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!

Wednesday, February 10, 2010

The little boy with the light brown curls

Second post of the day. But I have this little boy wandering around in my mind, and I want to set him free here on this "page."

This little boy, with light brown curls. He is a very sweet, good-natured little boy. He follows his brother around with an innocent sort of hero-worship. Sometimes he flops down in defeat and aggravation when he just can't keep up with his older brother's antics. But he doesn't' cry. In a few moments, he is happy to just watch him once again.

He is chubby, this little guy. He is not a "go-getter" like his older brother, not full of energy. He is much more relaxed about life. He likes to watch things, and ponders them in that toddler way little ones have.

He is a cuddly little boy, not as outgoing as his brother, either. He does love people, and he watches them closely. He's not as talkative as his brother though. Not only does he watch people, but he is a listener too. I think that he is not really going to speak much, until all of a sudden sentences come out!

He toddles over to greet his daddy when he comes home, with a big smile and outstretched arms.

He won't grow up to be the sort of person who is ambitious, who gets things done. He's going to be laid back as an adult too. He won't get angry fast, he'll be patient, but when he finally explodes, look out!

People will say he is a nice guy, and he'll shovel the neighbors walks. Some people will think he is easy to push around, but when you get to know him, you will see that he can be quietly stubborn. And very loyal.

But there are years before that, and right now he is just a tumbly little guy, full of smiles and hugs.

Sometimes I see this little boy so clearly, just right in front of my eyes. Sometimes I just catch glimpses of him, out of the corners of my eyes.

This "other" Joel. The one that would be, if that 'little' error on that PEX gene could be corrected. He haunts me, like a melody that played in the distance. One that you can almost recognize and never quite leaves your mind.

It is a friendly, but sad little tune. I wish that I could hear it more clearly, hear it played at about 80 decibels, like the 'song of Caeden' plays in our lives most of the time. But I can't.

So I live with it played in the background. I see my little glimpses of those light brown curls on the back of that little bobbing head. They make me smile. They make me cry. They catch me in paper-cuts of surprise.

The people who love the solid, touchable Joel might get glimpses of this 'other' boy.

The rest of the world does not. They can only see one Joel, the Joel right before their eyes. But that other little Joel is a part of the one in front of them. He is the reminder that there is more to the Joel in front of us, than what we can physically see. He is the reminder that Joel exists as a person, a valuable person, who is more, much more, than the physical aspect that limits him.

He reminds us of Joel's spirit and soul. The true part of us, that makes us human and precious. I wish everyone could see that sweet little boy with those light brown curls...


  1. Oh Karen....I was lucky with Jordan as I feel I got a real life glimpse of the other side of Jordan. That was until he regressed....to be honest I have been thinking of typing a blog also about how much I miss Jordan walking and doing the few "child like" things he use to be able to do. As of late I have been thinking of it alot....and now I to just want to see the other side of Jordan and joel to for that matter!Ugh its soo hard to think about. This is a great blog though and I hope yall are feeling better =)I will look for you on FB

  2. Karen yet another one of your blogs hits home for me. There are many times I think about the same thing. About what Olivia may be doing if she were a normal child. It is so hard to think about and brings tears to my eyes. I still hope to be able to start my own blog some day. I am not sure that I am ready to put my heart out there for everyone to read. I admire you for your ability to do this. By reading your blogs they in a way exactly the same things I am thinking and its my own little therapy session. Thanks Karen!

  3. Hey Sarah and Wendy! Thanks for being loyal "followers." I think it is just like Pam Freeth likes to say, we are all family. Really. It is like we are all growing up in the same PBD house together, sharing the same experiences and feelings, truly sisters.

    So, yes, Sarah, I read your carepages. And yes, I do feel it!

    And Wendy, as I said, when you are ready, I will be reading every word you write. The great thing about the whole blog thing is:
    1. you can restrict who can read it if you want to, and
    2. the only people who will read it are a) the people who truly love you and want to understand, and b) the people who are going through it too. (trust me on this. no one else will read it, even when you invite them. ;) )

    So I know that the people who are reading it truly care and they do not judge me. That is why I love it. And why I love you guys too! 000

  4. Hi Karen: it is Iris Linkletter from Summerside, Sylvia told me about your blog but I had forgotten it's name til now and saw it on Sylvia's FB.

    Hope you don't mind me reading and praying in the background.

    Tender and true, the entries I have read written from a place in life you had no choice about.
    Bless you and Steve and Caden and Joel.

  5. Yes, Iris, you are welcome. My only condition to reading this blog, is that you have to want to read it! :)

    Thanks for your prayers. They are appreciated.