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..


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!

Sunday, June 6, 2010

Compassionate Friends - Part Three

This week is different than last week. This week I've had a lot going on in my mind that I somehow wanted to capture and examine out here in Blog-0-la-la Land. But I'm not even sure where to start. It's like when you see this school of darting fish out there in the lake and you think "Man, look at all those little fish, surely I can just put my hand out there and scoop some out." Then when you try that, you come up with empty hands, and the lake itself seems to have emptied of fish as well. Some things are easy to see as they swim by, but hard to capture later for closer examination.

So I'm going to start with a bit more of the stuff in the "Compassionate Friends" pamphlet, about how to help someone deal with the loss of their child. I'm just going to sum up a couple of them, before I get down to the real nitty-gritty of what I want to say.

- Talk about the child who has died. Don't be afraid to share memories. We don't want to be alone in our grief. We don't want to forget our child, even though it hurts, and we don't want to be alone in remembering them either.

- Be patient. Really, really patient. I know I have said this many time, but the pamphlet reiterates it too. GRIEF TAKES TIME. There is no set timetable, and there is no way to "fast track" it. You can't really "will" yourself out of it, or "think positively" to over come it. So, please, give all the time the person needs, and don't try to rush them.

Please, remember us on special days. Holidays, birthdays, the anniversary of the death. These days are usually hard days. Even a happy holiday like Christmas is full of pain when a loved one is absent. It really means a lot to know that you remembered us on these special days, and sent your love and support through a card, a phone call, or a visit.

And last, but not least,

- Be aware that, for parents with religious convictions, their child's death may raise serious questions about God's role in this event. Do not presume to offer answers. If the parents raise the issue, it would be better to listen and allow them to explore their own feelings.

I feel like that is a bit of a "hot button". And I'd like to put a side note on this one for myself. I don't really mind when someone includes an encouraging verse in a card, and I appreciate it very much when people tell me they are praying for us. That is a different thing.

What is really hard is when people start saying stuff about God and the situation when they have no idea what it is really like. This is going to take some explaining, I think. So, I'm going to try.

The world is no more evil, sad, or difficult of a place now than it was 5 years ago. Oh, I know that lots of people are going around saying that everything is going downhill, and yeah, sure, maybe in some places it is. But if you look out over time, you will find many, many examples of horrible things: wars, natural disasters, ethnic cleansing, slavery, plagues of all manner of horrible disease, famine - whew. You name it. That is life here on earth.

And five years ago, I not only believed in God, but I trusted He was not only good, but loving. I was convinced that God was taking care of those who put their trust in Him. Even when there was suffering. Even when there was death. I knew that in the END, God would make it right. I knew I could trust God through the bad times. I knew that He would bring me through and use all the hard, sad, painful things that came along to help me start to grow to be as caring, faithful, and mature as Jesus.

Nothing has changed from five years ago. Speaking in general terms, of course, the world is the same place.

But speaking in specific terms, one thing has changed. I am the one who is sorrowing. I am the one who is grieving. I am the one who has and is suffering this tremendous loss. It is me now. The question of suffering in the world has become personal.

And I am sorry to admit that I am no better than anyone else. The fact is that when "suffering" and "sorrow" and "grief" and "pain" are general terms that are floating about in the distance, it is much easier to respond to them with trust and faith.

It is only when these things come home to rest, when they come to inhabit this place I call my life, that the real test comes in. I'm not proud of this, but this is what we humans are like. It is much easier to keep faith when the troubles are happening to "them," then when they are happening to you, yourself.

I regret that I have to fall back one more time on an analogy that I have used before, but it is one I know fits. I'm thinking of labour. Women in labour have been known to behave in uncharacteristic ways. Quiet ones yell. Calm ones lose their temper. Those normally "in control" can lose it when things get to crazy painful. Where once a husband rubbing your back made you feel warm and loved, now it is so incredibly irritating that you can only hiss through your teeth "Don't touch me!"

You can think about what labour will be like. You can try and plan it out and prepare for it so that you will be "perfect" in all your responses. Maybe, if you are fortunate and your labour is not too prolonged or painful, you'll get through it ok. I had two different labours, and the last one was so painful I really didn't think I could make it. I cried, whined, begged, and absolutely screamed my head off. It wasn't (I hope!) how I normally am. These were extreme circumstances.

And I can promise you that if in the middle of my agony, Steve had come along and told me that "All this pain is good for you. It is helping your body prepare for the baby to come out. You will be glad in the end you went through this," I can promise you that he would have been a dead man. Sure, the day before the baby came, I could have said that. And the day after the baby, well, at least he would have remained alive. But those would not be words it would be safe for him to say to me during my childbirth agony.

It is the difference between me now and me five years ago. Now everything is different. Everything is coloured by pain. Now there are no easy answers. Only answers with blood, sweat and many, many tears attached. And now it is MY tears.

Which is why other people can't say anything about God to shore up my faith. Well meant words said in order to comfort often sound.... just like words. Like air passing between the teeth and lips. Full of sound and fury, but signifying nothing. Comfort, in this situation, is best given by more tangible means. The best encouragement to my faith is often just listening to me work it out. Or even ask to pray with me. I find just plain old praying with someone else very encouraging. But sometimes listening to someone telling me truths about God that I have heard all my life and that I really haven't forgotten is a bit wearying.

It is not that you will say anything wrong or untrue. People often say very good and very true things. It is more just that these are things that I must say. I am learning and earning the right to say them in a different and deeper way. And I will say them once God has worked that out with me.

You can't really say "God will use this," on my behalf. You can't really say "God will bring you through," on my behalf. You can't tell me that "God knew all this was going to happen, and it is all in His control," for me.

These are words that I need to be able to say. You can't give them to me, they will not mean anything if you say them. Life is only given to them at the point when, even in my sadness, pain, suffering, I can say them. These words don't come cheap. They don't come easy. And you can't give them to me.

Kinda like no one can give you a diploma. You have to study, and write the test yourself. Otherwise it really wouldn't mean anything. The paper would be a hypocritical statement of nothingness.

You can put up a diploma in a nice frame, once it has cost you time and effort. Now those words mean something. You earned the right to what is printed there, by your own sweat and blood.

That is why if you say something about faith and God, one of those many truths we so often say or hear in a situation like this one, I may just smile and nod. No, I'm not offended or angry. Five years ago I might have said them, in the same way, myself.

But now I'd really rather you gave me the chance to say them myself. In the times when God and I work it out. The difference between five years ago and now has given those words a different and deeper meaning, one that only comes in the passage of sorrow and suffering. As I go through my "grief work" I am earning the right to say them and learning the ability to say them, even in the midst of great suffering. It might take me a lot of time before I can say those words. But you will see then that the words on this diploma mean something.

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