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, May 6, 2010


I've already commented on this in other blogs, but I am going to write some more about it. It's the whole thing of how sometimes I feel like other people think I am too negative. Like I'm just sitting around wallowing in sadness, in an unhealthy way. A lot of people give me the very good (if somewhat unnecessary) advice to "just enjoy ever minute you have with Joel."

That is good advice (though, as I have said, I already sort of thought of that myself), but sometimes underneath it I wonder if I hear an admonition, which would go something like this: "You are robbing yourself of happiness right now by focusing on sad stuff. Put that stuff aside and focus on the good and happy stuff instead." In fact, I think a few people might have actually said something pretty much like that.

I guess there are people out there who can do that, and it actually works for them. They can actually just file it all away under "G" and think of only positive things and somehow have mainly happy, good feelings, even though their child is terminally ill. And if that works for them, then good! I'm glad. I don't have any desire to make anyone whose child is ill suffer any more than they have too.

I just know for myself it doesn't work that way.

Let me tell you about my refrigerator. It is, sadly, the refrigerator of a procrastinator. This is greatly troubling to my poor husband. I can only let your imagination fill in the horrors he finds when he makes a foray to find something to eat.

It's usually the leftovers. I do try and use 'em, but sometimes... Well, I open the fridge and look at 'em. There they sit. I don't want to have to reheat them or eat them. And I sure don't want to make any decisions about throwing them away or cleaning them up. Ugh. So I push them to the back of the fridge to deal with them "later."

But this only works for so long. I mean, it does work, for a short time. For a short time, I have freed myself from those troubling leftovers. Thing is, they just keep piling up. Each day it seems there are more leftovers. And then more. And let me tell you, time does NOTHING to improve them in any way. If they were hard to deal with the next day, I can tell you that after two or three weeks go by, it's gone from hard to horrific. You can keep putting it off, but unless you have the money to dispose of your refrigerator and buy a new one, eventually YOU WILL HAVE TO DEAL WITH THEM.

A lesson I never seem to learn when it comes to leftovers. But when it comes to my own emotions, I have learned it. I just try to get those negative emotions out of my emotional "refrigerator" as they come. That's the only thing that works for me, that keeps things bearable.

It sure doesn't mean that I don't sometimes escape when it all gets too much. Respite is one of those times. Or I go play my favorite video game, if all I am doing all day is fretting. Believe me, sometimes I indulge in escapism too much. But for the most part, I take my grief as it comes, in the daily lumps and bumps. And I cry. It doesn't necessarily make it "better." But it does keep it from piling up and becoming UNBEARABLE.

And I want to say something about "enjoying Joel while I have him." Here is the thing, for me anyway. The more I enjoy Joel, the more pain and sorrow I feel. The more love, the more attention, the more I value him, all of that feeling, all of that time, is time when I feel the most pain and sorrow. I really can't see any way around that one either.

It is like the last day of vacation...

You see, the first 10 days of your vacation, you can forget everything else, and just have fun in the sun. You can take each day as it comes, and try to put work and responsibility behind you. It is care-free. You "just enjoy" it.

But the last day of vacation is different, isn't it? When you know it is the last day... You want to enjoy everything to the utmost, but the more great and wonderful it seems, the sadder it is to realize that tomorrow it ends. Worries and work starts to intrude, though we battle to let them go. And in a sense, that is all a good thing. Because all the feelings of sadness that vacation is over and reality is intruding help keep it from being too much of a "shock" the next day, when it is all over. At least, that is how it works for me.

And if Joel was showing signs of progressing, developing, or being less severe than he appears to be, it would be like those first ten days of vacation. We could forget about things for awhile, and just enjoy it.

But it is not. Because he is not. It is our "last day" of vacation. That might mean another month or another year. But we can't ignore what is coming.

I could try to shy away from the sadness involved. But the only way I know to do that is to disconnect more from Joel, not love him more. If I don't want to feel any pain, then I need to be somewhere else than with Joel. Because holding him, hugging him, playing with him, kissing him, just looking at him, all that huge, vast love, all of it.... it goes hand in hand with the pain of knowing I'm going to lose him. The pain IS what makes it precious. The pain is the price tag of loving Joel.

So I can never really put the tears away. Many times when I cuddle Joel or play with him, there is a smile on my face and tears in my eyes. Really loving someone will cost you something. As a favorite movie says "Love IS pain, Highness. Anyone who tries to tell you different is selling something."

It is a price I am willing to pay. My choice is made: I will love Joel freely and with out reservation, even though it pains me now, and will rip my heart out one day. I wouldn't have it any other way.

Please don't think that all of this means that I am never happy, or joyful. Especially the joy part. I don't know how to explain this, but even in all this pain and sorrow, there is joy.

I have heard many people try to explain joy, and the difference between it and happiness. It's really hard to figure emotions out. Let me say, that when I am talking about joy, I'm talking about the feeling I used to get when I was a teen, swinging in my front yard. The sky was blue, the birds were singing, and as I went, to and fro, joy would well up inside me. I was soaring, really soaring in my spirit. It is the feeling that beauty inspires in me. And funny thing is, it is the feeling we are talking about when we say something is "so beautiful, it makes me cry." Like at a wedding.

I get this joyful feeling when I see the beauty of nature. The fingerprints of God. And I get this feeling when I think of God's love, or His power, or what Jesus did on the cross. Joy. My heart and spirit are soaring.

And let me tell you the funny thing about this emotion. I have NEVER felt joy when I was angry. I have NEVER felt joy when I was worried. I have NEVER felt joy when I was depressed, annoyed, frustrated, bored, or any other negative emotion like that.

With one exception.

I HAVE felt joy, even when I was sad. I HAVE felt joy, even when pain pierces my heart. So, when I hold Joel, and I feel such pain, I often still feel joy to look at his face. And absolutely, when I feel so sad that I am going to lose him, I have still felt joy to think of how beautiful it will be when Jesus bring my boy to greet me one day when my life here is over.

With sorrow, joy. With love, pain. And that is the best I can do right now, to enjoy my child while I have him. I think anyone who tries to tell me differently is selling something...

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