I think we can all admit that life is hard. Throw a kid or
two in the mix and that same hard life becomes even harder. Now, if one of those
kids happens to become disabled—well, that's by far the hardest.
For our family, our son Holton was severely hurt at
11 weeks old by someone my wife and I trusted dearly. This woman was our daughter's nanny for
almost two years before my wife gave birth to our son in October of 2014. We began
the process of transitioning the nanny to care for our son and by the end of my wife's
12-week maternal leave, we allowed her to watch Holt alone for the first time.
Within 30 minutes of leaving our home, this once-trusted caretaker cracked our
son's skull and smothered him for reasons we'll never understand.
Two months later, Holt was discharged from the hospital and we
were overwhelmed on every level. We assumed it was only a matter of time before
our son "snapped out of it." As the months slowly crawled by, so did our naiveté.
We finally realized that this wasn't some wound that a Band-Aid, a squirt of Neosporin,
and a few kisses would heal. No, this was something we'd be fighting for the
rest of our lives.
Holt was without oxygen for long enough that every part of
his brain suffered damage. Every damn part. Here we are, 14 months later, and
our son hasn't met any of his milestones, including head control, grabbing
things, sitting up, crawling or even sucking on a bottle. He takes a half
dozen meds daily through his feeding tube and endures an anti-seizure injection
straight into his thigh muscle twice a day—oh, and he's now blind, too.
Photograph by Eric Weingrad
Raising a handicapped child is like running in a marathon forever.
Yeah, so you could say my wife and I have our hands full but I
swear we aren't complaining. At least, not to you, we aren't. To each other,
yes, but to you? Not so much. We know better.
At first, my wife and I felt the pity and sorrow our friends
projected in our general direction whenever they saw us. It was a tilt of the
head, a closed-lip smile or a gentle purse of the brow as if to say, "I'm so
sorry for what you're going through." Everyone means well, but it kinda makes
me feel even worse. That is to say, I know our life is on the rocks but I would
love to pretend it isn't as much as humanly possible.
I distinctly remember feeling odd at a kid's birthday party
I took my daughter to while Holt was still in the hospital. I'm sure it was
part paranoia, but every time I turned around it felt like someone wanted to
hug me with their eyes. And that made me want to get the fuck out of there and
cry in a corner. I mean, how did we become THAT family?
As months went on, we never felt normal by any means but
rather things started to simply become our new norm. Mixing Holt's meds each
morning, afternoon and evening was no different than taking out the trash or
folding laundry—it's what we did. But as we progressed, the same thing couldn't
be said for everyone who surrounded us.
We noticed that no one complained to us anymore. Like, at
all. Usually my buddies will bitch to me about their job, their wife, their car
issues or even missing a game the night before because their kid was throwing a
tantrum. However, all of that stopped suddenly, as if some mutated virus wiped
out all of the complaining in the world.
Sometimes I'd break away from work to grab lunch with a
friend and they'd start to whine about something before screeching to a halt
and say, "But look who I'm complaining to? I'm sorry for bitching about
nothing. Obviously, things could be much worse, right?" Uh, I guess. Thank you
for reminding me my life is a fucking mess?
Here's the deal: Allow me to speak on behalf of every parent
of a handicapped child or children: Complain. Let us here what's bothering you
so we can stop thinking about what's bothering us for a few minutes. If we start
thinking we're the only ones with issues, well, that's not going to bode well
for our sanity.
So put on your flip-flops, some cheap sunglasses and let's
head to Bitchfest. Your screwed up life is the headlining act tonight, baby! I
want to see pyrotechnics, stage presence and, above all, showmanship.
Belt out how bad it sucked when your daughter crapped on
your brand-new sofa while you were potty training her without diapers. Hit me
with that ballad about the jerkface who rear-ended your new Beemer the minute
you drove it off the lot. Shred a gut-wrenching solo about why you're pissed
your work didn't give you the bonus you were expecting this year. I love all
your problems. They are your greatest hits and no one likes the band that
refuses to play their greatest hits. (I'm looking at you, Neil Young.)
If you complain to me about any of these things, I will
laugh. Not because you deserve someone taking a dump on your couch or
destroying your new ride but because life is funny. And when you chose not to
complain to me, you are stealing some of the few precious joyful moments I truly
crave right now. Your pain is my pleasure.
So, just know that I know that you know that I know my life is
a mess. It's at a two right now, when it should be a nine. I understand you
are scared of seeming insensitive to my family's current plight. I'm hip to the
game of "let's not seem too happy when the Weingrads come over tonight." I get
it, I really do.
But we're moving forward now, so you should too.
If you'd truly like to help out a family just like ours, that
is struggling every day to care for a child with a post-birth traumatic brain
injury, then please visit our nonprofit charity Holton's Heroes and donate
today. You can also follow our son's journey through my writing on Facebook at
The Incredible Holt – Road to Recovery.