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, April 18, 2011

Names: Part Two

The sun was out today, and that was a start to feeling a bit better.  But it seems that this week grief finally caught up with me.  Not like a roaring lion pouncing and devouring.  More like a big hairy ape that keeps dragging at your heels until finally he manages to crawl up your limbs and settle on your back.

So, I could fill this blog up, as I have said before, with telling you how each morning before I get up, I see in my minds eye my sweet little boy's sleeping face.  And how I think of the good mornings where he'd make his happy wake up burbles.  Even when they happened at 6AM, they made me smile.  They were so beautiful.  And I'll never hear them again on earth.

And I could tell you how I get up and go over to the crib and desperately sniff at the blankets and bedding to try and get the smell of my little boy.  But I really can't.  They were, sadly, too clean when Joel died.  Not much of his smell is left there.  But boy, did he ever smell good.  I used to just sit and put my nose to his neck and his head and just smell the smell of him...

You see how this could go?  I could fill pages with this sort of thing.  This is the sort of thing that goes on in my heart all day.  I'm just telling you this so you know.  I don't want you to think this ISN'T happening.  I'm just trying not to fill up blog after blog about it.

So in the name of transparency, I'm going to write about a different struggle that was revealed to me this week.  It doesn't make me sound as sympathetic.  But it is a part of this road, so I'm going to share it.

I know I have said before that I'm one of those "people person"s.  And that one thing I have always struggled with is that I want EVERYONE to like me.  Yup.  Everyone.  My neighbours, my doctor, the waitress in the restaurant, my distant relatives, people next to me on the bus, the list is endless.

And there have been so many hard things going on over the last two and a half years, that I sort of didn't realize something that was happening to me.  I was starting to rely on a crutch.

You see, I got the title of "Joel's Mom."  I wrote a blog or two about this, way back a year or so ago.  There were different emotions and questions that went along with this title.  But there was an aspect that I never fully realized or explored at that time.

I was "Joel's Mom."  And I was special, because Joel was special.  And everyone HAD to like me.  Because if you can't like or say nice things about the mom of a kid whose terminally ill, then you feel like a real meanie.  (You know what I mean, but I don't use that sort of language.)

So everyone had to be kind to me.  They had to give me leeway.  And they really had to like me.  How could you not like someone with a dying child?  How could you say anything mean?  Or critical?

In fact, sometimes there was a respect or a reverence.  Which made me uncomfortable.  Because I knew deep down that I put my pants on one leg at a time.  And that who I really am was no better than anyone else.  Still, truth is, it felt nice.  I might not always feel like I fit in.  I might not always feel that people really understood.  But - people RESPECTED me, even if the respect was a bit misplaced.  Even if I felt like a fraud, it was nice to know that I was a fraud that everyone liked!

I was the wizard of Oz, before anyone peeked behind the curtain!  People were often asking me how I "did it?"  It felt nice, even as it felt uncomfortable, or a bit worrying.  How long until they discovered I was a humbug?

And I felt special because of Joel.  I didn't have to worry about people liking me, because of Joel.  Joel made me immediately likable.  I was "Joel's Mom."  Men holding babies are irresistible to women.  Moms holding dying kids are just irresistible to everyone!

And now, who am I?  Yeah, I even hate the question, but really, who am I?  I know, I know, I will always be Joel's Mom, but now it IS different.  I'm not the mom of a terminally ill child.  I'm just an ordinary mom.  An ordinary mom who had lost a child, yes.  But as time goes on, people forget that.  It's in the PAST.   Joel was ONGOING.  Joel's death is OVER & DONE.  It won't happen right away.  But it's already started.  As I meet new people, they will see me differently than the new people I meet 3 months ago...  And in time, even the people I know now will feel that Joel is a PAST event.

And I realized that now I felt insecure.  Would people still like me?  Now if I say something stupid, will I just be stupid?  Now if I'm self-centred, will I just be annoying?  Now if I can't get things done, will I just be disorganized or lazy?  The fail-safe is off.  And I'm afraid of failure.  And I'm afraid of criticism.  And I'm afraid that now people won't think I'm special, and now that they don't have to like me, they no longer will.

Sure, you might think this is all messed up insecurity, but then, I also know that there are a lot of you out there who struggle with this.  So I'm being sincere, about my struggles.  And I know too that my friends are out there saying that I'm still special to them, and outside of Joel, and all that.  Thank you, and I appreciate you and your loyalty.

I'm just sharing how God revealed some of the source of some of the "bad" feelings I was starting to have.  I feel, in some ways, that I'm starting over, but not so much in a fresh and new way.  In a "learning to ride a bicycle with only one arm sort of way."  Well, the truth is, I was always a bit of a cripple here, but I learned to use a crutch, and now the crutch is gone.  Bit of a reality check.

So I had to go on a long walk with God yesterday.  And have a heart to heart with Him.  And know that once again I am learning to stop thinking, always thinking, about myself.  And remember that real confidence comes from trusting that God loves me as I am and His approval is what really matters.  And based in the reality of His unwavering love, I can start focusing on other people.  I can remember that what matters isn't what people think of me, but what I think of them.  God never commanded "Have people love you."  He said "love your neighbour as yourself."  Regardless of what your neighbour thinks of you. 

And here is where the real freedom lies.  I know this.  I do.  I don't need (and shouldn't crave) to be special to other people.  I just need to be special to God, and then to go on and make other people special to me.

For awhile, I'm going to be a little off balance.  In a lot of different places.  And one of those places will be in feeling a bit insecure.  Or even a lot insecure...

I confess, I hope you'll bear with me.  I further confess, that I hope you will like me!  But in any case, even if I am no longer sure if people still see me as "Joel's Mom," I know that God still sees me as His child.  I'm learning, once again, to hold on to that.

And in the midst of all that, just writing all that, it makes me feel it so strongly once again.  Joel, I miss you so much.  And not because you made me special.  Because I love you so very much...

3 comments:

  1. Many blessings your way in your new chapter in life w/out Joel. I pray for you daily. -Caro

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  2. Wow Karen! I have had many of those same thoughts as well. I liked being "special" because Graham was special and I was his Momma. I liked being thought of as someone who was strong and courageous because I had a plate full of disabilities, hardship, sleepness nights, worry, sadness, etc...yet, I could still have a smile on my face. I liked people telling me that they had no idea how I "did it" too.

    Now...with my very special Graham gone, it feels like my "special" went too. It use to be be that everyone knew our story...if they didn't...they could see that Graham was special and that there was a "special" story there. Now there are people I meet that don't know my special boy and how he made me special too. If I want my "special" title back...I have to advertise and sell it and see if people buy. My "special" crutch is gone too and I am limping now without it.

    I don't like the fact that some people may not know of my special Graham or worse that they have forgotten how very special he was when they knew it before.

    I wear shirts with his picture on it...primarily because it makes me happy to always have his image so close by...all I have to do is look down. But I have to admit that I also do it to remind everyone else how special he was and that I am still "special" too even though he is not still here. People will ask about my shirts and I get to show him off...the same way any parent gets to show off their child simply by having them with you.

    So...I guess what I am saying is I get you cuz I am there too. Yes you are special...not only because you are Joel's Momma, but because you are Karen with an amazing heart. I know that I am special too, but...I want my "special" crutch back sometimes. So...for now I will use my "special" cane cuz my broken parts are not all healed yet...they are on the mend, but flaire/flare (<---- not sure of the correct one there and too lazy to look it up) ups of pain happen OFTEN and always will to some degree.

    Take care you and know that I am thinking and praying for you often. Can't wait to meet this summer.

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

    God Bless!

    Tracy
    'Angel' Graham's Momma

    p.s. You fixed your spacing issue! YAY for you!

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