Tuesday I finished reading Buzz Bissinger’s Father’s Day: A Journey into the Mind and Heart of My Extraordinary Son. It’s a memoir about Buzz Bissinger’s relationship with his developmentally disabled son, how that relationship is stretched and strengthened by a cross country road trip he undertakes with this son in 2007.
I kinda read it at arm’s length. Wanting to. Finding it hard. Bissinger drops a lot of F Bombs. He is impatient, quick to anger. The potential of this same parent in me is there, but I’m not into commiseration to lead to justification. Even so, I kept picking up the book (or actually my phone where it was loaded), feeling it was important somehow as I too have a developmentally disabled son, feeling a parents who’s further down the road (ha ha) would have much to teach me, wondering how the road trip landscape of the book, mirroring so nicely with our stuck-in-the-car summer, would resonate with my own experiences even at this moment.
Early in the book I highlighted the words, “His mind is not simple. It is limited to a degree that profoundly frustrates me, but it is inexplicably wondrous at certain moments.” I am all about the wondrous moments. I was all about reading a book where a father finds new wondrous moments. Those moments were there (Pulling the ripcord! The framed picture Zach pulled out the Beverly Hills hotel), but this seemed more to be a book about a father who struggled because the wondrous moments weren’t enough.
I get that. I’m not in such a stage of denial with my own son’s disabilities that I don’t get that and respect that. But, when in the acknowledgements he said his editor would often have to tell him to “grow the hell up.” I nodded fervently. I guess I’m just hoping that by the time Toby is Zach’s age I will have already long since processed and accepted what the author seems to be new at accepting.
I was born privileged, but I was not born upper east coast privileged. There is a whole level of parental expectation (ivy league schools, number of zeros in their eventual paychecks) that never existed for me going into the whole parent thing. I also have to give this author a little more grace in that, even though my pregnancy was a surprise, I knew with 50% certainty what I was getting myself into. (Toby has Fragile X. I passed this on to him with my own premutated fragile X chromosome, instead of my healthy, sturdy typical-child-creating X chromosome.) Bissinger had premature twin boys and watched with horror when they were born struggling to cling to life, the second son born three minutes later, struggling more significantly as that three extra minutes without air forever changed the nature and development of his brain. Bissinger had every reason to believe his twin’s birth day would be a celebration, instead it was just the first in many harrowing hospital days. A beginning that haunted his path into fatherhood.
But he never seems to come to terms with the fact that his son will never achieve success as he defines it, will never experience the mile markers our society establishes as the necessary rights of passage for a happy, fulfilling life. But I go at this from a Christian perspective, one that defines success differently. And I am constantly forcing myself to reevaluate those societal markers that easily have nothing to do with God’s best for one’s life. Because of the ideologies by which I live, I have to believe that Toby and Zach are fearfully and wonderfully made, a marvelous work, a delight to the most high God. These beliefs have set a different tone for my entry into motherhood.
Bissinger acknowledges, “Which does raise the question of why it takes brain damage to be kind and honest and true instead of insecure and behind-the-back vindictive as so many of us are.” He acknowledges this yes, but he is insecure and vindictive (Seriously? Unable to enjoy a Hollywood party because he was so envious of the success of others? Unable to read the bestseller list for the same reason. “Grow the hell up!”), so he is a hard tour guide for the journey. I haven’t had his on-the-floor-naked-in-a-strange-hotel-rocking-at-the-weight-of-his-perceived-failures experiences, (I’m 34 though, plenty of time left for that.) so again, much respect…. But ultimately we’re going about our journey’s in such a vastly different way that this wasn’t quite the book, for me, I hoped it would be.
I have to add here that on the same day I finished this book, I received news that a dear friend gave birth to her third child, a long-hoped-for son, but her day of joy was marred by visually apparent problems with his limbs. A geneticist was called in, a diagnosis of SMA, Spinal Muscular Atrophy, made. This, a quick search told me, is a terminal diagnosis. Our friend is asking us all to pray that the Lord take him quickly so he doesn't have to be in pain. To ask that as the prayer for her newborn son is unfathomable.
We are not guaranteed or entitled to a certain kind of life. Our kids are not guaranteed or entitled to a certain kind of life. As parents that won’t stop us from pouring every resource we have into the best possible life we can perceive for our children, but we still can’t predict their journey. We can only bare witness to the wondrous moments.