“When I was pregnant, I tried to make a SuperBaby. I did not realize I was doing this. I believed I’d long ago shed the theory that a body could be made perfect. “
I know I play the must-read card more than once or twice a month, but I mean it. It perhaps hits me in ways it won’t hit others without similar experiences. But I think it will educate us all on those assumptions about value, about pain and suffering, that we don’t even know we have.
“After thirty-six hours of labor, the last five of which can best be described as an apocalypse at the very base of me, I pushed my baby out and into the warm waters of a hospital tub. My midwife dangled a slippery, bloody thing above me. Without my glasses my SuperBaby looked like a bean-shaped blur.
“What a little peanut!” the midwife cried. And that was the kindest thing any medical professional would say about my newborn’s body.”
As long term readers know, two of our grandchildren had traumatic births and NICU stays with much fear and anxiety. Their diagnoses were neither of them as dire as initially projected, but neither youngster is ever, I think, going to be precisely at a place where we don’t have secret worries about what the future holds for them. We wonder that for all of our loved ones, naturally, but with those two the questions have more of an edge, for different reasons.
I have also shared how stunned I was to realize that my biggest fear, the constant ache in my heart in the first hours was that *my* babies- adult women who loved their families and loved their own babies as much as I loved my own- be spared suffering. It was even more ironic because some of the suffering I wanted them spared is a life that their father and I actually *chose* when we adopted a child with multiple disabilities including quite severe cognitive delays. And I wouldn’t call what we ‘endure’ suffering. There are days it is extremely inconvenient and frustrating. There are times when I sit and sulk to myself over some limitations, or the fact for, the game of refusing to pull up her pants never gets old. There are, occasionally, worse days than that. But I do not tolerate somebody else’s misplaced pity for this child.
The doctor told me to try to nurse my infant. I held her seven-pound body to my chest as she thrashed, eventually getting her mouth around my silicon-encased nipple. She latched, and I felt her limbs relax. She sucked. The doctor and nurses turned to the television. I felt the heat of my girl against my body, felt the slipperiness made from sweat between us. I did not see what the doctor and nurses saw, which was breast milk traveling safely down my daughter’s esophagus and not into her airway.
“Looks good!” the young doctor said cheerily.
As we drove through Cincinnati that day, I marveled at the people along the sidewalk, amazed at their ability to walk and swallow at the same time, to live and thrive and not die by way of their own spit.
Not choking on your own spit, making teeth with the full complement of calcium, learning to speak, walking, moving the tongue and teeth and lips together to chew, the muscles in the throat to swallow properly, these are miracles we all do every day. The intricate, complex weaving together of bones, muscle, sinew, brain, and all those neurons and cells between and around, revolving, communicating, producing what the body needs, cleaning away what it doesn’t without us ever knowing a thing about it, these are causes for wonder- as are the hugs, kisses, and joys of a child whose body and brain are not communicating well, not growing ‘normally.’ But do we really believe that? Really?
“This response to disability is so pronounced in our culture that Princeton ethicist Peter Singer can still keep his job when he argues that children born with disabilities can ethically be killed before a certain age. Even babies with hemophilia. Why? Because, he says, they suffer and cause suffering: [T]he total amount of happiness will be greater if the disabled infant is killed.
Whoever got the idea that we could have pleasure without pain? –Pema Chödrön, When Things Fall Apart”
Could Singer keep his job and not be ostracized from decent society if he said those things about black, brown, or yellow babies? About babies with a gene, if such a thing existed, for gayness? Would it seem worse to you if he did base those statements on race or sexual preference or identity rather than disability?
Is it always easy, being the parent of a child with a disability, especially a cognitive disability? No, of course it is not. It’s not always easy being the parent of a ‘normal’ child somebody will want to say, but that is its own kind of frustration, statements that mean to be kind but actually diminish, because it is not the same, not even close. It’s very different. It’s not Holland when you meant to go to France different, either. It’s more of a ‘you meant to go to France, but the plane crashed but at least you all survived and now you have to figure out where you are and how to keep on surviving’ kind of difference. Which is not to say it’s impossible and not worth it.
The plane crash there, by the way, is not the child, it is your plans that crashed, your hopes and dreams. You will have to make different ones, and this is not always easy.
But it will be…. well. Click through and read the link. It’s a must read.