Strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak.
I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does.
Strength has everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it.
As a special need mom, I’ve had experiences where I had to fight like an insane person to protect my child. I had to advocate for my son with the school districts, rude teachers, bus drivers and clueless strangers, let alone nurses and Doctors that did not know anything about EB at all but told me everything I was doing wrong.
As the years have moved on and EB has taken a toll on his body, just moving has become a source of great stress. That is sad for me, as a mom, to see.
My journey into motherhood has been so unique that very few precious moms I met along this rocky road can truly understand me, and I am not sure if I care a whole lot if people understand me anymore anyways. I just don’t want to be judged. I just want and need kindness. That is all.