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!

Tuesday, January 12, 2010


Well, I'm not sure where to begin on this one, because I think the topic might be a bit "touchy." So let me start by first apologizing to my mother in law. She gets here in just three days and instead of getting ready for her, I'm writing a blog.

Sorry Ma! Yes, the laundry is backed up and yes, things might be a bit of a mess. Should be doing all that, but I needed to write. Sorry again.

Things have been going well lately. I have my support group with some good friends to "talk" to electronically, and life with Joel is in a "good" place right now. But back when things were nuts, a couple of things people said really bothered me.

And I don't know if I should really put this out here, cause there is definately something worse than saying the wrong thing and that is truly saying nothing at all. In fact, I don't hold it against any of them, because perhaps they meant well, and, well, if they didn't, I am also sure that I too have done the same to others so?? Life is too short to keep a list on people, and I don't even remember who they all were anymore.

So let me say this isn't really written "to" anyone. I'm not writing this to set anyone straight, it is just that it seems to me to be a sort of "belief system" out there that disturbs me at times. I got to get that off my chest. It is this attitude in itself that I am "talking" to, that I feel I need to have a discussion with. "Talk" to it, get it off my chest, and leave it at that.

I would call it "Positivism." Please don't think I am against being positive. That is totally a different word. Just adding that little suffix changes up the whole meaning. Big difference between community and communism, right? So, I am not against being positive.

But it seems to be there is this system of thought lurking out that holds it to be true that if we are just positive, if we just "look on the bright side" then everything will magically be ok for us. As if thinking the best will actually "cause" it to happen. As if you can just "will" yourself out of grief or depression or mourning, or whatever.

And sometimes I have even felt an implication that if I don't see the bright side of all the terrible and sad things that have happened, I'm doing things wrong. Some might go so far to feel, though perhaps not articulate even to themselves, that I am morally in the wrong when I share all my frustrations, sadness, or even anger. I'm being so negative!

And I'd like to say to them that I agree with them, when it comes to something like a flat tire. Sure, when you have a flat tire, maybe you should "lighten up" and see the positive. If you are just late for work, no biggie and maybe the "flat" kept you out of the 5 car pile up along your regular route. I can buy that.

Of course, if you were on your way to a job interview for the dream job you have always wanted, and you miss your one chance, it is a bit more difficult. And if we take it up a notch, and say that your mom was lying dying in the hospital and you were rushing to see her for the last time, then that flat tire seems to be to be a big tragedy you will not soon forget or let go of.

My point is that being positive really involves a "sliding scale." Some things are much more difficult that others. And some things really are off of that scale.

If you are chronically ill, if you have been betrayed by the love of your life, if someone you love has died, you have fallen into a hole of grief and pain and no amount of "exhortation" will help you out of it. For goodness sake, stop talking and go get a ladder!!! Jump in the hole yourself for awhile and see what it is like.

Some people just really don't understand the depths that life can cast you into. I think some of them sort of "measure up" what they think is an acceptable timetable to "get over" something.

"Ok, that is one week for the blindness, two weeks for having developmentally delayed child and a month for the shortened life span. So in about two months, you'll be ok and you won't need to keep going on about things." Maybe they don't say it so bluntly, but sometimes that is the feeling I get from people.

And what makes it hurtful is not when it is well meaning people who truly are sad you are grieving and what to "cheer you up." I know these people are trying to help in the only way they know how.

What makes it so hurtful is the people who give you that feeling that they are not so much trying to cheer you up as shut you up. Like they have taken enough and they don't have the time or the energy for your sadness. It is a burden they don't want to bear, so get over it already and quite being a baby!

No, no one has ever said anything that horrid to me. But at times when someone asked me how it was and I answered honestly, I have FELT it.

"Joel has been getting sick a lot lately and I am really worried."
"Oh well, sometimes even healthy children are sick. I'm sure it is something like that."
And a look away and change the subject to something "happier."

Like I said, I'm not trying to criticize anybody who actually takes the time to ask how I am. Believe me, you are automatically in my good books just for being brave enough to ask. I'm just sharing how some comments "feel" to me.

I don't need you to cheer me up. You can't. My baby is dying, and you can't cheer me up. How can you think that just by focusing on the good in my life I can ignore the fact that the little boy I love with my life is sick, is sometimes suffering, and is going to die, most likely before his 18th birthday? (and if I am honest, I doubt he'll even make it to 5.)

You can't cheer me up. You can only listen. You can ask "What is it about the infections that worry you so much?"

That gives me a chance to share my worries and sadness, to let go of some of it. If I want out of that deep pit, all the wishing in the world won't change it. I gotta dig my way up. Dig and dig, and it is messy, dirty, frustrating, two steps forward and one back sort of work. It's going to take TIME. Measured in YEARS, not months. You can help me by listening without judging.

Unless you have been through something like this, you will have to trust me on it. You can not get out of the pit of sadness, stress and depression that deep grief throws you in by trying to be "positive." You got to do your grief work, and no one can give you a time limit. You can't always change your life by willing it to be so.

So, thank you for the people who at least have the guts to stick around the edge of the pit! Thanks for caring that much, cause I know it isn't the most fun place to be. And a really big, special thank you to all the people who not only stick around, but get their hands dirty and jump right in there with me. You are a blessing!

Here's a thought: "So they sat down with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his grief was very great." (Job 2:13)


  1. Karen....I KNOW how you feel. Like you said some people suck at grieving with you and if it is someone close to you its esp. dissapointing and leaves your mind wondering...."why?" Im always here if you need me as I have been aware for awhile now you and the other PBD moms are the only one who truly understand.Take Care luv ya =)

    Sarah D

  2. I know that I do grieve with you when I read your blogs, tears come to my eyes. But with all that has happened in the last year, I let myself not think about it, because it is hard to bear the grief. I am glad to read your blogs because I know that reading them works me through my grief, even though mine is different from yours. And I totally believe you should continue reflecting about everything you are thinking and feeling, its what the writers of the Psalms did.

    I so appreciated the support you gave me last year during my chemo, even though I am sure you wished you could have given more. I wish I could be more of a support to you than I find I am able too...