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, July 27, 2011

Mermaid

Before it slips my mind, once again, I wanted to put a thank you in here to all the people who sent me cards and messages when Joel and then my Dad, died.  I hope, now, that those who did will manage to read this particular blog, and know how much I did appreciate it.  I know that some felt it was such a small gesture, I no longer have my boy, and they felt a card really was a very feeble response to that. 

It really did mean something to me, though.  Every day, for a month or more, I would get the mail and there would be one or two cards from people, saying they were praying, saying they cared.  It was an acknowledgement that something had happened, that a beautiful and precious person had left my grasp.  It is hard to explain how that helped me, but it did.  It did somehow help, somehow mean something important  to me, all that acknowledgement that a excruciating loss had occurred to my heart.

So thank you to all the aunts and uncles, all the cousins, all the friends of my immediate family and friends of my family-in-law, my good friends, church family, old small group, friends distant in time or place, medical staff and others who worked with Joel (these ones really did touch me), members of my online support group (who bring a special understanding) and any and all other miscellaneous people who send a card.  If you send a card, I read it, with tears, and I am thankful.  Just so you know.

Awhile back I read a research article that was sent to me by the lovely lady who published it.  The article is called "Living in a World Without Closure: Reality for Parents Who Have Experienced the Death of a Child."  I read the article several times over.  Because it was a study of a group of parents whose child had died, and how they view that event and their grief process.  So you might say it was of personal interest to me.

I suppose the word we use for it would be "validation."  An explanation of what I think and feel about Joel and his death, that shows how normal and common my thoughts and feelings are.  The "you are not alone" and "it DOES make sense" sort of feeling.

The main point of the article was that parents who've lost a child do not feel that the oh so common emotional term "closure" applies to their experience, and do not even seek "closure."  Of course, it sort of depends what you define "closure" as.  The dictionary I have, not being up on current psych lingo, says "closed state."  Which pretty much sums up what I think the other parents, and myself, reject about the idea of some sort of "closure" to the experience of the death of our children.

Because, you see, I'm never going to be in a "closed state" in my emotional relationship to my child.  I can't.  I wasn't programmed that way.  I feel this God-given drive, deep in my heart, to be a PARENT to my child.  There is no off switch to this drive.  It's not like the end of Joel's biological functions on earth send off an electromagnetic signal in my body that says "parental urges, disengage."

Let me say it more plainly and with less of the silly:  I love my boy and I always, always, will, and with that love is a need to be connect as a parent to him.  I can not be connected physically, of course.  But I remain connected emotionally and can not and do not wish to severe or come to a state that closes that connection for me.  I love him and will always love him.  And love is also a VERB.

My Dad read a poem for me at Joel's funeral.  He read it for me, because I was sure I'd never get through it without sobbing my guts out.  It was sent to me by a cousin, and it's somewhere on this blog.  It's called "The Cord."  It is really a poem about parental "unclosure," but calling it a "cord" really puts a better picture to it.

What my grieving process is NOT about, is dealing with my feelings, letting go of them and Joel, leaving it all in the "past" one day and "getting on" with my life.  My grieving process is about learning how to live with loving Joel when he is no longer physically here.  My grieving process is about learning to live with the longing to have him here, and channel that longing into positive things.  It is about learning where to put the love and how to show it, in good and healthy, and even God-pleasing, ways.

And oddly enough, the more I embrace this, and figure out how to let out the love, the more healing it is.  Of course, in continuing to love Joel, I must therefore continue to miss him and long for him.  So I know now, and am committed (I will not say resigned, it is an unwilling word, and I am not unwilling) to living with the constant of sadness, of some sorrow.

I am OK with that.  It is, after all, only sorrow.  It is a price I will gladly pay for the privilege of what I have gained and will gain.  I will take sadness with me into the future, but I will also be taking Joel.  I'd rather take Joel, with the sadness, then leave both behind me.

And, with God's help, and the help of friends and family, I will learn and be able to channel that sorrow and that love into good and healing places.  It will be life-long.  And it will be worth it. 



It makes me think of one of my favorite fairy tales, "The Little Mermaid."  But not the Disney version.  The real version.  Just the part where the mermaid purchases legs so that she can be with her prince.  One of the conditions of having legs, is that every moment she steps, she feels pain like knives in her feet.

So she can be with her prince, even dance with him, but one of the prices is the pain she feels in every step.  And yet, she gladly pays this price.

I understand that little mermaid, as fictitious as she is.  Because I too will feel pain at just about every step in life.  But you know, sometimes having legs and dancing is worth it.  Specially when you get to bring along your prince.

1 comment:

  1. Karen your words are so beautiful, i wish i could get you to write for me on Ellie's blog sometimes because you say all the things I don't know how too. Love You dearly. xxx

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