.

So this blog is staying here and I will still be posting though as you can see, it might be more infrequently.

And my new blog is started up so that I can post about the other stuff that has been on my mind and heart. 

Thus I am writing this blog to tell you about my new blog which I will put up a link to on my sidebar.  And tell you please do NOT feel in ANY way obligated to read my new blog.  I know that many (most?  all?) of you read this because you are interested or sharing a similar experience with grief and loss.  And this new blog is really not about that per Se.  You don't owe me anything, in fact, I feel more like I owe you for sharing Joel with me.

So feel free to check out my new blog, and then read it if you are interested or never go there again if you are not.  I mean that!  :)

In fact, I don't expect many readers, and I'm OK with that.  I'm just putting it out there.  Why am I putting it out there if I don't expect many readers?  I needed to?  I felt "led" to?  It was on my heart?  I don't know, but there it is.

I will be putting up a new post soon about the work I have started on Joel's memory quilt.  More later!