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!





Sunday, April 10, 2011

Reserving the Right to Change my..Everything???

What can I even say about the last week....? So much to say, so few words that hit the target... ````````````````````````````````````````````````````````````````` Well, there is one thing I can warn you about. I have decided for the sake of honesty and directness and my own sanity to warn you about something. And that is that I'm going to be reserving the right to change my mind, and I'm going to be pretty liberal with that privilege. ```````````````````````````````````````````````````````````````````` Here is the thing. I don't know what the expectations are for me. And I don't know if I can or should meet them anyway. This is sort of a new country for me. Not grief. I have been through grief before, a long time ago. But that was a different circumstance, and doesn't really inform this one when it comes to expectations. ````````````````````````````````````````````````````````````````````` What I mean is, there are expectations on me every day. I'm expected to feed my family. And I agree to that expectation. I'm expected to flush the toilet, and I should and do. I'm expected to wear clothes and not go out in underwear and a trench coat. Check and my whole-hearted endorsement of that one. ````````````````````````````````````````````````````````````````````` I knew the expectations before, and most of them I thought were valid and agreed to meet them. Some of them I even put on myself. And if exceptions were needed, I knew how to negotiate them with myself or with others in a satisfactory and "fair" way. ````````````````````````````````````````````````````````````````````` Now, though, I sort of feel that all the previous expectations of how I would think or act are sort of not too appropriate. I guess that in some ways this had been the case ever since diagnosis. But Joel's very presence sort of was proof of that. Obviously I couldn't just go out like before, or promise to make a dozen cookies for Sunday School every week, or whatever sort of thing. `````````````````````````````````````````````````````````````````````` But now Joel is gone. I am at a loss. What sort of behavior do people expect from me? What do I expect from myself? I honestly don't know. Sometimes my reactions moment to moment surprise me. I might even be in the middle of something, and realize, hey, I'm not sure I'm up for this right now. `````````````````````````````````````````````````````````````````````` If I don't burst into tears this week, does that mean I'm not allowed to do it next week either? If I go to a party next week, does that mean now I have to go to every one's party, every time? If I burst into tears seeing healthy, happy kids one day, will everyone start watching like a hawk every time I'm around them? `````````````````````````````````````````````````````````````````````` So, I'm reserving the right to change my mind and the expectations. I really don't know that anything about how I feel or cope is "stable" right now. Hmmm, maybe bad choice of word, "stable." I'm STABLE. I'm just in a fluctuating state. Called "grief." `````````````````````````````````````````````````````````````````````` Which means that some days I might be able to go out. I might seem inappropriately happy, or gleeful. Because I might just really need to get out and forget the sadness. Please don't judge me and think I've forgotten Joel, or that I'm suppressing my feelings, or that I'm in a manic state. `````````````````````````````````````````````````````````````````````` And then some days I might need to stay home. I might need to wear my pjs. I might need someone to take Caeden out, so I can sit with greasy hair and watch videos of Joel over and over again while the pile of used Kleenex grows every larger. Please don't think I'm "wallowing" in self-pity, or that I'm clinically depressed. `````````````````````````````````````````````````````````````````````` Some days the house might look surprisingly good. And some days it might look like trolls live here. `````````````````````````````````````````````````````````````````````` Some times I might answer the phone. I might sound "chipper." Or you might just get the answering machine. You likely won't hear me answer in a wobbly voice. I'll just let the machine get it. `````````````````````````````````````````````````````````````````````` I might be up for volunteering and helping out with stuff. You might be worried about that...? I don't know. I hope you'll let me try and do things if I feel like I would like too. And sometimes you might ask for help with something simple, but I might say maybe another time. I hope you won't think I'm "shirking" then. `````````````````````````````````````````````````````````````````````` Please don't feel hurt if I go visit someone one day, but when you ask, I just want to stay home. It won't be because I don't love you. It's just because. `````````````````````````````````````````````````````````````````````` Even though I have grieved before, everything about this situation is new. And sometimes I admit I feel a little angry or resentful if people expect me to act a certain way or show a certain attitude or emotion. This part is under construction, and under God's grace I'm gaining peace with it. ````````````````````````````````````````````````````````````````````` Still, it would hurt me to think either of two ways. I would hurt me to think that people thought I was handling this "surprisingly well." And it would hurt me to think that people thought I was handling this "badly." Just think I'm handling it with God's help, and leave it at that. ``````````````````````````````````````````````````````````````````````` Because if I'm handling it well, I feel like there is something wrong with how much I love Joel or how much I miss him. It's not rational, I know. But that is how it feels. ``````````````````````````````````````````````````````````````````````` And if I'm handling it poorly, well, that doesn't feel so great either. I know other people are counting on me and I can't afford to be a basket case. ```````````````````````````````````````````````````````````````````````` So here is what I will tell you: Expect the UNEXPECTED. And I'm telling myself that too, since I've already surprised myself numerous times. ```````````````````````````````````````````````````````````````````````` Other than that, I'm keeping it this simple: Every day I'm waking up and trying to read my Bible and talk to God. And then I'm leaving the expectations to Him. I'm just telling Him that I want to be able to do whatever He wants me to do. I'd like to be able to do even just one positive thing each day, but on His strength and under His direction. I'll let Him decide how that would look, and if I can handle more or not. ````````````````````````````````````````````````````````````````````````` He's the best boss. His expectations are the only ones I need to meet and He always gives me the strength to meet them. It feels so good and peaceful to know how much He loves me, no matter if my hair is combed or not. And because of that, what HE brings me to do in the day is peaceful and good too. ````````````````````````````````````````````````````````````````````````` Thanks to all my good friends for their continued understanding and support. You are amazing. And super more praise and thankfulness to God, for giving me His peace and strength, and loving me even in my failings.

5 comments:

  1. AMEN to that, Karen. I agree with you, 100%!!!

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  2. Do what you need to do for you. Don't let others judgements (or what you may imagine their judgements to be) dictate how you should feel. You are who you are and it is what it is and poo-poo to those that think you are grieving the wrong way.

    As always, thinking of you and your family...

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  3. If everyone who interacts with you on a regular basis was in one of the classes I'm taking in college right now, they wouldn't even second guess any of your actions. People need to expect your mood to be fluctuating, and that no, you aren't clinically depressed or manic depressive because of that. And yes, you may have set certain expectations for yourself, but in this case, where you may at times need more help than you usually do, others should be able to make exceptions. That's just the way a family functions. You have lost someone you dearly love, and it will take a while to adjust. Your whole family mobile has been thrown off, and that balance will not be normal for a while. Take it from a college student who's just trying to make sense of what she's learning, or don't, but trust me, this is normal.

    Brittani Shank
    Kansas

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  4. Wholeheartedly agreeing: one day at a time.

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  5. Here's to checking one's expectations at the door, and allowing each other to just "be"!

    ReplyDelete