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, April 3, 2011

Get-away

Diane, thanks for the info about the blog. I tried putting some spacing in with html (which I admit I'm a big novice in), and at first the spaces appeared in the preview, but even though I saved it, they still didn't appear when I published the blog, and when I checked the html, for some reason they were gone! Again, so sorry all! ------------------------------------------------------------------------------------------------------------------------------------We are back from our little trip. It was such a beautiful gift from our church family, and I really think it was good for us. They were very generous, it was an all expenses paid two day get-away. It was very relaxing and it was good to get away from it all. No offense to all of you, but I think very few of you have much of an inkling of how hard it is to live with someone you love very much and watch them slowly deteriorate and die. ------------------------------------------------------------------------------------------------------------------Not to make you feel sorry for me, but to say that a little get away and rest was really appreciated. It has been hard, hard work the past years. -----------------------------------------------------------------------------------------------------While we were away, I shopped in a cute little knick knack shop. The sort of shop that I love to buy stuff in, full of cute little kitchen gadgets, pretty cards and stationary, Crabtree and Evelyn products, all that good stuff. ----------------------------------------------------------------------------------------------------------------------I bought a few fridge magnets. A ladybug, because I love ladybugs. A penguin, because Caeden loves penguins and they are cute. And a magnet that says "If it walks out of the fridge, just let it go." It seemed appropriate and also good advice. ---------------------------------------------------------------------------------------------------------------------------------------And I bought some pretty polished rocks. To put in a little drawstring bag. I've mentioned my favorite book before, an allegory called "Hinds' Feet on High Places." The heroine collects a small rock or pebble at every place she receives a promise from God or has a test. At one point near the end of her journey, she is tempted to throw them all away. They seem to have been worthless all along. But she keeps them anyway. Later on, she finds them transformed into beautiful and precious stones. -----------------------------------------------------------------------------------------------------------------------My rocks are already polished. I'm going to take my super-fine permanent. marker and write the reference for my favorite Bible promises, one on each. It will, sadly, make the rocks less eye-pleasing. But I have important things to remember with these stones. I'm going to put them in the drawstring pouch and then I'm going to put that in the very special box that Joel's respite worker gave me, with his name on it. I'm going to put that box beside my bed, where I will see it each night and each morning. Yes. ------------------------------------------------------------------------------------------------------------------------I'm also going to be looking for a good friend whose willing to go out shopping with me in the next week or two. I'm looking for a simple, but nice, wooden box. One approximately a cubic foot, but dimensions somewhat flexible. I'm going to put my best loved "Joel things" in that box. Only what will fit, and only as many as will fit in about a cubic foot. All the rest I will slowly give away or maybe, possibly put aside for another baby. But one cubic foot I shall allow myself to put those treasures. ---------------------------------------------------------------------------------------------------------------Then I will get that box out on birthdays, and holidays, and even just "Joel" days, and I will look through it. It's my "tear" box. A special thing between Joel, God and I.

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