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, February 20, 2010


Apparently it is time I wrote another blog, as my mother in law tactfully let me know I haven't written anything since the 12th of February.

Again, I have lots to say, lots to choose from, that is the problem. Hard to focus when you get so scattered in your mind. So, I will see if I can stay on track here and write something interesting. Well, of course, it will be interesting to me! Maybe you fellow PBD moms will relate to this too, if you have an unaffected child.

I often wonder what all of this happening with Joel is going to mean for my other son, Caeden. I wonder about the impact on him, and how it will shape him. If it will leave large scars, or if most of it will pass out of his memory, and thus affect him in more subtle ways, through the ways it changes Steve and I...

For one thing, the poor guy has a brother who can do no wrong. Literally. Joel can literally do no wrong. So while he gets hugs and cuddles and exclamations of how cute and sweet and lovely he is, no one is ever cross at him or finds his behavior unacceptable. No one sighs when Joel poops his pants. No one makes him say sorry, or takes away his favorite toy for throwing it in the house. No one tells him to stop fussing and act like a big boy.

I wonder if it is hard for Caeden, living that close to a "saint." The other day he told me that Joel had "hit" him, which was, of course, the most absurd twisting and stretching of actually fact that an elastic band couldn't do better. It was more that Caeden had deliberately brushed up against Joel as he was in my lap. It was a desperate, last-ditch effort to put his brother in the same position he often finds himself, on the wrong side of the law.

I hope that as he grows older and he understands more, this sort of sibling rivalry will end, as he realizes that Joel really has nothing to envy. I think it will, as Steve and I do shower down a fair share of cuddles, hugs, and praises on him too. Still, must be hard in the mean time, when you really haven't realized yet that your brother is far from an ordinary baby and that the fact that he never does anything wrong has more to do with the fact that he, well, never really does anything. And that the reason your parents are so ridiculously pleased when he makes a "w" sound is that they will never be able to have even the sort of conversation with him, that was possible with you when you were only 3.

So, in the mean time, I expect it is a bit difficult for him. And I expect, from time to time, Joel will be "accused" of things he is actually incapable of doing.

Caeden is male, and not to be too sexist, I think that possibly this may keep him from thinking too much about the more subtle reactions of other people. Maybe questions from strangers won't ever bother him. Or the bluntness of other children. I don't know.

Since I have no idea when Joel will pass away, I really have not got the foggiest idea what sort of grief/guilt/fear will be in his mind when it does happen. That is dreadful to think of, but I feel slightly more confident about it, just because I have always been very open and direct with Caeden. He trusts me and if he gets to mature just a bit more before Joel leaves us, I hope I can help him sort it out in a way that will heal in a healthy way.

I do worry about how all of this affecting Steve and I will affect him. I worry that we will become depressed and unresponsive, struggle with showing affection to Caeden, once Joel is gone.

Or that on the opposite side, once Joel is gone we will absolutely smother him with worries and emotional needs he can't possibly fulfill. That he will feel panic and claustrophobia from all of our love and hopes and expectations desperately transferred over to him.

I spoke with a young woman once, whose family had lost her baby brother at 10 months of age. I remember her telling me it made her mother very sad. So sad, that for a year she lived with an aunt. Her choice, partly, as her mother was too sad and it was too hard for this woman to be around her. She was just a child when it happened, though of course, a bit older than Caeden is now. She talked to me about how it made her mother sad, even to this day, at times.

So perhaps my worries are not entirely unfounded. I would be so horribly sad and regretful if, when I couldn't save one of my children, I then added large burdens to another.

I'm glad Caeden is a bouncy and outgoing little guy. He is not passive, he is a fighter. I hope this will stand him in good stead, through it all.

And I hope, when I am too sad or fearful, I will go to this blog and let it all out there. I hope I will go to good friends and mature family members and maybe even get professional support.

Even so, I can only imagine what it will be like for Caeden to lose a brother in this way...

May God use it all to shape him into a kind and generous soul. May God deliver him from temptation and let no evil thing near his soul, so that he develops character, not bitterness or resentment. And may God help me to be the best mother I can, and give me wisdom to love both my sons in the manner they need to be loved.

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