It's been said that parents aren't given a manual when their children are born. Of course that's true.
It's doubly true for children with specialized "molds"! Kids with disabilities, or challenges, as they're known in our home, are on paths that are even less likely to intersect with the paths of others, developmentally-speaking.
This can leave parents and other caregivers perpetually "going by feel". There is no other way.
We can't reinvent the wheel. There is no wheel.
Very recently, I was informed that we would need to step into the abyss yet again, as we were introduced to the term WDR26-Syndrome.
In effect, this was already familiar. Only the name was new. We are fortunate, as there are unlikely to be more surprises attached to the name. Still, it's daunting in that this condition is so rare very little is known about it.
Of course, my mind goes to "But what if..." What if, indeed? You roll, with the non-existent wheel!
Something I found interesting happened because of our relatively late diagnosis. Most of the people represented in the WDR26-related discussion group I joined are young children. Our family member is an adult. I had been a member of this group for less that half an hour when I was being peppered with questions from parents trying to get an idea of what the future might hold for their children. I wish I could have been more help.
I also realize that our lives could be more challenging than they are. We've been blessed in this regard. We've managed to escape the heaviest manifestations of the diagnoses that have touched us to this point.
For that, I am thankful.