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, July 1, 2010


Mostly I have paid my taxes willingly and without complaint. It might sound unbelievable, but it is true. Taxes, to me, were the donations I would have liked to make, but knew I wouldn't unless the money were just automatically taken off my wages. Left to my own devices, I am sorry to admit, the extra money would be wasted on clothes, fancy toys, and nice dinners. I'm not that good with money, I admit it. And I would have MEANT to give money to help other people, but it wouldn't have happened.

So I am glad for taxes. It does bug me when I see them used for private jets for MP's, but I don't begrudge them general. I don't miss them on a daily basis, and they do so much good. I want to be able to help other people, and taxes are a pretty easy way to do it.

This is the first time that I have become more of a consumer of tax dollars and less of a contributor. It doesn't make me feel great. In fact, there is a sliver of guilt I feel when I ask for something for Joel that is expensive. I know that I would never have begrudged it of anyone else, but still, I feel bad.

So I try to look at the whole thing a bit differently. It makes me feel better in the times I ask for expensive CPAP machines and oxygen monitors. And when the doctor makes me feel bad for asking for this when she doesn't feel it will extend Joel's life very much.

Oh, she didn't say that to me. She brought up the fact that Joel's life would be "truncated." She made special note that most children like him die of respiratory issues. All in the name of getting the facts straight. To be politically correct.

But I'm not stupid and my mama didn't raise no fools! I'm not good with math, trigonometry gives me the heebie-jeebies, but I am usually pretty good with language, and reading what people are not saying as much as what they are.

So there is what she said, and then there is what she clearly was thinking. Here is what she was thinking: "This mom thinks a CPAP will be a magic solution to her problem. Generally CPAP would be better than oxygen, but this kid is going to die from respiratory failure anyway and I don't think he'll even live long enough to see extra benefit from CPAP over oxygen. He's under palliative anyway and those are the people who should take care of his oxygen needs, and leave my program funds free for other people who are more appropriate. I'll make sure to really give her all the negatives and maybe this whole thing will work out with her taking oxygen, which is better all around."

So she came in hard and heavy with all the negatives of CPAP. Thing is, she would have gotten just as far with me if she wouldn't have so obviously been skewing the negatives. It was too obvious to me. It made me feel doubt, it made me feel bad, but it also made me a bit angry. And I can tell you that she lost her credibility as a doctor. Not because she told me bad things I didn't want to hear. Because she tried to make the bad things sound even worse than they were in order to further her own agenda, even though she truly believed it was the right thing to do.

And it does make me feel bad to ask for a CPAP, instead of going with just oxygen. Here is the thing, though. When pressed, both she and the PICU doctor admitted that over time CPAP is better, because though either way Joel gets the same amount of oxygen saturation, with CPAP he will have an edge because he doesn't have to work as hard to get it.

When I ask for things, and feel bad, I try and see it this way. I think the equipment I'm getting is still less expensive then the manpower would be if I were unable to care for Joel.

The equipment may or may not help Joel. But it sure does help me. I know that I am doing everything I can to give him the best time, and the most time, that I can. That is priceless to me. It makes my job easier, it gives me better mental and emotional reserves for what lies ahead.

And I am in a pretty tough place. If I just collapsed from it all one day, if it just got to be too much for me and I ended up in hospital myself, who would care for Joel? How much would it really cost the state if they had to pay someone to do for Joel all the things that I do absolutely for free? Since I'm not good at math, I've never attempted to cost things out, but I have a funny feeling that if the State had to care for Joel from birth, it would have been a pretty penny.

Of course, I would never desert Joel, no matter what. But even good intentions can be completely just done in, until a person can't deal with it. And the cost of that would be more than just Joel's care. It would include my own care, and all the other lives that are negatively affected... I'm not trying to make myself sound irreplaceable, but maybe I am an important girder holding this bridge up, without which the whole bridge collapses, Steve, Caeden, Joel, my parents, my sibling, etc. Who knows the cost in productivity alone...

So sometimes I wish that these doctors could take a larger, longer view of things. I wish they could see that by coming by and making me feel crappy about things they are just adding another brick to my load. I wish they could remember that Joel is not really the only patient. He may not look like much, but his life has a larger radius of influence than you might think.

Of course, if I'm asking for something crazy, you gotta say no. You can't just humour me, and I wouldn't want you to. I get that. I'm not asking for that.

But most of the time I think I'm pretty sane. Saner than you might expect, given how things have been going. So when I ask for something that I have evidence might make Joel's life happier, for a bit longer, I try and stick to my guns. Even when I feel bad about it. I try and remember that really I am saving money by taking good care of Joel, and keeping him out of the hospital as much as possible. And I just hope and pray for doctors who can remember that too.


  1. Wether he is dying or not, is not the point. He deserves the interventions that give him the best quality of life and the happiest, easiest time. If CPAP does that, then it does and that should be a FABULOUS thing that everyone can be happy about. I don't see how it will prolong anything by much anyway. It's only CPAP for goodness sake.
    I'm sorry that she made you feel that it was a waste of money and gave you grief. I am appalled at her insensitivity. I would do and pay a lot more than the price of a CPAP machine to give my boy the best quality of life he can have. Woe to anyone who gets in the way of a mom trying to do make her sick child's life a little better.
    You might want to jot down names and details so that some day you can write some letters. You might save the next Mom some grief and frustration. I'd be happy to edit/help in any way I can.

  2. I know the doctor means well. I think it all ties in with the blog after this. She sort of was more thinking it WON'T really prolong his life, but would just drop the quality for nothing.

    I haven't found the CPAP to be that hard for either Joel or I, so far. He is pretty laid back, and I really don't think it has detracted in any way from his quality of life.

    What I am hoping most is that when he has an easier time breathing (because it is less work) it will mean he has more energy for fighting infections and playing and all that. I am hoping it will be a better way to ensure he doesn't end up in a downward spiral where he is breathing faster and harder at night. So that we don't end up in emerg as much (as long as there is no aspiration pneumonia)

    Will it give him more life? Well, I don't suppose it will add years. But maybe if his body isn't working so hard, and there are fewer infections, maybe I will get a couple more good months out of it?? Worth a shot in my books, not too mention that struggling to breathe doesn't seem like much quality of life to me. :)