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 Instead, the books have been replaced by instruction manuals for small appliances.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.
I only had one biological grandparent growing up - my dad's mom. But we called my mom's oldest sister and her husband "Grandma and Grandpa" and we called my dad's step-dad "Grandpa" - however, the only grandparent that my parents called "Mom" was my dad's mom, and so, when I was little, I thought that, once you hit a certain age, you started calling your parents by their first names. And, like all little kids, I was in a hurry to be a grown-up, so I started calling my own parents by their first names when I was like 6. My mom put a stop to that pretty quick, but my dad thought it was funny. And so I rarely called him Dad or Daddy...I called him by his first name.
He signed every card to me "Your Jack."
My dad was one of those men who firmly and wholly believed that his children were perfect. I always felt awkward and ugly - but I remember one morning, sitting at the breakfast bar, Dad pulled out a disposable camera from the junk drawer and took my picture. He told me, "You are beautiful, Sammy. You are going to be a beautiful woman." He did that nearly 20 years ago, and still, I remember.
Yet he didn't want his children to grow up boastful or cocky, either. "You are so smart," he told me once. "But you need to remember that other people aren't. Things don't come as quick to others. Don't show off. And be patient with them."
He was also firmly convinced I was going to be the next Stephen King - or some female equivalent. He was the one who encouraged me to study writing at college. "A degree is a degree," he said. "Unless you want to be a nurse or an accountant, employers just want to see that you have one, to show that you can think."
And I am sure each of my siblings had their own "lessons from Dad," because our dad was the master of the quiet proverb, spoken gently as he sanded down some piece of furniture or changed the oil, told in a private moment, because even though he felt like each one of us were perfect, he also knew that each one of us were completely different.
But one of the last things he said to me before he died was, "Out of all of you, you worry me the most."
I cannot tell you how many times I have replayed that in my mind, wondering what, exactly, he was worried about. Sometimes I think it was because he always felt that, like him, I tried to take the weight of the world on my shoulders and fix everything, and once he was gone, I wouldn't have him to spot me any longer. Sometimes I think that it was because, even though my dad had a talent for spotting what was wonderful in each of us, and calling quiet attention to it, he was still aware of our flaws...and I have many of them. Sometimes I wonder if it was simply because I was the one who hit him in the mouth with his oxygen tank when trying to get him to radiation, and then dropped an entire computer on his lap when trying to set one up by his bedside...because I could see where that would worry him, as well.
But mostly I think it was because, out of all my siblings, I was always the least settled. Both my brothers were engaged at that time; one had a steady union job and the other one was about to start the police academy. My beautiful sister had been married to her military husband for years, and was raising two blonde-haired, blue-eyed babies, and one of the things my father admired and remarked upon about her was her strength and independence. I am certain he had worries for all of them, as well...but I was the one without a focus. I had a box full of short stories and 2 novels, $22 in my checking account, and no plan.
I remember when I first started dating Justin, I realized he was the first man I had ever dated that my dad would have liked and respected. My dad was not some caricature of the father who didn't think anyone was good enough for his daughters; he felt like he and my mom had raised us well enough to respect ourselves enough to make good choices. I just think he would have liked and respected Justin as a man, and not just judge him as the man who was dating his daughter.
And, five years into our marriage, one kid added, getting ready to close on our first home, I think my dad would love my husband. Not just because of who he is, but because of who he is to me. My husband views me through the same, completely-biased eyes as my dad did. "You are beautiful," he tells me, and he means it, and in my home, I am. "You are so smart," he says, with pride. "Did you do any writing today?" he asks me. "You need to do more. I know if you finish that book, someone will publish it," he says, with complete confidence. He has become my safe spot, when the world overwhelms me. He is the one person who never doubts me, who can critique but doesn't criticize, who has doubled my joy and halved my problems, who, when I mess up, will blame everyone and everything around me before seeing that maybe, just maybe, it actually was my fault.
I think, if my dad could see me today, he would be surprised. I think he always expected me to end up in New York City, as an editor of some literary magazine, writing best sellers on the side. Instead, I am a housewife, a mom, a woman who writes often...but mostly about motherhood. But I think he would be just as pleased as surprised, because I am happy, and that would make him happy. And I know he would be proud, because, to my dad, there was nothing more important, more beautiful, more sacred than parenthood.
I can remember exactly the way my father's hand felt, as I held it on the day that he died. Cool, smooth but callused, and, as sick as he was, I still felt the strength in that hand.
And I held his hand, and I looked at him, and I said, "Being Jack Palmer's daughter is the proudest thing about me."
That still remains the truth - but being Justin Kilgore's wife, and Justin, Junior's mother, are also the proudest things about me.
And I believe that if my dad could see me now, he would say, "I'm not worried anymore."
I am the Queen of Paperwork.
It's a duty that fell to me pretty early on in my marriage. I married a veteran. Do you have any idea of how much paperwork that generates? Benefits, schooling, loans, withdrawing from our TSP...all of it usually involves pages of forms in triplicate. I can rattle of my husband's social security number with more confidence than my own. My printing is smooth, as legible as a second grade teacher's, neat rows of uniformly-sized black letters, and no one even knows what my husband's actual signature looks like anymore...not even him.
My check marks are flawless, I keep copies, I leave nothing blank but instead firmly write N/A where it is applicable.
If filling out paperwork were an art form, I would totally be Van Gogh.
Until now.
Junior had his pre-kindergarten screening several weeks ago. I was worried that he would refuse to answer any of their questions, that he would clam up and shut down like he often does. But I was wrong - he interacted and answered their questions the best way he knew how, and before we left, the Special Education Director came to speak with me about the very great possibility that Junior would be referred on for further testing in order to get him enrolled in the Special Education program.
I am not going to lie: It was a blow to my heart. I knew he was behind in some skill sets, and that his social and emotional skills were also behind, which is why he is going to be evaluated at Children's Mercy. But here was this very sweet lady telling me that there was some real issues in the way that Junior processes information, things that I never even saw because he's so verbal and so bright in so many ways that frankly, I never had much concern.
For example, when asked what's wrong with a picture, Junior will tell you that nothing is wrong with the picture - and he is right. The picture isn't torn, or ripped, or stained - the picture itself is fine. It's getting him to understand that the picture represents something...but he is so literal-minded that getting him to see that is an obstacle. I could give you 47 other examples of how his answers weren't wrong, exactly...just not right, either.
So, Justin and I were prepared when we got the call the following week with Junior's scores. What they were able to score was very low, and many other things they couldn't score at all. The SpEd director was again very kind, and helped us both realize, as parents, that this was actually the best, most positive path we could take for our child...and I wholeheartedly agree.
I don't know if knowing that has made me cry any less, though.
And so we received a very detailed "parental input" form through the mail. I immediately opened it, set down at the kitchen table with my nice, black, form-filling-out pen. I filled out all the normal stuff - the name, the DOB, the parental names, the address...and then I stopped. I read it. I read it again. And then I put it on top of the refrigerator, telling myself I had 30 days, and that testing won't even resume until August...I put it away because I didn't like the questions.
I got it back out today, because hiding stuff (literally) doesn't make me stop thinking about it, and I decided that the best course of action was to just do it.
And so I am reading things like What best describes your child? Check all that apply: Easily frustrated. Check. Pushes limits. Check. Bothered by noise. Check. Anxious. Check. Difficulty getting over situations. Check. Check. Check.
And I'm filling out things like Please provide any other relevant information that may be helpful in determining your child's specific needs with "Obsessions with vacuums, fans, outlets and drains. Cannot be deterred from talking about them, building them, etc. Prevents him from learning other skills or interacting appropriately with other people."
Are you concerned with diet? Yep.
What other areas are you concerned with? EVERYTHING.
And with each answer, I am writing in tiny, cramped letters, adding asterisks with corresponding asterisks to qualify my answers, scribbling "see backside for more info" and all of it seems so damned negative, and I am getting sick to my stomach, thinking, "Jesus Christ, why wasn't I concerned 6 months or a year ago? What the hell is wrong with me?" and I am also thinking, "Yes, he is all of this - he hates letters and being touched by strangers and beeping noises and yes, he has seizures and yes, he freaks out if you don't serve his American cheese slices just so and yes, yes - he does know his shapes and colors, but do they need to know that he doesn't understand the concept of shapes and colors, that he has memorized what a triangle looks like but he also demands to know what shape 4 o'clock is and whether Wednesday is blue or green?"
And by the time I finish, it's smeared with ink and things have been scribbled out and then re-added and it all adds up true - it's all him, but it isn't him. Where's the part where I can tell them how sweet he is, how after 8 hours of mind-blowing, non-stop activity, after I've washed the day's accumulation of grime off his perfect, sturdy little body, that his favorite thing to do is sit on my lap and sing songs? Where's the part where I can tell them how funny he is? How he laughs so hard sometimes he collapses, how sometimes he laughs so hard he toots and then laughs harder while crying, "DID YOU HEAR A DUCK?" Where's his helpfulness? His creativity? He may not be able to draw a shape, but he can build a vacuum out of mega blocks that would put an 8 year old to shame. Where's the part where I can tell them he wakes up every morning and wants me to open the blinds right away so he can shout "GOOD MORNING, WORLD!" Where can I put his happy nature? His love of music and dancing, how tender he can be, how protective? Where do I tell them that he is, in our home, the center of our universe, that he is our very heart?
I will tell you - the back of the last page. That's where I put it. In neat, uniform black letters. With no cross outs, no addendums, no asterisks to qualify what I wrote.
Is it relevant to them? Probably not. Is it relevant to my son? Yes.
Because you see, the whole concept that there is something different about my child doesn't phase me, because frankly, we have known that for awhile. And I have even gotten over this irrelevant fear I have had about "labels" because if getting him "labeled" as something - whatever it may be - is how he is going to get the help he needs to succeed in this world, we are okay with that. Labels, after all, are much different than limitations. And at the end of the day, there is no label or diagnosis that could ever stop Justin and me from being so proud of exactly who our son is - there is nothing anyone could say that will ever make us doubt that our son is amazing and perfect. A label is nothing. It's just sort of like...well, "handle with care." Sometimes "open at your own risk." Sometimes it's "fragile."
A label does nothing to change the content of his character.
What does bother me, at night, after my son is fast asleep, perhaps clutching his dust buster, or maybe his favorite battery-operated fan, is the realization that the world will not see him through his mother's eyes. What frightens me is the fact that I will not and cannot always be there to interpret the world for him, and, in turn, interpret him to the world.
But what I can do is fill out this paperwork, giving the people who need to know him everything they need to know...and everything I want them to know. And, in doing that, I'm helping my son take the first step to becoming his own interpreter.
There is such a huge part of me that wishes I could just keep him home with me, making hand puppets and letting him vacuum up cracker crumbs and playing in the dirt. But I won't do that. It isn't possible, and it isn't fair to him. Or to anyone who is lucky enough to meet him.
And you know what? You're welcome, world.
This was not the blog I intended to write today.
Junior's been sick. And then, at the tail-end of his illness, I got sick. Neither one of us still feel that great, and so here we are, going on day 3 of Kleenexes, bad moods, Garfield overdose and cabin fever (to replace the real fever). And since all maintenance activity stops when Mom is sick, I woke up this morning to a filthy house full of the afore-mentioned Kleenexes and abandoned books and a sink full of dishes holding the food that Junior didn't want to eat....which is all the food, ever.
And since I no longer had a fever, I tackled it, and felt better for doing so. I explained to Junior that we were going to take one more day to rest - and by rest, I meant not go outside and run around like maniacs, because I think I may have gotten a cumulative 12 hours of sleep since he first spiked a fever three days ago and started seizing and although I am glad that Junior thinks he feels well enough to resume his normal level of mind-blowing physical activity, Mama is not.
Since I was well enough to clean, I thought maybe I was well enough to do some writing - I try to do a little every day, because it's the one big thing I do that is for me, and I think that's important, and after several days of not doing it, I really wanted to do it. So, I got Junior involved in building a car wash, complete with water, on a pile of towels in the living room, made myself a cup of coffee and sat down at my computer desk, and opened up something I have been working on.
And before I could type even a single letter, here comes Junior. First he just stood there quietly, holding on to my arm. And I'm all holding my breath, hoping that if I don't respond, maybe he would drift away. But then he was leaning against my hip. Then draped across my thighs. And then, all suddenly, he managed to worm his way onto my lap, and it's like I'm dealing with an octopus instead of a boy - he's reaching for the keyboard with one hand and the speaker with the other, all while twisting himself into a more secure position by using his feet against my shins for leverage, and I'm asking God why in the world did He not give us four arms, and just as I move the speaker, Junior upends my coffee mug everywhere.
"Oh, hot brown milk!" Junior says, which is what he calls coffee and is said in his most dramatic fashion, which usually makes me laugh. Not this time.
My keyboard is dripping with the hot brown milk, the desk top flooded, which quickly puddles onto my freshly mopped floor and I'm thinking, "Thank God it wasn't my big coffee mug" because seriously, do you have any idea how much coffee one mug holds? If not, go brew yourself a cup and then dump it on your desk. You will be amazed.
Just kidding. Don't do that.
I blew my cool. "DAMN IT!" I said.
"I'll help you," he said.
"NO. Just...go to the living room and SIT DOWN FOR FIVE MINUTES AND HOLD STILL AND ZIP IT FOR ONCE!"
And, miraculously, he did. He hopped onto the sofa and buried his face in the pillows, and I went to fetch towels and the mop and some cleaner, bitching about sometimes just wanting ten minutes of peace, just ten freaking minutes, occasionally looking up from the dripping mess to give him The Look - the one that usually makes him yell "PUT YOUR EYEBROWS DOWN, MOM!" You know, just in case he couldn't sense my displeasure from my Darth-Vader-like breathing, nostril-flaring, mop-banging and vague threats of day care and perpetual time-outs.
But he didn't yell at me to put my eyebrows down. What he said instead was, "Take a deep breath, Mommy. Do you need a squeeze?"
And my eyebrows froze mid-lift.
This was significant.
See, Junior is beginning the long process of being evaluated for many reasons with several possibilities, including the chance that some of his his behaviors may stem from the area of the brain where his seizures originate. Regardless of what we discover, moving forward, the fact is, many of his behaviors are concerning and our child does not respond like other kids. He freaks out, to use a less medically-accepted term, over things like stores dimming their lights, the beeping noises when trucks back up, not finding the right pair of underwear or the wrong colored sippy cup, new food, or, sometimes even more distressing, normally acceptable food being incorrectly served.
And so recently we have treated his melt-downs differently. Instead of walking away from him, as we do when he has a "normal" tantrum, we scoop him up, cross our arms over his chest, folding his limbs tightly to his body, and we squeeze. The effect is amazing. The first time we tried it, it scared me, because I didn't know how hard to squeeze, but I squeezed, and Junior stopped screaming and whispered, "Squeeze harder."
So it was significant, for me, to see him apply something to a situation involving emotions - something that Junior is, frankly, very behind in.
And it was significant because my child looked at me and thought that maybe I was having a melt-down, and needed his help to reign it in.
My eyebrows came down.
"Yes," I said - although, at that point, I did not need a "squeeze." He had, unknowingly, stopped me mid-tantrum pretty damned effectively. But I wanted Junior to have the opportunity to see that he can help others, even as he needs help himself.
And so he "squeezed" me, taking deep breaths as he did it, and so I mimicked his breathing. "Wow. I really lost my cool, didn't I?" I said, when he was done squeezing. He firmly agreed. And then I handed him a wad of paper towels and had him clean up the chair while I did the rest...which was how I should have handled it in the first place instead of going all Mommy Dearest on him.
I am a realist - God knows this wasn't the first time I lost my shit over something, and I am certain it won't be my last. And I didn't want to turn this into one of those "I learn more from my kids than they learn from me" posts, because that's not technically true - I mean, we have to teach these critters everything from basic personal hygiene to basic human kindness. It's a tall order.
But the lessons I learn from my son are big lessons. They are lessons that are both broad and deep. Lessons that need to be repeated, over and over and over sometimes - like patience and humility. Humor and self-discipline. Owning your wrongs and learning to let them go.
And the need for a lidded coffee cup.
Dear Diary,
It's been awhile. What with the warmer weather and all, I've been pretty busy...mostly collecting rocks and sticks and digging in the dirt while enthusiastically looking for "bad bugs" and then running to Mom, screaming my head off, when I actually find a bug. She usually laughs at me and says, "Why did you look for a bug if you didn't want to find one?" And I say, "I wanted to look for it, not find it."
And then she says, "You are the most literal-minded child in the world."
She says that a lot, actually. And although she is wrong on a whole bunch of topics (the suitability of Pringles for breakfast, unnecessary bathing, whether or not brushing one's teeth should really be a daily task, and bedtime, just to name a few), she's pretty much right about this one. She tells Daddy about all the language and linguistic classes she took in college, and how this one professor said that everyone who loves language becomes even more fascinated by it when they have a child, how there is something fascinating about watching a little human learn to develop linguistic skills and begin to process blah blah blah and then I eat some dirt while watching Daddy's eyes glaze over a little.
I call glue "paper-stick," for example. Makes more sense then glue, to me. A closet is, and always has been, a shirtie-house, and bras are simply Mommy-shirties. The house and I both get "dirtied down" before we can get cleaned up. She finally retired my Superman t-shirt because every time we went out into public, strangers would ask me "Hey! Are you Superman?" which frankly, baffled me and made me angry, because hello! I am obviously not Superman, so I would quickly (and loudly) reply "NO! I AM JUSTIN RYAN!" Same with shirts that have words printed on them - why would anyone ask me what my shirt says? MY SHIRT DOESN'T TALK. I mean, I am four years old and I have that one figured out. "Go pick out a book to read," Mom will say.
"I DON'T KNOW HOW TO READ," I will reply, because I don't. And frankly, I am too busy to learn.
I am not trying to be funny. In fact, when Mom starts to laugh, I usually point that out, loudly and repeatedly, until she apologizes...but I can still hear the laughing under her words.
The other night, though, I said something that made Mom laugh so hard that she cried (also confusing, to be honest), and she actually climbed up to reach the top shelf of her closet and brought out the dust-covered baby book she hasn't touched in over two years to write it down. (She'll probably just give me her log-in to facebook in lieu of anything meaningful.)
It was bedtime, so I was already feeling a little contentious. She was supervising the whole "go potty and put on your night time pants." (We call them "night time" pants to avoid the indignity of the term "pull ups" and also because I only wear them at night time, so it just makes more sense.)
So I put on my night time pants, and she said, "You know, you've been waking up dry every morning. You've been doing a great job of holding your pee-pee all night."
I gave her a startled, confused look, and then said, "I DON'T TOUCH IT WHILE I AM SLEEPING."
Because it's true, Diary. There are plenty of times when I do touch it, but I am relatively certain that I leave it well enough alone at night. At least for now.
Sincerely,
Justin Ryan Kilgore, Jr.
"When are you going to have another baby?"
It seems an innocent enough question, and certainly safe enough - after all, I already have a baby, proof of my ability to do so, and it's natural enough to assume that I want to do it again.
And I do. I want to, badly.
A few months ago, I went to the doctor because of a lump in my breast and under my arm. I was scared, of course - who wouldn't be? Thankfully, we got good news on that front - but during the course of the exam, and the blood work that followed, I was informed that I had a condition that makes it very hard to get pregnant. Had I had help getting pregnant with my son? No, I answered - in fact, that piece of business only took 3 weeks.
You are very lucky, I was told.
And I know that. All I need to do is look at my beautiful son to know that. But that doesn't stop me from yearning for another. My biological clock isn't just ticking - the alarm is going off, full-volume, and the snooze button no longer works.
I want to be pregnant again. Honestly, I felt beautiful when I was pregnant. I loved the rounding out of my body, the feel of the hard bump that was my growing son's behind beneath my hands, and Lord knows I appreciated the boost it gave my boobs. I want that feeling of my body being productive, even when I am napping - that feeling that my body is doing what God created it to do. Even the ugly symptoms - the nausea, the swollen feet and ankles...all were just reminders that I was creating life. I want to do that again.
I want to hold another infant. I want to smell the bakery-sweet goodness of his or her head and breath, I want to bathe and lotion and powder each tiny toe and perfect crease and wrinkle. I want that hour at 3 a.m., when the baby needs to be nursed, and it feels like there is no one else on earth but us. I want the sweetness of it, and I also know now the fleetingness of it, as well. I want that, one more time.
I want to watch another baby explore, discover, grow, learn. I want my heart to skip a beat when the baby smiles for the first time, the triumph of the first time baby sleeps through the night, the pride of the first step, and I will take the poop, the spit-up, the fevers and the sleepless nights and the teething. I will take all of that to do it again, easy.
I want my husband to experience it all again, as well. He is a wonderful father, and he wants another child as much as I do.
And perhaps most of all, I want my son to have the chance to be a brother. To have the one person in his life that he is most connected to, the one who will know all the stories and get all the jokes. I want that for my boy.
Yes, I am lucky, but...I want another baby.
The doctor says there are things we can do, and so I am going to do them. My list is short, but it's hard, as well. I need to lose weight. And the damnable part of it is, the problem I have, which is PCOS, makes it incredibly difficult to lose weight. But it's a task that I am determined to complete. And because of the diagnosis, I won't have to wait the normal 12 months of trying to conceive before getting treatment - I simply have to do my part.
The doctor prescribed a medication that should help some with that - not a diet pill, but something that helps regulate insulin and hormones. It doesn't help me lose weight as much as it makes it possible for me to lose weight. I have been dieting, it seems, for 2 years straight, with very little result, and this should change that.
And so I am writing this - not for sympathy, because trust me, I've wallowed around in it enough myself, but for accountability. To nail down my own goals and the huge reason behind them, and put them out there, and live up to them.
The doctor recommended a 10% weight reduction, but I have set my own, bigger goal of when I feel like my body will be best ready to try fertility treatments. I have lost eleven pounds since that appointment - each one a tiny step in the direction I need to go.
I have 49.8 more steps to take.
Wish me luck.
