Pity

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