This is so very true ... the endurance that it takes to have a disabled child is something I never knew was in my character. After choosing a career that was well-known for death-marches, that's the closest analogy I can offer (this crowd). Unlike a death-march, you never grow to hate the process: sometimes you grit your teeth just to take that next step, but your heart demands you continue.
After reading your story, I realize I walked a much easier path - my son was born with trisomy-21 (Down Syndrome) and it was easily diagnosed (though not so easily accepted by us parents). It turned out he had several more genetic disorders, but as each was identified, it was (more easily) dealt with.
I can't even imagine going through his first five years gathering questions but receiving no answers. We have two children older than our disabled son, and when people asked me what I wanted them to be when they grew up, I was always quick to answer "happy". You've given so much (both for Betrand and the others you've gathered together) that I don't want to take anything away from your amazing journey. I do want to give you what I can here - a simple blessing. May God bless you and your family so that you always find strength in him and in each other, and may your eyes be quick to see those small joys and victories so many people miss in their hectic lives.
Thanks so much for sharing both the original story and the follow-up!
EDIT:
There's so much to say! I'll keep it brief though.
I should have noted that growing up in a household with a disabled child has had a profound impact on my other three children. My older two are adults now (and Sam just turned 18) but from a young age they had empathy and sympathy that far exceeded what most adults feel. It's actually shaped their character in a tremendously good way.
Well said! I find it interesting you also observed your other children showing/developing much greater empathetically.
I am the father of a little boy who had Zellwegers syndrome and passed away at 7 months. He has an older sister (she was 2yrs at his birth) who is perfectly healthy, and we have found her comprehension emotionally is unparalleled amongst other kids her age. We also now have since adopted (new born), and our newest child doesn't seem to have that same emotional intelligence (shes also about 3yrs old now).
So at least in my limited sample, they do seem to grow emotionally stronger when a sibling is challeneged/special needs. I'm just not sure how or why that is.
If you had told me when my son was born that we'd have to discover a disease as just the first (small) step toward saving him, we would have crumbled.
We weren't ready for what had to be done.
But, parenting a child with a rare disease changes you in ways you can't imagine.
I've seen it again and again it in the thousands of rare disease parents we've met over the years.
A slow-motion grieving process gives way to a visceral, evolutionary response: whatever it takes, save the child.
You can drive a truckload of bad news right over these parents.
They get up, dust themselves off and keep walking.
You stop thinking about the future. Entirely.
You start thinking about what you can do today and right now.
You force yourself to take the first small step.
Then another, and another.
Day to day, it never seems like you're making progress.
But, I've seen rare disease parents end up achieving the impossible by just focusing on one small step toward the impossible at at time.
I realize we've come far, but I know we have a long way to go.
So, on to the next step.