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, July 16, 2010

Looking on the Dark Side

I got in to visit my dad today. Now that my mother-in-law is here and I have some extra respite hours, I hope to do that a bit more often. The timing is actually really good, because as my Dad recovers more, visits will be more important to help relieve boredom and keep up his spirits.

It is hard for me to visit, though. My Dad is still so very sick. It's surprisingly hard to see him like he is. The man who has always been around to help me now needs help with EVERYTHING. It hurts. Plus, he's been in so much pain lately. Something weird been happening with his joints, maybe some sort of arthritis or gout, no one seems to know for sure. But his joints are swelling up and painful. He grimaces and looks ready to cry just from having his bed adjusted. It makes me want to cry myself.

He was more himself today though. That was so relieving. He understood when I told him I'd bring him the first garden-grown & ripened tomatoes I had. It was so nice to get a response to what I said to him.

I'm still feeling hopeful about my dad, though recovery seems so agonizingly slow. One step forward, half a step back, sort of thing. But so far he remains clear of cancer and his digestive system seems to be healing up just fine.

A few weeks back, though, I really thought it was likely I'd be saying good-bye to my Dad soon. And with that I got a surprise.

I found out that I have NOT been depressed for the last two years. Seriously. I thought I was, because I'm so tired all the time. I was wrong.

Because a few weeks ago, I woke up and discovered that I was depressed, for real. I mean, I woke up actually depressed, and went "oh YEAH. THIS is what it feels like." Only the caps indicate more of a sigh than an emphasis.

And with that head on collision with the real thing, memories flooded back to me of a few times where I was depressed. I remembered what my old nemesis really is like.

With that came the realization that I have not been depressed in the last two years (other than maybe a bit when we first got our diagnosis). I have been very stressed out. I have been very sad. Sometimes frustrated. Sometimes discouraged. Angry, wistful, reflective, melancholy, wrenched with sorrow, panicked by inadequacy at times, frantic with powerlessness & protective instinct thwarted. Deep oceans of pain covered by a fragile peace. All of this and more.

But not depressed. Thank You God.

For depression is truly a formidable opponent. It saps you of strength and leaches the will to take any sort of action whatsoever out of you ounce by ounce.

I woke up in that horrible state of depression trickery. Ah, slow consciousness returning, feeling peaceful and rested and then, that Drop of Doom Fair Ride feeling. Your brain finally comes to that state of awareness of your life where it recoils as from a loathsome insect. Ugh. No. Not. This. Please. Tell me it is a dream, it's just a dream and it's really NOT THIS. But it is. And the bottom drops out of your stomach and out of your day and out of your life. Pleasant wake-ingness to this stone cold reality.

I'm sure most of you can feel this with me. It's that wake up in the morning and remember the day before you: lost your dog, lost your job, your boyfriend broke up with you, a fire burned down your house, you flunked out of school, you'll never walk again, your husband cheated, your best friend refuses to talk to you anymore, you or someone you love is terminally ill, you can't get pregnant, your child can not be cured - you see what I mean? I think we have all felt that feeling, no? The list could go on and on. The things that kick us in the stomach when we wake up in the morning.

Kick us in the stomach and make us ask "Why should I get up? I'll just get kicked again. And frankly, I can't bear the way the world looks from this vantage point."

I had that feeling as I woke up and thought that my Dad would likely die any day now. And my sweet little boy would one day give me the exact same thought on another morning like this one.

Shall I master the art of understatement and say it was "icky?"

It made me realize how fortunate I have been though. For I so am. I have actually NOT felt very depressed by this all. (ok, sure, maybe a little here and there. But not the REAL thing. The sort that goes on all day, day after day.) As I already said, lots of pain and all the other feelings that go with my life. But not really depressed. And it didn't last too long. Just a day or so, until my Dad seemed to start to recover.

It made me realize that I do have the gift of happiness. Most of the time, I learn to adjust to my life and be happy and peaceful about it all. Oh, sure, if you know me, you know I am a very up and down person. My highs tend to reach the sky and my lows are ever so tragic. But if you actually average out the extremes, I think I sit just above the median on the happy side. I am fortunate.

I also realized that depression is one day going to rear it's ugly head. It's just biding its' time, waiting for that perfect moment to strike, the moment when I lose someone I love dearly. That's not something to look forward to, is it? Scary stuff. Especially when I remembered how fierce an opponent it is.

It made me really think of my friends who have already lost children. Yikes. How do you guys do it?

So I'm going to try and "gear up" for the battle. Stay healthy. Stay as rested as possible. Soak up all the good & happy stuff that comes along without spoiling it with useless "if onlys." Keep my friends close.

And above all else, I'm going to try to get as close to God as possible. I'm going to try and wedge myself in. Like a limpet on a rock. Or a starfish. Those guys know how to hang on. And if I cling on to Him, maybe the waves of depression won't wash me out to sea. And you keep me in your prayers too. One day I might really, really need it.

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