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, March 21, 2011


Thanks for the food and support, everyone.

I know people will be checking this blog often to see how Joel is. First of all, I want to tell you that no news is, if not good news, then OK news. I want to assure you that if Joel passes away, I will post a blog ON THAT DAY, once I have informed family. So, if you don't see a blog, please do not fret about that.

The reason you might not see a blog is more that there just might not be anything to say about how Joel is. I might need to blog some of my own feelings or struggles. But when it comes to Joel right now, it is any one's guess on how this will play out for us.

Right now it's easy to get sucked into a lot of up and down. It would be very easy to focus so hard on trying to find out what is going to happen that every tiny little "good" thing is a sign he's getting better, and every little tiny "down" is a sign he's going to die. But the truth is that these little pluses and minus's will just be part of things and don't really have much significance.

If Joel is going to get well, it's not going to happen quickly. His whole lung is full of goop, and that's not going to just clear out for him. In fact, the P/C doctor told me it is quite possible that it will never really totally clear out or even get much better, but that Joel's body might just sort of "find a balance" to live with it for .... awhile?? So that for whatever months he has left, he might not really be sick, but he'll need to sleep on his right side and he'll need lots of O2 and that sort of thing. He might be able to smile or play a bit once again, but he'll stay a lung short, and his health will remain very precarious. That is one possibility.

And even if his lung clears, it will be slowly. And the last place that will be confirmed will be with an X-ray or stethoscope. The P/C doctor said that often a return of strength and energy happens before the lungs start to clear out.

And the other thing is that every single day could be a day that he "suddenly" just is too tired to fight on. His breathing will not be steady anymore, it will go all wonky. He'll be less aware. And his hand and feet will get cold and mottled in a last ditch effort of his body to keep his organs going. It's just the nature of the way it goes.

You can't really say he died "suddenly" for surely we have our notice. But it is likely that his body will continue along in the same state, like a car, until it runs out of gas. And there is no way to know how much gas is left in the tank. There will be a few sputters, and then the engine will just die. The dial is on empty, which is warning enough. We just don't know if Joel can make it to the next gas station on the "fumes" left in the tank.

And if you have ever been in a situation where you were out in the boonies looking at that little "E" and a long stretch of road, then you can extrapolate how this feels. Just magnify the feeling. And this is why I'm trying really hard not to get too caught up in constant "He's going to live, no he's going to die, no he's going to live, no.... " You get the idea. It's very hard not to do this. But I'm trying. And one way I'm going to try to do this is not get you caught up in it either, by posting every little up or down.

So if I think there is anything SIGNIFICANT, then I will tell you. Otherwise you are stuck here, in limbo, with me. Not fun. And we could be here for weeks...

I'm not really sure what to pray for. Of course, I just want Joel to get better. Steve is desperately hoping that Joel could live at least until the summer comes. He wants a couple of weeks at home with Joel. It is very hard for me to tell him this is not likely... and I don't really have the heart. It is so hard to believe it myself...

Joel really does seem pretty comfortable. If he didn't, then I'd say pray that if he's going to die, he dies quickly. But I'm truly not seeing much suffering. It's not just me, in my mommy's wishful thinking. The P/C doctor came by today as well, and thought Joel was very comfortable. And yes, he'd be the one to say if it were otherwise, because part of his job is to make sure Joel is comfy.

So, just keep praying that Joel stays pain-free and comfortable. And that whatever God's will is, that it would be done, and more importantly - accepted by us.

I'm not hiding anything. This is very, very hard. Of course, later, I'll look back on this time and wish I could just do it again, because right now I can still kiss my boy and hold him. But living with all this uncertainty is very, very difficult.

I have snuggled Joel lots and lots. I will keep doing that. Not much else is left in my hands.


  1. Dear Karen and Steve... I completely remember your feelings of dread and uncertainty "waiting" in the hospital with our Alana (here in Edmonton). This limbo land is precious AND so painful. You are now and always will be Joel's mom. I think I was more in denial than you are about death coming. I blocked this out til nearly the end. Kiss and hold your precious one. Each moment is worth a million dollars. I remember feeling torn between being a mom to my healthy toddler (Allison) who would have me longer and to Alana. Sounds like you have good family time in the evenings. May love surround you. Kathrybn and Huy.

  2. Keep snuggling that little guy. My thoughts are still with you. XoXo

    Sarah D

  3. Karen such a horrible place to be where you are right now because everything is so uncertain. Luckily it sounds like Joel is comfy, which is the main thing. You just hug, kiss, smell and touch your little boy as much as you can.
    Lots of love to you all.
    Lyn xxxxx

  4. Hi Karen,

    I agree...limbo land sucks...the uncertainty of it all. I am happy to hear that little man Joel is comfy. That is such a good thing. Graham having his broken femur that last week...ughhh...so hard. I am thinking of you and praying for our Joel (see that...he is "our" Joel) alot. Always on my mind...you guys are. I'm glad that you are blunt...I was the "why don't you just know what I need and do it" kind of person.

    But I have a great site for you that I think is very useful. A friend of mine used it...and it was really helpful for her. The site is http://www.lotsahelpinghands.com. You can create a free account and in there you just post what your needs are each day. Give people the account to log in...and they can just sign up for whatever need they can fulfill for you. Does not have to just be meals either. You can put in laundy needs, grocery shopping, Caeden care, Joel visits, anything. That way everything is coordinated and you don't end up getting 5 meals one day and none the next. Also...once someone signs up for something...it won't get double booked as long as everyone checks the site...and you know what help you are going to get each day. Check it out...it could be a big help to you. My friend had someone manage it for her...so if it seems too much...have someone close to you (both close in freindship and living close by) manage it for you as they will need your input as to your needs.

    Love ya lots. Sending prayers and Graham blow kisses to you.

    'Angel' Graham's Momma