Three Little Engines: Thanksgiving

Wednesday, November 23, 2011

Thanksgiving

We are grateful for countless people and things that influence our lives for the better.

I will miss things that are very much in my heart, my brain just doesn't always keep up.
But here goes anyway:

Our family, both immediate and extended
Our friends and neighbors
The gospel of Jesus Christ
Knowledge of an eternal plan so we don't lose hope
A living prophet and apostles
A home
Food and medicine
Water
Cars that actually move
Heat
A/C and water misters
Good doctors
Caring therapists
Income

Happy Thanksgiving!
(And Mom, I promise I will get some pics taken to post.:)

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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.