Three Little Engines: If I were an Engine

Wednesday, March 17, 2010

If I were an Engine

Aidan now calls us by engine nick names. He is Sir Topham Hatt, of course. He has the pocket watch to prove it. Jace is Percy... I personally see the facial resemblance. Damon is James... because he has a "shiny new coat of paint..." he is new, that's for sure. I'm Henry. No explanation, but I guess it's that I hate the snow, the rain, the wind, blah blah blah. He never calls Daddy an engine name, so we asked him who Daddy is. He thought for a minute and declared, "a passenger." I guess he's just along for the ride! ;)

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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.