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, October 29, 2010

Be well.

I can't sleep. It was "date night" tonight, and Steve and I stopped for Starbucks on the way home. Now it is almost one in the morning and I can't sleep. Well, time to let a blog out of my head. A topic I think about on and off, but even more so lately, now that I have so many great friends supporting me.

I walk a fine line. On one hand, I don't want to say: "I'm alright. I'll be ok, and I don't need you. I can handle everything. I'm tough, I can make it through this..." etc, etc, etc. You get the picture. It would be 1. a lie, 2. pride goes before a fall, 3. it would make people who care feel unneeded and useless, and see #1.

On the other hand, I sure don't want to bring others down. I mean, I don't want to be like the drowning person who clutched on to others until they sink too. I don't want to suck the life out of anyone as I draw on their empathy and kindness, until they feel depressed and weak, and wish desperately to get free of me.

It is hard to walk this line. I mean, a natural human reaction is I want others to understand me. I want them to know a bit of what I go through. I want them to feel for me, and cut me some slack if at times I appear at the door at 2pm in my pj's. I don't want them to think that losing my child is "easy" (like they ever would, but you know).

Yet I don't want them to be completely immersed in my world or my pain. They have enough of their own to cope with.

What I want them to do is be with me "in the moment" and then I want them to cry or feel sad or understand or hug me. And then I want them to go home and forget as much of that sadness as they can. Yes. I do. I will say it again. I really, truly want you to take advantage of the fact that you DON'T have to be me. You CAN get away from this world. And you need to.

Of course, I don't want you to TOTALLY forget about me. Of course, I want you to remember to check in on me. But I don't want you to feel sad, or depressed or worried. You need to have the joy, contentment or peace that comes to you. Don't waste that. You can help me by crying WITH me. But you can't do anything for me by being worried or sad for me from a distance. So when you are in your world, I want you to try to leave the sadness behind.

I do. Leave it behind, I mean. I can't really escape from it. But I have long been pretty good at "escapism." And that is sometimes NOT a good thing. But sometimes it is. I try and take my grief "in chunks." I try and distract myself at times. I practice the art of escapism, and I do it on purpose at times.

If you have physical pain, then distraction is a great tool. It can really help, and there are no bad side effects to it. Women in labour have done this for thousands of years.

If you have emotional pain, you can't distract yourself forever without paying a price. Emotional pain will out, or else you will end up in a permanent "numbed" state. But distraction, or escape, is a useful tool for allowing yourself to take your pain in "smaller bites." You feel the amount of pain you can handle, then you distract yourself, you escape, until you feel a bit better and can "take on" a bit more of your grief.

So I read a lot of books. And I do watch TV, guilty pleasure. I play my video games. And I hang out with friends. Sometimes I am even watching TV or reading a book or playing a video game while Joel is cuddled in my arms and crying. That might sound bad, but I am protecting my own sanity. I know pretty well at this point, at what stage in his crying I can comfort and distract him. There are times when nothing I can do will calm him one iota. Sometimes it almost seems my efforts make it worse. At this point I hold him so that he knows he is loved and he is not alone. And then, as much as I can (yes, it is hard sometimes, hence DISTRACTION is necessary) I tune out his emotions and I read a book. I try not to let his emotional "wavelength" overwrite mine. I watch TV or I play a silly video game. And when he is better enough that I can tell from his cries that he is ready for it, I start to sing or talk to him, and at the right time, this seems to soothe him.

I do this escaping and distracting so that there is something left to give him when I can help him. So that I'm able to play with him when he feels better. Or so I can comfort him when he's ready. And also, I do it because there is no point in two people being utterly miserable. My suffering can not help him. My support can. But not my suffering. It is useless to him, though it sometimes has benefit to me.

And that is what I want those of you who are so very empathetic to do with me as well. As much as you are able. If I am crying and you can not console me, if I'm not ready for your words, if they only make me cry louder, then just keep me company, but tune out all the pain that you need too. When I'm ready for you to sing to me or cry with me or talk with me, then I will be so grateful for that support. You can immerse yourself in my sorrow for awhile when you are with me. But don't you dare stay there!

When you go home, take care of yourself. Shake off the sadness, people! Have a nice bubble bath. Watch a funny movie! Be silly. Do whatever will help you let go of sorrow.

Of course, if you love Joel too, you have your own right to mourn him as well. I appreciate people who love my boy ever so much. You are allowed to have your own sadness. I just don't want you to carry mine too much as well.

Remember, this is only pain. It is only pain. It can hurt me, but it can NOT harm me. I feel pain and sadness all the time. But so far I have been remarkably free from depression. I know it will get harder once Joel is gone. Even so, it is only pain. Once upon a time, I was going to write in here that this story doesn't have a happy ending. Maybe I even did write it somewhere. Or maybe I even then wrote it and qualified it. This story on my blog does not have a happy ending, because I will never get to write an ending. It's just going "to be continued." I'll be leaving it off in an unfortunate place, because I will be stopping at the point where it is still sad. Where there is still pain and lose. But it's not the end of the story.

All I can say is, if you want to get part two, if you want to see the happy ending, then you better plan to be in heaven. I promise it will be well, well worth it. For many reasons. The smallest of which will be so you get to see the amazing end to this journey we are on. And if you are not sure how to plan for heaven or make sure you are there, then I'd be more than happy to share that with you, just email me. And here's a hint, I'm going to tell you the answer is in Jesus' words in the Bible. I'm sure that comes as no surprise.

For now I'm going to say: Be well, my friends!!! Take the joy and contentment that God gives you and rejoice in it! Because the world will be a better place if you do.

1 comment:

  1. Ok...did you read my mind when you wrote this one? Very well put. Even though I can not sit and visit with you in person (like you said...maybe one day), know that the time I sit down here to read your blogs and to write to you ARE times that I am in your world and I am crying WITH you.

    Caring for a terminal child is so very tiring, exhausting, and simply just emotionally draining. And it is just those escapes that you speak of that keep us sane...recharge our batteries...so that we are able to hunker down once again and weather the storm. Nothing about what you are doing is easy...even loving Joel as you do is not easy. Not easy beacause you know that the more you love him the harder it will be to give him back to the Lord. The loving part is easy...the giving back is not and the pain and emptiness it will leave is a daily struggle we must endure.

    But...as I said before...I am crying WITH you just as I know that you have cried WITH me.

    Take care my friend.

    Tracy
    'Angel' Graham's Momma

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