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, September 16, 2010


A while back, I think it was in June, I wrote a blog called "Angel." It was about how Joel had taught me so much...

I've written about a few things that Joel has taught me, and here is another one. I suppose it is along a similar vein as the others, but something a bit new, too. Previously I've mentioned how Joel has helped me understand the value of being human. What really counts. That sort of thing.This is along the same lines, but a bit of a different perspective.

Before I had children, when I thought of God as a father, I could relate to that through my experience with my own father. After having children of my own, that picture of God as my father deepened and was enriched through my experiences with my own children. I learned a lot about unconditional love. About what it means when the Bible says God has compassion on us like a father does his children.

Joel has brought me an even deep and more detailed picture. For I have two sons. One of my sons is the "superstar" of the house. He does and says a lot of cute things. For example, yesterday he was playing with a box (best toy ever!). He got inside and told me he was a caterpillar and the box was his "crystal." Then he came out as a butterfly.

It is easy to brag on him. He is (are you surprised a mom is saying this??) so smart and funny and personable. He seems to have enough personality, enthusiasm and bounce for 5 children. I have his art work up on my fridge, the construction vehicles he cut out for himself with a pair of scissors and glued up. Only thing I did was cut out the wheels. And he is only 3 and a half!

Sure, I love him unconditionally, but also there is a lot riding on him. I'm counting on him to help around the house as he gets older. To marry and give me grandkids. To help take care of his dad and me when I get older. To make something out of his life and make me proud. It's easy to see that what I "invest" in him will pay off.

Then there is my other son. I sure love him too. But he costs me a lot. I'm the one doing most of the giving. Sure, there are good times when his smile lights up my life. But there are lots of bad days. Where I get nothing back for all I put in. It's hard to really brag on him, though I am proud of him in my own way. It's just that he doesn't really do anything new. I got to show off his new teeth, and that was great, but generally there is a gaping lack of achievement. And his role in the future is going to be limited to the memories he's given me. And not all of them good ones.

And you know, for all that, I love both my boys with the same amount of love. The expectations are different. The future is different. What I get out of it is different. What I can brag about is different. But the love is the same, overwhelming and unconditional.

Which taught me something. I have always been a bit uncomfortable with two somewhat paradoxical truths. Knowing that God loves me and values me. And knowing that I really bring nothing to the table for Him. That I cost Him something pretty huge.

It was hard for me to understand how God could love me and find me so valuable and important when I had not to much to offer back, other than love. It was humbling to be sure. And sometimes it sort of... chafed? How could someone insignificant be significant???

But holding Joel in my arms, I could understand it with my heart. Joel can't "pay me back" for anything I do for him. I am proud of him, in my own way, but there is really nothing, if I am honest, that amounts to any great achievement or success. My relationship with Joel is largely me giving and him taking. There is no physical good he can do me. In fact, he has likely cost me something in terms of my own health, through lack of sleep, and the difficulty in getting exercise, stress, etc. And he doesn't mesh with my on an intellectual level either. Emotionally, well, his love is invaluable to me, but in the long run the amount of pain and sorrow will pretty much cancel out the times of positive feelings I have, if we put positive and negative feelings on a scale and weighed them out. The only thing he brings to the table is his love for me, which is still an immature and "baby" kind of love. And the only reason that has value to me is BECAUSE I ALREADY LOVE HIM.

And yet, despite the pain, the cost, and the lack of return on my "investment," I love Joel with every single beat of my heart. I'd never give him up. I'd never trade him in for another "perfect" child.

And though intellectually I function miles above him, and though physically my abilities and "powers" place him in a position of utter dependence, though he has cost me so much, there is none of that in our relationship. No "if you do this, then I'll do this." No "look, you really owe me big time so walk on eggshells and cringe around me." No "You are so far beneath me, keep that in mind!"

Yet, he's never going to understand me. I am "beyond" him.

But all I want to do is keep him close and love him. With no distance between us. And all I want from him is his love, even as simple and ego-centric as it is, for surely his attachment to me is directly related to all I have done for him, and for the safe and warm feeling he has around me. It is based on gratitude, on familiarity, and comfort. And that is enough for me.

I understand so much better now, the way that God loves me. To be sure He wants me to "make Him proud" by being the person I was meant to be. To be sure, He wishes me to learn to love with a more mature sort of love. To be grateful and to worship Him. He even has some tasks or "chores" if you will, that He might ask me to do.

But His love is unconditional. No matter how little I bring to the table in and of myself. And there is no distance there. It sounds incredible if you think about it. How an all powerful and all knowing being would love us like that. But I can understand it with my heart, because despite the difference in abilities between Joel and I, there is no distance there either. He's just right there in my arms and in my heart, close, close, close, which is what I really want.

And as the Bible says, if we humans, containing evil in our very nature, can love our own children as we do, how much better can God, who is perfect, love us? I'm not capable of a better kind of love than God, He will always out love me.

I'm not the "superstar" child. I'm not sure how much, if anything, I really give God to "brag on." But I am sure of this. He loves me without reservation, unconditionally and even intimately. His biggest desire is for me to allow Him to hold me in His arms, close, close, close.

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