Yeah, it's more a matter of "this is what we chose because we felt that it was the best decision
as parents, and that alternatives were not something that we felt WE could live with."
Nobody knows, when they become parents, what their future holds. That's simply fact. So that is how we frame it.
It wasn't really a "choice;" we did
try for me to work for a time, but we had zero safe childcare, and placing my career over her safety was unacceptable. It felt morally repugnant to me.
I think that what we've emphasized to our DD is that this is not about "her" at all-- but about the VERY heavy responsibility that comes with being a parent. It can come with some deep sacrifices and choices that are pretty unthinkable until you've been there.
Many parents
are capable of having a career with a child. Some of those children are disabled. But nobody gets a guarantee that if they try hard enough, it will be possible. Not all careers and all disabilities are amenable to it; it requires respite care and reliable childcare, deep financial resources, fortuitous geographical location,
or extremely flexible employment-- or all of those things.
If she has her own children, that is a choice she will be walking into with her eyes wide open-- because her situation is about 85% genetic, at a guess (this is still being unraveled via research). The level of severity is the only real wild card. In her case, she turned out to be an outlier. We
thought that we understood what was possible there (since we both live with the same condition). We didn't have a clue how life-altering that diagnosis
could be until we were living it with our toddler, however. "Management" is more like living your life on the edge of disaster all the time, and scrambling to keep up.
So no, we didn't feel that varnishing this with something less than the truth was wise. She
may have to choose to walk away from a carefully constructed professional life if she chooses to have children. She should choose wisely and consider what matters to her.
I
have repeatedly told her that
I don't regret my decisions for an instant. If I could take away her disability, of course I would do that-- but for HER sake, because it makes her life so hard. Not for mine. I don't regret a thing, because it has made me the person that I am today, and I
like who I've become as a result of the experience-- I just wish that it didn't come with such a high cost
for her.It's a hard thing to put into words.
