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!

Saturday, October 23, 2010

Pancake Musings

Thanks all for praying for Joel, and for your words of encouragement. Much appreciated. I'm relieved to say that, at least for now, Joel seems to be feeling better. I have not given him any pain meds yet today, and so far no fussiness or tears. No smiles yet either, but he did "say" a few things, and that is much better than it was.

I made pancakes this morning. And I'm doing something I have always thought out of character for me and my blog, I'm going to tell you my recipe. :) Because I altered it myself, and I'm proud of how it turned out! It's just your basic pancake recipe from Company's Coming, but I jazzed it up.


1 &1/2 cups flour
1 Tbsp sugar
1 Tbsp baking power
1/2 tsp salt

To this first part I added 1/3 cup Sunny Boy cereal. It's basically just a nice mixture of whole grains, which I'm happy to hide in this recipe for pancakes that my boys love, because otherwise it's really hard to get them to eat anything not utterly free from fiber and bleached white. Of course, then you mix the above dry ingredients together.

1 egg, beaten
2 Tbsp of cooking oil
1 & 1/2 cups milk (I like to go a bit generous on the milk)

And: half a cup of frozen blueberries, half a cup of whole frozen cranberries, half a cup of pecan pieces. The pecan pieces nicely "hide" the Sunny boy cereal, which just passes for bites of nuts and sort of has a "nutty" taste in the pancakes. Lots of fiber in these pancakes! Not to mention how good berries are. Oh, and if you want to make them seem "sweeter" without adding any sugar, add a 1/2 tsp of vanilla. It's amazing how vanilla can make things seem a lot sweeter.

Anyway, my boys love them!

I do love to mess around with recipes and come up with my own creations. Sometimes they turn out great. Other times, not so much. I've made a lot of flops. But I find cooking is a really good and "safe" place to take risks and be inventive. Plus, it really helps that I took a couple of home ec. courses way back in high school, and learned what some of the various ingredients "do" in a recipe. Knowing the WHYS of something makes it much easier to work with it all.

I've always had a big desire to know the WHY of things. I couldn't understand algebra when I didn't know why I did something. I find it much easier to figure out the world of medicine and get better care for Joel when I understand as much of the WHY as possible.

What I don't know the WHY of, is Joel suffering. It would be hard, no matter what. But sometimes I ask God, "Is THIS part really NECESSARY??" I know that He has used Joel to change me. I know that Joel has made a difference by being alive here in my world, and I have even seen some good things happen through it all. It's a lot easier to understand my own suffering than to understand Joel's.

I don't know everything God is doing with this recipe, because some of the ingredients are very puzzling to me. Or maybe even baffling. That is a better way to describe it. God, couldn't you do the same thing here with out putting in Joel having to suffer?

And I don't know the answer to that question. In the end, I have no choice but to trust God and trust what I do know. (I guess Caeden making pancakes would use some very different ingredients than I do too. No doubt there would be a lot of sugar, berries, and vanilla, but I don't think the pancakes would taste very good.)

And here is what I do know. I know that "Every good and perfect gift comes from the Father of lights, with whom there is no variation or shadow of turning." (James 1:17) Which sort of implies that God doesn't give us anything evil.

Some people say that even if God doesn't CAUSE this sort of suffering, He still ALLOWS it, even though He could stop it, which is basically the same thing. I don't see it that way, myself. I hope there is a BIG difference between whether I would go and slap Caeden around or beat him, and me letting him do things where he will, most likely, eventually get hurt, like ride a bike, or play football, or become a policeman or fireman. I mean, in this case, isn't there a big difference between saying I caused Caedens hurt or pain, or that I allowed life to happen to him even though I could wrap him in plastic and refuse to let him take any risks? I don't know, but it does make a difference to me, knowing that God didn't cause this suffering, He allowed it.

I know that Jesus revealed God's heart, as He claimed "If you had known Me, you would have known My Father also, and from how on you know Him and have seen Him." (John 14:7)

I know that when Jesus saw Mary weeping over her brother's death, and all the others weeping as well, "He groaned in the spirit and was troubled... Jesus wept."

I know that when Jesus "saw the multitudes, He was moved with compassion for them, because they were weary and scattered."

I know of not one single person that Jesus ever turned away or refused to help when they asked, whether they were born high or low, whether they were child or woman or servant or leper or sinner or thief.

So I know God's heart, through the person of Jesus. I see nothing there but love, compassion, mercy, kindness. This brings me comfort, even though I still don't understand WHY Joel suffers.

That WHY will continue to stick in my throat, each and every time that Joel's pain makes me cry out myself, wondering when the relief is coming. It's a question born of pain, which will likely not be answered until pain is finally answered permanently. I'm grateful that I have Jesus to hold on to and to comfort me.

Thanks everyone for all the prayers and encouragement.

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