It's the "other-ness" in parenting that leads to things like Welcome to Holland, which resonates so strongly with the parents of disabled children. There is a glass wall between us and "normal" and we're the only ones who seem to be aware that it exists.
There's that "other-ness" at work. Those things are simply not the same for families that work around those things, and they CANNOT be shared experiences with others without accommodations for the difference/disability being in the center of the planning.
Yes. You can tell people about what it is like to always have one leg in the hospital, to speak about brain surgery as routine, to take trips to the ER as all in the days work, to plan your days (and sometimes, nights) around a medical procedure that needs to be done every four hours. Only those who have been there can really understand.
On the other hand, you CAN talk about it, and you do get sympathy, and help, almost all of the time, even if there is no real understanding.
I cannot talk about the struggles with my HG+ child except for the very very few parents who have been there.
The other day, we were at an event in aid of the children's hospital, organized by a HG+ kid who had been a preemie at that hospitals NICU, which we had been invited to through the local gifted group. DH was hailed by a man who he needs to deal with in his professional capacity through his volunteer work, and who asked how come he was there. And DH started babbling about our oldest being a preemie, too.
It's a different kind of different,
