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, May 11, 2010

Big Brother

Yesterday at the supper table I started to cry. Caeden was just miserable from the time we picked him up from the sitter. I was looking at him crying, and feeling bummed out about the stress he was under, being big brother to a sick child. Memories started to intrude, of Joel and how it was when we were expecting him, and when he was first born.

I started crying. Just sobbing there at the supper table. When Caeden asked why I was crying, I told him it was because I missed Joel.

Later on, I was at the computer (blogging) and he asked me if I was still sad and missed Joel. I said yes, of course. He asked me about Joel being with God.

At that moment, I realized, my little boy had misunderstood. I had told him, a few weeks earlier, that when Joel died, he'd be happy with God, but we would still miss him. Since I was "missing" Joel, he must have died!

I assured my little man that Joel was not dead, and that I would absolutely tell him right away if Joel had died. We had a nice little cuddle, and I think he felt better. At least, I did.

But oh the stress for that little boy! So many changes. So hard to understand. Bewildering when your parents are so upset and stressed out.

So, today there was a lot of screaming in the house (no, NOT ME). There was wailing and gnashing of teeth, tears and theatrics, great unhappiness over all things big and small for about 45 minutes.

Finally, I did what I knew I had to do. I chased down my angry little bundle of yelling, crying, mucus, dirt and tears. I grabbed him in my arms. I held him close while he yelled and flailed and even tried to push away and hit. I just held him tight against me, until the struggles stopped. The noise slowly died down, and two little arms finally crept around me and held me tight too.

Ah, my little boy. How well do I understand you, who are so like me. All that great show. All that dreadful behavior, that pushing away and leave me alone kind of behavior. And all your little heart really needs is for strong arms to engulf you in spite of yourself, for love to surround you and hold you tight. If only you knew what you wanted... if only you knew how to ask...

But I know. I know you, my dear little man, trying so hard to cope with so much.

So we had lots of cuddles. And TLC. And those pajamas went on, no big deal. We could eat our supper. We could have a bath. We could even go to bed. No more drama. Just the "everyday" sort of corrections needed. No big scenes, or fights.

How many of us are like my little boy? How many of us spend time yelling, fighting, pushing away? Doing everything possible to be miserable to bear, and to drive away love. When what we really wanted all along was two strong arms to encircle us, despite ourselves, and surround us in the love we are too stubborn to ask for and too proud to take?

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