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!

Tuesday, September 7, 2010

Bummed out, and citing some lyrics.

I haven't been feeling super duper recently. I'm sort of stressed out. Anxious. Bummed out. And sad. Always sad.

You won't see it so much when I'm with my friends. I'm an extrovert. My happiest moments are usually with other people.

But I'm not feeling that great. It's really hard for me to see Joel not so happy himself. I start to get a little freaked out wondering how bad it's really going to get for him, before he passes away. Do you think it might be a little bit of an understatement to say that I'm dreading those last days?

And whenever Joel stops doing well, these anxieties overtake me. I can keep em behind me as long as he is alert, playful and happy. But when we hit a stretch like this, one where it's pretty much nothing but sleeping or fussing... what can I say? It is hard. Sometimes he doesn't even want to be held. He is HAPPIER when I put him down. That is the worst, I think, for me. I don't know if he just feels more comfortable, or if being in my arms is sometimes too stimulating when he wants to shut down and is having trouble doing it, but its really hard for me when he spends most of the day just lying in his bassinet or crib, because he just isn't happy in my arms...

Then there is the seizures. Still happening. Yup. And now I am getting suspicious that he might also be having "absences seizures." Which have got to be one of the trickiest ones to catch, especially in a child who is blind with a nystigmus. He's just not been himself, in any case.

And I'm dreading the approach of flu season. What else can I say about that?

Today I was taking Caeden to the library (Joel was with his respite worker, thank the good Lord for respite!). And while I was walking down, a song was playing in my head. It's a beautiful song, and it has great lyrics, which I thought I'd share here. I think it's a song that most of us sing...

Naked Heart
Julie Miller

Don't want you to see me like this,
Don't want you to know how it really is.
Put on this smile till you go away,
Hope that my eyes don't give me away.

Yeah, I can pretend that everything is alright
Gotten really good, done it all of my life.
Keep you at a distance so that you can't tell,
I'm not doing very well.

If you found out who I really am,
If I showed you what I keep in the dark,
Stripped of my defenses could
Your love really clothe my naked heart?

Gotten so used to having this pain,
Can't imagine it could ever change.
If I should look at the truth inside,
Feels like I might not survive.

So I wrap up this part that doesn't look good,
And I make it look lovely like I think it should.
But if you only know who I pretend to be,
How can I know if you could really love me?

The cry of every heart, no? First truth in fiction, now truth in lyrics.

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