Welcome

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..







WARNING:







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, March 18, 2011

Thought Process

Last night Joel had a fever. It was a more serious fever, in that it didn't respond very well to medication. At 9pm I gave him Advil. At 11pm he still had a fever, and I gave him some Tylenol. At 1AM he still had a fever, but was now resting very peacefully, so I put him in the bassinet in the living room and lay down on the couch (so we wouldn't disturb Steve if I needed to get up again). I don't know when the fever broke, but sometime between then and 6AM I woke to see his heart rate was down, so I knew the fever had finally gone.

So now, before I go on and get all heavy on you once again, I better, once again, say that I don't think Joel is going to die this weekend. He looks better this morning. He's absolutely not on death's door, as much as I hate uncontrolled fevers. And of course, once again, I have to say that his health can also change quite quickly.

I feel fairly sure that Joel does have a virus. I don't know when the viral infection started, or how long he's had it, as it would really be impossible to tell these things when it comes to Joel. I also feel fairly sure that even if things "get rough" with this virus, we're not taking Joel to hospital.

It's a tough decision, and I know you've heard about it before. But I'm framing it again, more for myself than for you.

1. I'm not afraid of death on Joel's behalf. I am sure that when Joel will die, he's going to be with Jesus, in paradise. I think Jesus' promise to the thief on the cross holds true every bit as much for my son. So death has no terror for us.

2. I dread Joel's death on my account. Losing Joel will in some ways very much mimic losing a limb or two. If today you tried an experiment where you tied your right arm down and then went about your day, you might get a bit of a sense of how my life will be both emotionally and physically once Joel is gone. Every moment will be different and every moment the loss of something precious will be felt. In fact, if you want to do that one day, after Joel has died, to show some solidarity with me, that would mean something. It would for sure give you a feel for how MY days are going to feel for a long, long time.

3. Joel's existence on earth is precious, because God has given him his life. His time here is special and treasured, every single moment, because God values his existence here on earth.

4. I'm determined to do as much as lies with me, what is best for Joel, and not what is comfortable for me. And the fact of the matter being that really, NOTHING about this feels comfortable for me no matter what choices we make.

5. God has clearly put a limit on Joel's life on earth.

6. I want my choices to reflect both the value of the life God has given him, and the trust I have in God to decide when the right time is for Joel to go home to be with Him.

I have felt it is time, now, to start praying a new prayer. Now I am praying "Lord God, it seems Joel's health is going downhill. I no longer feel confident that as he gets sick, he will get well. I do not want to fight You to keep Him, knowing I risk prolonging his sickness. So I'm leaving this with You, now. We will not bring Joel in to the hospital unless You clearly show us we should. You can heal him if You want him to have more days. You know this is our desire. But we are leaving it with You."

When Joel looks peaceful, this is easier. I can let him go, when he seems pain free and at rest. When Joel looks uncomfortable or ill, as he did last night, this is harder. Not hard because of the death part. Hard because of the ILL part. There is a very strong, very fierce instinct inside that says "You must DO something," when your child is not well. It is that instinct that would make you run into a burning building, or tear a car door off, or tackle a mad man with a gun, to keep your child from harm. That instinct which says you must try with all your being to keep your child from harm.

Of course, the problem is not really that instinct so much as the fact that our understand of what it means to keep our child from harm, and what to do to help him might need to change. And it's tricky to do that. In the past, keeping Joel from harm meant going to the hospital and seeking any treatment possible.

But now, keeping Joel from harm might mean NOT trying to keep him. It might mean holding and comforting him at home to help him feel better. But old thought patterns die hard. This is not a way we have ever had to think before. It is new and it is strange.

And there in lies the battle. This is the reason that even though I have thought through numbers 1 to 6 numerous times, it is still hard for me.

I've spent a lot of time singing this week. Praying, too. But singing especially. I find singing is a good way to pray when words just don't come. Or when distractions threaten to derail you the moment you start to speak to God. Of course, when I say "singing," I'm not talking about the Beatles or Bieber. I'm talking about singing worship songs to God. If you are wondering how I am doing in all this, I guess that sums it up best. The fact that I need to sing. And the fact that I still can.

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