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..


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!

Saturday, April 16, 2011

My Reverse Bucket List

Yup. The last few days have been very difficult emotionally. I have just been missing Joel so very much. And there isn't too much I can say about that, really, that wouldn't likely get fairly boring for you, fairly quickly. So, I will just say, please keep the encouragement and prayers coming. `````````````````````````````````````````````````````````````````` And then, instead of boring you with writing "I miss Joel" a hundred and two different ways, I'm going to try and cheer up a bit, by writing a "bucket list blog." Bucket lists are pretty in, eh? And somewhat cool? ````````````````````````````````````````````````````````````````` Only, of course, I never have made a bucket list. I really couldn't come up with that many things that I'd like to do before I die, and that I'd be willing to work towards doing. I mean, I'd love to travel to quite a few places. If I won a free package. But not if I have to work really hard to save up the money for years in order to do it. Ya know? Some would say this reflects my unambitious natures. Others less kind would say I'm lazy. ````````````````````````````````````````````````````````````````````` I'd just say that I haven't found many "bucket list-worthy" things that I'd really like to do. Either they are a) too boring, or b) too easy, or c) things "everyone" has done. And mostly all of the above. ``````````````````````````````````````````````````````````````````````` Of course, you know I'm going to say this, right? The only truly bucket list worthy thing I can think of, is live my whole life under God's direction. I hope if you are one of my atheist friends you are not groaning now. ``````````````````````````````````````````````````````````````````````` Anyhoooooooooo... I have gone on enough in this preface. Time to get to my reverse bucket list. It's a reverse bucket list, because these are all things that are one or all of the following: a) unplanned by me, b) not something I WANTED to be involved in c) probably not something anyone else would thing was a good thing. ``````````````````````````````````````````````````````````````````````` It's not a list of things that I wanted to do before I die. It's a list of things that it appears God wanted me to do or experience before I die. And while many of the things on the list might appear a lot less fun then say, skydiving or rafting down the Grand Canyon, or whatever, I have to say that each one of them, I'm thankful for. ```````````````````````````````````````````````````````````````````````` Looking back, I can only say that I am happy with my life. It seems to me that it has neither been boring, nor uneventful, though by many standards it might be considered so. It's the life God has given me, and I LIKE IT. ````````````````````````````````````````````````````````````````````````` So here it goes. My Reverse Bucket List. ````````````````````````````````````````````````````````````````````````` 1. Be a foster sister. This was an awesome and life changing experience. ````````````````````````````````````````````````````````````````````````` 2. Go to a Bible college for three years. And no, I didn't learn ANYTHING that helped me with a career. But yes, I did learn so much that helped me with life. ````````````````````````````````````````````````````````````````````````` 3. Live for a year in the resort town of Banff. I got to go hiking and climb mountains. I got to live with an "eclectic" group of young adults in a staff accommodation know as the "Rat's Nest." (don't ask) At one point, the apartment I lived in was known as "The House of God." (thanks to one of my atheist friends) This year led to the following listing: ````````````````````````````````````````````````````````````````````````` 4. I got to save some one's life. Yes. I really did. I don't know what God did with and for the person after that, but I got a chance to save some one's life. It doesn't sound too heroic though, when you hear what I really did. I didn't risk my life or anything. Still, it required me to do something which was quite scary for me at the time. It required that I interfere in another person's life, even though they screamed and swore at me to leave them alone through a locked door. Even though they would not look at me or speak to me the entire car ride to the hospital. But afterwards, after they had pumped her stomach and she really had taken a life threatening dose of medications, afterwards she thanked me. She was very grateful. And I am awed that God gave me the chance to do it. ````````````````````````````````````````````````````````````````````` 5. I got to quit a job because policies changed, and in order to make sales, they wanted me to lie to customers. At the time this was frightening and intimidating. It was also an experience I'm so grateful I had. One of the best things I have ever done. Almost everything you have can be taken away. Health, money, jobs, loved ones, it's a long list. But one thing that can never be taken from you is your integrity. I think that makes it priceless. Something to think about, before you sell it cheaply. (by the way, not saying I'm perfect here. This is just an example of when I did it right.) ``````````````````````````````````````````````````````````````````````````` 6. I got to work on a reserve up north. For three years, I was on a reserve so isolated that you could only fly in for about 9 months of the year. I won't relate the whole story. This is already quite long. I'll just say, it was not planned, it happened very quickly (within about a month I went from "never going to do that" to "I'm landing at the 'airport'") and it was one of the best things I've ever done. My favorite part was getting to help lead a youth group, and giving the "God Talk" each week. ```````````````````````````````````````````````````````````````````````````` 7. I got to ride in an ambulance. ```````````````````````````````````````````````````````````````````````````` 8. I got to see inside the neonatal ICU for several days. ```````````````````````````````````````````````````````````````````````````` 9. I got to see a spinal tap, an MRI, an EEG, a CAT scan, the "surgery process," hearing tests, an ENT scope, photos of my child's retinas... have I missed anything? ```````````````````````````````````````````````````````````````````````````` 10. Oh, yeah, I got to be part of a "family conference," the kind where you hear the BAD news. ```````````````````````````````````````````````````````````````````````````` 11. I was privileged to get to know many, many tough and compassionate parents fighting in the trenches of childhood disability and terminal illness. ````````````````````````````````````````````````````````````````````````````` 13. I lived with a severely special needs child. ```````````````````````````````````````````````````````````````````````````` 14. I journeyed with that child through his life, and dying. ````````````````````````````````````````````````````````````````````````````` 15. I got to be Joel's mommy. Wow. `````````````````````````````````````````````````````````````` What else can I say. There is less and less explanation as I go, because it is harder and harder to explain what this sort of "bucket list" experience has given to me. Well, in part I have been explaining it to you here for over a year now. And there are pieces of this bucket list experience that even I have not yet discovered. `````````````````````````````````````````````````````````````````````````````` This life was never boring. I'd like to think that these experiences have been used by God to shape my character in ways that even hiking the Himalayas, or travelling around the world could not. But there is still much work to be done there. In any case, I feel like it's been an eventful life so far. ``````````````````````````````````````````````````````````````````````````````` And as I look over the list (which I have actually shortened, ;) ) of both great and small, I can only say that every single thing that God put on the list of things for me to do before I die, every single one of those things was worthwhile. I have no regrets, at this point in my life. May it be always so. And thank you God, for Your "Bucket List."

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