Between Sainthood and Resentment is….Reality

When I was young and healthy and had no idea what it meant to be old or unhealthy – let alone young and unhealthy – I decided to become a nurse. I had no particular affinity for the sick, and probably could have gone as far as to say I disliked sick people, although I certainly hadn’t been exposed to enough of them for any length of time to even know for sure one way or the other. My guess is that they didn’t appeal to me, since my primary activities as I began my first clinical rotations in the hospital had the telltale depth of any other twenty year old girl’s interests. I overslept. I ate barbecue flavored Pringles for breakfast. I cut classes to buy 99 cent eyeliner. I felt superior because my little white uniform was always crisp and always garnered a lot of cheek-chucking by the old patients. Especially the old men. They loved to – what I didn’t know then was – patronize us with their quasi-respectful admiration.

​“Oh, you girls are the sweetest things.”

And we ate it up. What girl wouldn’t? It only took a bare minimum of flattery and indulgent deference to sweep under the rug that we stayed up for nights on end studying and crying. And crying. And studying. Come morning, no matter what, we walked in those patients’ rooms with our hair tightly pulled back, our faces fresh, and our backs not yet broken.

There was just no way to know any better, to know anything of what life really meant.

I met a lot of nurses like that once my son was born with severe dystonic cerebral palsy and more medical issues than I could count. From nurse I had instantly transformed into the generically humbling “mommy” that all the sick children’s mothers became, with only a few years of cocky and confident nursing practice to prepare me – the kind of nursing practice where my patients got better, and when they didn’t, it was because that was the way it was supposed to be. They were old. They had abused their bodies with alcohol, or drugs, or God-knows-what. My experiences had not yet conceptualized the randomness of fate as a precursor to infirmity. Further, that indiscriminate misfortune could befall the undeserving – even my own child – was beyond my scope of understanding. I had only been set up to accept the eye-for-an-eye standard, so I embarked on a trail of guilt pursuit, fueled by endless encounters with smug health care professionals behind whose caring smiles I recognized the very same self-righteous undercurrent I once possessed.

Surely, I was guilty of something. How else could this have happened?

Punishment for whatever transgressions may have precipitated my poor child’s miserable destiny became my job. I must have done something to cause it, and while I couldn’t pinpoint what it was, I was going to exhaust myself trying. I would become a saint. A very educated saint.

I schlepped to doctors’ appointments. I slept in hospital cribs, without showering for days, tangled in telemetry wires and oxygen tubing. I championed attempts to try every therapy. I read every book on cerebral palsy, each new study on evolving treatment modalities, and explored every possible option to help my son maximize whatever potential for brain regeneration was possible. I employed the same tireless efforts I had once used to get a 4.0 grade point average in college to now get one in special needs parenting. I prided myself on knowing exactly what to do at all times, just like the good nurse I had always been. Simultaneously, as luck would have it, I got to the bottom of precisely whose sins had caused my son’s brain damage – not mine, but the obstetrician’s. It turned out he had made mistakes during the delivery which caused the irreparable damage to my baby’s brain. Eureka.

And so my eye-for-an-eye mentality was back in business. There was someone to blame now. I focused all my anger and resentment on him, and spent most of my time muttering about karma and just desserts. Later, I even found out he had been diagnosed with advanced prostate cancer.

But, by that time, a different person, I didn’t rejoice.

I had finally come to terms with the fact that people get sick – even innocent children – and there is no rhyme or reason to it. While, of course, certain outcomes can be causally connected with past behavior, it isn’t always so – and, often times, there are no explanations whatsoever. This was one of those times. The inexplicable and arbitrary are more rule than exception. It isn’t our job to figure them out, but to just do the best we can with what we’ve been given. Do I wish our plane had landed in Italy and not Holland? Every single minute of every single day. But, like that well-worn poem says, Holland is where we are, and Holland is where we have to remain. And Holland is very beautiful.

My son, David, is the most perfect child, just as he is. He is perfect whether I am an expert on anoxic encephalopathy or not. Whether we have tried every new therapy with him or not. Whether he ever utters the word “mommy” or not. None of it matters. He is perfect and has purpose, in spite of me – not for me, and most definitely not because of me. His purpose and his journey are all his own, and I am lucky to have been given the chance to learn from him. To learn that not every question has an answer we can know. Now, when I come across those who still have yet to learn it’s only a matter of time before their turn on the merry-go-round of inexplicable randomness, I’m extra patient with their arrogance.

I’m not a saint. I get frustrated. I lose my patience. Many days, I wake up still very angry my child has been deprived of so many simple things for which others don’t even consider to be thankful. When other mothers of “regular” kids praise me for what I “do,” I’m uncomfortable with it and counter with the only answer I can think of: “Would you do any differently for your own child?” Why should anyone praise me for doing what is my job? This is what I signed up for when I became pregnant. There are no guarantees you will have a perfectly healthy child.

You have to do the best you can with what you’ve been given – even when it isn’t what you expected or hoped for. That’s what being a parent of a special needs child – of any child – is all about. In fact, that’s the reality of life. If you accept what you’ve been dealt and leave everyone you encounter in life better for having known you, then you’ve learned, at least, what your child was born knowing.