I'm at Hopeful Parents today, though I've had more hopeful days.
That Thing I Don't Talk About
I can trust you with this, right?
That Thing I Don't Talk About
I pull into the driveway and glance up to my porch. In front of the door sits a
big brown non-descript package. There could be ANYTHING in there. A surprise!
Each month I indulge my fancy and play the part of someone who does not already
know what she will find when she tears the packing tape off and unfolds the
flaps. I try my best to conjure the limitless expectations of Darren McGavin’s
character, Ralphie’s dad, in A Christmas Story as his “major award” is
delivered. It’s here, it’s here! Some days I even tap my fingertips across an
invisible word on the cardboard and slowly, profoundly emulate his wishful
interpretation of the letters, “fra GEE lay.” The irony is that though the box
doesn’t actually bear such a stamp, my forehead could easily read “fragile” at
such moments.
Upon my first kick-shove of the box into the front door, the game ends. For
I know what it is. It came last month and the month before. It’ll come next
month.
It is nothing so fantastic, light and burden-free as a leg-shaped lamp.
Sometimes I let it sit just inside the front door where I won’t often pass
it. I pretend that it’s too bulky for my short self to carry downstairs and
dispatch into its storage space with what’s left from the last box. Rare are
the times it doesn’t send me to such willful denial of its existence that I’m
rendered unable to spirit it away in the name of tidy, objective detail
management.
Today I let it sit.
This box changes nothing, adds nothing, promises nothing. It’s not a
surprise for my girls; it’s nothing for me or for my husband, our house or our
cars. It’s not full of gifts I’ve carefully picked out for others. In fact, we
have no choice at all in this. It’s delivered for the cognitive and
communicative differences, low muscle tone, sensory issues and motor processing
problems that conspire to make this box a requirement on a monthly basis.
Inside are purple-wrapped cubicle stacks from the medical supply company for
my 8 year old with Rubinstein-Taybi Syndrome. The customer “care” reps at the
company are sticklers about calling them incontinence products. The generic
looking logo on the package demurely refers to them as pull ups. But I call
them what they are: diapers.
Diapers have been in our lives for more than 12 years, with a brief respite
of about 18 months in there before my younger daughter was born. I have only 2
kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in
quantity, duration and effort. But from the very beginning she had a general
idea of when it would end.
It’s the fact that there is no clear path to the end that makes it daunting.
I have long ceased finding the act of doing the changing particularly
inconvenient when we are at home. It’s just part of everything now. But the
ways we have to consider her dignity, her privacy - who knows, who doesn’t
know, who might mention it around whom – that is what’s exhausting now. Energy
further evaporates when I inevitably wonder if we’ll still be managing these
things a decade from now, 2 decades, 4…
We grapple with the few scant invitations and social engagements she gets,
wondering how we can figure the logistics if she needs to be freshened. When we
visit other homes, I measure how long we’ll stay by whether the host is likely
to be able to discreetly handle my request for a plastic bag and to know where
the outdoor garbage receptacle is without asking too many questions. We size up
public restrooms, worrying about space, germs and location of waste bins.
Low rider pants are a bane when you have a child who employs a sensory
satisfying stance of a tripod - hands and feet near each other on the ground and
her derriere airborne. The slippage of her Levi’s partners with the impossibly
high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of
mystery.
You can’t chat about this with your family and friends. Even my friends
within the disability world, we guard our child’s dignity and our own fragile
case we keep some things in, and we keep quiet. I can’t bear to hear the
earnest suggestions of others, thinking I’d never considered the techniques used
with my older daughter, thinking perhaps the problem is that I have given up. I
haven’t. I believe in my heart of hearts that it will happen one day. Whether
that day is weeks, years or decades from now is the question. The blithe
statement mothers of preschoolers offer mothers of toddlers sends me to a place
I don’t like to spend too much time in. “Well, don’t worry, it’s not like
she’ll go off to college in diapers.” It’s possible. A kid could go off to
college in diapers. If that kid would be accommodated in college, that is.
There are worse things, yes. But it adds a daily layer of complication and
general hope-suck that compound the energy-devouring effort already put into
every single detail of this disability life.
This is just so incongruous with who she is, how clever she is, what a
social, complex, witty, inquisitive, powerful young lady she is. Whether we
want to admit it or not, knowing someone wears diapers whether as a result of
being very young, very old or very different, it simplifies that person in most
people’s eyes. It reduces them. Her dad, her sister and I are in constant
combat with this reduction of our limitless girl every single day.
There it all is, laid out. I cross my fingers for her dignity, that you who
know her and read this will protect it as you would her physical being. I cross
my fingers that the combination lock requiring so many developmental mysteries
to align just so, clicks and pops open one day.
I cross my fingers for a porch void of anti-surprise packages.
