When you do not have a SuperBaby

This is a must read.

“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.

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9 Comments

  1. Cindy
    Posted April 12, 2017 at 12:15 am | Permalink

    Singer is a monster. Lying here wondering if my contractions are going to be real labor this time. Might not be the best time for thinking about what might go wrong. I’ll read it anyway, because I trust you and you told me to. 😉

    • Headmistress
      Posted April 12, 2017 at 4:33 am | Permalink

      That’s a lot of responsibility. 😛

  2. Cindy
    Posted April 12, 2017 at 12:50 am | Permalink

    Yes, that was very good. Bless that poor woman, what a toxic idea her parents gave her. Makes me glad I was raised by uneducated hillbillies. Granted, my grandmother does think that tying knots in things will somehow cause the umbilical cord to tie itself in knots or going up and down stairs will cause the baby to fall out spontaneously. We have our own silliness, I reckon.

    Would have been nice if the writer had told the rest of what Jesus said, though. Made it look like he was the one blaming the blind man for his affliction. I pray someday this mama finds that these things are “so that God will be glorified”. Also, I’m having *something* going on every five minutes. You’d think a woman having her eighth baby would be a little more certain whether it was labor or not, wouldn’t you? But I am not. I never am.

    • Headmistress
      Posted April 12, 2017 at 4:33 am | Permalink

      Yes. It’s also weird that she said it was as old as the Bible, when it’s really older, if we’re talking about the bit she quoted. Blaming others for imperfections and disasters is as old as human, I think. I did have a sweet young Christian mama tell me, years ago, if I just had more faith, the Cherub would be normal.

      I’ll be thinking about you and praying for good labor and glorify God throughout it all from beginning to end.

      • Cindy
        Posted April 12, 2017 at 6:46 am | Permalink

        Thank you, ma’am! I got some sleep and woke up to the same thing, so I think today might be the day!

  3. Tori
    Posted April 12, 2017 at 8:43 am | Permalink

    Thank you for sharing this article. I don’t have any experience with disability, but I have health issues that have driven me to the point where (if I’m honest) I am desperate to find a cause. I am a Christian, but lately I’ve been drawn to “medical literature” that leans a lot toward what the author was taught as a child – i.e. this condition is happening because I don’t assert myself – because I can’t seem to find a way to “fix” it, and it must. be. fixed. Anyway – it’s given me a new insight on the perils of my own thinking, and I thank you.

  4. 6 arrows
    Posted April 12, 2017 at 6:27 pm | Permalink

    From this mom of a special-needs child, thank you.

    On a quiet side note, real-name alert in your 2-paragraph 4:33 response.

  5. Lisa Beth W.
    Posted April 12, 2017 at 10:54 pm | Permalink

    That really was a must read. So beautiful…yet incomplete–as Cindy said, I pray that someday she may find the real reason for these things.

  6. Posted April 14, 2017 at 2:59 pm | Permalink

    I clicked through to your link about your family and grandson’s birth nearly two years ago. <3 Missed it at the time. So much in what you wrote moved me. . .

    Especially the parent/child/grandchild. . . adult child/adult mother. . . all those relationships intertwining. It still feels so new to me to have adult children (none are married yet), and I get a glimpse of changes ahead and get glimpses of understanding in my own relationship with my mother.

    Thank you for sharing your heart through the years.

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