The Special Ed coordinator in the school district we just moved to called this morning, and our chat was full of test scores and skill sets and seizure plans and how unfortunate the length of the waiting list at Children's Mercy Behavioral Health Clinic is and IEPs.
In the background, I could hear the sounds of a vacuum from the TV, where I have pulled up youtube and queued up my son's favorite videos.
I maintained my positive, matter-of-fact tone...a tone that I emulate from mothers I have seen gone before me, mothers whose children have problems similar to mine, or more severe, mothers who don't have to put on a brave face because their faces are already brave, because I am a big believer in "fake it til you make it" and I know a great deal of my son's success will be tied up in me acting as his advocate until he can advocate for himself, and because I want to fill that role with grace and with humor rather than anger and bitterness.
But as I hung up the phone, I was both angry and bitter.
I am angry because this is not what I expected. I would have been an awesome Pinterest mom...making snacks shaped like penguins and art projects out of coffee filters. Instead I have a cabinet full of saltines and a box full of markers that have long dried out. I started buying him books before I even knew he was a "him"...picturing long bedtime routines that involved multiple readings of Good Night, Moon, taking for granted that he would love to read. Instead, the books have been replaced by instruction manuals for small appliances. Do you have any idea how boring those things are?!? And I am tired, because Junior woke up at 2:00 this morning and could hear the humming of the refrigerator, which freaked him out and resulted in him screaming and sobbing about "the wrong noises, Mommy!" until I was actually contemplating unplugging the refrigerator because the cost of replacing spoiled food seemed, at that moment, negligible in comparison to his fear and upset.
I am sometimes angry when people are unknowingly dismissive..."It could be worse." Yes, I know that. Of course, I know that. But the flip-side of that coin is that it could be better, too, you see, and, like every other mom in the universe, I want it to be better for my child.
I am sometimes angry when I realize how much of my parenting is consumed with damage control.
I am sometimes angry because I am often reluctant to speak of my anger in the fear that it will be misconstrued into anger at my son, or disappointment in who he is, when that couldn't be further from the truth.
I am sometimes angry because I never once imagined that I would be on the phone, coordinating further testing, learning to say the term "special needs" in a matter-of-fact tone and applying it to my child.
I am sometimes angry for a thousand reasons, many of them too petty and too small to even mention; some of them so big and tender and raw that I can only choke them out, through tears, in bed, at night, to my husband, who holds my hand in the darkness and says, "I know. Me, too."
And as I am emailing the SpEd coordinator from one school district to update her on what this new SpEd coordinator will need, my son comes in and says "the youtube is being too slow. Can you come fix it?" I tell him to hold on - this will take just two minutes - and slam! He bangs his head into my computer desk, a sudden ball of fury and despair, and bam! He does it again before I can even react, the cords in his neck standing out in stark relief as he screams so loudly that his scream actually goes silent, and it's panic that I see in his eyes more than anger, and I know he needs me to help him reign this in...
But a part of me kind of wants to bang my own head against the desk, too. To scream so loudly that my vocal chords can't sustain the sound. To just dissolve into a blur of emotions too big for my skin to contain and just let it go until someone bigger and wiser comes along to help me reign myself in.
I don't, of course - I gather him up and fold his furious, flailing limbs against me and squeeze him, because the pressure soothes him, carrying him to my bed and helping him decompress. I try not to wince at the angry red comma on his forehead. When he has calmed, we discuss (for the 3,987th time) what other ways he could have handled his disappointment...because some day, I am confident this lesson will stick, and he will turn to one of the many techniques we are trying to teach him rather than banging his head or biting his wrists and fingers. Not today, but some day.
Twenty minutes later, I finish the email that was only going to take two minutes. My tone is light, friendly, matter-of-fact, appreciative for her help, as always.
I make my son his mid-morning snack (saltines and milk...which makes it different from lunch, which will be saltines, cheese, yogurt and milk, but you know, he licked a nectarine last week and it didn't send him into a gagging fit of fury and disgust, so that's a plus). I sit on the floor with him as he eats, talking about food and how good it is to try new things.
"Uhhh...I just like white crackers," he says. "And vanilla milkshaves." The only trace of his melt-down is a bump on his forehead which has faded to pink. His skin and eyes are clear of the tears, yet part of me remains tense and watchful, almost defensive, knowing that, at any moment, any bump in the road, however minor, could potentially send him spiraling...
I have to let it go. I have to push that aside, I cannot let that dictate the rest of our day. Like my son, I have had to tell myself this 3,987 times and, again, I am confident that some day, this lesson will stick. I think of all those other moms, with their brave faces and strong voices, and I think that maybe there is anger and bitterness beneath for them, sometimes, too.
And until then, I just have to fake it til I make it and hope like hell that's good enough.
When you are young, having a sister is pretty much the worst thing in the universe, ever, in the history of all things that are bad. With one subtle poke (so subtle that no one but me could see it), my sister could have me raging like a lunatic...and all I had to do was breathe a certain way to send her into a frenzy.
We shared a room for a great deal of our childhood - matching princess beds in white and gold, matching Strawberry Shortcake nighties...and a huge shelf full of stuffed animals, dolls with eyes that ranged from knots of thread to glass, eyes that closed sweetly or twinkled or winked nicely in the daytime, but became something else entirely at night, after lights out.
I would pull my sheets up over my head - probem solved. But not my sister. "Sam," she would whisper. "They're still looking at us."
"Then turn them around!" I would hiss. "You're older!"
"But you see in the dark so much better than me," she would say. "You have cat eyes. I wish I had cat eyes. If I had cat eyes, I would turn them around for us, but I don't. You do, though. I can see them glowing from here."
And I could feel my cat eyes working as she said this...shapes sharpened into focus, thanks to my special eyes. I would jump out of bed, rush to the shelves, and, in a flurry of fear and pride, turn all of our dolls to face away from us, before rushing back to my bed, leaping into the middle of it in order to avoid anything grabbing my ankles.
Whatever game we devised, she always got the plum position, got to go first, direct the play while playing the lead role. And it was never because she was older; oh, no. It was always some variation of the magical cat eye ploy. "No, you play the boy because you are the better actor. It's harder to play the boy." "No, I'll take the pink one, you take the green one. The green makes your eyes look gorgeous."
What I remember most about my sister as a child was that she always had an idea - always something new, something creative. "I read how to make donuts out of canned biscuit dough," she would say, and an hour later, there would be a plate heaped with hot donuts, sprinkled with sugar that, as long as you ate them when they were piping hot, tasted amazing.
"I read how to make clay that you bake in the oven and it hardens," she would say, and we would spend the day fashioning dolls for her dollhouse, baking them solid, fashioning dresses out of scraps of cloth.
"Let's catch tadpoles and keep them and watch them every day, so we can see the exact moment they turn into frogs," she said one day, and so began The Great Tadpole Summer where, armed with nets, my sister, my brother and I would walk to the pond, skirting the edges carefully, freezing quickly and falling utterly silent the moment my sister held up one hand and said, "Tadpole territory!"
I cannot tell you how many tadpoles we caught that summer. We collected them every morning, and then took them to this water tank in another pasture, which was fed by an underground stream and was so icy cold that, even in the heat of August, it made your teeth hurt when you stuck your feet in it.
We would dump our latest catch in, and then fish out the prior day's catch in order to see the progress. And, inevitably, the ones we fished out, the ones who had been quick, slippery little bits the color of mud the day before were now sluggish, easily-caught...and had turned cobalt blue and white.
"These ones caught the Blue Disease, too," one of us would sigh, fishing out the ones that were floating at the top, garishly colored, never once realizing that it wasn't some mysterious tadpole disease that were turning them blue, but that we were, instead, freezing hundreds of tadpoles to death that summer. I mean hundreds.
And then, overnight, it seemed, she no longer wanted to put on our old calico skirts and play Little House in the Prairie. "Tadpole Territory" was met with rolled eyes that were suddenly mascaraed, she spent hours in the bathtub, and hours doing her hair, and more hours with the phone stretched from the living room into the little closet under the stairs, where I would press my eye to the crack of the door, both out of genuine curiosity and just to piss her off. Was she talking to boys? Was she talking about boys? Did Mom know about the bottle of Sun-In she had secretly bought?
For awhile, it was like we were on seperate planets. She was suddenly beautiful, and had a driver's license, and a boyfriend, she had traded in Judy Blume for Seventeen and bought an underwire bra, and suddenly there was a whole series of firsts she was engaged in - first date, first prom...I still remember being bowled over that the young lady in the emerald green dress and long red hair, who was absolutely stunning, was the same girl who used to play Star Fairies with me, and I stood there, a smoldering lump of jealousy and awe, wanting her to stay home and watch re-runs with me while simultaneously convinced that she was the most beautiful girl in the world and wanting everyone to see her and know she was my sister.
I watched my sister grow up from a unique vantage point...always a few steps behind, with a mixture of jealousy and pride, disgust and admiration, that is, I think, a distinct privilege that only little sisters have: "Look at how awesome my sister is, and I hate her!"
She graduated high school, moved out and got married, and I cannot tell you the exact moment I realized my sister was the best friend I would ever have, but it happened, like it tends to do. I would go spend the weekend with my sister who was such an adult that she had her own apartment and a husband and everything. She was still very much the older sister - how could she not be, sitting there on her own couch, casually ordering Chinese food from her own phone, while I envied her and hoped that the rice wouldn't stick to my braces? But there was no more hair-pulling, no more screeching, and if there was no more Tadpole Territory, there were make-overs and advice, stories exchanged, built upon the secret language and ancient history of sisters.
At ten, my sister would say, "Just you wait," and it was a threat. At twenty, my sister would say, "Just you wait," and it was a promise.
She became a mother, and then a mother of two - yet another round of firsts. Her husband had joined the Army, and they began to move every two years, further and further away, it seemed, and yet we just grew closer, and now it was her children who benefited from my sister saying, "I have an idea," instead of me, and I delighted in watching her, loved seeing her face in the face of her daughter and her son.
From Kansas, to Germany, to New York, and to Germany again...she couldn't be at my wedding, but she wrote a toast that was read out loud and made me cry, and I called her the moment the marriage certificate was signed. She was here when my son was born - she secretly signed in before he arrived, knowing that everyone else would have to do it before they could come in to my room, so that she could be the first to hold him. She would have been the first, anyhow, but that's my sister - she always has a plan.
She's home now, for good, living just a few minutes away, and after years of living on different continents, it still feels like an incredible luxury to simply have her in the same time zone.
We are often smug in our love for each other, in our connection - what do women who don't have sisters do? we wonder, and then thank God that we don't have to answer that. I can catch my sister's eye and know exactly what she is thinking - she can read my face like a well-loved book. We know our every button, and we push them with glee, not to be mean, but just because we can, and it's funny. We send each other horrible selfies, chins drawn into our necks, gaping mouths, crazy eyes...and we do it knowing that it will immediately be erased and never shown to anyone, and that is some serious trust.
Anyone who has a sister knows about the moment of transformation, when your sister goes from being your enemy to your best friend, from a curse to a blessing...to the person who holds your heart and history as carefully as you hold theirs.
Magical fucking cat eyes. God, she was good.
