Parenting and Death: What I Fear Most about Being a Parent

Death in the wrong order

Image by Ulrike Mai from Pixabay

Parenting brings such joy sometimes the euphoria makes you want to explode into a million sparkles. Other times, though, the pain’s so great you’d like the whole world to collapse into a dark hole.

You suffer for your child. I’m not talking about him not fulfilling your dreams, not even the basic dream for them to be “normal”. My oldest son’s developmental disability, for instance, caused me untold pain.

He didn’t mind — I mean, not more than you’d mind being hopeless at backgammon or cross-country skiing. My pain stemmed from my own hang-ups and conviction that a life of purpose and satisfaction was extremely unlikely for a person with autism and low IQ.

Was I ever wrong! Diego, it turns out, is the person I know with the clearest purpose: to love fully (along with knowing everybody’s birthday and acquiring every single version of all Disney movies ever made).

In any event, the pain gradually led me to question my assumptions, face my bullshit, accept what is, and celebrate my amazing boy, autism and all.

All told, the pain enlightened me.

Is parental pain and suffering always enlightening though?

Hell no. Parenting involves the worst suffering for another person I have experienced.

Sure, I was sad and worried when my father was intubated and in an induced coma for weeks after a nearly fatal car accident.

But I felt like I was drowning in a swirling vortex of thick oil when my son Andres suffered a brain injury three years ago. I nearly couldn’t breathe on the way to the hospital.

I also mourned with Andres when a breakup nearly pulverized his heart.

And don’t expect the pain and suffering to diminish as your kids grow into adults and — perhaps — have their own kids. My mom once said to me she suffers double when my kids suffer. She aches for (1) her grandchild, and, (2) for me suffering over my child. Still, I do want grandkids! Go figure.

Yeah, your children will experience loss, disease and heartbreak. And you’ll suffer with them.

But that’s not the worst suffering one can imagine. Death is. Yes, death. Yours and theirs.

I don’t fear death per se, but my kids suffering because I died. I dread it so much I’ve told them — too many times probably — that if I suddenly die, I want them to know don’t mind. Yeah, they can grieve for a little while. After that, they must smile when they think of me.

Your dying, however, is nothing compared to the opposite: your child dying before you, especially if the death is sudden and unexpected. It happens, even if we almost believe it cannot possibly happen.

That is, until you read about the famous hedge fund manager’s son who recently died in a car crash at the age of 42. Or about a fellow writer’s son who passed away unexpectedly. Then you think about parents you know who’ve lived through this nearly inconceivable loss.

And your heart goes out to them. And you think about your children. And your heart feels like it’s being wrung by The Hulk.

And you know, you know the magnitude of your love for your children can both crush and enlighten.

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Why 27 Could Be Your Most Epic Birthday

Or your 32nd or 81st – if you’re at all like my autistic son

Young man smiling
The day before the big 27

Have you noticed I’ve been absent lately? Not replying to emails, texts, WhatsApps and phone calls? Always rushed?

Well, it’s because my son’s 27th birthday consumed me for a while there.

I attribute Diego’s fixation on birthdays (and Disney, dates, movies, animals, countries…) to his autism — but who knows right?

The runup to this particular birthday started 364 days ago, on January 14, 2020 to be exact, the day after Diego’s 26th birthday.

“I’m already 26,” Diego would comment now and then at first. Soon though, his thoughts turned to the next big one: 27.

“I can’t believe I’m gonna be 27 in January 2021!” he’d say, not only in December (the month before his birthday) but also in March and April, even though he was closer to his 26th than 27th. Other comments included, “Isa’s turning 27 in February and I’ll be 27 in January 2021,” and “Lole got married in January 2001 and I’ll be 27 in January 2021.”

Soon enough, Diego began delineating the specifics of the occasion: “I want to have trivia and karaoke for my birthday. And pizza and tacos.”

Inevitably, though, at some point COVID had him worried, “Can I have trivia and karaoke for my birthday?”

“Well, sure,” we’d say back in May and June —  when January felt distant and without considering the possibility the pandemic would be raging six months down the road.

It didn’t escape Diego that folks started having all manner of Zoom celebrations. Around November, he shifted gears and started to talk about having a Zoom karaoke/ trivia for his birthday, with tacos and pizza.

The whole thing came together around two weeks before the big day.

The day before

The day before his birthday, we had tacos with Pati, Diego’s beloved caretaker.

As on the ensuing two days, Happy Birthday was sung (in Spanish on this first day of the festivities):

The day of

The day of, Diego had his regular Wednesday Zoom get-together with friends, organized by two school teachers because they are awesomely generous people who enjoy and get adults with developmental disabilities.

After the Zoom, there was pizza, followed by cake with friends and relatives — some in-person, some remote.

The evening culminated with a showing of video clips and messages from friends and family. All were deeply appreciated, a few also unexpected (nod, wink and blown kiss to Jenn P, Liz, Ana & Jim).

The day after

The day after, there was karaoke in honor of Diego’s birthday during his regular Thursday Zoom with friends — this one organized by the kindest staff from a local agency serving our community.

It’s been two days since we wrapped up the big 27 and I can’t think of a way to properly thank people for the good wishes sent to Diego. When gratitude is infinite, how do you do that? There’s no way, so I’ve settled for a simple THANK YOU” from the bottom of our hearts.

There is, dear friends, a great deal of generosity, kindness and love in this world, even if most of what we see and hear through every type of media is the evil that competes with it.

Diego, and so many other people who are loving and vulnerable like him, attract and bring out the tender side of human nature. That’s one of their huge contributions to the world.

Yeah, there’s a price to pay. Diego’s birthday was just two days ago and I know it won’t be long before he starts talking about the big 28 and I need to start planning. All. Over. Again.

Even Hollywood celebrities were invited to Diego’s birthday:

You’re Invited to My Autistic Son’s 27th Virtual Birthday Party

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