I am pitied.
Just a statement of fact—people that have heard my name or
my story look at me with eyes heavy with knowledge. Their cousin-friend-neighbor-coworker
that has an autistic child has relayed horror stories, which combines in their
minds with every statistic spouted by the news or pseudoscience fact discovered
on the internet to create this nightmarish ideal of my life. Or their own bouts
of nearly diabetic numbers, occasional dips into hypoglycemia, or information
gleaned from aforementioned sketchy sources such as acquaintances, television,
or web articles have given them an insider’s perspective to how it must be to
have an insulin-dependent child.
Of course they all mean well. Shared stories and potential ‘cures’
for these inexplicable life complications are their way of reaching out, trying
to fill that uncomfortable void between their normal family, normal lives, and
my broken one. They don’t know what to say. It is something we can all relate
to, in some situation or another—the loss of a family member, an unexpected
diagnosis, a senseless tragedy.
Most days, I don’t understand the pity. I have never known
another way—I did not have expectations for my children while they were forming
in my belly. In my naïve head, it meant that I was less prone to
disappointment; my veteran experience has now taught me that it allows me a
great deal of flexibility and adaptability that I would otherwise be cut off
from. If I have certain ideals in place for whom and what my child will become,
the burden falls to me to ensure the future I have mapped out for them. If they
deviate, I must then accept it as a failure on either my own part or on theirs.
Without the weight of expectation weighing down our relationship, I am free to
make allowances to make life for everyone a little easier for the moment.
In practice it sounds a lot lazier than I’d like to think it
is. It is not the void absence of effort; it is more of adopting a watcher’s
role, permitting them to discover what they want out of life, directing them
away from destructive choices but with room to make their own mistakes.
What can I say: I have always been a bit of a hippie.
In either case, most days the pity is baffling to me. I do
not look at Emerald and see diabetes; I see an opinionated, strong little girl.
Whether derived from my lifelong love of health and dietary literature or from
a natural inclination to absorb pertinent information, the counting
carbohydrates and covering with insulin became second nature to me. In the
hustle and bustle of everyday life there is a chance my feeble and fleeing mind
may gloss over bringing along her testing supplies when going out, but my
hovering observation of her behavior has granted me a nearly sixth-sense about
where her blood sugar is based on the ups and downs of her temperament.
Of course, Gabriel is getting harder to justify away in my
mind. When we first started down this road to diagnosis Autism, he was such a
small, wonderfully loving, joyous blessing to our family. From his soft, floppy
blonde hair to his mousse colored eyes, long snuggles together as he sleeps,
and that big belly laugh, he has been a genuine pleasure to be around.
He started getting aggressive, but it was an age-appropriate
deviance and one that required the sincerest of apologies (most of which were
accepted readily and graciously). The socially-awkward pica slowly but surely
resolved itself, outside the occasional teething on a toy or stuffed animal in
the privacy of our own home. Meal times became less harrowing with his
increased appetite and willingness to try food, and a cocktail of medicine made
bedtime considerably less dreadful than it had been in the past.
Why would someone feel sorry for me? I have three undeniably
beautiful, unique children, I think to myself.
And then we have a day like today.
When Gabriel turns the movie I have put on for him a half a
dozen times, screaming full gale-force in my face as he pummels me with remotes
and his tiny fists. Curious Benjamin has discovered bottles of finger paints
that Mommy neglected to put away after work, squeezing green into the carpet,
purple onto the walls, and orange into his own hair. I have to reassure myself
that they are indeed non-toxic because I cannot stop what I am doing to clean
him or the house up—Gabriel has gotten into his diaper and smeared feces all
over his face and hands and clothes, as well as who knows what else, because he
was bored. Juggling the two boys in an attempt to minimize the overall damage,
Emerald wails from her room that there is a bug and she can’t clean because
there is too much stuff and it is too hard and she is tired; I tell her I will
be there as soon as I can and in all huffiness she slams the door so hard that
the last remaining picture the boys haven’t removed from my wall and destroyed
crashes with an astonishing spray of shattered glass. There is nowhere to
contain the boys while I try and remove any of the shards that could cause
potential damage—boundaries are a challenge, a dare, more than an actual form
of forced obedience.
This all transpiring in the longest hour and a half of my
life, I resolve to find a sitter for the monster children so that I can go on a
date with my husband, have a full night’s rest. I will settle for a nap, a
shower, or twenty solitary minutes to sit on the porch in silence and just cry.
Most of my calls go straight to voicemail. After all, most
responsible adults are still at work now, looking forward to getting off so
they can go home to their husbands and their sons and daughters, to a nice
quiet dinner, tuck-ins and goodnight kisses, and a bedtime they have been
looking forward to all day.
Meanwhile I am pushing greasy hair out of my face, wondering
how long it has been since I have washed it; I have worn the same flour-dusted
sweatpants for three days now because they are the only thing that fit; my nail
polish is chipped, my shirt covered in food I never ate. My eyes feel like they
have fifty pound weights attached to their lids—sliding lower and lower—knowing
that the moment I cave and l let them flicker closed, Gabriel and Benjamin are
going to raid the refrigerator and eat an entire pack of cold hot dogs before
dropping chilled Powerade into my sleeping arms to open for them.
Part of me—that quiet little voice that used to be reason
but has since morphed into something much more sinister and desperate—hopes that
if I fall asleep now, I just won’t wake up. If it’s the only way I will get
some rest, then please God just let me die in my sleep. Every time the voice
starts, guilt at the thought, the hope, of dying coupled with the sadness of
leaving Michael fending for himself causes me to jolt myself awake again and
again.
Lack of sleep has made me catty.
Nagging thoughts wonder if my phone calls are being ignored,
declined. Who would feel capable of watching three admittedly difficult
children? If there were fewer of them to watch, perhaps.
Benjamin isn’t so bad on his own—he is neuro-typical,
developing more or less on schedule with his peers. But he suffers through separation
anxiety, having never been away from his mother for any significant length of
time. Perfectly normal and expected, but who would volunteer to hold a
screeching, squalling, squirming toddler who wants nothing more than to be with
his mother? In the best of scenarios, you are welcoming a tornado into your
house to wreak destruction and devastation in its path, hulking his way through
your belongings as you chase behind him wondering why his parents haven’t given
a sharp smack on his bottom yet.
Emerald could be all right on her own as well; there is the
counting of carbs, but with mom and dad’s cell numbers and a working internet connection,
it should be more or less manageable. Ah, but the very vernacular of diabetes
is overwhelming and confusing and frightening in and of itself—what is a unit
of carbs and how does that relate to a unit of insulin? What is the difference
between Lantus and Novalog? What do we do if her blood sugar is too high, too
low? What IS too high and too low? How will we know to check her? What if there
is an emergency…questions build upon questions upon questions, all of which I
have the answers to and can answer, but this isn’t their life; this isn’t their
struggle. They were being nice, trying to give us a break by volunteering to
keep the little red-haired drama queen, and they shouldn’t have to have a full endocrinology
lecture just to get through three hours. And we can’t risk leaving anything
unanswered because knowledge is what grants mental peace. Without full
disclosure of every possible eventuality (or, frequently, even with) fearful
eyes follow her around, petrified that they are going to do the wrong thing and
accidentally or negligently kill this rambunctious child.
Not to even mention Gabriel. Bless him, he wants to be seen
and treated like a normal boy. He likes people best that treat him like he is
just any other kid; people that talk to him instead of in front of and about
him, people that play with him, engage him, love him. Michael and I have been
working the puzzle that is Gabe for four years now; trying to figure out what
motivates him, what he likes and dislikes, what makes him happy or sad or
angry. Reading his moods is convoluted and misleading at best. Peals of
laughter for most children indicate gaiety; with Gabriel, it usually points to
hysteria, feelings of being overwhelmed, overstimulated, and on the verge of a
massive breakdown. Through years of observation, it has become unconscious behavior
to redirect Gabriel’s “tells” for impending aggression, head off major
meltdowns, and remove him from unpleasant or unbearable environs. It took years
to cultivate that foresight and understanding, and I still get caught
blindsided by unexpected and distressing actions.
Thrusting Gabe into a new place with new people is something
he can cope with fairly (surprisingly) well. He is prone to minor stress, but taking
certain precautions such as wrestling singlets beneath his clothing to deter
fecal play and packing DVD’s and snacks that Gabriel is partial to add to a more
positive experience for everyone involved.
His presence is exhausting, however. His constant, frenetic,
expansive movements are at once overwhelming and emotionally off-putting. Not
knowing what he is thinking, especially as he flaps his hands in what could-possibly-be-maybe-if-you-look-at-it-the-right-way
hand signs or absolutely nothing at all or his bellowing, repetitive, nonsensical
vocalizations, is downright disturbing—how can you give him what he needs if he
can’t ask you for it or express himself in any understandable way? Are his
basic needs being met? Is he hungry, thirsty, bored, tired, wet, dirty?
Diapers add an entirely new element to the entire atmosphere
of chaos. Not one, but TWO children in diapers? Let’s be honest—no one wants to
change someone else’s poop. The only reason we do it for our own kids is
because of familial affection. We can also sometimes be motivated if there is
money involved. But here you go, two ticking time bombs that can choose to take
a crap anywhere in your nice clean house at any given moment?
Before kids, my house had this pleasant odor of absolutely
nothing, nothing, nothing at all. It smelled like air, like water, like wind—exactly,
precisely like nothing at all. It scarcely makes me happy that my entire house
smells like one giant Walmart bathroom of cheap cleaner and someone else’s
bowel movements.
We are burdened with foresight, Michael and I. I know how
this is going to end. We will thank you profusely, trying not to note the sheer
relief, exhaustion, and pent-up stress in your eyes. We will sincerely and
genuinely offer to clean up after the children, which you will again and again
decline, though we can see evidence of our children’s misdeeds in every visible
corner, crack, and crevice. Haltingly, we will ask you if there were any
problems that arose, then simultaneously blanche in horror and color in
humiliation as you describe the completely unacceptable tantrums of Emerald,
the extended squawk-a-thon Benjamin indulged in, and the handfuls of smeared
yuck Gabriel left on your walls, floors, furniture, and person.
None of these thoughts or hesitations or questions are
unfair. I get that. I have all the same thoughts and hesitations and questions.
When Dr. Beck told us Emerald could be released from the hospital, I had a
panic attack—minor, but the first in recollection in my life—because I didn’t
want to take this child home, to be responsible for another thing. I couldn’t
do it; it was nuts! We do something wrong, and her organs or life could be
compromised…that is not something a parent wants to be encumbered with. Of course,
I wanted her home. I missed her. But I wanted my Emerald back, perfect, sweet,
healthy Emerald. My heart registered that she was the same girl as she was
before, but my mind acknowledged that nothing would ever be the same again.
I am not writing this because I want to be pitied. It is not
something I actively seek or avoid—my adopted philosophy is that I have little
control over what others will think or feel in regards to me; all I can do is
try and live an upright, respectable life and let people feel and think how
they will. They do not pity me for something that I have done, but rather what
life has handed to me. They are entitled to whatever feelings that the
information elicits and it affects me very little either way.
I am writing this because I don’t understand, most days. But
when I do…why, that’s when I don’t remember how I do what I do. I forget how to
cope. I forget how to survive. When my body is literally and figuratively
beaten and bruised and broken, discoloration on my legs and arms and on my heart
and mind; when my house is buried under a mountain of items rendered useless
and ringing with reverberated shouts that leave me guilt-ridden and full of
self-loathing; when my entire life feels in complete shambles, like I have
royally screwed up everything up and ruined life for everyone around me….
I write because I need a way to remember.
--Andie
