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!

Saturday, April 10, 2010


We've had so many great doctors, and I'm really grateful for them. Sometimes, though, you know that they just really don't get it. And it is hard... you can sort of see how you look through "their eyes," you know it's not really accurate, but you can't change it.

And there is a big difference between knowing something in your head, or knowing it in your heart. That gets said a lot. You get used to hearing it. But until it is YOU, getting the heart knowledge pounded in from where it was always in your head...

For example: denial. A stage of grief. And it is one of those things, that gets really frustrating when you are dealing with the docs.

Lots of times it really feels like they are assuming you are in denial. For instance, when they KEEP ON stressing to you how one day your son may have breathing problems that they can't fix. No matter how many times you acknowledge this to them, as long as you are still asking them to treat your child, they are still going to keep saying it. Because if there is one thing you can't deny, it's denial. Like that famous question "When did you stop beating your wife?"

You can't win, until you are telling them to let your child die. And as long as you believe that today is not that day, they are going to assume that you can't accept your child is dying and they are going to keep reminding you. Even though it is apparent that today really IS NOT that day.

That gets pretty frustrating. Believe me. I do understand that whenever Joel dies, it is going to be a shock. Yes, a shock. That is just how life is. And no matter how many times I say it or a doctor says it, death is a shock. It can't be avoided. So I really wish the doctors could realize that as much as is humanly possible, I have come to grips with Joel's death. And there really isn't any more that is humanly possible for me, until Joel is actually gone. At this stage I truly can't move any further into acceptance.

Of course, then there are the times where I am not looking at them clear eyed without a quiver in my voice and acknowledging that the disease is fatal. There are the times when I am telling them for the first time that we don't want them to restart Joel's heart, and then I am crying. Then my emotions are just barely under control. You'd think they'd find this reassuring. Isn't this how acceptance would look?

And then it always the same silly question. Oh, I know they HAVE to ask. Just like they have to keep "preparing me" for Joel's death. So they ask "Are you ok?" I understand they have to ask that.

But really, was there ever such a silly question?? My baby is dying, of course I'm NOT ok. If by ok you mean that I feel great, everything is hunky dorey and under control. How could I be ok? Are you asking if I am going to have a nervous breakdown? Really, you are the doctor. Can't you tell? Or how am I supposed to know that better than you do?? Anyone who knows me well, knows that I cry A LOT and so far, (cautiously said) no nervous breakdown.

As if tears were any sort of sign that you are NOT alright, and clear-eyed statements about Joel are some sort of sign that you are in denial. Isn't crying a logical reaction to this sort of stuff? Wouldn't someone who NEVER cried be a bit scarier? And if you have come to some sort of internal reckoning, can't you be calm and still speaking of a future, even when you know it will be short?

Well, they try. And they mean well. They just don't understand how sometimes they make me feel more uncomfortable about being "emotional" around them. Or how sometimes their efforts to help me realize my son could die soon are like having your face washed with steel wool. Instead of being helpful, it starts to feel unnecessarily cruel.

There are sometimes doctors who do seem to have a glimmering of understanding about it all. Precious people, they are.

I wrote to one of these doctors awhile back. I was asking him for information on a study that he was a part of. This study showed that DHA treatments did not seem to help PBD kids. There is a lot of controversy surrounding this treatment. I was going to put the information up on our group site.

I know this good doctor does not believe that DHA will help our children. But I think he was loathe to give me the info for the purpose of posting it on the group site. Because the DHA can't do any harm. And as he said "Wanting something for our children is a very powerful thing." In that statement, I thought, he really showed he got it.

Because I think he understood that DHA treatments help us parents, even if they do not do much for our children. I think he understood some of the frustration and helplessness we feel. And how grindingly wearying it is to have hope constantly snatched from you.

Feeling like you are doing something to help your child restores some strength to you. Being able to keep hoping despite the odds is that little feathered thing that sits and sings in your soul, as the poet says. It does live on the smallest of crumbs. And it does cheer you through the dark times. I wish more doctors could understand this.

I appreciate the compassion they show. I do appreciate how they try to "keep it real," with regard to Joel's prognosis.

But I can't help but wonder how many of them have gone through this kind of loss, and wish that more of them could really understand a bit better how we must constantly battle to understand and accept what is happening to our child, while at the same time we must keep some small hope for future bright times, however brief.

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