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, October 14, 2010


I am afraid that after my husband reads this blog, he's going to tell me it was confusing. That he didn't really get my point. I think it is just going to be that kind of blog. But maybe, just maybe, something I write here will ring true for you. Maybe you'll recognize what I'm talking about. Or maybe you will just be encouraged. Or even maybe it will make you a bit more curious about God, if you are in a place where curiosity is your first emotion about God. That's what I'm hoping. If it merely leaves you shaking your head in confusion, or wondering if I'm drunk, I apologize for the confusion and can assure you I've had nothing to drink and am still reasonably sane.

C.S. Lewis wrote a book titled "Surprised by Joy." It is one of the few books of his that I have never read. One day I'd like to. I do know that in it he describes how he came to believe in God, how he was "converted" to Christianity.

In it he writes about a longing he calls "joy" in the book, because that is the closest emotion he could find to describe it. It is this feeling, this "longing joy" that eventually leads him to rediscover God (Lewis was at one time a staunch atheist.) I've never read "Surprised by Joy," but I have seen it mentioned in some of his other books as well, in his prologue to "The Pilgrim's Regress" he tries to explain it and calls it "sweet desire."

I know what he is speaking of. I have felt it too. Like tonight. Steve and I were driving into the sunset, on our way to a movie for our date night. A song I really like came on to the radio. I'm not going to bother writing out all the lyrics for you, but some of the lines of the song were like fingertips gently brushing my heart. "Sing a song of Hope... God of heaven come down... just to know that You are near is enough... just to know You and be loved is enough."

And it wells up in my heart, like a cup filling up from an opening at the bottom, until it's pouring over the edges and spilling out of my eyes, running down my face. That feeling. It's so hard to describe. Something so cuttingly beautiful. As sharp and glittering as a diamond saw, but there is no pain, it's a different feeling. Like the beauty and wonder, maybe even holiness, of it just slices through the covering of the soul and lets this wonderful sweet incense perfume liquid well up and out, permeating everything. It's a feeling full of light, music, hope, joy, longing ... such an indescribable mixture. It is so beautiful, it always brings me to tears, and always, I feel the presence of God so strongly in it.

Maybe because in those moments I'm truest in my longing for all that is Truth, Beauty, Holiness... Like my desire for God Himself, my longing for all that is Him is in the purest form my imperfection can make, and so it is that I can best feel He is here, right here with me.

These moments of what Lewis calls "joy" are indeed most often a surprise to me, coming when I'm neither seeking nor longing for them. They are like a much beloved face long absent who suddenly appears before you while you sweep the floor, or stand in a supermarket line.

Though they also are sometimes "called" to me. When I listen to music about God and sing along the truth in the words. Or sometimes just when I sit and think about God and all the truths that flow from Him.

I'm not sure why I am writing this here, except to say that tonight, in the car, the feeling swept over me again. The song of hope. Just to know that He is near, is enough. And I wanted to write about it. Because these moments are one of the things that gets me through. That gets me through all the sorrow, sadness, longing. The drudgery of fighting to slow down death. The pain and anger of seeing one you love suffer. All of that and more. These are the moments, the moments where I am somehow on top of a vast mountain and below a world of beauty and majesty, and joy, yes, joy, is spread out below my feet. A promise. This feeling is a promise, a vast, soaring promise.

These moments are a gift from God. They give me the hope to carry on through it all. The joy which is my strength.

It feels oddly disloyal to Joel to say that I still can feel joy, in spite of what is happening to him. The way he is slowly being lessened. Like a radio frequency slowly being driven out of range. The way his health and his body are slowly carved into fragility. I know that is not the case, but still, in admitting to this joy, I feel like I am being a horrible mother, even though pain and sadness and tears are also my daily diet.

But that is a falseness, maybe a very bad kind of falseness. I want to be true. So I am telling you now that in spite of all the pain, the suffering, the sadness. All the ugliness and dreariness. I still feel joy. Or maybe I still feel "Joy" would be a better way to say it. God is in His universe. Hope lives in my heart. A promise sings through my world. All will be well. Just to know Him and be loved is enough.

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