Three Little Engines: Stockings

Friday, December 19, 2008

Stockings

I realized we didn't have stockings for the boys. Previous years we haven't had them because we were either in moving or newborn chaos. Aidan was young enough he didn't miss them. And still is, but I wanted to get them started this year. There are no stockings in the stores here that would be even remotely interesting to two little boys. So I purchased cheap velvet stockings and a package of vehicle buttons. Super easy sewing. As you know, Aidan loves trains, so it's obvious his is the green one. I was a little worried about just choosing cars for Jacen, but as you can see, it turned out just fine. :) They aren't gorgeous, but the boys like them and that's what's important.

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.