Kapow

Everyday we witness brilliance.

I go through each day with my mind blown wide open as my child peels back layers. The tiniest things are a revelation to her. She takes the world apart and puts it back together in fresh ways. I wake up and my own world is full of promise, but hers is packed with innovation. And so, from the moment I step into her sun, I just wait for the newness to wash over me.

This moment is a privilege. I’m soaking it up with the expectation that this is four, maybe five, and that she’ll eventually settle into life like the rest of us. That she’ll outgrow it like she’s outgrowing my lap (that’s a little heart-breaking, isn’t it – she’s so long). It’s all I can do to keep my eyes open and watch. Not to guide or to suggest, just to sit and wait and listen. This is nearly impossible but it’s my ever-present goal.

I smiled in relief this morning, a little, a smidge, when we dropped her off at school. She can pour this constant discovering onto someone else and I can go to work with the very reasonable expectation that the upper limit of surprises at a library is perhaps three. I feel like the edges of my mind are rubbed a little raw after two full days watching her read, add, invent, uncover, explore, surprise after surprise. She reads words everywhere all of a sudden. Watching her sound out a word and then produce it, fully formed from her mouth, it’s the tip of the iceburg. The math. The intricate building designs. And my god, the physical (and terrifying) explosion.

Once she told me (as she scaled a trash bin and then edged out on to a tiny ledge nearly flush with the wall) that things like this were dangerous. In fact she said “Dis is so dangerous, mama, but I yove it.” And I said, “Yes, it’s dangerous, but sometimes dangerous is also fun.” See above about keeping my mouth shut. She is fearless about retaining walls with dizzying drops onto concrete. We are constantly catching her arms to get a better grip, bracing for a wrong step. Convincing her to look the other way, that she doesn’t NEED to balance on top of that fire hydrant. This weekend, she tried to shove my hands off of her legs as she attempted to spring to the top of a railing overlooking a river. She’s so FAST. Does every parent have a disaster plan for the emergency room?

Some folks dread Mondays. Sometimes I’m among them. But my dangerous, smart, four-year-old is safely tucked away at school, unleashing her particular brand of discovery onto other people. And, thank goodness, I can take a deep, predictable, breath.

It HAPPENED.

You guys.

YOU GUYS.

Holy fucking shit.

My child hasn’t had an accident in almost two weeks. You guys. I can’t even.

little-engine-that-literally-cant-even

This is my new favorite. I work with a lot of college students.

Let me tell you, this is one of those times. Those times that you think, we are so. lucky. So incredibly lucky to have modern medicine. To not only have modern medicine but to have upbringings that have allowed my wife and I to not take no for an answer. To stand up to a doctor and say no. This is not working. Try something else.

I don’t take that lightly. My wife’s mother did something really excellent when she raised her. She helped build a strong person that isn’t afraid of authority and doctors’ cool competence, a person that can listen and then make a reasoned argument, a person that is able to push back firmly and politely and gets shit done.

I’m all over the place here. It’s shock.

The more we thought about our visit with the occupational therapist, the more convinced we became that this wasn’t the angle. At least, not at the outset. We did make RR a schedule with pictures and we considered the ultra expensive body harmonizing music and equipment she recommended. But our guts said this didn’t seem sensory. In fact, the OT said, “well, she could be mildly sensory-seeking but probably we aren’t seeing many signs because she’s so smart” Dude. No one has ever NOT said that. She’s smart. If this is flattery, we’re not having it. If it’s not, it’s still not helping.

A few days after that we were able to get in for an ultrasound of her essentials and a visit with a resident. As I sat in the sparkling new children’s hospital and watched her play, I felt that old tugging, the one that must run in my family blood (or at least that my mother ground in), the one I thought I’d therapied out, that we didn’t need to be there. There is nothing really wrong with her. Other kids need this time more. And then she peed her pants, oblivious.

The urology folks pumped her full of juice and she was not, I don’t think, scarred by the ultrasound. Everything was so perfectly normal, right down to the type and quality of flow she has. I had such a sinking feeling, sitting there, knowing that I was wishing there was something mildly, fixably wrong, and feeling absolutely horrible about it. For RR’s part, she held it together through the full two hours and Debra handled the end of the appointment when I had to run (unrelated to feeling absolutely horrible).

They tried to counsel good nutrition. I’m glad I wasn’t there. Yet another lecture from a doctor based strictly on what they think they should say and not at all based on fact would have put me in tears. She eats more vegetables than most people I know. She drinks water. It’s like prison over here. Fortunately for all of us, my wife chimed in with a thank you but also really, we have tried everything (though she said this in a much more articulate way). EVERYTHING. Is there nothing else?

And it turns out, there is. I’m sure there were lots of reasons why it took so long to get here. To a medication for incontinence. To bank on the chance that some spasms were making it so that she couldn’t hold it and hadn’t ever learned what it felt like to hold it. Couldn’t hear her own body telling her what needed to happen when. Not because she wasn’t listening or didn’t care or wasn’t smart enough or didn’t like the way it felt or liked it too much. No. There is actually a solution.

I’ll admit, after getting a last-ditch prescription, we were a little reluctant to take the plunge on a medicine not typically given to kids. We went into the weekend waiting for a call back from our super-but-where-the-hell-was-she doctor. And so we did it. We gave it to her. And one day bled into the other and then there I was, a week and a half later, realizing that I have a potty-trained child. No accidents during the day. She interrupts her work to go. She poops. She pees. She doesn’t leak.

I cannot tell you how amazing this is. She still wears a pull-up at night and you know what, she can do that until she’s 40 if she wants to. Accidents in the daytime were holding her back in so many ways. I’ve seen tears in her teachers eyes over this. This is a miracle.

Elsa

RR has never been that kid, the one who wants to be a part of something bigger. She is a tiny, self-contained, ball of fire. She burns bright until she flares out, sleeps, lights again. Not a joiner, but a maker. Not a follower, but a watcher. Parts age and parts personality, right?

This Halloween she dressed as Elsa and we tried the large, kids’, costume event in town. We skipped it last year in favor of our own sanity. The draw is the festivity and the joy of seeing so many kids and adults celebrating. She enjoys candy, but as we all know by now, is not particularly motivated by it. What’s the key, RR? What IS your motivation?

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So we were there for the atmosphere and she soaked it up. She got to practice trickortreat…thankyou…happyhalloween! on college kids who thought she was terribly sweet and adorable. And she got to mingle with hundreds of other terribly sweet and adorable children. And also, a million Elsas. There were large Elsa and small Elsas. Storebought Elsas and cobbled together Elsas. Blonde or bewigged. Tiaras or not. Gloves on some. Snowflakes on others. Anything went, so long as there was a somewhat blue dress involved. Many were accompanied by Annas or Olafs (big and small, particularly favored by the Dads). Some were friendly, others were in the candy zone – unable to recognize a fellow cheery Elsa or, maybe, a bit flattened by seeing so many others dressed in similar costumes.

swen

There was a Halloween Elsa drinking game. There were a lot of Elsas. We stopped counting somewhere after 21 Elsas and 15 Annas. We gave RR a heads up that there would be other Elsas and rather than seeing it as a disappointment, she looked at every passing Elsa with delight shouting, Hi ELSA! HAPPY HALLOWEEN! She was thrilled to see Annas HI ANNA! IT’S ME ELSA!

elsas

It was a shining moment. RR was an Elsa among Elsas. She glowed. And she was just as happy to leave them and be a single Elsa again. It was a super Halloween. An Elsa Halloween. And RR? Well, it flowed right over her and past her and it’s gone. More chocolate for us!

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Also, thank goodness Grannie can sew satiny fabrics because apparently my costume fabrication skills cease at fire fighters, raggedy ann, hippies, and mermaids.

You’re Not Yistening!

I’m delighted that RR seems to be moving out of the “You’re not YISTENING to me!” phase. For months that refrain has been echoing in every room in the house and echoing in my head. Oh wait – that’s a persistent scream, not an echo at all. An echo requires time in between utterances. She doesn’t comprehend (or doesn’t care about) the difference between disagreeing and not listening. No doubt she has been overwhelmed by a sudden explosion in words. Going back to school flipped the language switch and she has been speaking in paragraphs and chapters. It’s so noticeable (to her and to us) that after reciting the minutiae of falling out of bed in the morning for several minutes, she said to me “that was a LONG talk, mama!” We both were a little awestruck at the number of words spilling from her mouth.

Along with YOU’RE NOT YISTENING, some other babyisms are on their way out. Ls are beginning to make more of an appearance. She’s dressing herself and picking out her own clothes. She makes her bed most mornings, something she began on her own and which I fully support. We also make our own bed – could it be that it rubbed off? Her fingers are lengthening, her arms strengthening. Life is a constant refrain of I’m okay mama! I’m not hurt! after she crashes yet again onto concrete after running at breakneck speed down stairs, over walls, across streets.

She is observant and thoughtful and she still sprinkles conversation with little quirks I’m sad to break her of. Did you heard the violin, mama? I did, faintly, from several blocks away, over the roar of the passing bus. I did. And, my favorite, her diplomatic way for telling us we are flat wrong. Did you fought I said I wanted the window open? I didn’t. Did you fought I didn’t want a cookie? I did. Did you fought I wanted you to keep talking? I didn’t.

We tripped and fell into a princess costume for Halloween. Queen Elsa still rules supreme, having been the drug of choice since we thought we toilet trained her the first time in May. My mother did the stitching this year since I proved inept at cutting satin and making pleats. I’m so grateful to have her nearby. RR even spent the night earlier this month and happily packed an overnight bag to visit her this weekend (even though our stay was just for the afternoon).

She is a treat. An awe-inspiring package of smarts and beauty and laughter. We are so lucky.

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Panic, Brought to You by the Cancer Center

There I was, back at the fucking cancer center.

I approach this annual appointment with trepidation but this year I was mentally armed. I took the whole day off. I scheduled a morning spot, in hopes I wouldn’t have to wait as long. I knew to expect the x-rays and blood work and humiliating nipple stickers. I mentally committed to wearing the ridiculous gown so that they could check all my lymph nodes if they wanted to. I was prepared to inform the cranky intake men in advance that yes, my blood pressure would be high, so that they wouldn’t lecture or threaten. It’s always high, I say, I am anxious when at the doctor. This is an understatement but, unlike my high blood pressure at a routine well visit, none of their business.

It began well enough, considering. Considering the registration desk balked at adding my wife. It only says husband, she said, I can’t use that field. It’s the law, I said pleasantly. I’m sure you can just use that field. We had a tense moment, she and I, but she recovered enough at the end to say congratulations, which I took as a positive sign for the rest of the visit.

In fact, there was no blood work or stickered x-rays. The waiting room was packed but my name was called fairly quickly. The intake person was someone my age who was understanding and reasonable about my blood pressure and didn’t tut at me when I clenched my teeth at the pain of the cuff. She weighed me without comment (I, of course, filled in the lecture about having gained weight since the last visit. I’m beating myself up enough, thank you, I don’t need more help. She deposited me in a room and said I didn’t even need the gown. You guys, it was like I was going to make it through the day without crying. I didn’t even see the colossal anxiety attack coming.

We took a slight trip downhill when the next nurse came in and produced a gown but she did turn up the heat and gave me a second gown and warm blanket. I don’t think I’m so large that a regular gown shouldn’t fit but it was far from being able to close. I pulled out a book to read and distract myself, since the naked wait is usually no less than 45 minutes later. I was pleasantly surprised to the see a resident in under a half hour. And she and I managed all the questions and prodding with only a few measured, deep breaths on my part.

You know though, she and I had the same name. Not only the same, not-so-common name, but the same unusual spelling. Could she have started the visit by commenting? Building some rapport? Would that have halted what was about to come? Could she have become my ally when the whole world got dark on the edges. I think, yes.

And then she left. I waited. Another hour. And, being scantily clad, I opted not to step into the hall wondering about my situation. I had seen the full waiting room. They were surely aware they had an occupied room. And when the NEXT nurse came in, brisk and perky, she acknowledged the wait without apology. They did know. I wondered if this was normal enough for them not to notice. In all though, this wasn’t a big deal. I expected a wait. I came prepared. I was using my keep calm skills. I was mostly okay.

Until I totally wasn’t. It started right around the time of the freezing stethoscope and you should start eating leafy greens out of the blue. Where did the oxygen go? It and my self-control spirited out of the room, and when I opened my mouth to respond, that I do, in fact, eat lots of leafy greens, I simultaneously realized she was lecturing me about the relation of my weight to cancer and making all manner of assumptions about my knowledge of health and my eating habits. I didn’t pass out, but I couldn’t answer when she asked me for the fifth time what my very-obviously-a-crocodile tattoo was and meant. I couldn’t answer because I could not breathe. I leaned over not to pass out, aware that she was asking again. And trying to focus on the other Meridith, the one sitting passively, the one who could have built some rapport, who might have saved me, just by using my name.

And actually, I was still somehow not past the edge. I managed to make a new appointment for next year. I managed to get to the parking lot. I managed to put the car in reverse (though not without fumbling into the wipers, the horn, and the hazard lights) and, as I was about to back up, a probably well-meaning worker began to scold about my space. I shouldn’t park here, he said. It wasn’t marked as maintenance, but apparently it was, and he was undeterred when I pointed out that I was actively crying and I’d like to go. I’m just trying to help you out, he said. For next time, he said.

My father once took my keys when I was too emotional to drive, saying that it was just as bad as driving drunk. So I was tried to hold it together for everyone else that had to drive next to me for the five minutes it would take to get to my wife, who makes everything better. But the worker wouldn’t move from behind the car and I was near to sobbing. I pled with him to please move, couldn’t he see he was making it worse? He was disinclined to hurry.

Some years later, he moved and I made it to Debra, completely in humiliating pieces, and she took me home. I’m trying to decide what the impact will be if I refuse to go back and then get cancer again and HAVE to go back having not been. How much worse will it be then? Weighing mental health and preventative health, how much difference is it making to visit the cancer center AND a dermatologist AND a general practitioner on the regular? As we have now moved to what counts as an glorified skin check, how much preventing is this step doing?

My brain was fuzzy for days after the visit, as if my memory and response time had short circuited. That can’t be healthy. I’m typically medically attentive but this time, I might have had it. I have year before the next appointment. Plenty of time to decide.

Soiled

Every so often, I catch myself mourning my cute, round, baby with her giant eyes and solemn outlook. Most of the time, I love her spring-loaded self. One solid strand of muscle devoting equal intensity to chasing, jumping, climbing, coloring, sleeping, and eating. Her flexibility always surprises me (mama, why aren’t there mushrooms on my pizza? a) mushrooms? b) totally mellow when I shrugged). While there are fits pre-loaded for appropriate times, they are nearly predictable and nearly always involve the potty.

You guys. She is now four and some. She is STILL not potty trained. What was mildly concerning and mostly frustrating is now baffling. Why doesn’t she get it? At least the deposits (of both kinds) occasionally make it into the toilet, but a good day is often followed by four accidents in 3 hours or some other feat of bladder/bowel olympics.

As you would, we’ve checked any constipation and tried every training technique in the books. All the books. As we rounded the corner on four we were in constant communication with the doctor. We’ve all been on the same page (all of us but RR). The hold-up doesn’t seem to be medical although we’ve made an appointment with pediatric urology. We were both reticent to go that route, having had our own fights with our bodies early on and the mental scars to match it. There’s plenty of time though, the earliest appointment we could get was for March.

March.

One of her teachers has been concerned about a sensory hiccup and recommended an occupational therapist. We again held off (until now) since by all reports she has zero other indications of another sensory issue. At all. Anything. Except this. We’re off to see that person on today. I am hopeful that she will have a suggestion transcending a sticker chart (her initial reaction) which, you should see RR approach a sticker chart, the disdain. The utter indifference.

RR cannot be swayed.

Some days we go through six changes of clothes. Other days just one or two or none. Of late, now and then, we lose our ability to be balanced and both of us at separate times have been frustrated with her. She and I had a lengthy talk while she angrily sat on the toilet, her insisting that she didn’t have to go and me insisting that she try, given the damp state of the panties I had just stripped off (yes she normally does it, yes I’m usually more sane). I gave in and told her all of the things I would normally not say. That she is smarter than this. That at that moment her brain knew better than her body. That she needed her smart brain to tell her body that it has to try harder. And I walked out and shut the door.

As I criticized myself up and down for that reaction, no matter how measured my tone, I heard her tiny voice piping through the door, talking to her body. explaining. She was earnest and lengthy. She peed. A lot. This is one of the hardest things I’ve ever done. I can only imagine how she feels.

As much as I would like to say that discussion (hers and mine) closed the door on this business, yesterday happened as normal. Damply. This is an endless stress in our home between my wife and I and us and our daughter. There are plenty of good things. But this thing. It’s maddening, saddening, frustrating, baffling. I hope one of these appointments helps, because time and neutrality (and stickers and rewards and pre-rewards and encouragement and self-care and indifference and so on and so on) hasn’t been.

Everything

I still honestly can’t believe I’m married. Maybe that’s why newlyweds take honeymoons. At least there’s a life interruption that says hey lady, shit is different around here. The only thing that feels different around here is an invisible identical everything.

We’re beginning of the week shoppers. Come the weekend, we make a grocery list and plan menus. Often we give up on a meal but, for the most part, we stick to it. We’re also forgetful and so sometimes it means a quick trip out for a vegetable or lunch the next day or cake. We obviously eat a lot of cake. Debra is usually the runner outer and every single time she walks out the door, I wonder what will happen if she doesn’t come back. Will a terrible accident mean I lose both my wife and my legally-not child? How quickly would social services arrive to take her away? Obviously I’d miss my wife and my cake but RR, taken in the night, I can’t even breathe. Marriage hasn’t made her mine, but it has made me the most logical choice in a tragedy, even by the most callous of social workers.

On vacations in friendly places, we hold hands. Sometimes we kiss chastely in the street. We give ourselves the chance to wonder what it would be like if no one cared. While people probably still care and some of them, even in our excellent community, are offended, we are now legally entitled to be married. It hasn’t changed them, but it has changed us. We’re bolder, more willing to blame them and not ourselves if they are offended. You’ve probably reached this point, the point of not caring, long before we have (in whatever part of your life you’re anxious about) but for me, this feeling is novel.

I find myself saying thank you frequently. To acquaintances and strangers, people who have recognized us from the press. It’s unnerving, the casual eye-contact and recognition, especially when someone doesn’t verbally acknowledge that they’ve seen me before. I’ve changed my response from “Oh, thank you!” to “Thank you! I’m Meridith” and sticking out my hand. It seems to make a difference. See me, it says. I am friendly, it says. I am just like you.

It’s every moment. The ones when people aren’t looking and the ones when they are. It’s half wanting to yell from the rooftops and half quiet this is rightfully ours. It’s wanting to talk about it forever and knowing that moment has passed (sorry, folks). My soul is soaked in tears – of happiness, of disbelief, of amazement, of gratitude, of notice me I am changed. But unusually for me, all the tears are being shed inside, for better or worse.

The fabric woven from my life was already erratic, marked with knots and tangles, thread changing color and texture midstream. This is the gaping hole closed with lace and fine stitching that you notice once but that I run my hands over every single day and will, for the rest of my life. Everything is different.

 

 

 

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