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, December 26, 2010

Christmas

It was a wonderful Christmas here at the Smith home. We were all together and all (relatively) healthy. We read the Christmas story, we sang carols, we opened gifts and we ate. A lot. More than we should have.

The aftermath is evidence of a celebration, shredded wrapping paper, empty boxes, cups hidden in odd corners of the house, fridge full of leftovers, a few remaining dirty dishes still soaking in the sink, sticky candy cane stuck to the end table, a few Christmas decorations the only things left lying under the tree, and a full recycling box.

These physical mementos of a celebration will soon be cleared away. (well, EVENTUALLY, anyway). I hope that there are less ephemeral "mementos" still hidden carefully in my heart. Some of them are memories too be sure, and they are precious. Still, I find that the day itself went so quickly and was so filled up, I didn't spend the time I wished too, talking with my family. I think I see a New Year's resolution shaping up in these words: spend more time with my family.

Joel wasn't feeling the best. He spent most of the day snoozing in his playpen, in the "middle" of the excitement, but not directly part of it. There was nothing particularly "wrong" with him, he had just had a series of seizures in the morning. When this happens, he usually sleeps a lot for the rest of the day, and since that is good for him, I don't disturb him. It does make me a bit sad, when he is not participating in much. But mostly I was just profoundly happy to have him there, with us, sleeping in his crib.

What I really love best about Christmas isn't the boxes, packages or bows, to quote the Grinch. It is the promise. Christmas is a celebration of something that happened long, long ago. It is, for me, a celebration of something in the present, the celebration of the Man whose coming made it possible to become God's adopted daughter. A celebration of family, yes. A celebration of the event that placed me irrevocably in God's family too.

But it is also a celebration of the future. It is a reminder that the events that started at the beginning of time are not done yet. A sequel is coming. One day I'll be at Jesus' birthday party, and he will actually be there in person. Christmas reminds me of God's promises for the future, and when there is a terrible, horrible day looming up in ours, it brings me such peace and hope to remember that after that terrible, horrible day, there are still many promises left in the future, and all of them are wonderful.

And so I hope to carry a bit of this Christmas "memento" around in my heart. A ward against the evil of the days that are coming when Joel gets sick, and when Joel leaves us. I wish to hold fast to these promises, they are a light in dark places. May the meaning of Christmas be kept in my heart every day of the year.

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