Time to admit it. Something has been shifting here at The Crunchy and the Smooth.
I think this blog is becoming less about the inspiring, against-all-odds journey of my special needs son and more about the blundering journey of his mother as she gets a clue regarding this whole disability thing.
It's hard for me to look back on some of the posts I wrote after Heath's birth and during his infancy. Though I've always celebrated Heath's fundamental perfection (at least in every moment when I was capable of being fully present), it's also true that I fogged up the atmosphere with a lot of fear of what he would face and my ability to guide him; denial that any of this was even happening; and wishful thinking that some magical cure or healer would come along as I worked through monumental resistance to his diagnosis at 20 months of age. Especially in the period leading up to the fateful appointment, when we knew what was coming but didn't want to, I was seized with terror for Heath and grief that I held down with all my strength, and that burst out in nightmares and behind-closed-doors sobbing fits. My baby, my baby. Why him? Etc.
A year on, and I'm a little embarrassed at how hard it was for me to accept. While we have been getting comfortable with the CP drill, figuring out effective therapies and celebrating Heath's determination and physical milestones, he's been having the time of his life. I, on the other hand, have been undergoing major rehab where my perspective is concerned.
To make this short and simple, I don't feel heartbroken anymore that Heath has a CP diagnosis. Speaking only for myself, I don't see it as a tragedy, as something to be cured or wiped out, but as a fact of nature, a peculiar thread in the tapestry of reproduction, an interesting glitch in the matrix. Due to the incredibly common incidence of oxygen deprivation to the fetus or newborn, as many as 1 in 400 children may have some degree of CP. That figure is pretty constant across cultures. Though medical error can be implicated in some of these injuries, most are a mystery that is not easy to solve.
Looking at disability broadly, it affects 9 out of 50 people.
So there you go. Disability happens. A lot.
Suffering can be defined as "resistance to what is." Resisting my pain and fear made it worse. Resisting the fact of disability made it worse.
Surrendering to the unknown, to our loss of control, and to my intuition that, in the grand scheme, things might just be profoundly OK, turned the volume way down on the suffering.
Over the past couple of years, several people have spontaneously advised me that I must grieve for my "imagined child," for the non-disabled child of my dreams. Again, speaking only as one special-needs parent among millions, I must say that while I struggled with the fact that Heath would face obstacles, he was never a lesser version of himself to me. For whatever reason, I never had a visual of my idealized offspring, e.g., sprinting through a field of daisies. Heath has always been more glorious to me than any child out of the pages of Parents magazine -- seriously, folks. Not because he is extra inspiring due to his special needs. But because of who he is: sensitive, curious, awed by his discoveries, loving, exuberant, hilarious -- stop me now!
His sweet mouth, big ears, long legs, heavenly eyes and pillowy cheeks.
How he dances, bobbing his head and waving one arm in the air. The way he crawls, with his head on the ground like a fifth wheel. The way he gets two inches taller when he's laughing as hard as he can. How he wields a pen with painstaking care, announcing, "I'm drawing a butterfly" over a page of chicken scratch.
No "imagined child" could top it.
Most of the time, people are unfazed by Heath's little differences. Almost always, their curious questions or quizzical looks are friendly and well-meaning. But occasionally their comments belie an innocent and incorrect assumption that our lives are pitiful, diminished, reduced. That we must be nothing less than heroic to get through it. That it is nigh unto a miracle that I could enjoy my child so. It's easy to feel a bit misunderstood, if not aggravated.
But if it's taken me this long to relax and broaden my vision, how can I expect those with zero disability experience to drop their anxiety and get a clue? Most of us learn about disability from the idiocracies of the media and the schoolyard, where being different is rarely a good thing. So how do we know what to say?
A friend with special needs kids once said to me: "It's not my girls that are the problem, it's the world."
I think I'm finally welcoming myself to a different world. One where it's hugely relieving, yet oddly isolating, to realize that while disability can be a pain in the ass, it is not the end of the world. And it doesn't define anyone -- not remotely.
Throughout the first part of Heath's life, I had two ways of seeing. One pair of specs showed me his perfection, his child soul, trailing clouds of glory, as it were. The other pair scanned for pathology. It fed the traumatized part of my brain that was reeling from his near-death, labeling "issues," juggling prognoses and prescribing all manner of therapies, just like the jargon-filled medical reports that now burst out of a gigantic three-ring binder in my office.
Now Peanut and I know more. We've surrendered to the current and, Hey! It's not so bad. We have hit our stride with effective therapies that make sense. We've learned to take prognoses and predictions with a heaping spoonful of salt.
Now, instead of two pairs of glasses, it feels like I've got a pair of those seamless bifocals. The larger portion of the lens sees Heath just like any other kid; the little part at the bottom allows me to focus when needed on shepherding his physical development and helping him reach his goals. Not "fixing" broken parts. Not labeling. Not catastrophizing. Not predicting.
It's embarrassing to think that someday Heath will learn how I bumbled and am still bumbling along the path with him. Through grace alone and no brains on my part, I am just beginning to glimpse what it's like to observe the overculture from the other side of this fence; how crazy and anxious "normality" can appear to ordinary people living with disability.
Perhaps the experience of disability can even give certain folks an outsider perspective that is more evolved.
In any case, many of us are headed there eventually. The disabled are the world's largest minority group, and the only one we can join at any time. Disability might even be . . . normal.
I only know a little about all this. Heath's challenges are relatively minor. Still, it's easy to get exasperated with a world that worries so much and so pointlessly about sameness. I try to maintain a good attitude and I hope Heath will too.
It must be said that I'm eternally grateful to the generations of people with disabilities before us who got uppity and paved the way for greater understanding, respect and equality. Despite the ubiquity of mindless "retard" and "short-bus" humor, our culture is still more enlightened and embracing of differences that it was 20, 50, 100 years ago. Just look at these t-shirts! What Helen Keller wouldn't have given for one of these, hmm?
In other news, I'm excited to be heading to Great Falls this Sunday to interview a mother in her nineties who raised her son with CP in a small town long ago, when things were quite a bit different. I'm extremely grateful for the opportunity and am sure she will have rich wisdom to share about all they learned on their journey.
Shirt images courtesy of Zazzle.