Parenting During a Pandemic: The Distance Between a Laugh and a Scream is Awfully Short

I've spent too much time during this pandemic year diving into the well of sadness and fear that seems to have defined, well, so much of this year.  Whether it was early days, and my eldest being hospitalized two states away with COVID-induced pneumonia, or hoping my mother's intuition diagnosis of my younger son's illness and response was correct, it's been a year of lots of stuff, to say the least.

It's also been a year in which I've struggled to take our struggles to heart.  I've felt guilty feeling weighed down, knowing how much harder some other folks have it.  I'm always the one telling myself that no matter the challenges we face, we're not homeless, we're not hungry, we're not...fill in the blank.  I'm always the one expressing gratitude and trying to pay it forward, to give back in ways that help others.  Not because I'm a hero, but because it's the right thing to do.  I also happen to believe that everyone--and I do mean everyone--has the capacity to give in some meaningful way.  Alongside that, though, I also realize that  it's taken me the better part of a year (and decades before that of trying) to take seriously that struggle is not only the outward kind you see easily because it literally steps in front of you.

We live in what I thought, when we moved in, was a reasonably spacious apartment.  I spent a long time looking for it, since I just assumed that we'd be living with my disabled son for the duration, unless some fabulous, appropriate, other kind of living option bubbled up for him.  But then my daughter moved home to go to school locally.  Then school went remote.  Then my eldest came home after grad school.  So with five adults and two dogs living together full time, spacious started to feel more like a studio.  At least we had sunlight.

But in addition to our being five adults and two dogs, we're also autism, anxiety, epilepsy, panic disorder and ulcerative colitis.  So our home is a pretty crowded place.  Overwhelmingly so at times.  There are days when things are so ridiculous, that all you can do is laugh.  I hold onto those days for dear life.  Because there are those other days.  Those other days.  Like when my eldest tried to physically restrain his younger brother, because he thought my lost-in-this-world son would hurt me.  I pleaded with my eldest to let his brother go.  "He won't hurt me.  He might just squeeze me a little extra hard."  The restraining thing came, I think, not just from a protective impulse, but from my eldest having lived away from us (until this year), for the better part of a decade.  So our rhythms, routines, and struggles were not that familiar to him.  And there's never been a point to telling him how bad it can get at home.  It can't be described anyway.  You either live it, see it first hand, or you don't.

There was the other day, when I went to put something back under the sink in our bathroom and found an unopened bottle of epilepsy meds.  I was proud that I didn't run to my husband and scream, "Why the fuck are you hiding Noah's meds in our bathroom?!?!?!  Did you not see me panicking a couple of weeks ago because we were down to our last pills???!!"  This bottle dated from February, when I tried to get ahead of what I thought might be COVID-related medicine supply issues (thanks to my brother-in-law's heads up to us) by buying some extra meds outside of insurance.  And then my husband goes and hides them.  And the kicker is, I manage all of my son's medications and medical appointments, but my husband plays hide and seek with the pills and doesn't tell me.  WTF??!?!

Maybe that little medication thing doesn't sound like much, but add it to regular infusion visits to the local hospital, visits with his gastro doc, check-ins with the neurologist, and an occasional emergency meds behavioral episode, and it ain't easy.  And I need to learn to say, to embrace, and to BELIEVE it ain't easy, rather than always pointing to folks who have it harder.  

The real challenge is that our struggles are occurring behind closed doors (though occasionally out in the street, if truth be told, when a child is just having a time of it in real time, in ways I can't control, or stop).  But mostly indoors.  So I look like a normally adjusted adult when I leave our building, smile at the doorman and super, offer them a hearty good morning, and go on my way.  They have no way of knowing how bad the night before or the morning of might have been.  Then again, neither do friends or family members.  And even describing incidents doesn't really cut it.  The only person who really seems to get it in our family is my brother-in-law.  He's a physician, so that gives him some insight no one else in our family has.  Same goes for friends with challenging kids.  That's about it.  

So we soldier on, and when it's a good day, it's great.  And I mean really, really great.  And it doesn't take much around here.  Which is just a reminder of how hard things can get.  A day of just nothing going wrong is genuinely fabulous.  We skip over the little bumps, because we're so used to them.  And we celebrate victories that in other families would likely go unnoticed.  "Did you hear the phrase Noah used today?  I've never heard that before."  Or the fact that I won $100 off my eldest who bet me that he wouldn't pass the Bar exam (candy from a baby, that one, though he still hasn't paid up).  My daughter's been doing great work in school and over the summer, even though her job vanished, she knocked back two non-preferred but required classes (one in math, the other in logic).  In math, a subject that inspires fear, she found herself a very skilled (and cute!) tutor online, a guy in Texas who's getting a graduate degree in math.  The money we paid unfortunately went to replacing his car's windshield, but so life goes sometimes.

I have to admit that it sometimes hurts that so few people ever ask how I'm doing, but those who do are the ones who actually care about the answer.  And I'm long past caring about the pretenders who ask you how you are and literally or mentally walk away as you're answering.  Try giving someone an honest answer to that question and see how readily it proves the willed deafness of the person asking.  So I'll stick with my group of mixed nuts friends, the people whose lives go off the rails like mine does.  The people who have roofs over their heads, food in their stomachs, and the other accessories of modern life, but who cry themselves to sleep, tear at their hair, yell at their spouses, and not occasionally think of running away from home.  But who also hold onto laughter, when it comes, tighter maybe than we should.  Because we're the ones who know that the funniest people in the world are also the ones with broken hearts...