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!





Saturday, May 22, 2010

Compassionate Friends - Part Two

Sometimes it really blows me away, when I realize people are actually still reading this blog. Still faithfully checking in on me. Or people I didn't even know were reading it. I really expected a lot of you would be either too bored, or too sad & depressed by it to keep on reading. Thanks all.

And now I'm going to continue on with advice on how to help someone who's lost a child. And really, some of this applies to a loss of any significant person in your life. Sadly, I think this info is stuff you will find a situation to use it in. So I hope people are reading this. Not so you know how to help me so much as I think there are lots of places to use this sort of kindness and caring.

I'm going to quote the "Compassionate Friends" pamphlet quite heavily. And this time, I'll put it in another colour. I'm feeling a bit guilty over my lax "footnoting" behaviors. It is the teacher in me coming out. But this being a blog, I don't want to get to technical. So: another colour.

Of course, one of the "big things" is listening. But let me quote this part: "Understand that parents often have a need to talk about their child and the circumstances of the death over and over again. It may be helpful to encourage them to talk by asking a gentle questions such as, "Can you tell me about it?"

I was really thinking about this one, as a friend of mine, a sister in this crazy PBD world, was dealing with the anniversary of her son's death today. She wrote in her own online journal about it. And I know it was something she really needed to do. I hope very much that all her friends could understand her need to "relive" that day all over again.

I wish I could explain that to you all. All I can say, is that though you may think it is not healthy, though you may not wish to hear or read anything so difficult and sad, sorrowing parents can not escape. It is normal, and it is necessary for us. You might save us a lot of money we can't afford to pay someone professional to listen, by being willing to listen yourself. Maybe. Or at least maybe we won't have to pay them for as long.

It makes me think of the prophet in the Bible, but now I forget which one it was, cause my short term and long term memory are gone. I'd look it up, but it's late, and I'm tired. Look it up yourself if you are curious.

Anyway, God wanted him to say some things, but he didn't want to. He tried to keep the words in, but they were like a fire in his bones. And that is the best way I can describe it, except to maybe say it is a fire in your brain. It burns round and round, like a hamster on a wheel, until you let it out. Then it's ok for awhile, till the next flare up.

And please, please, "avoid judgements of any kind. 'You should...' or 'You shouldn't...' is not appropriate or helpful. Decisions and behaviors related to displaying or removing photographs, reliving the death (see above once again), idealizing the child, or expressing anger, depression or guilt may appear extreme in many cases. These behavior patterns are normal, particularly in the first years following the child's death."

Every time I think I can shorten or summarize something from the pamphlet, I find I just can't. Too much good and important stuff. I think that it all says it best there. But I'm going to add one thing.

Judgement-type advice, the sort of advice that carries an implicit message that the person is really in the wrong if they can't/don't take your advice, that.... that is the sort of thing that will make a hurting person merely stop telling YOU about how they are feeling. They still are going to struggle. They still are going to feel all the bad stuff. But they will no longer feel comfortable telling you about it. And when I say all this, I'm thinking of myself, how I can think of times I have done this to another person. So, lets all forgive each other and ourselves if we know we are guilty, and we'll just try and do better from here on in.

Finally: "Be there. Run errands, help with household chores, provide child care, and help in whatever way is needed. Don't say, "Call me if there is anything I can do." That call will probably never come. Be aware of what needs to be done and offer to do specific tasks."

So a big, big thank you to all the people in my life who are already doing this. Steve and I have already had lots of help, lots of casseroles, people who mowed our lawn when Joel was in hospital and the city was threatening to fine us, lots of babysitting, people who take me out so I can "get away" from it all, rides to doctor's appointments, all that stuff. Thanks.

I am still going to stress the part where it says "Don't say, 'Call me..." Cause let me tell you, that when things really get ugly, truth is, I'm not going to call either. I just won't.

Not only might I not be able to actually perform that simplest of all tasks, retrieve the phone, dial a number, and speak, but I likely won't even think of it. Anyone who has had some serious emotional stuff go down in their life will likely attest to that fact. When your brain is absolutely numb from the pain, the stress, the depression feelings, believe me, you won't think of calling anyone. I know I won't either, because even now, when the poo hits the proverbial rotating cooling device, it doesn't cross my mind to phone anyone. Seriously. It is like I have shifted to an alternate universe where phones haven't been invented. I only ask for babysitters for Caeden, because Caeden himself is right there in front of me with obviously no place to go. And that is as far as I can deal with the situation.

And even when it crosses my mind to phone someone, I might not be able to do it. There is a point when you are just so emotionally exhausted that you truly can not get the "oomph" you need to form words. You wouldn't think so now, if your life is going ok, but it takes quite a lot of saavy to be able to use appropriate language and inflection when dealing with another person on the phone. And to be able to read their voice in return, and understand their words. A simple question like "How are you doing?" can really just floor you. I mean, I can just stand there like someone has asked me to explain how the force of gravity works in ten words or less.

Never mind trying to decide if they really want to come over/help you out/mow your lawn/hear your problems AGAIN, just from the subtle inflections in their voice. I'd rather crawl into a space shuttle and try and figure out the controls. So I would just rather crawl into bed and pull the covers over my head. You know what I mean??

That's why your generous and well-meant offer to "Call anytime" just will never be used. That is why friends who call and say "I'd like to come over right now for coffee, is that ok?" are fabulous and fantastic. And friends who call up and say "I made a casserole, can I bring it over tonight?" are priceless. And someone who says "Would it be ok if I came over to fold your laundry while you take a nap?" is just out of this world.

2 comments:

  1. Karen,

    We have never met, nor even spoken words to one another. We communicate only by written word through your blogs, my sons Caringbridge page, by Facebook, and email...yet, I feel as if we know each other so well.

    Thank you for being my friend, a fellow PBD Momma who "gets it", my sister in Christ, and for touching my soul today. Thinking and praying for you, your family, and for Joel...always.

    Tracy
    'Angel' Graham's Momma

    Graham - IRD - 7/14/99 ~ 5/22/09
    http://www.caringbridge.org/visit/grahamwhitney

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  2. Karen, I know you've had a lot going on right now and this may not be something that you want to think about right now, but I wanted to get you the link anyway--just in case you're interested in the future.

    I just came across this today and I know you had expressed interest in embryo adoption, but couldn't find anything in Canada...

    http://www.beginnings.ca/news/first-open-embryo-donation-program-launch-canada

    ReplyDelete