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!





Thursday, September 23, 2010

Tuning Fork

I was very happy that Joel as able to get a pic line in today. I don't know how to spell it, but that is how you say it. A pick line is a better alternative to an IV line, if you are thinking long term. And two weeks of IV antibiotics is long term enough for me, so I was very glad that Joel was completely co-operative and actually made the job easy for the pic line team.

Now that we have the pic line in, we don't need to be constantly connected to a saline drip. The pic line will not close down the way an IV can/will over time, so we can be disconnected most of the day and we will only need to be in our room for meals or meds. In other words: Ronald McDonald Family Room, here we come! Tomorrow I'm bringing a patch of memory foam and a blanket and if Joel is feeling up to it, we will lie on the floor and play away in the children's play area or the family room. And go for a ride in the stroller. Aaaah. The freedom!

The other nice thing about the pic line is that they no longer have to poke him to get a blood sample. Most blood samples can be drawn from his pic line. That is so nice, because he looks like a pin cushion right now.

Plus the line is flexible so he can bend his arm! We don't have to worry that his vein's going to blow out and keep checking for a swollen hand. Can't wait to get that little hand free, actually. It's been plasticized for so long!


I think that Joel has given me a gift. I was thinking about this the other day. How having Joel part of my life has given me this internal "tuning fork." You know, like when you were in music class at school and the teacher struck that metal two pronged fork? And it vibrated and hummed at a certain pitch?


It's like when Joel came along, an internal tuning fork was struck with a note of sorrow, or sadness, or pain. And ever since, it has been humming inside of me, that note of sorrow. I feel it reverberating at all times, sometimes louder, stronger, sometimes quieter, softer. But it is always there. I suppose that doesn't seem like much of a gift, huh? And I admit, at first I wasn't that thankful about the continuous note of sadness vibrating there underneath every part of my life.

Well, it helps to know what a gift is for. And I have come to realize something. This note that is always thrumming in me is a gift that lets me hear the pitch of sadness or sorrow in someone else. It truly is a tuning fork. I listen to the note inside me, and as I go about my life, I hear that pitch in other people. It's like the fork inside of me starts reverberating harder, louder, in sympathy with the vibrations it picks up from other people. It's perfectly tuned to sadness, pain, and sorrow. It surprises me how often now I pick up this note, how many sad people there really are in the world.

Not that someone can't hide their feelings from me, or fool me at times with a cheery face. I'm not saying I'm Super-Sensitive Woman, or anything. I don't travel at the speed of light and bullet's don't bounce off of me. But I sure am a lot better at picking up the emotional vibrations of sadness. And my own instrument sings inside of me, at the note it hears from others.

Maybe that still doesn't sound like much of a gift. But it is. It's not a super power, but it is a good thing, this ability. It helps me not feel so alone, I suppose. It gives me a feeling of purpose, because I get a chance to love on someone else who is hurting. It just is a good thing.

I think I have said this before, in fact, I know I have, but I'm going to say it again. I'm not afraid of sadness. I'm not afraid of sorrow. There are feelings that I fear. I fear what I will do or say in anger, of the holes I could make in other people, of the way I could rip something precious and not be able to fix it. I fear depression. I fear the way it can paralyze you and the apathy that can rob you of purpose or meaning. I fear self-pity. I fear the way it wraps you up in a long winding cocoon of cotton batting, the way you can see and feel nothing that is not me, me, me. These things I have a healthy fear of, for the way they can swallow you up and take over your life.

But I'm not afraid of sorrow or sadness, though they are not much fun, I admit. Sorrow is a strange element. You can feel sad and happy at the same time. Example: the graduation of your youngest child. Sorrow will form a bond with joy. You can laugh and cry at the same time.

Not so with anger, resentment, self-pity. They will not bond with happiness. You will not feel peace and anger at the same time. If you manage to feel joy and self-pity at the same moment, you will find that the self-pity has so twisted the the joy that it is actually sickening. The fierce exultation you feel that you "really have it that bad" will turn your stomach. You can not feel both resentment and contentment at the same time. At least, I have never been able to manage these feats.

I have felt sorrow and peace though. A calm assurance through it all, that all will be well, while tears flowed. I have laughed and cried at a memory so precious that my heart breaks. I have even felt content while mourning a loss, though that one is, I think, the hardest to do. But I have felt content with how good things are with my sweet boy, even when mourning the loss of eyesight, or mobility.

When wounds are fresh, I admit, they are so sharp they press out all other feelings. Strong pain is over whelming, and I know I shall be overwhelmed, completely overwhelmed one day. Pain will drowned out all other voices, it will be all I can see. One long, pounding dissonance sounding in my heart.

But it will not remain this way forever. In time, it will lessen. It will fade into sorrow. And other feelings will grow up in between. Peace. Contentment. Happiness. Joy. And of course, love. Even the sharpest of pains, I think, can not drowned that one out.

The note of sadness struck inside of me will harmonize with these emotions. And I will be able, thanks to Joel, to hear the song of sadness in other people. I will be able to sing along with them. And even sad songs are beautiful, and no one should have to sing alone.

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