Tuesday, May 6, 2014

As long as it's healthy. But what if it's not?

Six months into our pregnancy with Henry, after our bombshell diagnosis, Lou and I would make regular treks up to Park Ridge to see the Maternal-Fetal Medicine specialist, who kept us abreast on how the baby was doing in-utero. Since I'm ridiculously extroverted and I adore small talk, I started chatting up the receptionist as we were filling out some paperwork, post-appointment (Lou, his usual introvert self, was probably silently willing me to stop talking). At this point, we had already been told by two separate doctors that Henry would be totally paralyzed from the waist down.

We started talking about her kids -- three girls! -- and I asked her if she preferred girls, or if she might try for a boy. We both quickly agreed that sex wasn't really that important -- boy or girl, they were blessings.

"Oh, I like girls, but it doesn't matter to me!" she exclaimed. "You know, as long as they're healthy and running around!"



I felt it, and Lou felt it, simultaneously -- that hot knife of grief in the belly. I think he actually winced. I laughed, bewildered, and said something like, "LOL I KNOW RIGHT? HAHAHA OTHERWISE IT WOULD BE AWFUL, WOULDN'T IT, IF THEY COULDN'T WALK???" and then slumped back to the waiting room with my paperwork.

Later, on the ride home, Lou bristled. "She works for a maternal-fetal specialist," he grumbled. "What was she thinking? Healthy and running around? What the hell?"

That phrase has haunted me, ever since we found out that our child would be born with a birth defect. As long as it's healthy! People chirp at you, when you talk about finding out the gender. Boy? Doesn't matter! Girl? Who gives a shit! Nothing else matters but perfect health! And once you discover that your kid isn't healthy, it almost feels like a threat.

Because what if it's not healthy?

What then?

That phrase terrifies me. Because we're talking about our children -- an arrangement that's supposed to be unconditional -- and as long as they're healthy! is alarmingly conditional. Everyone's happy for a new baby and congratulations are in order -- but only under certain criteria. Right? And if baby doesn't meet that criteria, well, all bets are off. All the congratulations vanish. Your support system bottoms out from under you. People start whispering. Doctors start talking about going in another direction. Changing the course of the pregnancy. Disrupting the pregnancy. Termination. Because, clearly, if your child isn't picture-perfect, a SWIFT DEATH is preferable.

CLEARLY.
It's not wrong to want a healthy baby, don't get me wrong. Nobody prefers a medically fragile baby. Nobody wants to see her child suffer. So we wish for health. We make ominous, defensive, vague statements. Everything will be okay -- unless it's not! 

Let's retire that phrase. Shall we?

It's time to stop putting health on a pedestal.

Is health important? Uh, yeah, duh. Is it the summit of our human experience? Is it the sole quality off of which we should determine the worth of our children? No.

We need to move past this fatalistic attitude we have that says a life with a disability is tragic and hopeless. We need to get over the idea that a handicapped baby is better off dead. We've had handicapped presidents, for God's sake. We've had handicapped olympic medalists. One of the most sought-after motivational speakers on the planet has neither arms nor legs, and I'll bet you a hundred bucks he's smarter and more physically active than I amFor the love of God, one of the most poetic and well-written books in existence was written by a man who could only blink his left eye.

And when we say as long as it's healthy!, we're negating all the unlimited potential we have as human beings. We don't need to be "healthy" to be heroic. And we shouldn't need to be able-bodied to be considered human beings.

And when we say as long as it's healthy!, we're telling parents that our support as a society is conditional. Have a healthy baby, and you're golden. Come back from your ultrasound with a special needs diagnosis, and we'll need to start discussing your options.





Come on, society. We're better than that.

9 comments:

  1. Well said! (Or, I guess well written would be more appropriate!)

    My daughter was diagnosed with Trisomy 18 and we were offered the option to terminate because she was deemed "medically incompatible with life". It was hard carrying a baby knowing that she most likely would die shortly after birth but I considered it a privilege and the 6 days we had with her were beautiful.

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    1. my cousin's daughter had a baby born with this that they didn't even tell us, the rest of the family, that she was even expecting; I lived away and my parents had gotten to the point of not being able to go see my aunt and uncle but even if they had they would hardly have seen her but even if they had they still wouldn't have told them about the baby but even if they had by that point they wouldn't have understood so I only found out when doing some family research looking over the family cemetery on the internet - still not sure who put it there, need to check - and realizing there weren't just the usual old graves of ancestors but a new one; well, had been a couple of years by then and my mom had passed away so when saw who it was I called my aunt to find out and get the story and found out mom was actually already about to have another child but, with mom gone and everything that had happened to dad since then he had not remembered to tell anything about any of this and it turned out that she herself was dying of cancer but just waiting for this new child to be born, which, yes, they were glad was healthy; however, also glad to learn that even though she knew that her first baby was diagnosed with this before he was born, she opted to continue to carry him but enjoyed the few hours she had with him

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  2. Perfectly written! A phrase I have long cringed at when I've heard it!

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  3. this is a beautifully written post. Congratulations on ALL your children, they are such a blessing.

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  4. Thank you for sharing your experience! I think it is laughable that we live in a society that wants to "ban bossy," but we are fine constantly repeating and reinforcing statements that make our children nothing more than accessories or pets. If a dog or cat needs a $3000 surgery and you only make $20,000 a year, you "consider your options.". We are talking about human beings... beautiful, tiny people in their own right no matter their sex, health, skin color, or level of development! Wonderful post. God bless you!

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  5. My youngest brother was diagnosed with severe congenital scoliosis in the womb. My mom switched OBs after her first one told her that she was probably imagining feeling him kick, as he was likely paralyzed. My little brother was born healthy and played every sport there is while growing up, and had the surgery he was slated for as a toddler when he was a grown man. Doctors are not infallible, and their opinions are important, but still opinion.

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  6. I know you wrote this a while ago but I just read it. Thanks so much for articulating this. I have become more and more uncomfortable with that expression people say so often. We've had several extreme preemies and one child with down syndrome and severe heart defects in my extended family. So that has sensitized me to your thoughts too. Btw, all those mentioned are doing very well and are now in their twenties or late teens.

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  7. And also, I think welcoming these babies is becoming a true sign of catholic's faith, a vivid opportunity for us to stand out for God's love in this culture. Just like big families used to be associated with Catholics.

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