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, March 13, 2011

Babbling

When it comes to Joel, I think I'm not really ready or in the mood to discuss it all today. So, I think I will save that for another day.

Instead, what I will blather on about is about how I've been getting healthier, and I feel great about that. I'm finally losing some weight, for the first time since at least before Joel, I have finally crossed the 170 lb line of defeat! That feels great, although I still can't really see it much in my clothes or anything. I know. Patience, right? It's just hard to be patient, when I have wanted to lose some weight for so long now.

And I feel in better shape, too. Thank you, my Wii fit friend! I can see a difference. Running for 10 minutes now actually feels good, even 20 minutes doesn't feel that bad. (yeah, no worries about a marathon or anything, this is just jogging in one place!)

Then there is the best piece of equipment we've ever gotten for Joel. I am just loving it! Ok, how's this for a strange or weird, or maybe even sad, piece of info. We finally realized that we would save Palliative Care money if we just went ahead and rented an oxygen concentrator. Now I'm kicking myself for not doing that sooner! An O2 concentrator is a fancy machine that somehow takes room air inside, and yup, you guessed it, CONCENTRATES the O2 before blowing it out into some tubing.

I don't have to worry about the tanks running out all of a sudden due to an unexpected increase in Joel's needs. I don't have to worry about a tank running out in the middle of the night and having to get up to change it. I can give Joel as much O2 as I think is good for him with no worries. It's great!

And then just today I made another discovery. The concentrator is a HUGE and HEAVY piece of equipment. No way it was going down the stairs. So when I took Joel downstairs I still took a spare tank, or just only took him down if his sats were good. And then today, I was looking the whole set up over. And I got this thought... Hey, fifty feet of tubing is PRETTY LONG! And I realized I could just run the tubing downstairs all the way to the couch to cuddle Joel there, even if he needed O2! And no lugging O2 tanks up or down, either! Why didn't I figure that out right away???

I'm sharing these little details with you, because I'm just tired, today, of all the emotions that have been going on with Joel for the past 2 weeks. It's really tiring. I'm tired of crying, worrying, thinking, remembering, longing, doubting, evaluating... all that stuff. So this upbeat blog is just a break from it. Whew. I needed that.

And yeah, I'm keeping my verse close to me. Here's my favorite version. "In returning (to God) and in rest (in Him), you will be saved. Your strength will come by being quiet (in His arms) and by trusting (Him)." Parenthesis mine. ;)

1 comment:

  1. Friend,

    What wonderful discoveries you made today(especially the 50ft of tubing! reminded me of my boys O2 days). You are such a wonderful mother Karen, continue to trust in HIM, he will never let go of you. I'm a witness to that. Kisses to all of you xoxoxo. -Caro

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