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, November 25, 2010

Let music sing again

Back last January, Joel got his hearing testing with a sedated ABR, and his hearing was still good enough he didn't need hearing aids. It was wonderful news, and when my metabolic doctor heard, he got a huge smile on his face and said "That's great! Now sing to him lots!"

The thing is, I really couldn't. I mean, it was physically impossible. Not because of a mechanical problem with my voice. But because trying to sing just about any song since Joel's diagnosis had made me cry. Have you ever tried to sing and cry? I mean, you might be able to sing if it's just a few tears trickling down your face. But when I tried to sing my throat closed up and funny tones and squeaks came out and my voice warbled in a way that made it impossible. My throat sometimes closed up so much that NOTHING came out of my mouth.

I used to love music. I listened to it often and went out and bought favorite CD's and stuff. Since our diagnosis, it's been silence that I loved. Not that I got a lot of it, what with Treehouse on TV and a young child and a fussing baby/toddler and all that. But I found, at times when I put the music on, that it was just NOISE. It feel so much more peaceful just to turn it off. And most of the time I did, unless it was kid's music.

Yeah. Silence. I craved silence. I used to sing to myself, when I didn't have music on. I would lilt around the kitchen singing every song I knew, and believe me, I know a lot of songs from church and from camp and all that. But in the months following Joel's diagnosis, I just wanted silence with my thoughts, and if I tried to put my thoughts into music, then tears inevitably followed.

I felt guilty that I could not sing to Joel. After all, it's not like he really saw my face. There was so little to amuse him besides me, and I couldn't choke out songs. So I felt bad.

Though he showed little response to my singing, when I did try. It didn't really seem to calm his crying or anything. I never saw a smile in response to it. He seemed pretty blank about it all.

But slowly, little by little, I've started to sing again. I've been able to make it through a few songs in church without having to stop. More every time. And I've started singing around the house again. And listening to some of my CD's.

I've started singing to Joel more too. And funny thing is, yesterday and today, he seemed to like it. He almost seemed to crave it, it made him happier and more relaxed. And surprise of all surprises, for the first time ever, he started to smile in response to my singing.

The last few days have been really hard for me. I've wept a lot and been generally more emotional. This morning I didn't much feel like getting out of bed.

But slowly, over time, it seems like the music is coming back. And no matter how bad I feel, if the music is coming back, that surely is a good thing. Joel thinks so, anyway.

No comments:

Post a Comment