One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child
When we got the diagnosis of Phelan-McDermid Syndrome for my son, we were shocked. Our hearts sank, the mourning period began, and we realized that every expectation we had for our son was gone. As if overnight, all I could see was a never-ending list of therapies, doctors’ appointments, paperwork, and realizing it would never end. It felt defeating as a horrible battle between my brain and my heart began. So overcome with grief, I could not see clearly at
My son has a rare genetic disorder called Phelan-McDermid Syndrome and he doesn’t even know it. He is as happy as … well, honestly, he is the happiest kid I know. He falls at least 30 times a day, and he just picks himself back up none the wiser. He is 4 years old and can’t use words. He LOVES food, and he can’t chew, at least not well. This is not typical. My son will never grow to be
