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, April 16, 2010


My last post, I wrote some of the story of my life, and how I saw God's hand in it, all the way through. How I believed that He had a plan. A plan that He worked out, because I had said yes to Him, even when I didn't know which direction to take.

Well, today I'm going to get "real" in another way. I want to make sure to tell you that I believe every word of what I wrote in the last two blogs. It is every bit as "real" as what I'm going to write here.

But I don't want anyone to get the wrong idea. Think I'm some sort of person with an amazing faith, that there is something about ME PERSONALLY that created all that trust and belief in God.

So today I'm going to share a bit about feet of clay. The feet that do all the walking around in the muck and mire of life. The head is waaaaaay up there, it seems, above the "clouds." But I'm only human, and these feet, sometimes they step in great patches of doubt. And then I slip and come tumbling down. I want to share that.

I have lots of bad days. Days like yesterday. Where you seem sooooo far out of sync with your mate. Where your carefully laid plans to get to the pediatrician and get it over with so that your Friday can be a great time with family, gets run over by a missing bus.

Yesterday was not a good day. It was cold, cloudy, and oh so windy. I used part of my respite hours to get my worker to come early to watch Caeden, so that I could take the bus down with Joel and meet Steve to see the doctor. Then, hopefully, things would go smoothly there and we'd still have a couple of hours to get out for supper together, before our respite worker was done.

Despite my plans, getting us all ready and out the door, braving the buffeting wind (Joel was safely bundled in his weather guard for the stroller, but at times I thought he was going to sail away!) and down to the bus ---- NO BUS. WHAT???

I don't know what happens with these mysterious missing buses, but I can tell you that I am a veteran bus traveler, not some neophyte, and I know what I am doing. Still, every now and then over the years of my life, a bus goes MISSING. And it is always really problematic to phone someone up and say that the reason that you can't make it, or will be very late, is that the bus didn't come. At best, you sound like an idiot who can't figure out the bus schedule. At worst, you sound like you are grasping at really lame excuses.

So I had to trundle back and phone the doctor. If it wasn't already such a late appointment, I would have tried to make it, even if we were really late. But the appointment was already for 4:30 in the afternoon, and we were going to likely be at least half an hour late... So I cancelled and left a message for my husband.

Who had arrived early so he didn't check in at the desk, didn't get my message, phoned home and well, let's just say that things didn't go well from there. I'm not going to go into details both to protect innocent and guilty, and I'm not even going to try to sort out which was which. It was ugly for awhile.

A bad day. The sort of day where you just stomp home from the bus stop, thinking your life is just a series of mistakes. Yes, you heard me. A series of mistakes. Yup, the same person who wrote, just a few days ago, how my life had been directed by God, and how I thought His plan was wonderful. That is what I was thinking. A series of mistakes.

I was thinking "If only..." If only this and that and the other thing, then my life would be DIFFERENT right now. I was thinking, "How did I get trapped in this mess?" Yup, you heard me. How did I get TRAPPED in this MESS? As the saying goes "What a difference a day makes!!!!"

That is the thing about bad days and doubts. You can't base your life or your decisions on them. One of the best pieces of advice I have ever heard was not to make a decision in a bad time. Of course, if the bad time lasts long enough, that might get hard. But I try hard to follow it.

Cause my feet are CLAY. I don't like stress, I don't like difficulties, I don't like negative emotions like anger, neither my own, nor someone else's. I get whiny. I start my own pity parties of "why me" and "if only." I see the events of my life as mistakes that have trapped me, instead of opportunities that God has brought to me. If I could have gotten a hold of an ear yesterday, I would have filled it to the brim with loud complaints and frustrations. You would have heard some hyperbole and some pretty clever descriptions of what had befallen me.

I let you read this blog. It helps me because I'm an extrovert, and I feel better, for whatever reason, knowing that someone cared enough to read it.

But often, what I write, I write for me. Cause I go back and read it. Like on a day like yesterday. I go back and read my last blog. It helps me. These words I have written, when they contain some truth, they help me.

"Yeah," I say, "How can my life be created by a bunch of mistakes I've made, when I can see God's hand in it?" "Hey!" I say to myself, "Did you mean what you wrote, or were you just loving your pretty words and the sound of your own voice?"

Course, then there is what I wrote from the Bible, too. "All things work together for good, to those who love God." Yup, those are hard words on a bad day. Encouraging too, but hard when you are in one of those moods...

Because what it means is that you can't buy a bus ticket and run away to Mexico, even when you really want to. You don't have an excuse for any sort of bad behavior, specially running away, not matter how bad your day is. You have to stick it out and see it through. If you are trusting God, and loving God, and believing it can all work together for good, then you gotta swallow your pride, hurt, or disappointment and forgive any real or imagined hurts. All the frustration, anger, feeling that life owes you one. You gotta let that all go. You know it your heart, if you let it go, it can all be turned around. But it is not easy. At least, not for me.

Being more real: I still have some of the feelings from yesterday with me. Those yucky feelings. So after I finish here, I guess I better go speak with God, and get some things put to rights. Now you know, in case there ever was ANY question: I got my doubts too, and life can hit me pretty hard. I'm not always faith, and thankfulness and flowers. But I know who to speak to about that.

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