Inside the Book

PREFACE: The Group I Didn’t Sign Up For

“I hated feeling like he was “missing” out on his youth. What mother wants her child to be in school—not daycare, school—at the age of three? Probably all mothers feel something similar when their children go off to kindergarten, but this wasn’t kindergarten, and William was no five-year-old. But this needed to be done, for his sake. Early intervention is key.”

Chapter 3: Grief, Support, and the Big Picture

Seth Says…

“I’m not saying it’s easy or that the sorrow automatically goes away, because it doesn’t. It will always pain me to think that my son might not ever want to go to see the Texas Longhorns play a football game, or that he might never be able to sit still and be attentive enough to watch Star Wars for the first time. It flat out rips my heart out. But I love my boy. I’m proud of my son. No, he might not be something that I would have chosen, but he’s mine and will always be my boy and my pride and joy. I crave for my expectations to be fulfilled, but some of them might never be. And as soon as I accepted that, as soon as I told myself to get over it, I noticed a difference in my relationship with him.”

Chapter 8: Insurance Companies and What They Don’t Want You to Know

“We certainly fought our insurance battles. We were denied many, many times—too many to even count. Every time I called to check in about coverage and the lack thereof, I had to speak to a different person; I was never given an extension line. You see, that is exactly what they don’t want you to have. It’s quite ingenious, really. Every time I called, I had to speak to someone who didn’t know my situation, and therefore I had to repeat the whole story. Naturally, the story got longer and longer every time I called. It was beyond frustrating, and going through that process affected me in ways in which I can’t even describe. But I somehow managed to stick with it, and every time I spoke to a different representative, I wrote it down. Sometimes they were not polite; this kept me going, though, and helped to build a case—a good one.”

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