What I Never Thought I'd Put to Paper

I suppose I should start from the beginning—that is the fear that has lingered in the back of my mind since his craniotomy.

It’s been five years—five years since he defied the odds, fought for his life, and emerged on the other side without limitations, with his entire future ahead of him. He graduated high school and walked across that stage to receive his diploma—two accomplishments that had once seemed out of reach. But here we are, by the grace of God, sitting in a hospital waiting room in Naples, Florida, because Dr. Valle is the only doctor we trust.

It’s freezing. Not to be dramatic, but it’s actually freezing in this waiting room. From our experiences with Preston, angiograms can last anywhere from two to five hours, depending on various factors. Why my mind didn’t register that I’d be stuck in a waiting room all morning, I don’t know. Well, I do: I thought, Naples, Florida—beautiful, warm beaches, not a freezing waiting room. Ironically, I was a pro at dressing for cold hospitals just five years ago, sporting sweatpants and jackets in the heat of May in New Orleans because I knew what my days would entail—cold hospital waiting rooms. I’m out of practice now.

It’s just my mom and me this morning. My dad is home keeping everything running because this is just a simple angiogram. Its purpose? To give us one final victory lap to prove that the AVM is truly gone, as is routine at the five-year milestone. As we got ready to leave for the hospital, my mom kept repeating to Preston that this was “the last one.” The last angiogram. We would be done. In what I’ve gathered from Preston's journey, angiograms can be stressful on the patient’s body, and there can also be significant negative outcomes from the procedure. Just yesterday, in Dr. Valle’s office, as he went over the risks, I had to keep my jaw from dropping. It had been so long, and the risks had blurred in my memory: stroke, amputation, death. Preston's last angiogram was when he was 16, and now he’s just a few weeks away from turning 22. He’s older now, and we’re all expecting the toll on his body to be greater.

I took the week off from work to be here, strategically planning my PTO ahead of time so I could be his cheerleader and hear every word his doctor spoke. Now that Preston has gone back and left us to wait, it’s clear just how terrified my mom really is. And I can’t do anything.

Hours go by, and I finally give in and ask the nurse at the counter for a blanket, like she offered earlier when I thought I could stick it out. Then I go back to people-watching. Just as I did five years ago, I find myself becoming jealous of the others waiting—those who are in and out, quickly reunited with their loved ones. We’ve been here since 5:30 AM. How nice it must be to have a “normal” case. My migraine worsens as I physically shake from the meat locker we find ourselves in. One man across from me, I kid you not, has a blanket wrapped around both legs, another around his arms, and to top it all off, a final blanket wrapped around his head. Another man waiting complains about how long he’s been here. I can’t help but laugh under my breath because we actually opened up the waiting room this morning; we had to turn the lights on and everything.

And then, ultimately, we’re called back, which, based on my people-watching experience this morning, is abnormal. Patients have been exiting through the doors to meet their loved ones and leave; no one waiting had been summoned back. My mother, being who she is, quickly begins firing questions at the nurse guiding us through the winding, long hospital hallways. The nurse, however, evades every question and simply says that Dr. Valle wants to speak with us.

We’re guided into what looks like a scrub room straight out of Grey’s Anatomy. I’ve never been this far back, and I already want to leave. Through the large windows in front of us, I can see Preston lying unconscious under the bright lights, on what I can only describe as an operating table. My eyes focus on the bloody towels scattered around him. A doctor stands over him, holding a white cloth stained with blood at the angiogram insertion site.

Still wearing his mask, Dr. Valle greets us as he continues to look at his computer. He tells us that Preston did well and is resting now while they work to get the bleeding to stop—totally normal after angiograms. My alarm bells aren’t going off yet, though, because Dr. Valle has brought us back in years past to discuss results.

It isn’t until he begins to show us the angiogram results and utters the acronym that nearly shattered our family years earlier that my breathing suddenly slows in anticipation.

AVM. 

I’m shaking—physically shaking. Thank God Preston is unconscious, so I don’t have to hide it. My breathing quickens, and my mind races right back to the hallways of Ochsner Medical Center in NOLA: surgeries, waiting rooms, stroke, relearning to walk, waiting for him to wake up while I stared up at him, and just holding his hand. I can’t do it all again.

My mother and I both clarify, “AVM?” Dr. Valle corrects us—actually, two AVMs.

I hear it, but I don’t believe it.

She falls into the seat, and he assures us that the AVMs are small and nothing compared to what we’ve been through. I force myself to stay composed because I can’t imagine the severity of the cases he sees—this is just one among many he handles every day. But then he turns to us and begins to reassure us that what we’ve already endured has been “traumatic,” and we have every right to react this way. His acknowledgment and confirmation of where my mind is racing makes me feel less crazy and dramatic—yet despite everything my demeanor never falters. Though, I can’t speak for my facial expressions. Dr. Valle repeatedly tells us that this is something we can overcome—it’s not like last time. I must note, though, that throughout Preston’s journey, amid all the hard and devastating conversations this doctor has had with us, I simply don’t believe it could have been done better. Dr. Valle informs us that he wants to speak with Preston this afternoon in his office to explain everything. We stand there, still stunned, and just nod our heads in agreement.

Traumatic. I’m not entirely sure what I actually take in during the minutes that follow. We leave to head back to our arctic waiting room. Next, Preston has to go to recovery for a minimum of four hours, as is mandatory after angiograms to avoid the risk of bleeding out. You read that right.

I’m the communicator of the family. I’ve stood on many stages and spoken to audiences about the power and glory of God’s healing hands on my family through Preston. But now, I can’t find the words to speak to my own mother.

My dad has been messaging us consistently this morning for updates, and all we’ve been able to say is that we were “still waiting.” I know he’s going crazy, so I tell my mom I’m going to the hospital lobby to call him—partly so we can each have a moment alone with our thoughts.

It’s strange. As I make my way to the lobby, the only thing running through my mind is that this time, unlike last, I would be the one to call my dad with the news—not the other way around. I select “Daddy” on my phone, my hands still shaking, already knowing I won’t be able to hold it together once I hear his voice. He answers, and it all just tumbles out of my mouth: “Daddy,” my voice cracks. “They found two more AVMs.”

There’s no stopping it, and in this moment, I don’t even try to hold back the tears that have finally welled up in my eyes. I just unload everything that has happened in the last several minutes. The eyes of onlookers around me aren’t subtle by any standard, but in my defense, I’m not hysterical or anything close to that—my voice just keeps cracking as the tears fall down my cheeks. I’m that girl again. I’m 18, a college freshman in my dorm room, receiving a call from my dad that my little brother has been put in an ambulance after his MRI results were read. I’m not a young professional. I’m not an advocate. I’m not the girl who has met with state leaders—I’m that 18-year-old girl again.

I want to wake up from this, but I know it’s not a dream—it’s a nightmare.

Some communicator I am. 

One thing we excel at—maybe thanks to our extensive experience—is making friends with the hospital staff, especially the nurses. They’re simply amazing—encouraging to patients, caring, and eager to help. A few hours later, during a donut run to get something for Preston, my mom and I manage to finesse our way into the outpatient care area. Here, it seems, it’s really just nurses and patients recovering from surgeries or procedures. No families, but we won’t tell.

I tell Preston. I have to tell him that they found two more of the disease that had nearly taken everything from him years earlier. They’re small and insignificant–he can beat this. That’s my driving point. 

After about five hours—Preston typically takes longer than average to stop bleeding after angiograms—the incision site is cleared, and my mom heads out to the car to pick us up. Armed with all the bags, I help Preston into his wheelchair, and we make our way out with a nurse to the front of the hospital. My outward demeanor has come to terms with what we learned this morning, even though mentally, I’m walking through a minefield. I smile at him and start to question while we’re still in Naples what fun things he wants to do after he rests today. I turn my head for just a second to spot my mom rounding the corner to pick us up, and when I turn back, I see Preston’s washed-out face staring back at me. His head falls back, and he complains that he’s dizzy and nauseous. That’s enough for the nurse to quickly turn him around, and we make a hurried descent back to where we came from. But we’re just not quick enough; Preston leans forward and begins vomiting between his feet—almost all between his feet.

After an actual successful escape later around 2 PM, the rest of our day is spent sleeping in the hotel room. The emotional toll from this morning has left us all exhausted, and on top of that, the discomfort Preston is experiencing from the angiogram is, without question, the worst to date. He’s wiped and in pain to the extent that it's difficult for him to move. 

The only real conversation to be had is between my mom and me about what time we need to get to Dr. Valle’s office today—a topic on which we’re not seeing eye to eye. I’m convinced he said to see him this afternoon, while she doesn’t think he’ll be in the office today. And the one time I didn’t take notes during our conversation (I’ll blame it on shock), we’re misaligned on our game plan. It isn’t until after 5 PM. that Dr. Valle’s wife calls. She’s fantastic, and from what I’ve seen, she’s the one who keeps his practice running smoothly. She’s inquiring where we are, as they expected us in the office. Victory.

It isn’t until the next morning, after an MRI with contrast, that we finally find ourselves in his office.

Here’s the deal: the AVMs are small; we know this. But why haven’t we seen them until now, you may ask? Apparently, due to the astronomical size of the original AVM—and all its glory—it absorbed all the blood flow, making it impossible to detect anything else, including the two other AVMs. Last year’s MRI showed zero signs of any AVM, but this year’s MRI shows them plain and clear.

They’re growing.

The bigger of the two, however, is on the motor cortex of his brain. From the way I see it, with Dr. Valle’s presentation, we have three options. Option one, remove the AVMs surgically. We’ve done this before and just the mere mention of the word surgery makes me want to vomit. A primary risk however, if it doesn’t go perfectly, will leave Preston with permanent mobility loss in his arm, controlled by the area of the motor cortex the one AVM resides. 

Next, we have radiosurgery. I’ve never heard the term before, let alone know what it entails. Essentially, for Preston’s case, it involves radiation treatment using CyberKnife. This option also requires the involvement of a physicist and an oncologist. The catch is that we won’t know if the radiation is actually working until at least six months post-treatment, at which point we’ll need to reassess based on the results.

And lastly, there’s the option to do nothing. That’ll be a no for me.

Our office visit with Dr. Valle after the angiogram

We go through every pro and con, every risk, every sad truth, and ultimately determine that we must take action, regardless of the risks, as we know all too well what waiting can lead to. But this time, we understand. As always, we seek his professional opinion, and he approaches it in the same manner he did five years ago, when we were petrified to move forward. He tells us what he would do if it were his family. Each time, my gut feeling has aligned with his recommendation.

Not that I’m anywhere near his level of intelligence, but his innate ability to simplify even the most complex concepts is exceptional. He’s the doctor who takes a highly intricate process and lays it out in straightforward terms—all on the back of a piece of paper. Then he walks us through it step by step as if it wasn’t brain surgery but rather something ever so simple. 

We leave that day, scheduled to return in a month—a month to reassess and rest. But we’ll be back soon because we have two AVMs to beat, and we’re going to conquer them with radiosurgery.

I haven’t had a chance to be alone and process everything yet. I haven’t had the inevitable breakdown that I know is healthy to avoid risking one at an inconvenient time. I go right back to work the following week, with just one day at home in between. So, to say I’m not mentally present is an understatement—just merely going through the motions.

Only three people really knew why I was out of the office. When I started my career, I had zero intention of anyone knowing this part of my life. But three people here know where I really was last week. I haven’t been in my chair for five minutes when someone who I consider to be a mentor in my career messages me, welcoming me back and asking how Florida was. I stare at that message for several minutes, feeling sick inside. Totally and completely lost on how to answer what should be a simple question, I finally settle on, “It was fine.” 

Ready to kick the AVMs with Radiosurgery

Time runs quickly and the days blur together and it's as if I turn around and we’re back in Naples. The sun, the white beaches, and a city I’ve come to adore now feel like a place I wish I could do without. We meet with his new oncologist, and the following day, November 9, Preston and I pass the time waiting for radiosurgery by admiring the elaborate fish tank in the lobby. When Preston is called back, he leaves my parents and me in the waiting room to go with the nurse. My dad interjects, attempting a joke as he references shooting a firearm and hitting the target—since they’ll essentially be shooting radiation at the two AVM sites in his brain, as mapped by Dr. Valle. The nurse turns and responds with a confident smirk, “We never miss.” I appreciate her clever and confident demeanor.

The whole mask thing—there’s probably a technical term for it—forms to his face for radiation, and it gives me nightmares. I tell him it’s just a simple part of the process, but it will literally be one with his face. Preston, however, is completely unfazed and never once falters. Each AVM takes approximately 45 minutes, one by one. If I'm being honest, this is probably the “simplest” thing we’ve done in his journey.

When Preston finally walks out, he’s carrying a yellow object, and I quickly realize it’s the very mask that has been seemingly attached to his face for a better part of the morning. He gives me a warm smile that fills my heart with gratitude for this moment before he pushes the mask into my hands and simply says, “For your talks when you share my story.” Don't cry. Don't cry. Don't cry.

Now we wait.

In early January, Preston has a virtual follow-up appointment with his oncologist, and a key item my mom brings up is what we need to watch for: side effects. The oncologist responds that she doesn’t know; they’ve never done this on an AVM before.

We’re normal—aside from the two sizable bald spots that appear at the radiation sites, which soon fade after a few months. We lead normal lives, with no mention of the AVMs as we wait for time to pass and radiation to do its work.

Normal.

Until we weren’t. 

I leave to compete at Miss Mississippi in exactly a month. It’s May 2, 2024, and twice a week I use my lunch break to work with my trainer at the gym in preparation. Today, I have a virtual meeting with my manager and another colleague at 1:30 PM. As is typical on these days, I rush into the office fresh from the gym shower and starving after a solid workout. Today, though, eating will have to wait until right after this call—that’s my plan, anyway.

My dad calls—he never calls me while I’m at work. I hit ignore on my phone and continue speaking in the meeting, as a deep seated sick feeling begins to grow in the pit of my stomach. He immediately calls back, and my heart drops. It begins to race as I put myself on mute in the Microsoft Teams call and answer. Something’s wrong.

“Daddy, I’m in a meeting,” I say quickly, but before I can say anything more, my dad cuts me off. “Angel Gail, your brother just had a stroke.”

I freak. 

He continues to tell me that my mom found him outside having a stroke and that he’s already lost mobility and still can’t speak. I can feel my face doing that thing it does when I start to break apart. It’s at this point that I realize that while I’m on mute, my video is still on. I quickly leave the meeting by clicking “Leave Meeting” with my mouse.

I stand and begin pacing around my office, demanding more information that he simply doesn’t have. “Just pray. Just pray,” he says. He tells me he will call back in a few minutes with details about where I need to go. Which hospital, that is. 

I hang up the phone and go to my computer, my hands still shaking as I search for my manager’s name in Microsoft Teams. Unable to think straight I simply type: “My brother just had a stroke. Going to the hospital.”

My dad calls back with news that an ambulance had arrived at our home and they were taking Preston to Forrest General Hospital in Hattiesburg—the very place where his first AVM was originally discovered. It was there that the Head of Neurosurgery looked a 16-year-old boy in the eyes and told him he would soon die. That was also after telling my mom it was her fault—genetically speaking. That, too, was a lie.

My dad tells me to go to the hospital and that he’ll call back soon. I throw my office door open and rush through the hall, knowing I have plenty of time to get there since my office is significantly closer to the hospital than my home. But I’m fixated on moving quickly. I already know I’ll be sleeping at the hospital tonight, so I should at least fill my Stanley full of water. I don’t bother trying to hide that I’m upset; I truly don’t care—which is so unlike me.

I make eye contact with my work best friend in her office. She’s talking to someone, but I know my face says it all: terror. She instinctively follows me into the women’s bathroom, and I let it all out—everything I know and every fear I have.

She’s the friend I’m open with, and she shares the same with me—both personally and professionally. No tears come, which feels odd, but my heavy, short breaths suggest they should. She offers to drive me to the hospital, but I assure her I can manage. “I’m fine. I’m fine,” I repeat.

I’m fine.

Once I hit the parking lot, I start a light jog to my car. I don’t know why I’m running; I have plenty of time.

Before I even make it to the hospital, notifications pop up on my dash—HR has texted me, along with the CEO, both expressing their concern for me. But I’ll forget about both messages by the time I park.

“No deficits. No deficits. No deficits.” The two words I mumbled under my breath six years ago come rushing back, and in this moment of terror, they’re the only words I can form again as I wait in my car.

Preston was mowing the grass when my mom found him. She had walked into the kitchen to grab something when she heard an odd sound coming from just outside the window. Curious about the source, she looked outside and saw Preston sitting on the riding lawn mower, his head thrown back over the seat, his arms stretched out to either side, and his entire body shaking. The mower continued to struggle up the hill, producing the strange noise she had heard, at the now loss of instruction from its operator.  

She runs through the nearest door and outside to Preston. A young man who, when standing tall, is 6’4” and for simplicity, she is nowhere near that. My mother’s screams rip through the countryside–but there’s no one near to hear as she tries to get him off the mower and onto the ground without letting any of his limbs hit a blade. He fights the entire time. It’s a fight like his life depends on it as foamy saliva mixed with blood spews from his mouth–but he can’t speak. He bit his tongue. His left arm swings uncontrollably in all directions as his right arm tries to take his shirt off. This is the postictal state as I’ve learned–a period that can typically range up to 30 minutes after a seizure where the individual can be aggressive and confused among other symptoms. 

In the initial panic to reach him, she left her phone inside. There they are in the grass, wrestling, with my mom clearly at a size disadvantage. This goes on for several minutes as she struggles to get the phone from Preston’s right hand to call 911. He won’t let her have it; he just jerks it away each time and flips it into the air, over and over again. As long as he has any fight left in him, that phone isn’t going anywhere.

Darting back into the house, my mom grabs her phone and rushes back outside to find Preston with a gash now down his leg in the mere seconds she was away from him. She tries to call 911, but the call won’t go through. Again. Again. Frantic, she calls my dad, who is on the coast, screaming with pure panic for her son.

My dad drops everything, calls 911 for her, and makes his way back north to Hattiesburg. The issue is, he’s on the coast, and they’re not, so every time he reaches a 911 operator, they try to connect him with support from the coast instead.

It takes 30 minutes for help to arrive for Preston. By this point, he has decided he wants to get up and walk around to the front of the house. The catch here is that the left side of his body isn’t working at all. So, my mom supports him as they move from the back of the house to the front.

As they stand together in the yard, two rescue vehicles from the fire department pull down the driveway with their lights flashing. Seeing this, Preston looks at my mom with fear in his green eyes and says, “Mama, I didn’t do anything wrong.” This is the first of any real recognition he shows and an ability to form words. 

They arrive with nothing—no gurney or stretcher, just several people to keep them company while they wait for the ambulance. What is happening? As the individuals from the rescue vehicles approach, my mom sternly questions them about the whereabouts of the help. While it’s a relief that they don’t need immediate assistance, but by that same standard, why couldn’t it have just been the ambulance with a gurney instead? Time is of the essence. 

The ambulance arrives about 20 minutes later and takes him to Forrest General Hospital. As I continue to mutter “no deficits” under my breath, I track my mom’s and Preston’s phones as they inch closer to the hospital. Still sitting in my car, I finally spot the ambulance, clearly marked by the red sports car behind it—undoubtedly my mother’s, since they wouldn’t let her ride with him.

I get out of my car just outside the ER and meet my dad as he walks up from his truck, as they unload Preston from the ambulance. He’s shirtless, which I assume is due to the EMTs needing access for monitors and such. His hair is messy, with bits of grass still stuck in it. I smile at him, knowing the ambulance drivers are about to tell me I can’t follow them inside. I swear, I hate these hospital rules. I understand their purpose, but that doesn’t mean I can’t still loathe them.

Accompanied by my parents, we explain the situation to the staff member at the front desk. “I thought it was a stroke,” my mom says. “He couldn’t speak for 20 minutes and lost complete mobility on the left side of his body.”

While I was waiting in my car, I messaged Dr. Valle on Instagram, knowing that the chances of him reading it during the day were slim. My mom, however, is the only one who has his cell number. Ironically, I’ve always been the one to handle communications with him from her phone. I copy and paste my original message from Instagram and text it to him from her phone. No doctors here are going to be able to handle his case let alone have our trust. 

I send the text at 2:31 PM, 3:31 PM his time. Less than three minutes later, my mom’s phone rings—it's Dr. Valle. He explains that he’s about to go into surgery but wants to know exactly what’s happening. My mom details everything: the loss of verbal communication and mobility, how she found him, and that he had just arrived in the ER.

The three of us huddle around her phone, now on speaker, in the small, quiet waiting room. Dr. Valle tells us that Preston had a grand mal seizure. Me being the girl who went to business school, and not medical school, hears “grandma,” and I think, oh, so he just had a little seizure. Relieved, I realize that, as far as things could go, this isn't as dire as I initially feared.

Dr. Valle is clear: Preston needs an MRI ASAP, and we’re to send him a video of the results as soon as we get them. He believes the seizure was caused by swelling in Preston’s brain, likely a result of the radiosurgery as we are now, nearly to the day, 6 months post radiosurgery. It may also be that his brain is bleeding. We will need the MRI to know for certain. In the meantime, they need to administer Keppra to prevent further seizures and steroids to reduce the swelling.

This waiting room isn’t going to hold my mother for long; I can tell you that much. Like clockwork, she manages to escape through the locked door designed to keep people from doing exactly what she’s doing. How does she do it? I tend to just sit back and watch each time–amused.

With my mother off wandering the ER in search of her son, my dad and I stay back in the waiting room. Three people looking lost instead of just one would draw more attention. But honestly, my patience is wearing thin too, and it doesn’t take long before I’m restless. After a quick phone call to my mom, I learn she’s found Preston and provides us with the room number to join them.

He looks good, aside from the dry blood and scrapes he received from his tussle earlier in the day. But the fact that it almost feels natural being in a hospital room with my family makes me uneasy. Eventually, the doctor comes in, and I quickly realize we have three chiefs—or firstborns, if you prefer—in the room, trying to explain what has now turned into a six-year saga.

I can’t take it anymore. I interject and seize control of the conversation. “Here’s the high-level synopsis,” I say, laying it out clearly. I summarize the radiosurgery from six months prior, the MRI we need now, and the medications that were just instructed. Plain and simple: order Preston an MRI, and in the meantime, give him Keppra and steroids.

Plain and simple. 

We wait in that small room for three hours before Preston is finally sent back for his MRI. It's been a long day. I’m starving since I haven’t eaten since this morning, and my knees have gone from a strong ache to a consistent throb (thanks to 10 years of gymnastics). I can only imagine how I look—and I may now be the weird girl at the office considering how I ran out earlier. But I don’t care.

While we wait for Preston to return from his MRI, I seize the moment to Google “grandma seizure.” To my horror, I discover it’s not “grandma” but “grand mal.” Well, that doesn’t sound nice, and as I read further, I learn it’s essentially the most severe type of seizure. So much for a cute little grandma seizure; this feels like a punch to the gut.

In his rush from the coast up to Hattiesburg, my dad pulled up the live Ring camera footage from in front of our home and took screenshots. Sitting there in that small ER room, my mom and I stare down at her phone at a picture of her and Preston standing in the yard with her arms wrapped tightly around him. My mom turns her head and looks at me with a face of pure conviction and says, “You see this? What this picture doesn’t show is the angel on the other side of Preston. With his left side not working, there is no way I could have held him up.”

The MRI doesn’t take long, and the nurses assure us they should have the results for us soon as they move Preston’s hospital bed back into place. For what feels like the hundredth time, my mom questions where the medicine is for Preston, as the only thing they’ve done is draw blood multiple times. “We’re getting to it,” they tell us.

Dr. Valle calls to check on Preston and tells him he can't scare his mom like that again

We’re normal again. Preston is fine. I stand next to his hospital bed, and we laugh uncontrollably at dumb, funny videos. He’s fine. Thank you, Jesus.

How we went from the brink of trauma earlier to now laughing in his ER room still astounds me, but I don’t question God’s doing. Time continues to pass, and we become less and less patient. Where’s the medicine? Where are the MRI results?

Needless to say, all four of us are starving, and we decide that my dad will go ahead and head home since Preston will be okay. That way, he can have some sort of supper waiting for us once we’re discharged. Fabulous, I’m so freaking hungry.

It’s 7:30 PM, and we still don’t have the MRI results. My mom makes yet another trip to the nurses' station, which is fortunately right outside of Preston’s room, and I stand in the doorway to be with him and participate in the conversation. It’s shift change. There are two new nurses behind the table, eating what must be their supper. Must be nice. But there’s also another nurse who is chatting it up with them and having a good time—he clearly doesn’t work in this department. He’s rather short in stature by my account with a shiny white head. He carries no authority naturally and possesses a feeble appearance. 

My mom, being who she is (again), walks up and politely intervenes to question where her son’s medication and MRI results are. They continue to ignore her as she stands there for a moment before the feeble nurse abruptly interjects and tells her that this ER has many patients. Many patients who need MRIs.

“Are they all MRIs for the brain?” my mom responds. “Are you putting an MRI for a foot ahead of a brain?” she continues. Why are the results for a young man with a clear history of brain diseases—three AVMs and two aneurysms—who also had a grand mal seizure today taking so long? Three hours of waiting and now going hours to read the results. Ridiculous, especially if you’re not going to give him the medicine his neurosurgeon is saying he needs.

It's nearly 8 PM and still no MRI results. We continue beating the dead horse, “Where is Preston’s medicine?” The nurses finally decide to share with us the doctor we saw earlier is going to prescribe Preston his medicine to pick up from our local pharmacy. No medicine will be provided in the ER. I’m not a fan of this approach. But he’s fine now—completely fine, at least on the outside.

After what feels like another good stint of waiting, my mom leaves me with Preston in his room to go speak with the nurses again regarding the MRI results and we learn that they’ve received the reading, however, they aren’t having their radiology department read the results. Why? The doctor Preston saw earlier in the day instructed the team to send the MRI video to Dr. Valle, as we requested, but in the meantime, no one in the hospital has physically read the results. Alarm bells go off in my mind, but I don’t throw a fit. I record a few videos on my mom’s phone and send them to Dr. Valle. He quickly responds, asking us to get a CD of the MRI and send it to him, as it’s hard to read the images well. However, there is definite swelling at the sites of the radiosurgery last November–the cause of today’s events. He again emphasizes, Preston needs Keppra and steroids now. 

We repeat this charade, and each time, we get the same results. There’s no sign of the doctor from earlier in the day, either. With nothing else to do, I sit in the chair next to Preston’s hospital bed, laughing with him while my mom smiles at us from the other side. We’re joking about the random, silly things that siblings often joke about when Preston starts messing with us to get more laughs. He sneers loudly and then begins making exaggerated snoring noises, turning his head away from me to the right. “Preston, stop,” I say. “That’s not funny after the day we’ve had.”

“Preston. I’m serious. Stop it and look at me.” 

Only it's not a joke. 

He doesn’t stop. I jump up and lean over the bed to see his face just as his left arm flies into the air, followed by his leg. He’s having a seizure.

“He’s seizing! He’s seizing! Nurse! Nurse! He’s having another seizure!” I scream out, and the two nurses who were enjoying their dinner behind the desk rush in.

“What do we do?! Someone do something!” I yell at them. Get into freaking gear. 

Preston’s extremities are flying everywhere as my mom works to get his right arm under control so he doesn’t injure himself. I move away from next to him so the medical staff can help him better–I know I'm in the way. I move to the doorway and watch in horror. He’s trying to remove his clothes again and he’s kicking his left leg up and down into the air. Over and over. Up and down. I watch as the hospital grippy sock on his left foot slowly begins inching its way off his foot with each kick. His snoring sounds continue and grow in volume until it's met with loud groans between each. 

A woman I’m seeing for the first time enters the room, and says that she is a nurse practitioner. She asks what’s going on. Hah. What’s going on? My mom looks her dead in the eyes as she tries to hold down Preston’s right arm and says, “We’ve been here for hours and your staff have refused to do anything but take his blood. And now, he’s having another seizure.” Clearly not her first rodeo, the nurse practitioner doesn’t get heated but is equally stern and measured in her response, again questioning what's going on. “He had a grand mal seizure earlier today, and the MRI shows swelling. He needs Keppra and steroids like his doctor said 6 hours ago,” I reply sharply. She tells me that they’re bringing the medicine now.

My mom, on the other hand, isn’t as measured. She stands over her son, trying to hold down the right side of his body. “We’ve been here for hours, and no one has done a damn thing for him! Not a damn thing!” Crap. I need to text Daddy. 

“Ma’am, we’re working on helping your son,” she replies critically. Now, there are approximately eight people trying to hold Preston down. The sock on his left foot finally lifts and flies into the air. I stand there, heated and terrified, unable to take my eyes off it as it makes its descent back to the ground. The snoring and struggling persist until, ultimately, he turns completely white.

He stops moving. 

No sign of breathing and what feels like an eternity passes as no one in the room moves. 

At this moment, I have never been more terrified in my entire life. 

I think he just died.

No movement. Just a pure white face, devoid of any color.

No. No, no, no, no, no, no, no, no. Please, Jesus, no.

Then his left leg slowly begins to rise again, the snoring sounds return, and this time, the fight of his life is upon us.

“Where is the medicine?!” I demand of the nurse practitioner. “Ma’am, they’re coming, like I said,” she replies.

“ARE THEY WALKING!?” I shoot back at her, locking eyes with her. Screw you. This may just be another patient to you, but this is my brother. I will fight for him since you clearly won’t. And I’ll fight you, too.

I move swiftly to my mom’s phone, realizing I need to text Dr. Valle and ask what to do.

“He’s having another seizure now,” I type. Dr. Valle quickly responds with the exact doses of medication, instructions on how to administer it, and reassures me that he’s happy to speak with the doctors who are with us.

It’s complete madness in this room, and Preston is clearly finished with the seizure that lasted about two minutes. Now, we’re in the dreaded postictal state.

The fight is on. 

The room continues to fill, and soon we begin moving to another area to make space. I lunge for my mom’s purse, trying to gather our personal belongings as they maneuver the hospital bed, with Preston’s arms and legs flailing about in the open air. I hear the nurses around me saying that once they get a handle on things in the next room, they’ll move him to the ICU for admission. Everyone around the moving hospital bed affirms their agreement. 

We move up and around a few corners and into a large new room. If I didn’t know any better, I’d think it was an OR, given how the lights in the center are arranged. The nurses connect him to all the wires and monitors as I take my position behind his head. I toss everything to the ground and hold his head, trying to steady him. There are now 15 people surrounding Preston. One person with a firm, sturdy build is in the hospital bed with him, attempting to sit on his legs to keep them down. Another five or so are on both the left and right sides of the bed, while my mom and I take up the back.

20 minutes pass and there’s a nurse across from me who has been notable among the others this entire postictal state battle. I don’t quite know what it is about him but he seems genuine. I watch as he realizes and hastens to take the blood pressure cuff from Preston’s right arm, revealing dark purple, bruised skin beneath. “Thank you!” my mom exclaims as he’s identified something no one else had amid all the insanity. She continues thanking him and telling him that he’s good at what he does. 

The snoring sounds continue, even louder now if that’s possible, as we reach the 30-minute mark. He’s fighting for his life, each arm and leg straining to break free. Tears stream steadily down my cheeks—they simply won’t stop. I speak to him, “Preston, you’re okay. Come back to us.”

We continue fighting with him for what must be another five minutes before I see two officers enter the room. My senses heighten as I watch their every move as they approach the bed. One stands to my left and gently, but unmistakably, nudges me over to the right. The other comes around my back and takes hold of Preston’s right arm to help hold him down.

We’re 40 minutes into the postictal state, and there’s no sign of stopping. Dr. Valle calls my mom’s phone again to instruct the medicine Preston needs. Everyone in the room is now aware of our out-of-state doctor situation, yet they ignore what I have to say. Where is the doctor we saw earlier today? They insist that they must be instructed by the doctor here regarding what to prescribe—I get it, 100%. But I don’t care right now. “He needs four of that,” I say, pointing to the medication the nurse holds that Dr. Valle specified.

“How much is that?” I ask. She responds that it’s only two. So I do what I should have found a way to do 45 minutes ago: I text Dr. Valle the direct line to the doctor Preston saw earlier, just as he said he was happy to do. In the meantime I persist again and again that Dr. Valle said four. A few minutes later, the same nurse returns holding some kind of medicine. One of the approximately 16 nurses trying to hold Preston down asks her what it is. She simply replies that it’s the other two doses. What did I say? Victory. The nurse with the medicine adds that the doctor instructed her to do so after speaking with Dr. Valle himself.

Told you he said 4. 

There are now a total of seventeen people holding down Preston. Seventeen. That’s how strong he is—his right arm alone requires the two officers, who are grown men, to keep it down. That’s when I spot him. He’s in scrubs, heavier set with white hair, and he’s staring directly at me from the doorway. I hold his gaze just long enough for him to register that I’ve noticed him. I don’t know what it is, but I know he’s here to take me away. 

I can’t stop crying. It’s absolutely ridiculous but I just can’t. My mom keeps looking at me every so often reminding me that he’s going to be okay. But I can’t explain it. In the 6 years since Preston’s initial journey with his AVM, I have always been the weakest and utterly terrified when he wasn’t mentally there. We are dealing with the brain here. Yes, I realize that in the grand scheme of things, a seizure isn’t necessarily the end, but there’s something about him losing his mental capacity that rocks me to my core.

My mom’s and my phones are in my pockets, and amidst all the chaos—trying to avoid flying limbs and managing everyone in the room—I keep forgetting to check them. Usually, I feel them vibrate when I receive texts or calls, but not tonight. Realizing I haven’t checked her phone in a while to see if Dr. Valle has sent anything, I reach into my pocket and find that he has. He notes that he spoke with the doctor here and confirms that the second seizure was due to Preston going without the medication that should have been administered hours earlier. Dr. Valle continues that he needs to review the MRI images himself rather than just through the video I provided. There’s no bleeding (Thank God), but rather just swelling around the radiosurgery area.

The heavier set man with white hair reenters, and this time he advances toward me. I ignore him, knowing exactly what he wants, but it’s not something he’s going to achieve. As I hold Preston’s sweaty head with both hands, trying to cushion it as he turns from side to side, the tears continue their steady descent down my cheeks. I'm not broken. I stand as a force at the head of the hospital bed, monitoring each person who enters and lays a hand on him. Finally, the nurse with white hair makes his move. Holding out his hand, he approaches me and asks me to come with him. I look him square in the eyes and simply respond, “No,” shaking my head.

I’m not going anywhere. 

My head is constantly on a swivel as I monitor what is now close to 20 people in the room, all with their hands on Preston—two of whom are sitting on his legs in the hospital bed. My attention, however, fixates on the two officers to my right, who are questioning among themselves what “this boy is on.” They think he’s on drugs. My mom catches it first, and with a heartfelt tone, she shares who her son really is. He’s not on drugs. No, he’s an AVM survivor, a black belt in karate, he loves his country roots and CrossFit too—which is why they’re having so much trouble holding down just his right arm. He’s a good kid, and once again, he’s fighting for his life against the two AVMs he underwent radiation for just six months earlier. I watch intently as the demeanor of each officer shifts ever so slightly as they register who Preston truly is.

We’re now 50 minutes into what I read on google should only last up to 30 minutes at most. Yet another nurse enters to administer something to Preston, but this one should put him to sleep. It takes several minutes before there’s any sign of it taking effect, but ever so slowly the fight begins to subside. Preston, however, still doesn’t register me speaking to him.

The fight comes to a halt, and the room begins to clear. The two nurses who had been sitting on each of Preston’s legs in the hospital bed start to get down, and the officers tell my mom they would like to meet Preston once he wakes up—we’d like that too. My mom, being who she is and not afraid to use her voice, thanks everyone in the room, but she specifically gives high praise to the nurse who made the crucial catch by removing the blood pressure cuff from Preston’s arm. “You’re a good nurse,” she says. She goes on to give exuberant praise to her new favorite nurse, as well as to all the other nurses in the room who helped in our hour of need. My mom’s favorite nurse smiles shyly and thanks her, while the other nurses, despite their professional demeanor, will surely engage in good conversation as soon as they step out the door about this vocal lady. 

She continues, “But I do not like that other male nurse. He sucks. Sucks!” (Referring to the feeble nurse who didn’t treat her well before Preston’s second seizure).

I’ll spare you the details of what ensues as we continue to thank everyone while they exit the room, but for my mother, it’s mostly about how the feeble, short-statured nurse with the shiny white head from earlier in the evening sucks, while this one is simply great.

Our good nurse turns off the lights to help Preston relax as he sleeps. Now alone, my mom and I sit on either side of his bed, experiencing what I can only describe as the purest form of shock and exhaustion. Crap. I haven’t checked my mom’s phone in a while. I pull it from my pocket and find a missed call from Dr. Valle just 10 minutes ago. I immediately call back, and my mother and I lean over from either side of the hospital bed to meet in the middle, to speak with Dr. Valle on speaker.

This second seizure should have never happened if he had been administered the Keppra and steroids. Period. Why wouldn’t the doctor treating Preston give him any? “I wish I was there with you all,” Dr. Valle says. In unison, my mom and I respond that we wish more than anything he was here too. “This is just a bump in the road,” he reminds us. My mom and I always feel better after speaking with him—especially her. I can’t pinpoint one specific reason for either of us; maybe it’s because he never gave up on Preston when it seemed everyone else around us had. Maybe it's that he actually went on to save Preston’s life but in doing so was genuine and transparent about the risks every step of the way. We just trust him. 

Thank you Jesus for putting Dr. Valle in our lives.

I call my dad next to give him directions to our new location in the ER so he can find us. He soon arrives, his eyes frazzled and alert, with his backpack strapped to his shoulders. Inside are fresh clothes for Preston to change into later, and he pulls out a few protein shakes for my mom and me. Protein shake—yes, please.

It’s a little after 10 PM now, and every so often, the good nurse my mom befriended comes in to check on Preston. My mom introduces him to my dad as “the good nurse.” Before the second seizure, we never saw our good nurse, but I know there must have been some internal discussion about moving him to Preston after that episode, especially since my mom wasn’t shy about how she felt. She never has been.

My home for tonight is the chair next to Preston’s hospital bed in this big ER room that still feels like an OR to me. Upon checking his forehead, I notice it’s rather warm, so I get a clean cloth, wet it, and apply it to his forehead. Every few minutes, I check his temperature and turn the cloth over to the cooler side. He’s been through so much tonight—and today too. My mind feels both full and empty at the same time, and I keep coming back to the hope that he won’t remember any of this when he wakes up. I don’t want to remember it. The doors to the room are shut, but I can still see one of the officers from earlier walking by every so often through the windows. He wants to meet Preston–the boy who survived the impossible, rather inoperable, but same thing. Now, he’s a young man facing a new battle with the very disease that almost took him from us six years ago.

There’s a knock on the door and crazy enough it isn’t the first time my mom and Preston have received a visit in this very ER from who appears in the doorway. The last visit was six years ago, the night Preston’s first AVM was discovered before he was ultimately transported to Ochsner in NOLA. He’s a family friend and an ER doctor here, but it's how he shares with us that he learned that Preston was here that catches my attention and makes my hairs stand on end. 

They were looking at his scans. The doctors in whatever location the doctors hang out in here. Oohing and ahhing over the incredible scans of my brother’s brain. The scans that are a measure of nothing short of a divine intervention, and instead of helping the young man that these scans belong to, they just chose to nerd out on the work Dr. Valle has done. I turn the cloth on Preston's forehead to the cooler side that’s been upright and hold it there, trying to distract myself from the distaste in my mouth.

“I heard them discussing these scans, and the more I listened from where I was, the more I thought it sounded a lot like Preston. I checked, and sure enough, it was him, so I came to find you all to see how he is,” he tells us. I can picture it now—several doctors in their white coats, marveling at the work of a physician who is capable of what only a couple are in the country. Keppra and steroids—simple and easily administered. What the hell? Instead, after another grand mal seizure and roughly an hour of a horrendous postictal state, Preston finally has the Keppra and steroids that Dr. Valle initially said he needed upon his arrival to the ER at 2:30 PM earlier today.

We each take the hand of the person next to us, and I place my spare hand on Preston’s right hand as he sleeps. The ER doctor leads us in prayer—prayer for healing and divine intervention during this bump in the road on Preston’s journey. With my head bowed and fresh tears gently gliding down my cheeks, I feel a measure of peace as I give it all to Jesus—the only defining reason for the miraculous journey that still is Preston’s story.

My parents and I sit in that cold, dark room for hours, waiting for Preston to wake up. I largely keep myself preoccupied by wrestling with him as he sleeps, trying to keep the nasal cannula in place under his nose. It must be tickling him, because he keeps brushing it away, but the good nurse said to keep it there. At this point, it’s more of a game that keeps me alert; the last thing we need now is a lack of oxygen after everything that has happened tonight.

“You need to go home now,” my mom says, looking me directly in the eyes.

“I’m not leaving,” I respond quickly. At this point, they’d have to drag me out of here, and she knows it.

Between my efforts to keep the nasal cannula in place under Preston’s nose, I just watch him sleep. He’s been through hell tonight. Wires snake across his body, and bruises are starting to surface from the events of the evening. Yet all I can think about is the sheer shock of it all. I can’t believe we are actually here.

I thought we were done. 

My mom continues to pester me to go home and sleep, as a mom does, but I keep insisting, “No.” The good nurse tells us that they can’t move Preston to a room until he wakes up, so we continue to wait and stare aimlessly, but I have Preston’s nasal cannula and the cloth on his forehead to keep me occupied and awake. 

It’s approaching 1:30 AM, and the level of exhaustion I feel suddenly hits hard. Looking at me, my mom says, “I’m going to need your help tomorrow. You know how it goes. You need to go home and get some sleep.” She’s right. I know how tomorrow will unfold—we’ve done it before. I’ll watch Preston to make sure he’s okay while she tries to keep watch, ultimately nodding off here and there after standing guard all night without a minute of rest. So I give in, knowing what tomorrow means and that, based on what the doctors and nurses are saying, it’s likely he won’t wake up for several more hours.

My thing is, and it’s always been the same—it’s why I couldn’t stop crying during Preston’s postictal state tonight. I have to know he’s “back” mentally. That Preston is truly Preston. I make her promise that no matter the time, she will text me.

Later, as I pull into the driveway, my car lights illuminate Preston’s new white truck. I lose it. Again. My eyes burn, and the tears welling up in my eyes feel like saltwater now. That beautiful white Chevy Silverado, which he’s waited so long for, is just sitting there—waiting for him. And now, after having it for only two months, he won’t be able to drive for some time. Why is this all happening to him again?

It’s 5:41 AM, and I’m wide awake. I’m honestly surprised with myself for sleeping until now. I roll to my left and right out of bed tossing off the covers. The carpet beneath my feet feels like a rock as my body adjusts to being awake and my sudden demand to make it move.

I grab my phone and text my mom about what woke me. 

Friday, May 3, 5:41 AM 

Me: Has he woke up at all?

Mom: Yes

Mom: In room

Mom: Why are not sleeping

Me: Woke up lol

Me: Was he normal

Mom: Yes

Mom: He’s good 

Mom: Sleeping now

Mom: Talking fine

Mom: Get some sleep

She knows what I need to hear.

Me: What time did he wake up?

Mom: I think around 2 in room around 3 

Me: Goodness, any talk of discharge time yet or still watching him? 

Mom: We will escape in the morning

Now able to relax a bit, I drift off to sleep for another hour before waking up and getting ready to head back to the hospital. I throw on a comfy oversized tee, shorts, and some tennis shoes. I’m out the door, ready to see him—my Preston.

Despite the shock that still occupies 90% of my mind, I realize during the car ride that I need to message my boss—he hasn’t heard from me since I rushed out yesterday. Before I start typing, I already know his response: “Take as much time as you need.” I can’t adequately express just how much that support means to me because I know he means every word wholeheartedly. Still, there’s that nagging feeling of wishing I wasn’t the girl who might run out on her responsibilities because of health crises. I never wanted to share this part of my life when he recruited me just seven months ago, but with Preston’s radiosurgery looming, I felt I needed to give him the high-level details. I know my situation is rare, and not all managers care about their team’s personal lives, but he genuinely does.

After a quick stop at Smoothie King to grab my mom a smoothie—she hasn’t eaten since yesterday morning—we head up to Preston’s room. It’s eerie how all hospitals seem to look alike; no matter the differences, I always get that sick feeling and an urge to bolt when I find myself back in one.

As we walk into Preston’s room, my dad and I are surprised to see him putting on his shoes—already dressed in his regular clothes. He looks fantastic. What even is this? Just seven hours earlier, the stress of the day had taken a significant and rather distressing toll on him, but now, on the outside, he appears to be a picture of health.

I hate AVMs. 

We spend the rest of the day at home, resting with Domino’s pizza. Between the three of us, one of us is always with Preston should he suffer another seizure. I’m feeling nostalgic; I don’t know what it is. Eventually, Preston and I settle on watching Cars. We must have seen this movie a hundred times when we were younger, but the joy I feel watching it now, in this moment, can’t be matched as I keep stealing glances at him.

It's clear now that leaving the hospital late last night, or early this morning have you, was the right decision. My mom is passed out on the couch, completely exhausted, and I can see in Preston's eyes that he’s getting close to wanting a nap. I’d be lying if I said I didn’t want to sleep, too; my head bobs forward every so often as I fight to stay awake. My eyes are burning, and my head feels heavy, but I'm terrified of what could happen if I'm not alert.

On this last loop to get you, my reader, who has surprisingly made it to the 20th page in my Google document all caught up on the rollercoaster that no one asked to get on, takes place just 4 short weeks later. It’s Friday night, the final night of preliminaries at Miss Mississippi in Vicksburg, Mississippi. I’ve been here since last Saturday, and the level of emotional and physical exhaustion I feel can’t be explained. Honestly, I don’t think I would believe the level to which this experience could take out of you if I hadn’t gone through it myself.

Most candidates are solely focused on competing this week, and rightfully so, but unlike them, I continuously find myself worrying about how my brother looks each time I see him. The last time I did, which was just yesterday at an autograph signing event, I got a sick feeling in my gut. Upon hugging him goodbye, I whispered to my mom, asking why his face was so red. If you’re unfamiliar with how Miss Mississippi works, just know that you have zero control over anything. The only time you can really speak to your family is during the allotted 20 minutes after the three preliminary nights of competition (commonly referred to as visitation), all surrounded by security and staff. There’s zero privacy.

It’s done. There’s nothing else I can do now—I’ve completed my private interview and the three nights of preliminaries, and tomorrow night, the Top 10 will be announced and a new representative will be crowned. I’m deep in conversation with both my directors, fully decked out in pageant stage hair and makeup, heels, cute dress—the whole thing.

“Angel. Angel. Angel, he’s seizing!” my dad says to my mom from behind me. I whip around to find my dad with one arm wrapped around my 6'4” little brother and his other hand holding his head up as Preston’s head turns just like it did weeks earlier. No. Please Jesus, no. This isn’t happening again.

What comes next is all a blur now, but there are a few distinct moments that are so clear I can picture them as if I’m still there.

My breathing quickens as the panic settles in knowing that there are no medical professionals in this city capable of Preston’s case. I clock and note that my mom and dad have Preston. He’s still standing and having a seizure, and clearly not another grand mal at the least.

I lunge forward but I’m quickly stopped by my hostess mom as she wraps her arms tightly around my waist holding me back. Preston is already being crowded now and all I know is that’s where I also need to be. I try moving forward and pushing away but her grip on me is good. I feel the tears in my eyes quickly fill until ultimately the dam breaks and a steady stream has begun down my once pretty glammed face caked with makeup. “Let me go, I need to be with him” I say to her. If it was anyone else holding me at this point I would have already elbowed them in the gut and moved on, but I love her for doing what she’s doing–it just all sucks.

Preston with my hostess mom

My hostess mom has been my hostess mom each of the 3 years I’ve competed. Completely drawn at random each year, the Lord has placed us together. She was there the first time I competed when I had no idea what I was doing and somehow ultimately came out with a Top 10 finish. She was there when I became a notable competitor in this organization, and more than anything, she has become family to my family. She’s without question one of my greatest blessings from competing. 

I keep trying to move forward as I feel her arms tighten around me, and it’s now that I realize how much weight I’ve once again lost during the week of competition—almost freakishly so.

With the seizure still seemingly continuing, I break free and run for my mom’s phone in my heels, rummaging through her purse. I can’t find it. My mind races as my hands fumble through her bag, but then I remember that I saved Dr. Valle’s number in my phone after last month’s incident. It’s 10:04 PM our time, which means it's 11:04 PM his time. Crap. I text him anyway.

Tears are steadily streaming down my face. I frantically type as my hands shake.

Friday, June 7, 10:04 PM 

Me: This is Angel Gail Preston’s sister. He is having a seizure right now 

Me: Do we give him another dose of keppra? 

He responds in 2 minutes confirming what I thought as my mom keeps turning to me asking if he’s responded.  

Dr. Valle: Yes.. make sure he is on his side 

Umm, what if he’s still standing as both my parents hold him up? Oh my word, the postictal state is what comes next. What I should probably mention next is that we are in a large ballroom full of 39 delegates. Additionally, each delegate can have up to 6 people in visitation, then there’s the local directors for each delegate, the staff, the volunteers, and the security. This room is packed. 

My hostess mom, still at my side, runs over to my mom’s purse with me again as I explain that we’re looking for the Keppra. As my shaking hands fumble through her purse, I remember a specific item worth dodging and whisper it to her under my breath to do the same (something we can now laugh about). There are so many medicine bottles in her purse for Preston as a precaution against his brain swelling, and as I pull each one out, I frantically ask my mom which is the correct one.

Why we can’t call Keppra just Keppra instead of Levetiracetam on the bottle, I don’t know. 

In the midst of everything, I hear my mom say from behind me to someone asking what’s going on, “This is why she’s so passionate about what she does (being my work with Preston Strong). This isn’t something she chose.” The seizure is over, lasting only 20 to 30 seconds, but as usual, it feels like a lifetime.

As I move back and forth from my mom’s purse to Preston I catch sight of my directors in my peripheral vision. I don’t turn to look at them because I can’t bear it, but I’m sad they’re witnessing the why behind Preston Strong and my ultimate reason for competing. Their eyes are filled with sadness and concern, and I know they want this to be over for me.

Someone has brought in a chair for Preston to sit in now as the EMTs make their way in and are ushered to us at the back of the ballroom. All my typical reservations go out the window and I just call Dr. Valle and hope he’s not trying to sleep or even treating another patient. He immediately answers and I just begin speaking, “Hi, Dr. Valle, this is Preston’s sister. We are at Miss Mississippi and he just had a seizure like I messaged. I’m handing the phone to someone here with us who is a nurse practitioner.” I then hand the phone to a woman I've just met, knowing she can speak in medical terms far better than I ever could, yet equally terrified to put this in her hands. The two of them complete their doctor talk before the woman hands my mom’s phone back to her. Dr. Valle tells my mom that Preston cannot, under any circumstances, be in the room during the production numbers when the flashing lights take place during finals tomorrow night; the cause of tonight’s seizure as a result of his swelling brain. 

The EMTs want to take Preston to the hospital, but Dr. Valle has made it clear that he doesn’t need to go, as they wouldn’t be able to do anything for him—which we unfortunately know all too well. He urges once again the need to get Preston the MRI we’ve been trying to secure for the last week. The roadblock, however, is that we live in Mississippi, and the doctor who is ordering the MRI is in Florida, making scheduling a nightmare. Each phone call ends with us being told that they can’t do anything for us. It’s a battle we’ve been fighting for the last week and one we will continue. 

I lower myself to my knees in the only respectable way I can in my dress and look up at Preston while grabbing his hands. The tears continue to glide down my cheeks even though the seizure has been over for a few minutes now. I look up at him with all the joy I can muster for him. I just stay there with him while ignoring the world around us to confirm what I need–his cognitive state. 

We’re good. I giggle when he speaks his first sentence responding back to me, pure relief. 

I’m not sure how long I stay there on my knees. The world around me seems to disappear as my only focus is just being there, holding his hands. The two EMTs finish up and ask once more if we would like to go to the hospital. My dad tells them no, but they then look to Preston and remind him that he’s over 18 and that it’s his decision. “I don’t want to go to the hospital,” Preston says.

Our instructions from Dr. Valle are clear: go back to the hotel and rest. No lights tomorrow.

I know what’s coming next. They’re going to tell me to go back to the hotel with the other delegates and leave Preston. I’m “calm” now because of the reassurance Dr. Valle gave us and since Preston seems like he did after recovering last time, just a month ago now. I know that tomorrow will determine what my life will look like for the next year, and I also know that however far I make it, if I go with my brother now, it will be brought into question for fairness.

I walk with my hostess mom to her car, and once inside, I stare blankly at my brother now sitting on the bench outside the convention center with my mom as they wait for my dad to come around with his truck. “Okay, let it all out,” she says. So I do. I cry uncontrollably as she drives back to the hotel where the delegates stay, savoring this rare moment of privacy.

Finals night is special and comes with additional guidelines that the powers at be strictly impose since the competition is broadcast live across the state of Mississippi. One guideline is that after a certain time, they will not allow the doors to the auditorium, where the competition stage is, to be opened for anyone. There are production numbers throughout the competition, but the two primary ones are the opening and closing. Before anyone even told me, I knew that my mom and brother wouldn’t be in the audience tonight.

I’ve now competed for this organization for three years. Three years of my service initiative being my brother’s story and every person with authority knowing intricate details—not to mention the live show of how all too real his story is, and continues to be, from just the night before. And with all of this, the big solution put in place to accommodate the unfortunate byproduct of my brother fighting for his life is to provide my mom and brother a small room within the convention center to watch the competition on live TV–of course having Preston turn away from the TV as necessary during the production numbers. 

My mom and brother are two-thirds of who I look for each time I step on that stage, and that was taken away on the most significant night of competition, all for the convenience of the show.

There’s no regard for the delegate and her family who have invested in the organization for three years. The common and ceaseless sentiment the powers at be have shared since the first crown was placed on my head three years ago plays over and over in my mind and now feels ironic: “We’re all family and we do for family.”

The grand gesture of a TV in a small room within the convention center stopped working before the opening dance even finished, and together, my mom and Preston sat in a quiet room all alone. While I spent my night stepping on a stage, pretending and smiling to convey the illusion of fortitude, my mom and Preston found a hallway and spent their evening with a security guard with no idea of what was happening on the stage. 

I left the after-party that night dancing. I grabbed the hand of my AVM warrior and survivor, and with more pure gratitude in my heart and joy in my bones, I quietly thanked God under my breath that the only title I'm leaving with tonight is "sister." Together, we danced out the door, and I wouldn’t change a thing.

It was last year, just weeks before Miss Mississippi, that I did a mock interview with a distinguished and kind gentleman. To this day, it’s one of the most enjoyable interviews I’ve ever had, and like he said afterward, “it’s because we were having a conversation.” Don’t get me wrong; he and the other judges tried their hardest to rattle me and catch me in a loophole, as all pageant judges do, but it was Preston Strong that truly connected us. A rare disease that had impacted him personally, just like me. The Aneurysm and AVM Foundation has termed it beautifully: United And Rare. Because when you actually meet someone else affected by or in this community it does just that–unites. 

He called me. The day after I danced out of the after-party with my brother, the man I had interviewed with a year before reached out because he had heard about Preston’s seizure at the competition and was concerned. During our conversation, I mentioned—without any objective—that we were really anxious about getting an MRI for Preston scheduled. We needed it in days, not weeks, and certainly not months like all the local hospitals and sports clinics were offering for earliest availability.

Preston had his MRI two days later, all thanks to the connection I made through a pageant interview.

Since this summer, Preston has had two more MRIs, both of which still show swelling in his brain as a result of the radiation, and the risk of seizures continues to hang over our heads. So now, you’re all caught up. I advocate and I share in hopes that this may reach those who need it–in my nothing to brag about small circle. Not because I enjoy spending my Sunday’s and evenings after work writing what has turned out to be a 24 page document, and a full revival of moments I wish never happened. What’s next? It looks like we have a trip in store for us this December to visit Dr. Valle in Naples, and I too will have to wait and see.

I never thought I’d put any of this to paper and yet I knew the title before typing a single word. Preston was healthy, and our future was only supposed to consist of routine check-ups that would include the sunny beaches of Naples. I also never envisioned using my voice—though small—to express where we were let down through it all. And while it may seem that this is too much or a lot, just know it merely scratches the surface. There’s so much more to tell, and one day, that too may just be put to paper.