It’s Mother’s Day, 2012, 10 a.m., and I’ve
1) Performed
part of a gastronomy tube feed on one 11-year-old child,
2) Bathed
and changed the clothes (and beds) of both this same child and his twin (they both
have autism),3) Cleaned the kitchen after a lovely breakfast made by my partner, Lisa,
4) Set up one child in the master bedroom with a video about the moon,
5) Set the other up in the living room with a Signing Time video, on a loop, the way he likes it.
A pretty good morning, actually. (Don’t ruin it by telling me I’m a bad mother for “parking” my children in front of the telly; I already know this.)
So if it’s a good morning, why is it I feel that someone
should create the Karen Leh Home for the Perpetually Perplexed?
No, this is not the business idea (but come to think of it,
you might want to stay tuned on that one). The business idea would actually
counteract my perpetual confusion and make such a home unneeded. What I’m
thinking of is a nonprofit called Rent-a-Mom. Not a mom for my kids—no. For me!
Before anyone thinks I’m putting down my own mother, I
should say this: I adore my mother. We’ve come through a great deal together,
but she’s 75 years old, and her health is not that great. Plus, she lives two
hours away. And our town home has (count ‘em!) 29 steps—which isn’t even counting the three
to our front door or the seven into the lowest part of the basement. In short,
it’s a septuagenarian’s nightmare. (And to punctuate this household issue, Lisa
has just called me on the land line from our basement. No joke.)
So why would Rent-a-Mom be necessary and what would it
entail?
Unfortunately, I have to back way up. Picture yourself with
twin babies, then imagine flying halfway across the country, both three-month-old
infants in tow, so that one can get open-heart surgery that will then go very
wrong. Five months, seven corrected heart defects, one heart valve, one
tracheotomy, one gastronomy tube, and a brain bleed later, you are back at
home. One child lies on the floor. He has a tube that has been lassoed around
his neck and is blowing oxygen and moisture at his trach, the fog of which
billows up around him, prompting an overseas friend who sees a picture of this
get-up to remark that he “looks like an astronaut.” The other baby seems to be
doing okay, is hitting his milestones, but eventually takes to screaming day
and night, forgets how to use his eating utensils, loses his vocabulary, stops
giving eye contact, and begins incessantly lining up Matchbox cars.
I could go on, but you get the idea. When my children were
small, I used to threaten to put a flagpole on my roof where I’d attach a white
surrender flag so that someone would come and rescue me—or at the very least,
feel like crap for NOT coming to rescue me. I also used to fantasize about
getting in the car and driving.
And driving. And driving. Away, anywhere. One of my friends,
who also had a critically ill child, told me, “Oh man, if you do that, call me. I want to come.”
Somehow, we all survived, though with what mental defects I
do not know. I remember one particularly horrible instance where one of our
twins, at about age six, had diarrhea, took off his pants, danced through it,
then oh-so-artfully fingerpainted his walls, the curtains, the windows, and
everything else. This had happened on many other occasions but never this
badly.
“Lisa,” I said, “we’ve had a poop disaster, and I think
we’re going to have to tear up the carpet.”
“Oh, it can’t be that
bad,” she insisted.
I went back upstairs, and after several minutes, she came to survey the damage. “Holy Mary, Mother of God,” she muttered. “We’re going to
have to tear up the carpet.”
“Yes,” I said, jaw set.
She left the house to purchase a truckload of cleaning
supplies and tools we’d need. I will not describe her mental state or the
particular swear words she chose for the occasion, but suffice it to say, she
was not happy.
I was, if I remember correctly, shaky. But I was
clear-headed enough to call one of the boys’ paraprofessionals from school.
“Can you come?” I asked after explaining the situation.
Fortunately, she did. I’d never had anyone help before, but
I probably had never sounded like that before either. She was, no doubt,
somewhat alarmed. Sherry (the parapro), shepherded the kids, and Lisa and I
proceeded to take the room down to the subfloor. I opened the windows, cleaned
the walls, threw away bedding, curtains, stuffed animals, books, you name it, moved
the one boy into a different room with his brother, then locked the door to the
ruined room and left it closed off for something like nine months. Sherry,
being the sweetheart that she was and is, entreated Lisa and me to go out for
dinner afterward, just the two of us. We sat in a Chile’s in numb, stunned
silence for quite a while, as I recall, like people just returned from some
unknown circle of hell.
I’ve heard others tell similar tales. One mom I met several
years ago told me that after her autistic son pulled a brand-new $2,000 plasma
television set down on himself, she promptly packed the whole family off to the
ER. Not because anyone was hurt but simply because they “needed monitoring.” But
who can afford to do that every time a TV is destroyed or a room is redecorated
with feces?
Many of you might think, But Rent-a-Mom already exists—it’s
called Therapy. But again, I tell you, too expensive, especially for those of
us who are parents of special needs children (for those of you who don’t know, most
of these parents 1) have filed for bankruptcy, 2) totter somewhere near the
brink of it, and/or 3) have avoided it only by virtue of loving family). Plus,
if you’ve come through a room-destroying scenario like the one I described, a
45-minute “therapeutic hour” will never suffice. And, honestly, complaining
only goes so far. I’d be happier if someone came and did my laundry or just sat
and brushed my hair. The way I picture Rent-a-Mom, it’s a funded service,
gratis for the person being served.
Sherry was my hero that day. But what if there was always
someone like that that you could call? Even mothers of neurotypical children
could use such a service. Hell, even single, childless people could use it once
in a while (read my post entitled “Karen’s ‘Helpful Hints’ on Coming Out” if
you don’t believe me). Most of us have dear friends and family, but I have to
tell you, it’s incredibly hard to ask for help, or to keep asking for help. And sometimes the help you need is just
someone to make sure your kids are safe while you do a hard thing. Someone to
make you a cup of tea and remind you to breathe. Someone to say, “Go out and
eat, go grab a nap, go for a walk—I’ve got it.”
In short, a mom. But a younger, able-bodied,
no-emotions-invested-in-this-situation kind of mom. (My own mother knows better
and would never do this, but the last thing you want someone to say in a
situation like the one I described is, “Why did you leave him alone in his room
for twenty minutes?”)
This nonprofit I’m thinking of would offer short-term but
essential help. I would start it if only I didn’t still need it so badly (argh!), but maybe this is your calling?
Go ahead, I dare you—steal this idea.
