After Ren's talk with the Geneticist, next to Herlitz Junctional, Raquel seems to have the worst version of RDEB.
Not that it matters, in the way our lives will be. We know (I) it's going to be hell.
The level of hell, will only be in our ability to avoid issues and think through the rest with minimal trauma.
It's the difference in how Renata and I deal with this information I think is the hard part.
For Renata it's often the finality of knowing the hard facts and the depth of sadness that follows.
For me it's a word, a name and certainly doesn't change what we are doing and how Raquel fares on a day to day basis.
We know Raquel's condition is not going to get better.
Like I said yesterday, issues, marks and trouble only add with Raquel. There will be no subtraction.
I guess if there is a cure that isn't killing nearly half the kids that are trying it, then and only then will I get my hopes up.
It would be counter productive if I lose my focus and get blinded by the froth on a daydream.
Although I just have to get up once in a week long before the sun rises, take my canoe or kayak out and see something like this and the nerves are reset. Could be shattered in moments on returning home, but...