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!

Monday, January 31, 2011


I'm trying to eat my lunch of soup while I type this. A bit short on time today, as we are off to the doctors in a couple of hours. It's a check up with the ENT doctor to see how the fluid in Joel's ears is, and how his adenoids are too, while we are at it. I think I should have pureed the soup and then tried sucking it through a straw. It's really hard to eat soup and type at the same time.

I'm feeling a bit stressed due to Joel's eyes. They are pretty ugly, even though he is so cute. I hate anything that detracts from his cuteness, especially when we go out. I sent another pic to the eye doctor, we'll see what he says. I'm not feeling too hopeful, from the sounds of what some of the other PBD moms have said, these chalazions are not easy to get rid of. :( It's insult to injury, really, and I have had a little cry about it. I should just be glad that it doesn't put Joel in hospital (and I am), but at the same time, I am having a pretty big emotional reaction to it.

So today we put on our swanky new outfit from Grandma. (Oh, by we, I mean Joel. Don't worry, I'm not to the place yet where I wear his clothing, I have not yet lost any weight despite my "best?" efforts.) It consists of black cords, black and white checked shirt, and black vest with a white pattern. Joel looks pretty snazzy in it.

And while I put it on him, I was thinking about how I really am saying something every time I dress him to take him out. Actually, I think I am trying to shout something, but I'm not sure children's clothing ever gets to the level of shouting. (unlike teenager clothing. Man, those guys can SHOUT.)

I dress Joel in the nicest clothes I can when we go out. At home, he sometimes wears pjs all day. He has some cute ones, and they are very comfy. I don't mind him being comfy.

But when we go out, I try and put on the cutest clothes he has. Because I'm am for sure saying something. I am making a statement. It's one that I can't really say verbally, so I have to make the statement with clothes.

I'm saying "This is a loved and cherished child. This child is important. This child really, really matters to me. There must be something wonderful about this child, because his momma thinks he is AWESOME!" And it's not really subconscious. Oh, I don't think those words every time I dress him. But in the back of my mind, they are there. And the feeling, in my heart, is there.

I think it is sometimes even a warning to doctors. "LOOK OUT! This mom really CARES! Be on your best behaviour and do what you can. This woman hasn't given up on CLOTHING, so she HASN'T GIVEN UP ON HER SON." A wise doctor who sees how Joel is dressed would not say to his mother "We think you wouldn't want surgery anyway, because Joel likely won't live much longer." Of course, we might not opt for surgery, it's true. But a wise doctor will see the way Joel is dressed, and be careful how things are phrased. Too bad when Joel is hospitalized, they usually don't dress him because of all the IV lines!

The message is not only for doctors. It's for other people in the waiting room, or the park, or where ever we happen to be. I am saying "Look! This is a beloved child! I am proud of him!"


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