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, May 20, 2010

Compassionate Friends

That's not the most original title. No, seriously, it's not. I took it right off of a pamphlet from the hospital, for the parent support group, "The Compassionate Friends." It is a support group, with a chapter here in Winnipeg, for parents who suffered the death of a child.

I don't technically qualify for this support group right now, but I took a few pamphlets, for several reasons.

First of all, when I read one of the pamphlets, it really drove home to me how much I have already entered into the arena of grief. I think I sort of already knew that, but there is just something so confirming when you read some thing in print.

So when it said "Feeling tired, walking in a fog, long- and short-term memory loss, and an inability to concentrate are not uncommon," it did make me feel better. Cause I can tell you that I do have all of that stuff. But apparently it is explained by grief, and not by early on-set of dementia.

And then, they had put out this great pamphlet "How Can I Help... When a Child Dies?" Some of what they had put in there, I had already written in this blog. But it was so good to read it somewhere else in print. And they put it really succinctly and clearly.

I thought about all the times people ask me "How can I help?" And then I thought I would write about what the pamphlet said, in a two or three blog "series." So that people could read it, and understand how to be a friend to me. Or anyone else close to them who is going through grief.

Here you have it, then. The advice of a very large group of parents who have all lost their child, on what would really help them out.

So, I will remind you, as they did, that is is normal to feel helpless. And that there are no magic formulas. And quote them: "Remember that showing your loving concern can be very comforting to a grieving family. Please don't avoid them because you feel inadequate. Families are more likely to reach a healthy, positive resolution of their grief if they receive continuing support and understanding." So, yeah, even if you feel helpless, like nothing you can do or say helps, well, re-read this paragraph. It does.

" -- Don't try to find magic words that will take away the pain. There aren't any. A hug, a touch, and a simple, "I'm so sorry," offer real comfort and support."

I sure wish more doctors read these kind of pamphlets. I think they are so used to trying to cure physical pain, that they just can't help themselves sometimes from trying to use words to cure emotional pain.

" -- Don't be afraid to cry. Your tears are a tribute to both child and parents. Yes, the parents may cry with you, but their tears can be a healthy release."

See, I did write a blog about that one. It was called "Mourners." But I put this one down again for you, because for some people it is easier to understand when it is put clearly and plainly.

"-- Avoid saying, "I know how you feel." It is very difficult to comprehend the depth of the loss when a child dies, and to say you do may seem presumptuous to the parents."

You don't have to tell me that "I DON'T know how you feel," either. I already know that, and being reminded of it just feels lonely. You don't have to say anything about it.

I think most people have a good imagination, and it is easier if you do have children of your own. I think that most people can make a pretty decent foray into empathy just by really sitting down and imagining losing someone they love that much. No, it doesn't really come close to the "real thing." Thankfully. I don't want other people truly suffer that much. But doing that will bring you close enough to grief that you can cry too, and at least understand that things are pretty awful. And that is all you really need to do.

"-- Avoid using "It was God's will" and other cliches that attempt to minimize or explain the death. Don't' try to find something positive in the child's death, such as, "At least you have other children." There are no words that make it all right that their child has died."

I think that is one of the harder things to follow. But it is really important. No one else can say the words FOR me, the words that make me feel there was purpose in it, or that God had a loving hand in it. When I feel that way, then i am the one who can say those words. As tough as it is, you can't say them for me. Or even do or say anything that will help me to say them.

And, I will admit, that I feel very, very lucky to have a healthy child as well. Because I know people who don't. I admit, I'd never change places with them. Losing your only child is a terrible agony.

But that fact still can't make it better that I am losing a child. It is sort of like telling someone who just lost their husband, "Don't worry, you can always marry again." You know? Not helpful at all, really. Or if someone's best friend has died, saying "Hey, you'll make another friend!" So please, don't say that one to me.

I gotta go for now. I have a little boy to snuggle. He IS still alive, and I can still sit and snuggle him and play with him. And there is nothing I'd rather do right now, then take advantage of that fact.

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