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, July 26, 2010

In the Majority

Before I change the topic completely, I just have to write a short bit about my last blog. I don't think I have achieved closure on it yet! So, thanks to my two commentators who were not afraid to be as honest as I was in my last blog. I appreciated it. There were only two of you, so either the three of us are just a bit strange, or perhaps more likely, we were the only ones brave enough to admit to it. Yeah, it's not something I've ever mentioned (unless I was talking to someone really grieving) for the very reason of the strange looks I might get.

Case in point: After I wrote my last blog, my husband was worried enough to have a little conversation with me about if I was sure I was alright, and etc. Yup. Even my HUSBAND. At least he didn't have me committed. So I sure hope that the rest of my readers are not out there in cyber land wondering about me, and maybe some of them are glad I don't have their address, while my friends are thinking about changing theirs.

Well, let me say it again: I'm pretty sure it is somewhat normal, though obviously not mandatory to grief. Last time it happened, these strange thoughts slowly tapered off as I worked through it all. Though I would like to say specially to you Kd, that yes, I think they can happen occasionally to people who are not in grief. Maybe it's more the stress of a change in circumstance. I think that they do happen to me in the "good" times as well, they are just really rare, as opposed to occurring more frequently in the really difficult & traumatic times.

So, yes, my friend, I KNOW you would not hurt your child, either. I totally get it about these thoughts, having had them myself. And again, thanks for not leaving me hanging. For the rest of you, I hope you know I'm really not a homicidal maniac. Though I am obviously a maniac, I am fairly harmless.

Now, where to go from here?

I had a really wonderful day yesterday. Steve and I took the two boys out to a friend's house. There were several families there, all from our church. It was a perfect day. Not too hot. Not too cold. Not too many bugs. And lots of friends, kids running around laughing or sulking as the mood struck. ;)

And Joel had a wonderful day. He was so happy and playful.

It felt great. It felt "normal." We were just a family, together with other families. Just being together and enjoying each other's company. One of the greatest joys there is here on earth.

And it all made me think, once again, of how very blessed I am. Sure, it would be easy to be bitter, or to complain about the "rough" deal we have. I'm not going to say that being thankful is always easy. And looking at the terrible loss we face, I know that self-pity will be an enemy.

Truth is, one of the reasons it would be so easy to feel short-changed IS because I have it so good. And so do all of you around me. Yes. You do. I'm not saying that lightly, but let's be real.

Cause if we stopped just looking at N.A. and other developed countries, and really looked around, it would truly all look different.

So, surrounded by friends with happy, healthy babies and children, the products of good nutrition and excellent medical care, yeah, it would appear that things are pretty crappy for me. There it really looks like I'm in the unfortunate minority.

I'm not. The world is full of mothers who have lost children. Lots of them in N.A. too. But even more in the world abroad. And talk about a crappy deal, there are resources that could help many of those mothers, if only they could get their hands on them.

Not to mention all the racially and ethnically motivated murders that have occurred, just in the time I've been alive. (I refuse to call it "ethnic cleansing." It's murder.) How many mothers had to watch their children being murdered?

Sorry. I guess this might not be making you feel very good. But I believe in thinking about this sort of stuff. Otherwise not only am I privileged beyond a large percentage of the population, but now I am also willfully ignorant. And as stated in "Black Beauty", ignorance is no excuse. (one day I think I will write a series on the truths I have found in fiction!)

I know I've written all this before. But I was really thinking about it once again yesterday. Wow. I am so fortunate. On days like yesterday, it really overwhelms me. The feeling of being blessed. Of having abundantly more than I either need or deserve. I've done nothing to justify my having so much, when so many have so little.

I hope I can hold on to this knowledge and this attitude, so that I can kick a little "self-pity butt" when he comes round.


  1. Yes...I would also say that grief is not required for these thoughts to pop in. I have also had them in good, happy, stress free times. For instance...when my husband and I were first dating...I would have break-up scenerios go through my mind. I am definetely one who has always hoped for the best...but prepared for the worst. And the worst was always prep'd for in my mind...before falling asleep. I would conjure up break up scenes that would even get me crying before I could snap out of it.

    Like I said for me it is a form of survival...living through the worst in my mind so that if it happens in reality I could survive it...eventually.

    I do have the real, bizarre, violent, thoughts too that sometimes scare me. Just like the other poster said...things that make me wonder why I would even think such a thing. Things I would never, never do for real...but yet my mind goes there...and I don't know why. These thoughts have featured me as the star of a horror film as the bad guy. Perhaps they are a release of anger or agression as the result of a really bad day. Not sure...but I'm glad I'm not alone.

    Thanks again...and I do think that these thoughts are normal.

    'Angel' Graham's Momma

  2. Ahhh..perspective....it is a wonderful thing. I am so glad you wrote this..because I have to tell myself all the time that I am one of the lucky ones...even when life is not going well or tragedy strikes. I just have to keep things in perspective...