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, January 28, 2011

Banishing Resentment

I was speaking to someone who helps us manage life with Joel this week. We were talking about whether or not our family needed/wanted to have some out of home respite for Joel. And something that came up in the discussion was how out of home respite is a needed break for some families so that they didn't get a build up of resentment toward the child that needed so much care and attention.

At the time, this idea surprised me. Just the thought that I might need break from Joel to help me cope with feelings of resentment. And I realized that it had, indeed, been a long time since I felt any resentment about the situation at all. Now this blog gets tricky. I don't want to sound "preachy" or like some sort of guru or something. Nothing harder for a smoker than someone who has just quit, right? I don't mean this blog that way at all. If you are struggling with resentment, I promise I don't judge you. I just want to share something beautiful God has done for me.

Of course, it is normal and natural to feel resentment any time our obligation to the people in our lives keeps us from doing things we really want to do. That feeling of being "trapped" in a situation, and giving up what we love because we are forced to do so.

And I have felt resentment about Joel. Though I don't think I ever felt it towards him. I guess I figured he really couldn't help it, so I directed any resentment toward the situation, or maybe even towards God. The one thing I really remember is way, way back, when Joel was only about 8 or 9 months old. Back when I thought I was looking ahead to a future where Steve and I were still caring for him as we turned 60. I can't believe it now, with everything that has happened since then. But with our initial diagnosis of IRD, we really thought that Joel would live to be 10 or even 20. I know of children that make it past 25.

And when I thought of those years... well, as I have already mentioned in other blogs...I guess you could say the thought didn't please me, to think that I would spend the rest of my life nursing a person who would only get more dependant and have more and more health problems. I didn't want that to be what I looked forward to retirement to do.

And at different times, with lack of sleep, I felt a bit of resentment. Why couldn't I at least get a decent nights sleep if everything else had to be so crummy? That sort of feeling.

I guess it would be possible to say that I don't feel resentment anymore because both of those "big" situations are over. It is clear that Joel is not going to be here in 10 or 20 years. And I get enough sleep, most of the time.

That would be accurate, but I'm not sure it would entirely explain it all. I suppose this should be a "no-brainer," but I think I know what happened to resentment, an enemy I do remember I feared at the start of this journey. I think the weapon that did ole resentment in was simply allowing God to grow thankfulness and gratitude.

I don't want to make people struggling with this feel badly about it. Heck, I know how hard some of this stuff is, and there is lots of stuff that I let control me, instead of mastering it. And at any moment resentment could rear its' ugly head for a rematch.

But really, resentment went out, not with a bang, but a whimper. It just got "thankfulnessed" away. My eyes were opened to see, as I have said before, that what I thought were walls, were just curtains, beyond which the horizon spread out before me. And I saw, really saw, how much I had. I can tell you, I feel BLESSED. I am grateful for family. I am grateful for friends. I am grateful for my food, shelter, clothing. I am grateful for my education and the experience that I've gone through. I'm grateful for all the services we have given to us: O/T, P/T, doctors, hospitals, respite, medications, equipment, counselling, tax breaks. And I am grateful for Joel. I can not say I am grateful for his PBD. But I can tell you I am grateful that God has NOT decided to heal him, but that God has decided to transform this experience into something very different from how it first appeared to me.

You can not feel gratitude and resentment at the same time. I'm happy to be rid of the resentment and keep the gratitude.

And then there is the part where I had to give up some things for Joel. Yes. I do have to give up some things for Joel. But then, I don't see that as entirely accurate, either. I had some plans for life. It was painful to have some of them stripped away. Some for just a season. Some likely for good. I won't say that it's not a painful or difficult process.

But the power over resentment started to grow the moment I said "Ok, God. You take this. I give it to You. I'm here, waiting for You to show me the way to go." Maybe this all sounds like gibberish to you. Maybe you are reading this and you don't even believe God exists, so I just sound nutso. Fair enough. But I have to point out that I am a grateful and resent-free nutso!!

It's kind of like when a child gets a hold of a fistful of coins. And then an adult comes along, and tells them, "I'll trade you those 5 pennies, two dimes, three quarters and a nickel, for this lovely red piece of paper with the queen on it." We, like small children, are not always able to recognize the true worth of what we are being given.

My fistful of coins was taken away by things bigger and stronger than me. I sat on the sidewalk and cried, real, bitter tears at the unfairness and pain of a life where things can get ripped out of your very grasp. The choice was to see that there were greater riches being held out to me and accept them, or to lie on the sidewalk in a funk or worse. An unwilling pupil will never learn anything. Only a teachable heart can be transformed.

My favorite work of fiction, of all time, is an allegory. In the story, the heroine is on a journey. It is a journey very similar to the one I find myself on right now. On this journey she crosses many obstacles, including a desert, where she finds a tiny golden flower. When she asks the flower it's name, it tells her that it is called "Acceptance with Joy." The little flower has accepted with joy the desert and the small drops of rain that fall on it, and now it has a beautiful flower.

And I see now, that all along this journey, God has been "tricking" me. For I see I come upon that word, "acceptance" once again. In fact, from the moment I started to say "Ok, God, here is this horrible thing, this ugly, terminal illness, I surrender it to You. Please take it all and use it for something, transform it into something beautiful", I see that in that moment a little seed started to grow in my heart all along, and now I find a golden flower there.

I surrendered my "perfect" family. My plans. I surrendered my son's abilities, even his very life, into God's hands. Only then was my heart teachable. Only then could I see the beauty around me. Only then was I free to love my child with out resentment or reserve.

This doesn't mean I'll never feel angry about it, or resentful, or self-pitying. It REALLY doesn't mean it is all sun shine and roses along the way. This is a hard journey. I am subject to relapse.

But as long as I am saying "Here I am, Lord, your servant, Acceptance with Joy, ready to accept what you allow in my life, and believe you will transform it," as long as I am saying that, resentment can not get a foothold. And that, my friends, is freedom. Not that I may do what I want when I want. But that ugly things, like resentment, can not get hold of me or chain me down. I am free.

1 comment:

  1. Another way to think of the out of home respite is to view it as part of a preventative maintenance package. You might not feel resentment now but you are doing a number of things already to keep that in check. This is just another option which at least deserves some consideration. We were able to meet another family that took care of our daughter on a number of occasions. They were "life savers" for us....we were very lucky to have them in our lives when we needed them most.

    Susan.

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