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, April 20, 2011

Story Time

Yesterday I went to a mom and preschooler event with Caeden called "Purple Stew."  It was... good?  How can I really encapsulate it in a word.  Ok, let me tell you all about it.  No scratch that, let me just tell you about the parts I think are interesting and want to tell.

It was good to be there with Caeden, and feel like a "regular" mom.  It was strange.  Very strange.  I wonder if it was a little bit like a parolee feels like?  Sort of awkward and strange.  Free, yes.  But not altogether comfortable there.

And it was ok until a couple of songs into the singing in a circle time.  Just was thinking.   Thinking about how I was there because Joel was not there.  And how I'd never get to do singing in a circle with him.  How sad it was that this was the first time I was doing something like that with Caeden.  But mostly just feeling how I was there because Joel was not there.  And it almost tipped me over into some good ole tears and sobbing, but I managed to stave it off.

The rest of the time went ok.  After the singing, and a story reading time, the kids did a snack and craft, and the moms got to go do some coffee and a "parent project" (read craft for big people).  I felt slightly awkward, once again.  I ran into someone I had known long, long ago.  She obviously didn't know anything about Joel.  She just mentioned how she'd never seen me there before and did I live in the area?  I just said that I lived nearby, but had been somewhat housebound, and the subject was dropped.

I hadn't expected that.  It all blows me away, how I can walk into situation after situation completely unprepared for it and how it all is unexpected.  Why didn't I think a bit more about how or what I would say in these situations?  Well, I don't know.  I do think about it, but then it's all different when it happens. 

Or more often it just seems that life happens to fast for me to figure these things out before they happen.  When you are grieving, there sure is a lot to think about, and then again, sometimes you just don't want to think about it either.  And in the midst of it you forget things like what you'll say when you meet someone you used to know before your terminally ill child was born and then died, and you just are a bit at a loss.

I do know if people ask, I'm going to say I HAVE two children.  Because I do.  Joel's body is dead.  But he still exists, just in a place I can't see or touch him.  But he has not been erased from existence.  And he is still my child.  So I HAVE two children, the oldest one is four, and the youngest one is in heaven.  That's what I'm going to say.  And I'm going to look them in the face even if there are tears in my eyes, but there will still be a smile on my lips, and it won't be fake, either.

This is all leading up to something a bit different.  You see, one of the parent projects was to make a book for your child.  A book about favorite and healthy foods.  Or whatever.  I took the "whatever" option.  I'm going to make Caeden a book.  With great originality I'm going to call it "The Story of My Family."  And yes, I'm even going to work on this book THERE.  Yes.  THERE.  In front of the other parents.  Though I typed out the story here, so I'd have the time and emotion to get it "right."  And so I could get most of the tears out.  But I AM going to put it together there.  And I AM going to let the other moms see it or read it if they ask.  This is NOT taboo.  It is a part of being human.  I'm NOT hiding it.

I'm very pleased with this book idea.  I think it will be really good and helpful to Caeden.  Because he needs to be able to read and "learn" the story of us.  Much of my memory has been wiped from stress and sorrow, and there is a part of it that I only have because I rehearsed it over and over.  I learned the story.  So now I know the events, even if in my mind's eye they are a bit cloudy.

And I want Caeden to have this too.  I know his memories will grow dim.  I want to allow him to rehearse the story until he OWNS it.  And I want to fill in the gaps.  And put it the events in a story where they make sense.  A book, with a story and with pictures.  Because he gets tired of hearing about Joel, and he's only growing into the attention span needed to really get the whole picture.  This is the easy way for him to be able to do it.

Easy.  And the book with have pictures of Steve and Joel and I.  But mostly there will be pictures of him and Joel.  To have for his own.  Mementos to prove he was an important part of what happened.

Also, I will be providing him with the vocabulary and thought processes to be able to talk about Joel to other people.  So that he can be at less of a loss himself on what to say.  I'll be giving him the answers to some of the questions other people might ask him, but again, in the best and easiest form for a four year old to manage.  A story.

I feel so relieved and pleased, like I'm giving him a very good gift, that I want to share it with you.  In case there are any of you who read this and are in the same situation, and you'd like to try this too. 

The school has the stiff paper and scissors and glue all there, but this isn't hard to do.  I wrote the story up on the computer using a nice large font.  I printed off some favorite pictures just using regular paper.  Then it will all get glued onto the stiff paper pages.  I think I will put some clear "mac tac" over the pages so they don't get ruined by a spill.  And then I'll get the holes punched in and a coil book binding thingy.  Sorry, my teacher vocabulary has left me.  It won't be professional of course!  It will be personal, and heartfelt.  And Caeden will love it, being in his very own story book, pictures and words and all!

I am going to write out my story in my next post, so you can read the "story" part.  I think it might be a bit time consuming and tricky to put in the pictures, but I might try and do that too, if I feel like it... or at least some of them, anyway.  I hope maybe it helps someone else out there.

3 comments:

  1. What a fun project! And YES you HAVE 2 boys and I HAVE 3. You ARE a family of 4 and we ARE a family of 5. And someday in Heaven, your 4 and my 5 will ALL sit down in circle time and share a story or two.

    Joel (((Hugs))) and 'Angel' Graham kisses to you!

    Tracy
    'Angel' Graham's Momma

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  2. Still praying for you all, Karen. I think the story book with Caeden is a great idea!

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  3. Absolutely you have 2 children. No one can ever tell you any different. -Mousumi

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