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!





Tuesday, April 13, 2010

Protection

You know that folksy little prayer "God grant me..." where you ask God to help you change what can be changed, accept what can't be changed and have wisdom to know the difference between the two?

Well, no where have I found that more of a challenge than in my role as parent, and thus, protector.

Of course, as some might be quick to point out, God is Joel's real protector (and Caeden too, but he is more "straightforward" of a case). Sure. I get that. I know that God knows what is going to happen in the future, I know that He's got Joel's life in His hands.

But it isn't always as straightforward as just humming along sure that there is nothing we have to do as God has got it all. And that is the part that is difficult.

You see, ultimately God is Joel's protector. But for whatever reason, He appears to have left Joel under our care!

I mean, think about what God did with parents. New people come into this world. These new people know nothing about how this world works, what is safe, what is good, what is right. They are pretty clueless. Top it off with the fact that when they get here their bodies can't really do much.

Which is truly a good thing. God knew what He was doing there. Can you imagine if somehow a TODDLER could spring forth from your womb?? All that capability and doesn't even have that trust bond yet. Doesn't even know who "mommy" is, let alone words like "no."

But that means that this brand new little person is totally and completely vulnerable. Unlike turtles, or fish, this little human would have no chance of survival if God did not have this great idea called "parents." And knowing our proclivity for selfishness, He made sure that most of us would do the right thing. Left strictly to our own devices, I'm not sure how many of us would be unselfish enough to burden ourselves with a person for whom one must do everything, even clean up their poop.

So God put this incredible kind of love inside of us. He did this without asking for our permission, cause He knew in the end that families would be one of His greatest blessings on earth. It was a wonderful gift, the way He enabled us to immediately and completely love a person whom we have only just met. I don't know many people who would give their life for a stranger on a subway, but I don't know many parents who wouldn't give their lives for that new little bundle they just brought forth in tears and pain just a few moments ago.

That's amazing and wonderful to me! That is so beautiful, it just about tears my heart out to think about it. If you ever doubt God's goodness here on earth, think about what He gave us, when he created parents and children.

But the flip side of it is, that He gave us this blessing and privilege, but it is also a fearsome responsibility. Could God just miraculously protect every single baby from birth until it can care for itself? Well, sure, I guess so, though it doesn't seem like it would be the sort of thing He WOULD do. If I know God at all, then I gotta say it doesn't surprise me in the least that He has put us in charge of watching over these little people. It's just the sort of thing He'd do.

So every protective instinct, all the love and concern and stress I have when Joel is sick, it is that way because God made it to be so. It is part of His plan that Steve and I care for Joel. He gave Joel to us to take care of. He expects us to take care of Joel. I can't say "Gosh, I'm really tired this week. Joel is not breathing too well, but I'm just going to trust God to make sure that Joel doesn't suffocate and I'm going to take a nap." I wish sometimes it DID work that way. But it doesn't. Steve and I are the ones God has left to make the decisions. To watch over Joel. To have the wisdom to know when to fight for Joel and when to let him go.

This is a difficult and scary thing. It is sometimes hard to know when I can say "Well, God has shut that door, I can relax that I did my best, and trust that He is taking care of it." Like when the doctors refused to send Joel home with an oxygen monitor. I would have felt much better having one. They didn't feel it was necessary. So I had to remind myself that I had prayed and asked God to let us take home any equipment that might help us. And that I had to trust that He had given the doctors wisdom enough for this.

But it is not easy when you are a protector. When you have that protective instinct God has given you, you first response is to fret, worry, and keep working on it.

And sometimes that is what you need to do. Like right now, when my instinct is telling me we should get Joel's adenoids and tonsils removed NOW, not later. The ENT's so far don't agree. I really think that so far I have not done all that is my responsibility to clear the problem up.

God doesn't magically fix everything for us. Sometimes it is our job to keep on trying and fighting for our child. That is why God put that love inside us in the first place. He was making it easier for us to do right by our children. He was protecting our children by making protecting our children as natural as breathing to us.

This is the tension for us parents, particularly parents of sick children. I need that wisdom to know what to accept and what to change. So I gotta stay in close contact with God. When I get caught up in things at the hospital, it is easy to forget that. But without it, I'm just flailing around like a drowning woman, trying to grab any sort of splinter of wood that drifts by. Panic sets in.

It is a fearsome thing to feel the responsibility of a little life put in your hands. It is a great privilege. It is a wonderful gift to be able to love so well and so quickly. But it is a difficult task to walk in wisdom, humbly with our God, so that we might learn to change the things we can, to accept the things we can't, and to know the difference between the two.

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