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!

Friday, January 8, 2010

More on frogs

Well, that's that. The other frog died now too.

And I sent my son to nursery school with birthday cupcakes, but no snack, which was, of course, a no no. I should have realized that he would also need a snack, but I really don't know where my head is these days. I obviously can't really handle real life.

I've said this before, but really, it must be true: my brain has found a trapdoor at the back of my head. It has deserted the crazy depravity I call my life and has wandered away, likely to a nice, sunny place like Mexico, or maybe just California. Or perhaps a nice, safe little hole where it knows I will never find it...

It is funny. I have been feel so much better emotionally. Better than I have all year, but take that in context. You can't imagine how horrible this year has been, and if you can imagine, well...I send you my hugs cause you need them too. Despite my recent emotional "high" I am still crying ever night at Joel's bedside as I say the same basic prayer "Thank you God for another day with Joel. Please keep him through the night so he is still alive when I wake up. If that is not in Your plan, be gentle with him, and I still trust You." An emotional "high" is a relative term.

In any case, I have felt, in comparision to what was, almost giddy with relief and happiness in Joel's happiness and playfulness. The thing is, mentally, I am still a total basket case. I can not remember ANYTHING. And I have been getting sleep. This is the best I have slept in a year.

But last night Steve caught me. I had turned the overnight feeding pump with fluids to keep Joel hydrated on to 400mls an hour, instead of 40mls. That scared the poop out of me. Not that it would have killed Joel, or anything. Most likely if he couldn't have handled all the water that fast, he would have just puked it all up. Still, I have never made an error like that in all the sleep-deprived months previous. I have gotten a little nervous about giving Joel his meds. I check the bottles every time, but still. It seems like the sudden relief of all the stress and insanity have made me dizzy.

I think I am suffering from decompression sickness. I came up too fast and I can't handle it. Maybe it is post-traumatic stress disorder?? I don't know.

Because I really did not think that my little boy would live to see his 2nd birthday. And he still might not. But I can tell you that if you think your child has only months to live and then suddenly they start to do better, you will feel over the moon. Even if your husband's salary is cut in half, or you are flunking out of the mom section of nursery school. It changes the perspective on everything. And that goes for you doing so well too, Dad. I know you read this every time I write it. The fact that my Dad has, at least for now, beaten leukemia and my little boy is, at least for now, doing well makes me so grateful. So grateful.

So I hope you will forgive me my many lapses. I might be spaced out. I might be emotionally fragile. I might be difficult to talk to, and really annoying if you are the nursery school teacher. But I AM THANKFUL. And that is saying a lot.

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