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!

Thursday, January 14, 2010


Whew. Last night was quite a night. I woke up exhausted and emotionally spent.

Let me back up a bit. A very good friend of mine had gotten me thinking. We were talking about God, about how a person could know His presence was real, and that it wasn't just an experience created by our own wishful thinking.

I often do think about these things, and she had gotten me thinking once again. You see, the funny thing is that so many people I know that have gone through some sort of awful experience have told me that God has felt so close to them, helping them through it all. Like God was close to them in a special way.

Of course, too, I have heard of people who felt the opposite, that God was distant as they were struggling.

In my own experience, for the most part, I have felt neither of these things particularly. Or to be more precise, at times God seems "closer" and at times He seems "farther away." Just like most of the other times of my life.

The "closer" times are great, and in the "farther away" times, faith can be put to the test. I have had to work through my faith many times in this way.

So, my friend had really gotten me thinking. Because through all that has happened, there have been times where what I believe has been tested. Mostly because, as I think of Joel dying, I am forced to really measure what I believe about life after death. If it was my own death, I think it might be easier.

But it is my boy that I am "allowing" to pass into that dark place we call death. It is one that I am bound to protect with my life. One that I would do anything to spare pain or suffering.

So I have many questions about death. Will he feel afraid? Will he feel himself "slipping away." What will this experience be like for him?

And, most importantly, can I really trust that this faith I have is not wishful thinking, and that my little boy will not merely be extinguished like a candle? That he will really and truly be passing on to a place that is full of light and love because God is there?

I have been reviewing some of the reasons I believe what I do.

And then last night I had one of those more rare occurrences where I REALLY felt God's presence. I mean, one of those strong experiences. I was thinking all day about why I was sure that God did exist and then I lay in bed and suddenly had one of those clear moments where I could just clearly see and believe it. I lay smiling in the dark because I KNEW that I wasn't just believing a fable. I felt this confidence that God was real as I thought through the logic of it, and as suddenly as the confidence had come over me while thinking about the evidence for His existence, just as suddenly I felt the certainty of His presence. And I was filled with that overwhelming joy you feel when God is just suddenly right there with you and you know that "all will be well."

And I "conversed" with God about Joel, and told Him that I was willing to let Him have Joel when He wanted Him.

And just as suddenly I was flooded with an overwhelming grief at the realization that God could take my son at any time. And I had just given Him "permission!" I crept out of my room and down my stairs as the realization that Joel would one day not be available for me to love here on earth anymore flooded over me. I wept, and wept for all that meant. It was a very painful experience. I cried silently and I sobbed out loud and my eyes grew swollen and my nose ran like a faucet. I mourned, because for a rare moment, I was able to grasp that Joel was dying.

Both of those moments were OK. Both of them were had a purpose. Feeling God's presence filled me with joy. Realizing that He could take Joel to be with Him at any time filled me with sadness. But all of it was truth. And though there was sadness, there was no despair. Yes, God exists. Yes, He will one day take over from me at looking after Joel. And no matter how much it pains me, it will happen.

I didn't like the crying, but I needed to mourn as much as I needed to be so totally assured that God existed. Because in the end, though it tears my heart out to lose Joel, I will be so relieved and at peace to know that the horrible separation I can't avoid will not be into some dark void of nothingness. Instead, it will be into God's gentle hands.

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