Three Little Engines: Sealing

Monday, October 18, 2010

Sealing

We've been working towards this for almost 10 years. Last Friday, we were sealed as a family, in the Snowflake AZ LDS temple.

It was amazing.

The boys were absolutely angelic... of course. :) Well, once Jace got to be with me again... lol.

It was great to visit with my parents and my brother Matt's family.

We love them so much, and miss them terribly.

2 comments:

Grandpa Weber said...: I'm so glad you could share this with Mom and Dad. It's great that your 9+ year wait is over. I'm really happy that you're so happy. Best wishes from Lagos!; October 20, 2010 at 10:42 AM
Buzybugs pixie.blogspot.com said...: BEAUTIFUL temple, WoW... I have never seen this temple and it is amazing, I am sure it was a wonderful day for all of you.; November 2, 2010 at 9:43 AM

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.