Days in the Sun

There will be a few entries to this journal that will stay with me when Lilah turns 18 and I print it out for her, conversations with myself, like phone calls to the imaginary mother I have in my head. The imaginary woman I always ran to when everything was just too much, who talked me down and gave me love. Now, I know that it was just Older Me, comforting Younger Me, telling me it would get better, telling me I was strong enough, fitting the shards back together every time my heart broke, telling me to snap out of it and grit my teeth, to disassociate, to get through the hurt, surgically removing the parasites from my life when I wasn't strong enough to do it myself. I was the mother I always wanted, and the mother I resolved to be for my child. Incidentally, it was always that Mom voice who would pry my fingers away from some unhealthy thing I was holding on to and afraid to lose. Like all good mothers, she's never wrong. This will be one of those entries that is not for Lilah. This is one of those conversations with myself I need to have. Not because it's private. I don't really care who knows it. Shame is something I gave up in 2017.

"There is no justice in the world." That is one of the things my Mom voice keeps telling me. Don't waste your energy on anger. Life is exhausting enough on its own. You lose sleep while the people you're angry at slumber away. On the other hand, and seemingly contradictory, I hear...

"Don't feel shame". Other people's hangups are not your problem. Go with your gut. Your initial response is rarely wrong. It's been honed through years of Fight or Flight. Trust your instincts. If your initial feeling is joy, don't let others take it. If your initial feeling is trepidation, don't blindly trust whatever is happening. 

"You're a queen." This was a hard one. The voice told me my whole life that I was stronger than I felt, and had to push through all the hurt and emerge intact, because there was a life on the other side of the nightmare that was worth living, a little kingdom to rule, a little royal to bring up strong and healthy. "Don't concern yourself with the opinions of the rabble." Ignore the small minds. They don't matter. I listened, and trusted, and pushed through until I emerged in a sunny meadow, like Rapunzel coming down from her Tower. And just like Rapunzel, I fought the urge to immediately go back for so many reasons. The people I'd hurt. The fear of the unknown. Not being strong enough to succeed outside those walls. The voice told me to push through. I was worthy. I deserved my days in the sun. It's still a daily, sometimes hourly battle. The voice told me I had to start rejecting behavior that was beneath my dignity. Call out misogyny where I see it. Be willing to throw down over sexual harassment. "There is absolutely no reason you should accept mistreatment." I made a promise to myself to be fearless in rejecting it. 

Unfortunately, finally learning to heed my inner Mom voice was a major factor in my marriage's ultimate demise. It's no secret the Lilah-related reasons I left. It's been harder to vocalize the reasons I left that were about me. Things that made me unsettled in 2008 were raging like wildfires in 2015. The more distance I have, the more clearly I see what went wrong. I definitely had a role to play. I enabled. I coddled. I micro-managed. I parented an adult. I accepted. I stayed silent. I feared loss so I did nothing. I treated symptoms, rather than the disease. My approach to the issues in our relationship was like going to Urgent Care for Stage 4 cancer. Ineffective and ultimately deadly. I've been working hard on identifying and correcting those unhealthy patterns in myself. One of the most influential people in getting me to trust and heed my inner Mom voice through all of this has been Ben. Not once has he tried to step in and solve a problem on my behalf. Instead, he's encouraged me to feel the full spectrum of my emotions and held me through the pain of it, even when I thought it would break me (it hasn't yet). If it got to be too much and I'd check out of the pain to cope, he gave me the space to breathe, to come back to it when I could handle it, to try again. 

There are some hurts that have seemed too big to face. I'd been handling the divorce like a medical procedure. Sterile. Successive. Cauterize. Anesthetize. Suture. There were very few days of breakthrough pain. The day last winter when I filed paperwork, I sat sobbing in the courthouse parking lot, listening to "She Used to be Mine" by Sara Barreilles. I cried for the girl who bit holes in her cheeks and cut gashes in her arms with sharp rocks to get through the nightmare that was childhood because she believed she'd get a happy life Somewhere Over the Rainbow. Instead, there was just a woman broken into piece, and a little girl in pain, and a man who was drowning in his own sickness and blind to anything else.

"It's not what I asked for
Sometimes life just slips in through a back door
And carves out a person and makes you believe it's all true
And now I've got you
And you're not what I asked for
If I'm honest, I know I would give it all back
For a chance to start over and rewrite an ending or two
For the girl that I knew

Who'll be reckless, just enough
Who'll get hurt, but who learns how to toughen up
When she's bruised and gets used by a man who can't love
And then she'll get stuck
And be scared of the life that's inside her
Growing stronger each day 'til it finally reminds her
To fight just a little, to bring back the fire in her eyes
That's been gone, but used to be mine."

I resolved in that parking lot to light a match and guard it with my life. Not just for Lilah, but for me. I needed my fire back, and I wasn't putting it out for anyone. And the fire grew. The hurts that were too big to face stared back at me from the flames, and I could acknowledge them, feel them, allow them to be without them consuming me. 

To the man I'd promised to love forever, how could you? I stayed through the unimaginable. You left our newborn to cry in her crib alone, throwing things and breaking things, rather than address your anger and anxiety. You were short tempered and harsh with her until she was so fragile she'd burst into tears if anyone gently corrected her. Toward the end you were so explosive that you shoved or grabbed her, not even realizing you were doing it. You pushed me off on other people if I wanted your attention, telling me to get it elsewhere, because you couldn't deal. I always came to you first if I wanted to go to a movie, go to dinner, go anywhere. If it didn't interest you, you couldn't be bothered. If I brought up that I wanted to spend time with you, you told me I had the best of both worlds, being able to do what I wanted but not have you be forced to do something you didn't want to do. You exploded in anger and threatened violence. In the end, you told me you were relieved I finally figured out we should separate. And after we did, my god. You were sexually and physically aggressive. You tried to tell me how to sit and how to dress in my own home, because you couldn't control yourself. You called me a fucking bitch within earshot of our daughter. You didn't pay a cent to keep a roof over your child's head, feed or clothe her, until there was a court order forcing you to. You asked me if I knew any single girls, for dating advice, all the while neglecting the love of the one little girl who actually mattered. You didn't notice when she was covered in bug bites. You told her you'd go on a field trip and she was overjoyed, only to tell her the day before that you'd let it slip your mind, and you'll go next time. I spent hours that night holding her while she cried and said she didn't even want to go to the zoo anymore. Never once have I told our child what I think of you. I've stroked her hair and let her feel her feelings, gritting my teeth in silence. She sits in front of the TV with you after school, happily reporting how many episodes of mindless shows she got to watch. I spend my evenings being the militant parent, an endless cycle of homework, violin, dinner, bath, bed. On your weekends with her, you sit around or go to your family's house. She asks to go to the zoo, the park, see her friends. You do nothing. You won't go to school events because they make you uncomfortable. You didn't go to curriculum night, or her Meet the Teacher night. You are a constant disappointment to her and her solo time with you consists of chicken fingers and TV. I never say a bad word about you while that child is present in the house. But you should be ashamed of yourself for not being able to emerge from your cloud of disillusioned self pity and anger to care for your only child. It's rough all over, buddy, and there was no one on standby to parent for me while I processed my feelings. You didn't get up with her when she was up in the middle of the night for months on end with separation anxiety, afraid I'd leave. You're not there when she's sick. You don't go to doctor visits with her. I have teen babysitters who take more care with her than you do. You call me a bitch, you live like you're trying to send yourself to an early grave, yet you have the audacity to ask me for medical and dating advice?

To the people who were my family, I'm astonished at your response. I kept so much of it from you because I thought I should be enough to handle it. But now you see it all. And still, I can't believe the choices you continue to make. You've supported him emotionally, financially. You're trying to snuggle him back to health. Let me just tell you, that approach will get you nowhere. I never expected you to choose me over him, but I did not expect a shunning. I didn't expect you to leave me rudderless and in pain, barely able to drag myself out of bed from the sadness, wearing clothes with holes in them I couldn't afford to replace, crying because I could see Lilah needs new shoes and pants because she'd grown and having to wait until another paycheck because I couldn't afford them this month. Lots of soup and PB&J. Worrying about the peanut butter ban at school in the Fall because turkey and cheese sandwiches weren't in my price range at the time. Me telling you how your family member is treating me and being told "Well, he's hurting." So was I, but I was not abusing him. When I made the only call I could, which was to move in with Ben and share expenses while I sold my house, you felt betrayed, although you offered no alternatives. When this man who has helped love and support Lilah while her father drinks away his existence asked us to stay with him forever and I said yes, I felt your response palpably. I lost my real parents and siblings a long time ago. I never expected to lose the people who looked me in the eye and told me I'd always be family, no matter what. Who told me I'd always be a daughter, a sister, no matter what my relationship status was. Who stopped speaking to me when things went awry. And why? Because I hit him? Berated him? Threatened him? Called him names in front of our daughter? No. Because I played the only card I had left, and still lost everything. Because the only way I could swim out was to stop trying to save someone who was insistent on drowning. Because I took a few tentative steps towards happiness and health. I'm not telling you how to feel. You do you. But the fact you're upset with me and act like I'm the one who's done the unthinkable, committed the unforgivable, just because I left, it tells me a lot about your character. Losing you won't break me. I've lost others more dear to me. It hurts like a motherfucker though. And you knew better.

Lilah tells me everything in her heart, like how listening to Adele reminds her of her daddy. "Hello" reminds her of how he broke my heart. "Make You Feel My Love" reminds her of how she wishes her daddy knew that's how she felt about him. She was watching Frozen and when Elsa thawed Anna and Olaf said "An act of true love can thaw a frozen heart," she walked over to Ben and said "Like you did for Mama." I'm trying to do for her what Ben does for me. Hold her while she feels her feelings and trust that she'll come out on the other side, intact, whole, and healthy, with closure and peace. 

And now, here I am. On the brink of a totally different life. Most days, the Mom voice is quiet and proud. When I do hear it, I heed it immediately and don't doubt it for a second, no matter the fallout. It got me this far. I don't live for the relief I feel when the person next to me finally falls asleep. I don't have to put myself between him and my child, taking whatever verbal anger was directed at her and absorbing it. Our house is the little kingdom I was born to rule. Every day I'm treated like the queen of his life, and I'm not willing to accept anything less at this point. I have no need to seek attention anywhere else because if I have a need in our relationship, he meets it. If a day comes that I'm berated, mistreated, called names in front of our friends, talked down to, that will be the day I say goodbye. Until then, I'll spend my days in the sun. The occasional shadowy cloud blocks it out, but it's usually just a ghost of my own deep feelings of unworthiness in finally living the life I always wanted, or it's someone else trying to project their own unhappiness into the sky over me like a Morsmordre spell to conjure the Dark Mark. Now I can live, and love, and sing, and thrive. 

"Oh I could sing

Of the pain those dark days bring

The spell we're under

Still, it's the wonder of us I sing of tonight.

Days in the sun

We must believe as lovers do

That days in the sun

Will come shining through."

Dear Lilah,

I'm sitting by myself on the eve of your 8th birthday. Already crying. Go figure.

So much has happened this year, my sweet love. To you. To us. The biggest one being the shift in your family. Fault lines that started as hairline fractures widened to chasms this year. I ache every day hoping one day you understand. You'll never know how much it hurt me and Daddy to make the choices we made this year. I do hope you understand how hard we tried. This time last year we were prepping you for your MRI. We were tentative and rocky from the hard winter we had gone through, and we tried so hard to keep you from seeing what was happening, what we were trying to keep from happening. I remember telling your dad while you were sedated that no matter what had happened with us, I was glad I had him there with me. That I couldn't imagine sharing that scary moment in parenting with anyone else. That is still true. There will always be moments that I can only ever share with Daddy.

Family looks different this year. I know. I feel it too, and it hurts me. When you get out of bed a thousand times a night, just making sure I'm still home. When you cry at night for Daddy. When you're upset if I leave for a meeting. When you yell at him and are so angry because he isn't home anymore, even though it was me who asked him to leave. I feel you, little girl, and I'm so sorry you're hurting. You have grown so much this year. Not just your body, but your spirit grew too. A year ago, if there was a slight change in your routine you would dissolve. Now you're learning to handle transition with grace. Your insight on the world teaches me new things all the time. Your empathy and compassion grow every day. Your strong sense of justice and loathing for anything unfair, sneaky, or cowardly inspire me. There were days this winter when I struggled to get out of bed. Days I cried and you stroked my hair. Days we cried together. I'm sorry you had to go through this but I never could have done it without you. You're the reason I get out of bed. The reason I'm strong. The reason I live without bitterness or regret. The reason your dad is working hard to be healthy and happy. It's all you, babe. You make us so much better. I know parents say "I gave you life", but you gave me mine. Any good there is in me I see reflected out of your blue eyes and I can't regret a single second of my life that brought me to you.

8 years ago tonight I was napping on the couch. Uncomfortable. Irritable. Impatient. Daddy was on his computer. You'd been in there too long and I wanted you out of me. It wasn't until the next morning that all the pain was a foggy memory and the last 294 days were a speck on the horizon, because I had you in my arms, looking at me with purple blueberry eyes. Your skin on my skin sparked magic between us, little one. I hurt when you hurt. I feel joy when you do. We became connected at the very heart of me, even though the cord that connected your body to mine was cut at that moment.

There is no guidebook, Lilah Rose. I don't have a mother to call and ask if I'm doing this right. I don't have a grandma fussing over you catching a chill or telling me how things were when she was raising her kids while I roll my eyes. I'm winging it every step of the way, and all I have is my intuition. I'm not always right. I'm so far from perfect. But everything I do is for you. I'd fight whoever I had to for you, serve on committees I hate to make your education better. I'd march through the city streets to show you no one can take away your power. I'd go to countless hours of specialist visits and IEP meetings to make sure the world understands how you learn, instead of them asking you to learn like everyone else. And when it came down to it, I'd burn down the life we built for you, if I thought it was the only way to save your relationship with your dad. I can't say I'd do it without a second thought. Because I have them. Every day. And oh, so much guilt and fear. But you're so strong, little bird. And so brave. You're amazing. And tomorrow, you're 8. It's the greatest honor of my life to be yours.

With all my love,
Mama

HamiltonChi

After a year of listening and months of waiting, this was Hamilton Week.

The first time Lilah heard The Schuyler Sisters, it came on her "Broadway Pandora" station. A rapping Aaron Burr introduced the little-known daughters of the revolution, women who would subtly and powerfully shape a newborn nation by bending the ears, hearts, and *ahem* other organs of the men in charge of it. They were young, beautiful, and "looking for a mind at work". She pulled it on up YouTube and listened to it on repeat every morning while she got ready for school. After a few weeks, she expanded to more of the soundtrack and was fascinated by the characters, the stories, the lives and deaths of these real-life heroes. Over the course of the year, it led to conversations about politics, gender equality, immigrants, race, finances, friendship, loyalty, and the complexities of the human experience. During a volatile election year, she made sense of the world of modern politics through Hamilton-colored glasses. We prepared to say goodbye as Obama led the nation "One Last Time". She said to me in the car one morning, "This year, we can either vote for Hillary Clinton, or Aaron Burr." As an added bonus, we could all glibly rattle off important dates from the Revolutionary War, and she learned snippets of the Declaration of Independence, Bill of Rights, and other famous works.

It was a miracle we got tickets, but we did. We watched for months as the Chicago cast posted pictures and short video clips on Instagram. I bitterly assumed that it would be great, but they wouldn't hold a candle to the original cast. We got our HamilTees in the mail, each with a favorite quote from the show. We drove to Chicago, planning to stay overnight with friend in Boystown. Stepping off the bus onto State and Monroe in the Theater District, all the street pole banners displayed Hamilton silhouettes on that familiar gold background. I pointed up and Lilah started making a high pitched sound and clapping her hands. We located the theater and I wanted to take pictures in front of the marquee. I hesitated, seeing a small crowd of well-dressed adults in front of the theater. Then I saw one young woman move away from them and pull the man with her against the Hamilton wall out front. They both put on matching t-shirts and hats and took pictures. I didn't feel as shy after that.

We had dinner and drinks with friends, and walked to the theater. It was smaller than the theaters we'd been to in Detroit, but old and beautiful. We made our way to our seats about 20 minutes before the show started. Lilah clutched her playbill to her chest and made more high pitched noises. I felt like making them myself. When the lights went down, we heard the familiar eleven-note introduction, with those final four strings notes that make you feel like you're leaning in to listen. Lilah's eyes were as big as tea saucers.

By no means am I a theater critic, but I can give my take on the Chicago production compared to original Broadway cast soundtrack.

Burr was sublime. I honestly liked Joshua Henry better than Leslie Odom Jr. His voice was rich and colorful, but he took the guarded and cynical Burr to a different level. His "Wait For It" and "The Room Where It Happens" had so much energy, the air felt like it was vibrating. His performance was flawless.

Jose Ramos was the Chicago John Laurens/Phillip Hamilton. His intro in "Alexander Hamilton" gave me shivers. In both roles, his voice could have melted chocolate. It was so sweet and warm. I think his Laurens performance (especially the non-soundtrack "Tomorrow There'll Be More of Us") was amazing. Phillip's role was almost a background character through most of the second act. NYC's Anthony Ramos was a little more dynamic as Phillip.

Lafayette/Jefferson are two roles I was dying to see how Chris Lee would handle. Going from French nobleman to cocky Southern plantation owner, all while rapping a mile a minute would be a challenge for anyone. As Lafayette, he pulled a believable French accent. It wasn't Daveed Diggs, where every inflection was perfect. But I didn't complain. In "Guns and Ships", Dano pointed out his tendency to toss a French inflection on the end of a phrase instead of carry the accent the whole way through, but clocking 6.3 words per second while maintaining a French accent is tricky, and I can forgive him for slipping. As Jefferson, oh my god. He was cocky and mocking and hilarious, but also sneaky and brilliant. You felt like he truly wanted what was best for America, he just differed vastly from Hamilton on what that looked like. The Cabinet Battles had me laughing out loud. His body language enhanced the entire role. He had swagger.

Hercules Mulligan/James Madison were played by Wallace Smith. He lacked Okieriete Onaodowan's looming, bulky presence on stage but his voice made up for it. He brought more depth than the soundtrack afforded to the stuffy James Madison role.

Miguel Cervantes' Alexander Hamilton made me feel very conflicted. His voice broke my heart. It blew Lin's out of the water (those are fighting words, I know). Any time he opened his mouth to sing, time stopped. Songs that never impressed me like "Hurricane" had me absolutely spellbound. His speaking parts, however, were a little lackluster. We did go to a later performance, so it was possible he had performed earlier in the day at 1:30. He was just a little monotone, whereas Lin-Manuel Miranda's Hamilton shook you with emotion when he spoke or rapped.

Chicago's Eliza was Ari Afsar. She was lovely. Not the ageless beauty of Phillipa Soo but beautiful and her voice was perfect. Dano pointed out that her singing Eliza was on point, but her acting still needs a bit of tweaking. It's her first acting role, so I feel like she's still finding her stride. She tended to overact some of her more emotional lines ("Sept, huit...") and didn't have Phillipa's subtle, raw emotion.

Jonathan Kirkland as George Washington filled the room with his presence (he was super tall) and he was great, overall. I absolutely prefer the rich baritone of Christopher Jackson, but Kirkland did an excellent job. Just slightly more theatrical than Jackson's impressive moral authority figure.

Alexander Gemignani's King George was great. Of course he was no Jonathan Groff, but is anyone? He was crazy, intense, and hilarious. The benefit of show vs. soundtrack is seeing him on the sidelines of The Reynolds Pamphlet enjoying the first American sex scandal and relishing in the show, tossing pamphlets into the air.

Peggy Schuyler/Maria Reynolds was played by Samantha Marie Ware. At first glance as Peggy, I was thinking "How the hell is she going to pull Maria?" She had a pronounced pout and sassy defiance as Peggy. She couldn't be bothered and was super annoyed with her sisters. In Act II, pouty little sister was gone and she sashayed onto the stage, every inch a seductress. She didn't have Jasmine Cephas Jones' curves, but she had her powerful voice. Her line "If you pay, you can stay" could have broken glass.  I was also happy that "Say No To This" wasn't explicit in any way, visually.

Last of the main cast, Karen Olivo's Angelica Schuyler. Holy. Shit. She brought a depth of feeling to Angelica that I didn't even realize Renee Elise Goldsberry didn't have. Where Renee was strong, powerful, and independent, Karen's Angelica was a little sweeter, but cut even deeper with her "God, I hope you're satisfied". She was just as powerful, but with a twirl of a parasol, nudged Hamilton in the right direction with her hip instead of giving him a firm push with both hands. "It's Quiet Uptown" made me want to cry. She didn't play Angelica. She was Angelica.

And last, the thing that made the show most memorable to me. The Ensemble. Their choreography, singing, and presence around the stage, whether leaning from the set balcony, strolling around the turntable stage, or carrying the bullet that would kill Hamilton in the end, those people made the entire show. Their talent blew me away and they don't get the credit they deserve for making Hamilton what it is.

When we stood and clapped after the final bow, we all left the theater with massive smiles on our faces. I would love the opportunity to see it when it comes to Detroit next year. Lilah made it onto the 146 bus and fell asleep on my lap, fingers curled around her Playbill. I hope it's an experience she doesn't forget. I know it's one a lot of people would love to have but can't. I know it's one I'll carry with me for a long time. I'm still on a Hamilton High.

Bird flies south

We had it all planned out.

A friend and I were taking the kids on a 5 day road trip down south. Our plans included hiking and caving and just generally adventuring. But kids will be kids, and one of them got sick and we had to cancel Sunday night. We had been scheduled to leave on Tuesday. I knew Lilah would be so sad, and I'd already taken the time off work for a "last hurrah" before summer was over. I talked it over with Dano, and he said he thought we should still go and do SOMETHING from the trip. He told me not to overdo it, but to head south and do some things before making our way home. Spontaneity makes me itch, but I agreed to try it. I packed right then and waited for Lilah to wake up Monday morning. She took the news pretty well, and we loaded up the car with our bags and a cooler of food and hit the road. The cooler had "adult lunchables" from Western Market (cold slices of salami, cheeses, baby gherkins, stone ground mustard, and a square of dark chocolate), juice boxes and water, frozen tubes of yogurt, and granola bars. I figured we'd be set for car snacks and a couple of meals with all that.

I'd picked up Wildwood on Audiobook at the library. It's the story of 12yo Prue McKeel of Portland, OR. Her 11mo baby brother Mac is abducted by a murder of crows and taken into the Impassable Wilderness, known from the inside as Wildwood. She goes after him and adventure ensues. I thought it would be good for a trip like this, both in theme and length. It was 15hrs, and our trip was 24. That left time for some good music and, invariably, Hamilton.

Saoirse the Spaceship (my new hybrid) had done excellently on our recent trip up north, and outdid herself on this trip. On less than a full tank, we didn't have to stop until we got over the Kentucky border. I fueled up Saoirse and Lilah got out to stretch. We went into the station to use the bathroom and I bought a cherry vanilla Pepsi. While waiting in line to pay for it, I was startled by a voice behind me.

"Any good?" I turned around. A black man about my age with an guileless face and friendly smile was gesturing to my flavored Pepsi. "I always think about trying one, but you just never know, you know?" I shrugged and smiled uncomfortably, saying I liked them.

It was my turn in line, and the rotund, mustachioed white attendant drawled, "That all, hun?" I groaned inwardly, forgetting the familiarity of the south. I nodded and handed him some money. He was still grinning while counting out my change, but turned his attentions to Lilah. "Now why aren't you in school, darlin'?" We were both startled by that question, which he repeated, looking at me. I told him we were from Michigan and school hadn't started yet, keeping to myself the fact that it wasn't any of his business either way. I took my change and backed away from the counter, allowing the man behind me to take my place. Pepsi Guy smiled warmly at me and told me to have a good day. I nodded and he turned to the counter and the jovial grin of the attendant faded to just less than a frown and in return, the face of Pepsi Guy went from kind to guarded. He asked for and received a pack of cigarettes with as little speech as was required for the transaction. It was a startling change and I felt jarred by it, confused. Getting back in the car, I looked at the green pickup being fueled up next to me and saw a Confederate flag displayed proudly in the window. A drastic culture shift was less than 4hrs to the south. I can't say what I had witnessed was impossible in Michigan, but I can say it wasn't an ingrained part of the culture where I live, whereas referring to a black waiter in a restaurant as "Boy" was something I'd heard frequently in my days as a waitress in Nashville. No one batted an eyelash.

We continued on to Cave City, Kentucky before stopping for the night. We checked into a hotel by the interstate and in unpacking the Saoirse, I noticed the roadside shack next door. It proudly boasted discount souvenirs (all souvenirs in Cave City appeared to be rock related, like geodes and polished stones), homemade jams, jellies, and relishes, and flags. Only Confederate flags were displayed. #patriotism?

Lilah and I grabbed a quick snack and headed to Mammoth Cave National Park. We had arrived just in time for the last tour of the day. Lilah poked around the Welcome Center. I was surprised at how not-touristy the place was. Some hoodies and keychains for sale, but the price for the tour was under $15 for both of us combined, and parking was free. Our guide came along and lead us down a descending path through the woods. He was sweet and full of dad-humor. We rounded a corner to the opening of the cave and the temperature dropped from an oppressively humid 90 to a refreshing 54 degrees (so we were told). We entered the dimly lit cave, Lilah holding tightly to my hand and whispered that she was feeling anxious.
"I'm taking deep breaths to control my emotions." I stifled a laugh and gave her a thumbs up. We saw mining endeavors that had taken place during the war of 1812, all of the materials perfectly preserved inside the cave. The guide mentioned that the mining had been so difficult and backbreaking, most workers hadn't lasted more than a day. "They ended up having to bring in an upwards of 60 slaves to complete the work." Lilah looked at me with wide eyes. Having just heard how terrible the conditions had been in the mine, it was unthinkable to her that they could bring in people forced to do the work. He also mentioned something about how in early America, only white men could vote, no women or black men. I'd missed the segue into that conversation, but Lilah shot another glance at me and I nodded ruefully that it was true.
"Well that's the worst idea white men ever had," she muttered. Two men behind me cracked up. They started poking at her and harassing her about why she wasn't in school, and how she had a lot of opinions. She vacillated between disapproving glares and nervous smiles. Her face was an ocean of anxiety over how to handle these inquisitive strangers. She'd finally had enough and said, "Only my mother is the boss of me," pointing to me. They laughed and told her she was going to be amazing at 13. She scooted behind me. She listened intently to the guide talk about the limestone in the cave, and the geology of cave formation, and how bodies of Native Americans had been discovered down there perfectly preserved. My heart felt tight when I heard how artifacts had been removed from the cave by wheelbarrows and disposed of in the 1800s in transforming the caves into mines. A generation back, when a guide had discovered the body of a Native American crushed under a boulder, the body had been removed, studied, and displayed in the Welcome Center for years. I felt a mild pang of alarm of how it might have felt to a present-day Native American to see what could have been a distant relative, displayed as "Lost John". He was eventually removed and laid to rest in an undisclosed location in the caves. I suppressed an eyeroll as the guide regaled a captive audience with tales of how the guide who had discovered "Lost John" had reported haunting knocks at his door and strange sounds forever afterward.

After the tour, our guide had everyone close their eyes as he turned out the lights in the entire cave. We opened them (me uncovering Lilah's with my hand) to total darkness. It wasn't just dark, it was the void. Complete absence of light, and an oppressiveness that seemed to swallow sound as well. There was no breeze, no insects, no noise whatsoever. The guide flicked a lighter and the rock walls danced with otherworldly shadows. He led us out, Lilah clinging tightly to my hand. After we emerged into daylight and the dank Kentucky heat, Lilah thanked our guide and we headed up the path. Several adults stopped me to tell me Lilah was excellently behaved, including the two men who had been needling her. They said she deserved an ice cream and she shook her head no, saying she was just supposed to be good. A few other kids had been on the tour with us and had fussed and asked to leave. Nothing that I wouldn't consider kid-appropriate behavior, but Lilah comports herself more like an adult and adults tend to like that.

After a quick sleep and a bagel, we checked out of the hotel and headed further south. The runny nose and sneezing I had noticed from Lilah the evening before dramatically increased. Her eyes were reddened and she was sneezing incessantly. I cursed myself for only bringing Benadryl and not Zyrtec, and I mentioned this out loud. A few moments later, I heard foil being broken and looked in the mirror to see her defiantly chewing a Benadryl. I told her it would make her tired and she said she didn't care. I told her how funny it was her allergies had kicked up out of nowhere (and disappeared as soon as we got home), considering Dano and I were living down there when I was pregnant with her. I decided to drive to Chattanooga, and on I-65, I noticed my stomach was starting to hurt. I shrugged it off and kept driving. My throat started to feel tight, and I took a choked drink of water. When my breathing started to get shallow and quick, my eyes darted around and finally rested on an exit sign I knew well from my time living here. My time spent gouging and clawing out an adult life with Dano, time spent listening to Ben Folds, Cake, Death Cab for Cutie, time spent in constant fear and anxiety, in strife with my parents, in devastation at their abandonment, in fear of their retribution, in poverty while in school, in horror to be bringing a child into that nightmare, and in flight leaving to start a new life somewhere else. Full blown panic descended on me and I felt submerged. I heard Lilah call my name impatiently, and I realized she'd called it more than once.
"Sorry," I croaked lamely. "I'm...feeling overwhelmed and kind of sick." She asked if my headache was back and I shook my head. "I'm just feeling...emotional...for some reason." She didn't need the details. She smiled sympathetically and told me to take deep breaths. I tried, navigating us out of that city as fast as I could. I looked at her in the mirror.
"You're best of Mommies and best of Women," she said, modifying a quote Alexander Hamilton used with his wife Eliza: "Best of Wives and best of Women." She quieted, listening to Prue fight her way through Wildwood. I felt once again like my separation from my family had torn this jagged piece from me that time and happiness had polished into a strong, nacreous scar. The toothed edges had smoothed and rounded over time, and this child had been born that perfectly folded into the indentation they'd left behind. She was all light and beauty and strength. She built up what they'd ripped apart and made me whole again.

We reached Chattanooga without further upset. Saoirse gloried in the mountains, hugging the curves of the mountains and coasting the steep grades with ease. It made traveling a pleasure. We bought tickets to Rock City Gardens and Ruby Falls and I bought Lilah some lunch before exploring the gardens atop Lookout Mountain. The natural rock garden was breathtaking, with Celtic music being piped along the path and gnome statues placed periodically stood as sentries. The man-made fairytale caverns below glowed neon and otherworldly under blacklights, and the carnival music on repeat was the stuff of nightmares. The views from the top of the mountain overlooked 7 states. Lilah fearlessly peered over the edge and walked out onto a rock slab. I felt my heart drop out of my chest. She rapped The Schuyler Sisters and danced on the cliffside. She had an ice cream and panned for gemstones, pocketing some amethyst and crystals. On a Tuesday morning, the place was mostly deserted and we didn't interact with many people.

We drove down Lookout Mountain to the entrance of Ruby Falls. In stark contrast to Mammoth Cave, these caverns were extensively touristy. There was wifi even 1000ft below the top of the mountain, souvenirs galore, and much of the pathway underground had been blasted open with dynamite. The falls themselves, though, were worth it. A tiny crack in the rock overhead opened to release a magnificent spray of water that cascaded to a small pool on the cavern floor before trickling in several directions out of the caves. It took 8 hours to empty into the Tennessee River.

I got gas for only the second time on the trip and we drove a few more hours to Pigeon Forge to get a hotel for the night. It was the epitome of kitschy tourist city with souvenirs shops and dinner shows galore, and apparently all of it was "Dolly (Parton) Approved". Shops boasting "genuine Indian items" dotted the plazas. The Biblical Times Dinner Theater was across the street from our hotel, as was Try Our Nuts nut emporium. Lilah swam in the hotel pool happily while we waited for pizza to be delivered, and we both fell fast asleep. In the morning, we drove to the Great Smoky Mountain National Park, which was a breathtaking contrast to Pigeon Forge. It was all natural and stunning. We parked Saoirse and got our water bottles and coffee mugs, heading to the trail head of Laurel Falls. I'd heard it was a do-able hike with a little one. We read the signs about avoiding bears and staying well clear of the edges, as drop-off deaths had occurred. I observed Lilah's usual drunken stumble with chagrin and insisted she stay on the inside of the path. She capered over rocks on the mountain face, stopped to collect all the special rocks, and wondered aloud where all the birds were. For the first time, I noticed that birds weren't singing. Save the occasional cricket or locust-y sound, the forest was silent. She whispered, "I feel like we're going into the Impassable Wilderness. I hope there's no Dowager Governess here." I smiled at her and assured her the Dowager was relegated to Wildwood. "But," she remarked, "I wouldn't mind meeting Owl Rex or going to the Avian Principality." We climbed and climbed, passing other hikers as we did. All stopped us to say good morning. Lilah frequently hid behind me shyly as we let other hikers pass on their way down, and kept her eyes downcast as they greeted her, which they all did. She finally asked me, "Mama, do I have to talk to all these people? They all talk to me."

"No, babe. You don't have to say hi, but you do have to s..." and I stopped. I'd almost said smile. But that wasn't what I'd meant. I didn't want her to be deliberately rude to friendly southern strangers, but she did not owe them a smile. I didn't want to start that precedent or make her feel beholden to people she didn't know, just because they'd said good morning. "You don't have to talk to anyone if you aren't comfortable. Ever. But if these people are friendly to you, you can be polite." She digested this, peering intently into a little stream.
"Can I just wave, you think?"
"Definitely. Waving is a really good idea." From there, she waved to everyone who wished her a good morning, smiling and feeling less shy. Interaction on her terms.

We got to Laurel Falls and stopped short. It was breathtaking. 25 feet overhead, the cliff face opened to a beautiful waterfall with several levels, creating little pools of cold, clear water with translucent crayfish scurrying about, before rushing over the edge of the rocks and plummeting down the mountainside. Lilah squealed and stripped off her shoes and socks, splashing into the pools and clambering on the slippery rocks. She lost her footing and landed with a splash on her bottom in one of the pools. She looked at me and I shrugged, and she mimicked my shrug and went back to playing. We climbed the rock to the top of the falls. The kids of other hikers asked to climb as well and were told no, which set them to whining until their parents got tired of it and they left. Lilah informed me she had peed at the top of the falls, and wondered how long it would take her pee to reach the Tennessee River. We splashed around a bit more before heading back down the path. We walked in amiable silence for a bit before odd sounds started to register. Snapping branches, crunching leaves, more snapping. It seemed to be coming from the woods to my right. I whispered to Lilah to stop and craned for the source of the racket. A massive black shape was ambling and snuffling 10 feet from me. I didn't need to see a head to know what it was. I stifled the desire to scream, "BEAR!" like Merida from Brave and whispered to Lilah that she needed to keep her voice down and move. Her eyes got wide as she saw what I was staring at and she nodded and we walked briskly down the path. Camping 7 years earlier, I'd mistaken the scrabblings of raccoons at night for a bear. Dano had said simply at the time, "If there's a bear, you'll know." He was correct.

We left Laurel Falls and drove west to Townsend to meet up with Lilah's friend Abby and her family, who were vacationing in the Smokies as well. The 6 of us went on a lovely horseback ride. I had been afraid Lilah would get near a horse and say she was too afraid. Instead, she surprised me by loving it and doing a great job on her horse Arrowhead. She told me she felt like Merida on her horse Angus, who had also been black and white. We said goodbye to her friends and headed north. I told Lilah to have a lunch from the cooler. She snacked on some things while listening to Part 3 of Wildwood. We were in the Cumberland Gap area, driving through the highest mountains I'd ever seen, when she began to groan and complain about her stomach. I brushed it off at first until she started to cry, and she leaned over and threw up in the garbage. There were no exits and the shoulder featured a sharp drop off. I finally found a spot to pull off while semi trucks whizzed by. I helped her to the grass and got her changed into pajamas. We rinsed her mouth out and she emptied her stomach again. Inspecting the odd contents, I asked what she'd eaten. Only all of the baby gherkins dipped in copious amounts stone ground mustard. I groaned. No wonder. I grabbed the Benadryl and maxed her out on a dose for her weight to settle her stomach. She fell asleep shortly thereafter for and stayed asleep for hours.

As we made the long trek home, the sky darkened and lightning began to flicker in the distance of Ohio. Lilah was awake by that time and listening to the frantic conclusion of Wildwood. The further north we drove, the darker and weirder the sky got. My phone started buzzing insistently and I glanced over at it. A tornado warning for the exact spot we were driving in. I felt my chest constrict and breath wasn't coming easily. I turned Wildwood off to much protest, and tuned into the radio. The DJ announced that the tornado had cleared the listening area, and I exhaled with relief. "So unless you're headed north, you're all clear. If you're headed north, well, continue to take shelter until after 9:30." I looked up at the pink sky as hail started pinging off Saoirse. Shelter. All exits were closed due to construction. We were in the middle of a plain. There was no shoulder. I cursed Ohio colorfully in my head. I weighed my options, instructed my phone to compose a text message to Dano (in case you die, whispered a macabre voice in my head), and hit the gas, going as fast as I was able to go safely in the pelting rain. If I couldn't find somewhere to take shelter, I was getting to Michigan as fast as Saoirse could take us. When I finally crossed the Michigan border, it was like something from a movie. The sky turned from sickening pink to a respectable black. The hail gave way to a soft summer rain. All signs pointed to Prue reclaiming her brother from the Dowager Governess and saving all of Wildwood in the process. My phone navigation chimed merrily, "Welcome to Michigan!" After a short time, we approached a very familiar skyline. Lilah clapped and said "Detroit!" We were home before we knew it. Dano greeted us bleary-eyed and I choked back tears, expecting him to give me a hug and comfort me after the tornado ordeal. He'd slept through my text message and it seemed much less dramatic telling him in person. Lilah and I brushed our teeth and changed into pajamas while he started a load of laundry after the incident with the gherkins. The three of us fell into our bed and slept like the dead.

We've done mostly nothing today, Lilah and I. Loafing around, watching movies. I've spent the day thankful to be home in our village. We moved her north for a reason. It wasn't just that we want her to grow up near cousins, aunts and uncles, and grandparents. We wanted her grow up in a place where, if she ends up attracted to girls instead of boys, or both, or neither, there won't be a "coming out". There will just be Lilah being Lilah, and loving who she loves. Parts of our trip were mind-blowingly beautiful, and Lilah and I made memories that we'll have forever. People were genuinely kind and helpful. But it's just too different. The casual cultural appropriation of Native Americans. The barely veiled racial divide. The intimacy with strangers. I was thankful a million times for the life we've made in the community we've chosen, a community that has also embraced us in return and was happy to welcome us back.

In 72hrs, we drove 24hrs, saw 5 states, crossed 3 rivers, explored 3 caves, played in 4 waterfalls, rode 2 horses, encountered 1 bear, stayed in 2 hotels, spent $65 in gas, peed in 1 waterfall, threw up 12 baby gherkins, outran 1 tornado, listened to 15hrs of Wildwood, climbed 2 mountains, and had more laughs with my girl than I could possibly count.

The Art of No

It isn't news to anyone that I was raised in a very restrictive environment.

You could safely assume the answer to anything was going to be "No". Can I go to a friends' house? Can a friend come over? Can I see this movie? Can I have this item? Can I participate in this function? There was never a logical reason. If the house was a mess, school work wasn't done, dishes were in the sink, or it was a day ending in "Y", the answer was "No". However, just when you thought it was safe to assume that blanket "No", they would throw an absurd "Yes" into the equation. I swear it just to mess with us. Or one of us would watch for another sibling to be told "Yes" to something we had been denied before, springing out with an "AHA! I have caught you! Now you must say 'Yes' to me as well!"

It didn't work.

As a result of this confusing upbringing of near-constant, illogical denials, I made a point when I left home as an almost-adult to say no to as little as possible in my life. Roller Coasters? Yes. Bungee Jumping? Bring it. New foods? I'll try anything once. That's not to say I didn't have preferences or resist some new experiences. It took a great deal of coercion (and possibly spousal abuse) to get me to read a comic book or listen to Weezer willingly. But I was the first one to volunteer to do a procedure in nursing school. Not because I was a know-it-all (although yes). And it isn't because I was fearless and confident (hellz to the no). It was because I was in the business of faking confidence until I acquired new skills and new experiences in my life, which until then was more or less a blank page.

Fast forward to my life as a wife and mother. My husband is an anxious person. Crowds, new experiences, and spiders make him ill. If he says yes to something new, it's because he's in a good mood, well fed, Mercury is not in retrograde, and he has probably had a beer or two.

Does he want to help out with this PTA thing? No. Could he drive to this person's house he has never met to pick something up? Maybe, but with much grouchy protest. Is there any way he could grab just TWO things from Costco? Forget it.  Lilah takes after her father.

Do you want to try this new activity? Sounds boring. Can you read this word you've read 80 times before? Seems hard. Can you go to this new place that I promise will be fun and exciting? I'll go, but will probably whine and complain, and might require you to carry me around. I frequently get insanely frustrated with my family of Negative Nancies. I am still the opposite.

New committee being formed? Sign me up. Doesn't matter that I have no more free time to give up and I might have two meetings going on simultaneously. An event needs volunteers? I would rather just enjoy the event but Organizer Mom scares me, or Teacher I Love asked me. I'll do it. Meeting requires me to barely see my family, not eat dinner until 8, and the topics discussed will make me angry? I'll pencil you in. Unconsciously (I think), my busyness became a point of pride and I wore exhaustion like a badge of honor. By default then, what did that make my family? It made them fearful and weaker than I am, possibly lazy. I'm not afraid to say yes to things. I'm not afraid to push the limits of what I can handle. I'm not afraid to have new experiences that make me uncomfortable. I am living my Best Life Ever.

Something happened this past week that made me reevaluate a lot of things. Lilah started karate. I was in the midst of this stupid health scare that turned out to be nothing life threatening, but definitely gave me pause and culminated in a painful, stupid outpatient procedure. I didn't have a choice but to limit my activities and say "No" to a whole bunch of stuff. It was frustrating and stressful for me, which was telling. Or should have been.

Aaand Lilah started karate. Her pediatrician talked her into it because she thought Lilah needed more body confidence and core strength. I had called and talked to them ahead of time, explaining Lilah and what her challenges were. I was assured they had special needs kids who did well and they could handle her. The first day, Lilah chattered excitedly about it. When we got to the Dojo, she tentatively joined the other kids in their little jackets and belts. She was twirling with her hair, rocking on her heels, looking at the ceiling or floor. When they assigned numbered mats to each child, she forgot her number and came to ask me. I had missed the number myself and told her to ask the Sensei. Instead, she flipped out. She started to cry, asked to leave, hid behind me. The Sensei came over and talked to her, then suggested she watch with me until she felt more comfortable. Lilah nodded, still hidden behind me. She watched the other kids go through their exercises with interest and I could tell she wanted to join. Every time I suggested it, she whined and refused. I was getting frustrated and embarrassed. The Sensei came back and asked if she wanted to join in running a lap, because everyone can have fun running. Lilah hid again. I sighed and I'm sure was not the picture of Supportive Mother of a Special Needs Child you might have seen on Pinterest. Sensei asked Lilah if she'd feel better if Mom ran a lap to show her how much fun it was. I beamed "Not on your life, lady" with my entire being and shook my head emphatically no, hoping a nice distracting fire would break out. A few moments later, I was jogging a lap around the Dojo with a group of tiny giggling children in front of a row of smug (probably) smiling parents. I spotted my horrible, traitorous daughter, who had fallen on the floor laughing her ungrateful ass off. I finished and took my seat, hoping the earth would swallow me alive and leave Lilah motherless and filled with regret. Instead, the she-devil skipped off to join her class and participated with enthusiasm. After the class, we had the option of signing her up for once a week, twice a week, or not at all. I asked her, and she said she wanted to try once a week and move to twice a week if she felt ready. I sighed with frustration and reminded her of how much fun she'd (eventually) had during the class and she nodded. "Twice a week when I'm ready." She smiled peacefully at me and for a second, I was upset. If she'd liked it, after all that drama, why not jump in with both feet? Why not go all in? But she repeated "Once a week, Mama." And I said, "Okay, Lilah." I circled once a week and we got her signed up.

I spent some time reflecting after we got home. Why did I view Dano's and Lilah's way of life as weakness? Why was mine so much better? Which way led to more happiness and peace? Why was I so sure saying "No" was a bad thing? In the end, I was able to see them through different colored lenses, lenses not clouded by my own life experience. They weren't limiting themselves by saying no. They knew their limits. That wasn't weakness. It was self-confidence and common sense. And I had the inability to set limits, and spread myself dangerously thin to the point of harming my own health and household. I was learning slowly and painfully how to say "No". It wasn't walling myself off from experiences. It was knowing myself, and knowing my limits. I could still continue to push the more timid members of my family out of their comfort zones, but I wouldn't force them, view it as weakness, or get angry if they weren't ready to make the leap yet. And I could learn yet another thing from the child I was (supposedly) raising. I could learn the Art of No.

#MRIbirthday

It started as a comment my mother-in-law made while I was on the phone with her the week before the MRI. Something along the lines of, "So about this...MRI birthday." It was impossible to delineate one from the other in my mind, and it seemed others' too. I started referring to is as a hashtag to keep it lighthearted and keep the panic from surfacing. Every time I tried to think about her birthday, or plan for her party, there was this nasty whisper in my head that wouldn't let me get past the MRI. I couldn't reflect on the past year, couldn't get past that wall in my mind. I was terrified of a reaction to sedation, to contrast, of her never waking up. I read safety stats. It was riskier for us to drive her to the procedure than for her to have it. I knew that. I trusted that. But something my brother's oncologist said eons ago would reverberate back: "Statistics don't matter when it's your child."

Lilah got up bright and early after a Star Wars marathon the night before. She crawled into bed with us and we wished her a happy birthday. She was all smiles and snuggles. She got a white popsicle and tea to get something in her stomach but stick to clear liquids. She painted and finished Star Wars. We got dressed and collected her presents so she could open them when she woke up. We drove to the hospital.

She held her Elsa doll and sang Cherry Wine by Hozier in the backseat. We parked and walked her into the Imaging Center. I kept checking my phone like a lifeline. Every 3 seconds or so it would "thrrrpt" in my pocket. Every 3 seconds was someone who loved me and my family keeping me from absolutely losing my shit. I got her registered, filled out her paperwork, and they put her arm band on her. And we waited. She squeezed Elsa harder and tiny lines formed on her guileless little face that almost never wore creases. Receptionists complimented her crown and her bird dress and sweater, said how pretty she looked. She smiled and thanked each one, but it wasn't a real smile. She was pensive. They said she looked pretty, but I knew better. She has picked her outfit so carefully. She wanted her crown and bird dress because she wanted to feel like herself. She was wrapped in the sweater I made her because it was a security blanket.

They called us back to another room where she changed into a gown and hospital pants. She stayed on my lap and snuggled close to both of us. She refused the iPad a mom offered when the girl ahead of us got taken back. She just sat. The anesthesiologist came back and asked Lilah if she knew what she was there for.

"You're going to take pictures of my brain. You're going to send pictures of my brain to my doctors because they want them."
"You're right! And the best way to take those special pictures is if you're asleep, so..."
"So you're going to give me special medicine to make me go to sleep."
"Yes! You're so smart!" She turned to me. "Any metal implants, allergies, asthma, heart conditions..." Lilah answered again.
"No metal. They said no metal. I can't have cow milk. No asthma." The doctor said they'd give her medicine in a mask mixed with air, then start an IV to keep her asleep. Then they'd wake her up and come get us. Did we have any questions?
"And if...if she has a reaction to the sedation, or the contrast?"
"It's usually very well tolerated, and we'll be monitoring her vitals the entire time. We have an emergency kit, just in case." I nodded. I had to ask. I knew, but I had to hear her say it. Just in case. Just in case. She handed me the form to sign. I signed. She left the room and they came for her a few minutes later. I let go of her hand and she walked away down the hall. I had to consciously keep breathing and not scream. Inside I was screaming. She rounded the corner and I walked the other way. Not down the hallway after her to yank her away from them. We made it to the waiting room. Dano and I talked and kept each other company for over an hour. I jumped every time I heard an overhead page. I watched the double doors every time someone came through. They finally called us. We went back to the recovery room and the nurse said she had just opened her eyes. She saw us. I saw her looked relieved. She rolled over contentedly.
"She was just asking for you." I thought my legs would collapse but they didn't. She sucked down an apple juice and a water and ate two graham crackers. They gave her a teddy bear and she sat up. The nurse said she could get dressed. She reached for her bird dress, and we handed her a present.

"You can wear this instead, if you want." She tore it open. It was her Rey costume. She squealed and thanked us, and tried to stand up on the gurney to put it on, swaying where she stood. The nurse held her while I dressed her. She kept squealing and saying how great she looked. She was pissed when they sent Dano out to pull the car up and made her get in a wheelchair.
"I CAN WALK." She finally agreed to sit in the wheelchair, but only on my lap, and she glared at the nurse pushing us the entire time.

We spent the rest of the day having tea and sandwiches, watching movies, and playing Legos. I think we could have gotten home to the house burnt to the ground and I'd have been okay. I had my family, and we were enough. I tucked Lilah in to bed and I told her how brave she was, and how proud I was she was mine. She snuggled down in her covers and fell almost instantly to sleep.

Suppression

I feel like the past couple of months have been this insane whirlwind of activity, but in a good way. At Lilah's last IEP meeting, I was finally feeling pretty amazing about everyone involved in her care. Her OT Meghan said she still felt like there was a missing piece and wanted to call in a vision specialist from the county to evaluate her. I signed the piece of paper requesting the evaluation. It was also decided at that meeting that any and all formal testing for Lilah would be shelved for the time being. Her limitations made it impossible to administer a test and get accurate results.

The weeks past and Lilah was scheduled for a rough time of it when it all finally came together. On a Monday, the Oakland County specialist would be at the school to evaluate her first thing in the morning when she was at her best. Tuesday she'd be evaluated by the Beaumont Hospital vision therapists. Wednesday she would follow up with her neurologist.

Monday I paced around the school office waiting for Lilah to emerge from testing so the team and I could sit down with the evaluator and hear her findings. I finally saw Meghan escorting a smiling Lilah back to class. A few minutes later we were all sitting around a table while a tall woman with blonde hair started pulling out weird charts and tools and going over her notes. The conversation is still kind of a blur of incredulity for me, but the basic takeaway was that 1) Lilah for the most part has no depth perception, and what she does have comes and goes. If she were wearing 3D glasses to watch a movie, she'd still see it in 2D. 2) She has 20/20 vision, a wide visual field, and sees color very well, but her processing speed is about 3x longer than most kids her age. If she were to take a timed test, she would do very poorly, even though her knowledge was at 100% accuracy. She performed best with 20pt font in Comic Sans. 3) and probably the most alarming to me, was alternating suppression of her vision. It was explained like a highway that should have three lanes for motor, auditory, and visual feedback. Instead, hers had two lanes and her brain shuts out her eyes when it feels overwhelmed. One at a time normally, sometimes both. She had me put on glasses to show what Lilah saw. Halfway through reading a word, my eye dominance would switch and and the text would look redacted.
"This is what trying to read looks like for her?"
"Yes. She can be trying to focus on a word and when her left eye gets to midline, she might blink and the rest of the text might go black. Or she can be reading along from midline on with her right eye, and when she goes down a line, her left eye might go black."
I felt like the world's biggest asshole for every time I'd get frustrated with her for knowing a sight word one day, then not knowing it the next. Or knowing phonics really well but not being able to sound out basic words yet. Or not being able to find a sock in a sock drawer. Or falling or tripping in her own house in her own room.

The takeaway was that we needed to introduce concepts in a quiet room with 20pt, Comic Sans font in yellow or red text on a black background. She said we needed to put yellow tape on stairs and corners and common walkways where she got hurt most often, and orange cones in gym to alert her where perimeters were. I felt like I stumbled out of that meeting under the weight of new information.

On Tuesday, the Beaumont visual therapists took the information I gave them about the day before and built their testing on where Oakland County had left off. They agreed, but added tracking problems and issues converging to the mix. Amy, the visual therapy COTA, wanted to spend their time really integrating her ATNR reflex and improving her bilateral coordination WHILE strengthening her visual skills. The things they had her doing she felt were fun. Lying on the ground with a white ball swinging overhead while she tracked it, or singing a song while doing half-snow angels, one side at a time. Amy did note that Lilah would tap next to the text that was suppressed, to "turn it back on". That was promising that she could be rehabbed. Apparently some kids lost the feedback for the entire day once it went out.

Wednesday we checked in with Dr. McCormick. I gave her the run down of the previous few days. She said Lilah's overall tone and strength had improved, but honed in quickly on the new problem areas. She moves with this grace and precision and her eyes scan and take things in. She reminds me of a bird, the way she tilts her head and leans in, getting a better look or feel for what she's trying to understand. She said Lilah's tracking WAS choppy and she didn't converge or diverge well. She wanted us to check in with Dr. Rao, Lilah's ophthalmologist, and get an MRI with contrast to make sure her vision problems weren't a congenital cyst on the brain or anything else. "Or anything else.". I asked if it could be without sedation. She explained the test to Lilah, who requested to be asleep during the test. So I was convinced, if that's what she wanted. Just sad and apprehensive.

Dr. Rao said there was nothing wrong with her eyes and her tracking issues were something she'd grow out of. Weekly vision therapy improved her skills and her reading was coming along more all the time. We put the yellow tape throughout the house and the falls and walking into corners all but stopped. The schedule for the MRI only allowed it to take place on her birthday. I was devastated. She was optimistic and sunny.

At work the day before the test, I faked through the day with a smile. Dr. Kolin, whose youngest daughter had so many similar issues and went through vision therapy, asked about the MRI. She was warm but matter of fact. "It's so nice this will be off the table, since they aren't going to find anything. My daughter had one too, and now even in college, every time she gets a headache it's one less thing I have to worry about."

Even though she would have to spend her birthday fasting, the plan was to take her to her favorite tea room when she was awake and felt like eating and she'd have lunch and dessert and tea and get her presents. A Rey costume and lightsaber, after going through her "Jedi training" earlier that day. I knew how excited she'd be about getting to dress like her favorite character from the movie. As I was leaving for the day, one of the other doctors sent his best wishes for the day to go by quickly and her birthday after to be great. He ended the message with MTFBWYA - May the Force Be With You, Always. I closed my eyes tight but one tear got out. She was so loved, and well taken care of. We lived in an area where Lilah could get the help she needed from people who could actually give it. People with incredible expertise and intuition, compassion and patience. Lilah herself overcomes mental and physical obstacles every day and fights against her own body and still smiles when she sees the white crocuses open outside her window and lives to hear the birds sing in the morning. She'll give up her lunch because I sent her with fish and the little girl she sat next to said she was allergic, so she doesn't want to hurt a friend. This little girl amazes me every day and I feel like I can never do right by her and give her the existence she deserves. But the Force really is with this one, and I know she'll come out stronger on the other side.