Wednesday, November 16, 2011

That Thing I Don't Talk About

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.


Jacqui said...

Terri, that is hard. I have heard you share about this before on the RTS list, but putting it all in one article really brings it home. I have nothing to say that will give advice or help; but I also felt that wasn't good enough reason to say nothing. We have to stand alongside each other when we get real about hardships that we carry. So please know that you have a friend (though far away in distance, close in heart) who is standing alongside you.

Unknown said...

After pre-school “the term” changes… what once was a rosy cheeked toddler who is not potty trained becomes an incontinent child with medical reason for his padded bottom. Many a school staff complained it to be a distasteful chore… some even judged his parents with thoughts of inadequate parenting skills. No one but us was aware of the never ending stream of funds spent on cute undies, pull-ups, doctor’s appointments, and even bribery as a last resort; not to mention the hours logged in potty time. But we got there, much thicker skinned than we started out, and literal pros in maintaining our child’s dignity; the time from the birth of his elder sister to his and his three baby brother’s years in “diapers” totaling fifteen years. Today we make a bi-weekly contribution to Proctor and Gamble for products to help keep his bed dry. We have had weeks, sometimes months when this was not an issue, and yet we still have not triumphed over bed wetting. I still have hope…

Nicky said...

With Sam still being fairly young, I am still agonising about the more obvious delays like walking, talking, etc and they're already hitting pretty hard at the moment. Can't even work my mind around the rest right now, but have no doubt it is going to get much harder before it gets better (presuming that better is actually an option). But your courage and openess to blog about it will make it easier for me to deal with when we get there, knowing that my despair is not unique. Fingers crossed for that package-free day!

Floortime Lite Mama said...

I read your post and cried
Now I am reading all your hopeful parents posts
The "full of sugar" post had me sobbing
you are an amazing writer and mum