Brooke’s Round Up – The Next Chapter – Part 9

Preface:

Alicia and I have to remind you readers and families of special-needs individual right up here at the top that “You are not alone”, because it just wouldn’t fit in at the end. Brooke’s Round Up is less than a month away and we hope that if you are reading this in 2024 that you will attend and share in the unconditional love and acceptance that event provides. If you’re not reading it at the time it’s posted and you are struggling, please remember just as we said in the first article, please reach out to a church, community group, friend, neighbor, anyone at all if you feel alone.

Many of the previous articles demonstrate how much this family has been holding inside because often those families don’t know how to express their feelings. Last week’s article was different but hopefully you readers (and future readers!) have read it first, because it highlights that opening up to other people and being vulnerable is a really difficult thing to do sometimes. Having and loving a special-needs person is something you can’t put into words—we’ve struggled doing just that in this series. We also wanted to give you a glimpse into the history of how this series came to be so that you would know that the telling of every story has to begin somewhere. The conversation has to begin somewhere, even if it means opening up to a stranger. Don’t procrastinate; don’t hesitate; share your story.

With that said…let’s do this…

Baseball…we’re talking about Baseball…

Last week I made a mistake and used the wrong adjective and said “I’m a perfectionist” about writing these articles. I’m not; I should have said “I’m someone concerned with authenticity”. See there’s a difference between being perfect and being authentic and if you’re perfect can’t admit your faults but if you’re authentic you can. Do you recall how when asked for ideas on articles Alicia said, “Brooke loved Baseball!”? Initial thoughts were, “How in the world would that ever be impactful?”! I know the basics of baseball; I just never really liked it. Frankly, I think it’s boring—bring out the pitchforks, people! To me, there’s not a lot action for a bull in a china-shop at a baseball game except for when the wave comes around and you can jump up and release some pent-up hyperactivity. So if I’m ever at baseball game I do what I normally do most of the time when I have to be quiet—I people watch. Similarly, I’ve been “people watching” this family for months now.

The second thought that came to mind was, “C’mon Alicia be authentic—talk about the hard stuff!” Eight articles later she’s done just that—talked about the hard stuff. The whole family has joined in and talked about the hard stuff. Here we are on part 9, talking about the hardest of all–death. That’s not the theme though—this week’s theme is wait for it…Baseball. No one (and I do mean no one) could possibly be more shocked than I that here we are in the most important article of all and we are talking about…baseball. It didn’t make sense to me at first either, but apparently we’re going to power through and make it happen. Last week I mentioned a baseball musical I love though that’s called, “The D*mn Yankees”, and it fits right in—and I think Alicia will think so too if she trusts me one last time.

Also, apparently as a stickler for authenticity—you can’t get more authentic than Baseball, right? After all the catchphrase goes, “It’s as American as apple pie.” That’s “Why We Say It”, right? Brooke loved baseball and this is the last article on her alone—so let’s give her what she wants. Let’s “Play Ball!”

Take Me Out To The Ballgame…

Before a major league baseball game there is a lot to take in visually. One of the things you probably notice is all of the people out on the field grooming the sand, painting lines and manicuring everything extremely precisely. The grass has been cut in a beautiful pattern and everything looks perfect. In theater terms one would say, the stage has been set before the action unfolds.

Last week we introduced Tonya more into the story; she is Alicia’s mother and Brooke’s grandmother. If you’ve forgotten way back in Part 1, hers is the house where all the family convenes and she is the one with hundreds of framed photos on the walls celebrating her family. Alicia fancies herself “a mama bear”, she’s proud to be a fighter and yes she is fiercely protective of those she loves, but she’s more like a black bear who is more concerned about protecting her cubs and guiding them to safety. Tonya on the other hand is like a grizzly bear who if you cross it might rip out your throat.

This week I think I finally figured out what gives Tonya that aura of ‘Je ne sais quoi” that first drew me to her—it’s the fact that paradoxically she is not only authentic but she is also a (selective) perfectionist. She is both at once and until you can understand that you can’t understand Tonya. I came to this realization slowly at first by getting to know my “first friend” at Blazin’ Trails, just by watching her expressions as she went back to her seat after playing in the band at church. Tonya is a lover of music—an extremely talented individual that can pick up any instrument and teach herself to play. Anytime the song didn’t come out perfect she would walk down the aisle and shake her head—I found this hilarious. But still didn’t connect all the dots until I starting spending time at her house during those “family gatherings” and saw her authenticity.

Tonya is pensive, like Nathan. When we talked to the family about how hard it was for Nathan being shuffled about when his parents had to leave to be in the hospital with Brooke, Alicia said, “After a while, Nathan literally had a room at my parents house—it was just easier that way.” Tonya added, “The other grandkids would look and ask ‘Why is it called ‘Nathan’s’ room? And I would try to explain it to the other kids—that he wasn’t the favorite it was just that we had to always take care of him.” When Brooke was alive and not in the hospital, Tonya would be the one to take Brooke to doctor’s appointments when Jason and Alicia couldn’t. She relayed a story about a time when she took Brooke to a physical therapy appointment and Brooke was being exceptionally difficult with the therapist who eventually gave up. Tonya told that therapist, “She (Brooke) is acting. She knows what she’s doing. Watch, I’ll take her out to the car and all of a sudden she’ll be just fine.” Sure enough, Tonya took Brooke out to the car, sat her in her car seat and the crying stopped and Brooke laughed. Tonya was right—but she is no-nonsense and knew Brooke needed that therapy so she took her right out and brought her back in. “She always knew what was going on,” Tonya said, “She couldn’t say it, but she knew exactly what was going on around her.”

So what did I spy at Tonya’s house that connected all the dots for me about her aura of ‘Je ne sais quoi” It was her garden, called “Brooke’s Garden”. For someone who isn’t very concerned about a lot of “girly” stuff and would rather be playing music, there is a meticulously maintained garden in her backyard with a glorious Hydrangea growing in the middle. Tonya takes care of this garden with as much precision as is done by the professionals at a stadium. This garden sits right along the pathway from the house to the pool. At family gatherings everyone is rushing along this path because the food is inside the house and the pool is where the action is. Yet if you stop “to smell the roses” so to speak and ask Tonya about the garden, a woman of such few words will talk at length. It’s her tribute to Brooke and she takes it very seriously and you would know that if you just asked her. That beautiful hydrangea in the middle—that’s from Brooke’s funeral. It’s the one thing that lives on from last time Tonya saw Brooke.

There’s a second thing you really notice before a ballgame is the music. It sets the mood and gets everyone excited as the stadium fills in. Last year at Blazin’ Trails four generations of the Carpenter family got on stage to do a special concert. Tonya’s mother at 90 years old played the keyboard. One of the people in the band, Logan Alicia’s nephew, said something that I’ll never forget. I’m paraphrasing but he said, “We’re all a musical family—except for Billy and Alicia—I don’t know what happened there.” People watching, I saw Alicia laugh and laugh. Little did she know how wrong that statement would become—she had music in her blood she just needed to let go and try.

For months after that, the church was looking for a drummer and no one would “step up to the plate” and take it on; eventually however, Alicia decided she was going to do it in the spring of 2024 when the first hints of green were showing outside. She made that decision three weeks before the Easter service—three weeks beforehand, that’s when she decided she was going to be the drummer. To anyone else that seems insane, but not to someone with boldness like her. Also maybe it’s because she loves the Christian heavy metal band Skillit. In Tonya’s house, her music room is located at the opposite end of where Nathan’s old room is. Mother and daughter set up some drums and started practicing together. Much to Tonya’s consternation—Alicia is often off-beat, but she’s learning and getting better all the time. What’s important is that Alicia took that chance and proved people wrong, just like Brooke did when she beat all the odds and survived and was born—a tenacious little one. After services I still watch Tonya walk down the aisle to see her reaction. Now, she still be may shaking her head at mistake, but there’s also a little hint of a tiny smirk on her face. These days she’s leaning more towards the authentic side than the perfectionist side. As for Logan who joked that his aunt wasn’t musical, well she just played backup drums for him a few weeks ago—they’re making music together.

Autumn is approaching when Baseball season ends. The fields will remain unattended and there won’t be any music playing. Likewise, at Tonya’s house soon the plants in Brooke’s Garden will wither and die. In the meantime all through the harsh winter while the other bears are hibernating, mother and daughter bears Tonya and Alicia will be practicing drums together in that music room, with Brooke’s Garden just outside. Those two mothers have been through the harshest times, after all. They can make it through another winter until spring because they know that in spring Brooke’s garden will bloom once more.

Three Strikes You’re Out!

Baseball is mostly a no-contact sport, but that doesn’t mean there isn’t any contact at all. The most common contact is the the touching of a glove on someone to make an “out”. The most thrilling contact is when someone is running for home and it’s a battle of force between the runner and the catcher if he has the ball—the catcher has to make sure he doesn’t “drop the ball” (and yes, if you’ve been following along that catchphrase originated from baseball). There are other moments of contact though, maybe not commonly thought of for their significance.

For instance a coach may come out to the pitcher’s mound to give him a pep talk and give him a sturdy pat on the shoulder or after a game a player on the losing team as they are walking towards the dugout may give a side-hug to a fellow teammate. The most exuberant contact though comes from winning, because at that point everyone is hugging. The players in the dugout rush on to the field to meet the players on the field and they all join in one giant mosh pit of hugging. Likewise in the stands all the fans embrace with joy that their team has won.

In baseball if you’re up to bat you can only have three strikes before you’re out. Now we’re going to talk about the three men of the family we’ve been following are Jason (the father), Nathan (the brother) and Keith (the grandfather). Each of them have a story of embrace with Brooke.

Strike 1: If you ever meet Keith and ask him about Brooke, he will immediately pull out his phone because there’s a video on there he wants to show you. This video is one of his prized possessions. It’s of him holding Brooke on the couch and when he tickles her she laughs without abandon. When he stops, she goes silent. He tickles her again and she goes wild, and then he stops and she goes silent. The cycle repeats. When meeting to discuss this article with him, he came up and said, “There’s this video I have to show you.” I had to remind that I’ve seen it three times already. He just didn’t realize it because for us it’s not personal; but for Keith it’s more than personal—it’s soulful. Each time he watches it is as if it’s the first. It’s a moment of unconditional love and affection—pure bliss. When she was here she brought that joy and laughter, but now that she’s gone there is silence. There’s not another chance to make her laugh.

Strike 2: We have talked about how Nathan was so young when his sister was sick and what effect that had on who he is today. He’s independent, maybe a little guarded although he’s learning to open up again. There were so many times when Brooke was alive that Nathan and she would snuggle in bed watching movies until they fell asleep embracing one another. It was comfort of having another warm body right by their sides. One time though young Nathan couldn’t hug his sister like he wanted to though.

Alicia recalls, “There was a time though when Brooke was in the ICU, it had been weeks and he hadn’t seen his sister. So they allowed Nathan to come into the ICU and he sat in bed the entire time and didn’t move for hours. He just laid there next to her silently, so still—just to be with her.” Sometimes an embrace is a soft one.

The hardest readers is this next one, strike three—it’s the out.

Strike 3: So often in this series we have written about how Brooke’s Round Up was started and how tragically Brooke passed away right before the first Brooke’s Round Up. Players that choose to retire from the game do it for many reasons, but those who last the longest eventually do it because their bodies just cannot take it anymore. Brooke was a professional, a veteran player in the battle against her diseases. In March 2017 however, the time had come when it became too much for her little body to keep on going. Brooke had played on this earth long enough and it was time for her to hang up her jersey and retire to the Heavenly realm. But that didn’t mean that she didn’t have one last fight in her, one chance to beat the odds again.

Brooke’s final game, began on March 15th and Alicia recalls, “Jason and I were sitting in Brooklyn’s room at home and we started to “ugly cry” because she was on a ventilator and usually that makes you breathe easier, but because her heart had stopped working as well as it should it made it very difficult for her to breathe. Her body was filling full of fluids and everything was so swollen—her abdomen, her arms, her legs, everything.” What was happening that was her lungs were starting to fill with fluid because she had congestive heart failure from all of the years and surgeries she went through to keep her alive. If you remember all those years ago Jason and Alicia had to fight to get someone to finally diagnose why Brooke kept getting pneumonia and she was given a TPN line to feed her and stop her lungs filling up. This wasn’t a time that they could fix the fluid problem though. She continues, “It was about 2 AM and Jason and I sat in her room and cried and talked and prayed. We had always said that when we knew it would be time we would not be selfish and we would choose quality over quantity of time with her. After a while Jason looked at me and said, ‘What are we doing, Alicia? What are we doing to her?’ In the morning we called hospice and explained what was happening. Our amazing doctor, Dr. Williams, and our incredible hospice nurse Cindy Joe listened and said, ‘God sent an angel to you in Brooke. But her heart is just not working anymore, and to be honest you’re at the point where it’s quantity now over quality for Brooke’ At that point they told me that we could unhook her TPN and let her go naturally.” That same TPN they fought so hard to get for her—now was the time to take it off. “That was the time we decided to call the whole family and let them know what was happening.”

That day, March 16th, Brooke’s TPN was removed and the end approached. Alicia says, “For me, every moment from then on seemed like the final moment. From that moment on, our house was never empty. There were always people coming and going when they could, but everyone else still had lives and had to go to work—Jason and I were the only ones with Brooke the entire time, we even sent Nathan to school trying to give him a normal life as possible while this happened.” For the next few days Brooke held on until March 20th when she really took a turn for the worse and they knew the time had come. “At around 8:30 in the morning we started calling everyone to come and come quick. Cindy Joe knew that we had been keeping Nathan in school, but she told us, ‘If you want him here to say goodbye to his sister, he needs to come soon.’ My sister-in-law Lyndsay worked at Nate’s school so she brought him home. Everyone was doing everything they could to get there—but it didn’t seem like they would make it. My father-in-law in Tennessee said he was on the way but he didn’t know if he would make it. My brothers Billy and Josh said they were going to try their hardest but they weren’t even in their office they were somewhere else in the state.” One by one they did make it though—everyone finally got there because Alicia knows that Brooke was fighting one last time to say goodbye to everyone she loved.

Around 2 PM, shortly before she passed away, Brooke began to squirm and get very agitated. Alicia thought that maybe some music would help her, so her sister-in-law Callie, turned on music on her phone and suddenly a song came on by Chris Tomlin, a singer Brooke loved and would always light up when she heard his voice. Callie, an incredible singer would later sing that song at Brooke’s funeral. Nathan who also loves Skillit who just had a new release called ‘”Stars”. Alicia recalls, “That song had just came out and Nathan loved that song. I’ll never forget him laying in bed with her and singing that song to her—it’s one of my most precious memories.” (We pause to think, maybe this winter Alicia will learn to play that song herself.) Shortly after that, Brooklyn passed away. It was March 20, 2017, just as the final frosts of winter were ending and it would be spring again soon in Carolina. She was at home surrounded by her family—all of them. She survived into over-time so everyone could be there.

Alicia remembers, “After she passed away, we wanted to get her cleaned up—I knew that was the last thing I could do for her. So my mama and my mother-in-law helped me bathe her and get her ready. I sat her in my lap and and dried her hair. At that point though I was probably having a nervous breakdown because I would not leave that room. I could not let her go—I just couldn’t. Finally Cindy Joe told me that since Brooke was in the children’s hospice program the rules were different and you don’t have to have an ambulance come and take them away; you were allowed to take them there yourselves. Jason and I felt that it would be less traumatic for Nathan not to have to see the stretcher come into the house and put a sheet over her. Really though, I couldn’t just let someone else take her; we had to bring her ourselves.” For the last time Brooke was leaving the house, never to return again.

Cindy Joe drove the family to the funeral home and Harvey Gates, their pastor, was in the passenger seat. Poignantly, once they got into the car, besides Cindy Joe, there were the four most important people of the first Brooke’s Round Up together—Brooke, Jason, Alicia and Harvey. Together Jason and Alicia held little Brooke’s body in the backseat. It was the saddest of all embraces. A final hug with the person you love the most in the world who cannot hug you back. In the fall, the four of them were expecting to be joined together in joy on a hayride, instead they sat together in silence in a personal hearse. Once they got to the funeral home Alicia remembers one of the hardest moments of her life, “We brought her in and all I really remember is seeing her laying on that silver table and eventually I had to turn and walk out that door.”

Three strikes and you’re out in baseball. We could end this section defeated with a strike out, yet in baseball there is another option when you’re up at plate. Four Balls that’s the other option. After 4 balls you get to walk to first base. It’s the first leg of the journey around the bases until you finally get home. It’s just the first step—like the many stages of grieving. You can’t skip ahead from first plate to third plate in baseball, you have to run the course. In baseball though there is also a time when someone wants to “steal a base” behind the pitchers back. So this player will scoot towards the next base, feeling out whether or not they can make it. Sometimes they succeed, but most often they’re forced to turn back to where they started. That’s a lot like the grieving process, sometimes you can push ahead but sometimes you fall back. And that’s okay—after enough years and hurt and healing, eventually you’ll get home.

So perhaps those three hugs weren’t strikes and rather they were balls—what would the 4th ball be? That would be the embrace that Jason experienced after the first Brooke’s Round Up where he lovingly held another special-needs child and later broke down because “She looked and sounded like my Brooke.” It was the first real curveball thrown at him after her death and his first step forward. Not for Alicia, though, it took her longer and she spent a lot of time in denial before moving onto anger and there she lingered for a long time.

After the game…

We’ve touched upon this before, but every year Blazin’ Trails Cowboy Church puts on the Rodeo at the Pondersosa to raise money for Brooke’s Round-Up. It’s an amazing volunteer day where everyone works so hard, but without a doubt there’s one group of volunteers that works the hardest. This group is in charge of trash duty. Hilariously, they call themselves “The Trashy Girls” and their team leader is a spunky, horse-loving, God-fearing woman whose name is ironically…JOY. Like any big event, there are thousands of people filling up trash cans and someone has to remove all that garbage. If you’re in a big stadium watching a baseball game it’s the same as our rodeo.

After the event, the fans have exited, stands are empty—but for a while the bright stadium lights remain on illuminating little pieces of evidence that something big occurred. What is the evidence? Well it’s trash of course! Not all the trash makes it to the bin during a big event, some of it gets left behind in the stands. Whether it’s because people were excited, exhausted, angry that their team lost, or just plain lazy, all that remains after a big event are all these pieces of trash that someone needs to pick up.

When you lose your special-needs child or loved one, the love, drama, excitement, worry suddenly comes to an abrupt finish. The event is over. It’s like Newton’s law of perpetual motion—those in motion tend to stay in motion—those at rest stay at rest. So when a loss occurs and your whole life is halted—how do you move on? Alicia shares, “I keep myself busy 24/7 since Brooke passed. When sit you sit your mind starts wandering. I can get in a very depressed state very easily if I think about it too much.” Jason adds, “We are always non-stop with Brooke. Always there was something going on. So suddenly, (when she was gone) you have all this…time. All this empty time.”

There is one story that perfectly explains that feeling for this family. When we asked Keith and Tonya what it was like for them after Brooke was gone it brought up Keith said, ”Well first we lost Brooke and then we lost Nate (because he went home permanently). It’s kind of like as a parent you raise your kids and eventually they move out but you want to support them and keep in touch. Brooke was just…gone. There was no more memories to be made or time together Tonya adds, I was either with one or another and then all of its sudden it was gone. You just felt like a void. Sometimes I would call and say, ‘hey does Nate want to come spend the night?’ It wasn’t like he was my own child, and I didn’t think of him that way, but I got so used to him being here…” the sentence trailed off there because she had said enough and everyone knew what she meant. It’s Nate’s old room down the hall, his bed still made but empty, the one without the music.

After losing your special-needs loved one, likewise, the nurses and staff at the hospital who have become your fans and cheerleaders in your cause are suddenly absent. They were so important to you on a day to day basis, you made connections with them that changed your life and now they are pretty much gone out of your life. Jason and Alicia were finally home in their “real home” for good. No more sleeping on sofas in the family room at the hospital, no more showering there and no more living out of a suitcase. It should have been a relief, but for them the silence was deafening.

Besides the time after the game when everyone has left and the stadium is empty, there is only one other time that silence fills the space, when the raucous cheers and jeers come to a halt. That time is when a player is injured. It doesn’t matter on which team the player plays, instinctively fans from both sides become silent out of respect as they pray for the best and hope that player gets up.

Last Thoughts: Every Team Needs One Other Thing Though…

Why did Brooke love baseball? She couldn’t play—she couldn’t join in the game. Maybe one day in heaven I can interview her and finally ask, “Did you really love baseball and what was it about it that you loved so much?” Who knows what she’ll say—maybe she’ll agree with me and think the game itself is boring (gasp!) but the people watching is more fun. In many ways, Brooke was a people watcher. She had observe most of the time because she couldn’t communicate in exactly the same ways that most of us can. That’s why her laughs meant so much to her family—because that was her way of expressing herself. After all, in her last moments she proved she was a people watcher, waiting until she could see her whole family one last time.

It could be as simple as that, but there’s likely another reason. Going to baseball games was a time for her to be outside of a hospital and with her whole family. Just like going to the beach and hearing the roar of the ocean and being able to feel the wind in her hair, a baseball game was a release. Getting outside, hearing the sounds around her, taking in the smells of the Carolina wind with its hint of pine, feeling the warmth of the sun during the day or the coolness of the moon in the evenings—it must have been a magical time for Brooke who spent so much of her life in the sterile and fluorescent hospital.

Alicia, not Brooke, has been the one who insisted that, “Brooke loved Baseball.” For the above reasons, I agree that’s partially correct, but I don’t think it is the whole reason Alicia says that. Previously we talked about how throughout her life people rallied behind her because she was the underdog. She brought them together—gave them a common purpose and something to root for and especially something to fight for. To Alicia and for this family and for much of the community, it was as if Brooke was the team.

That’s where the musical D*mn Yankees finally comes in readers. As I’ve gotten to know Brooke through the stories her family shared and watched and re-watched that video that Keith loves. There’s a song from that musical that forevermore when I hear it will remind me of her—this girl I never knew. It’s called “You Gotta Have Heart.” A coach goes around and sings about all the things the players can’t do, but he reminds them that even if they’re terrible players they have something more important—they have heart. The main chorus with fantastic harmonies goes like this (and if you want to sing and dance along you can at this LINK and of course don’t worry if you’re off key, just sing your heart out!):

You’ve gotta have heart
All you really need is heart
When the odds are sayin’ you’ll never win
That’s when the grin should start
You’ve gotta have hope
Mustn’t sit around and mope

Nothin’s half as bad as it may appear
Wait’ll next year and hope
When your luck is battin’ zero
Get your chin up off the floor
Mister you can be a hero
You can open any door, there’s nothin’ to it but to do it
You’ve gotta have heart
Miles ‘n miles n’ miles of heart
Oh, it’s fine to be a genius of course
But keep that old horse
Before the cart
First you’ve gotta have heart

Writing this has been like being backstage while the musical is going on and peaking through the side-stage curtain to see the action on stage. Being able to get to know these people from the outside, has been a character study of all the main cast. If I was to write a review on the play I’ve seen that was Brooke’s life I wouldn’t list her character as “the team” though—to me, she wasn’t the team in this story. Everyone else around her was the team: her family, the community, the nurses, the therapists—all of them. They were the team that made up “Team Brooke”.

Brooke didn’t have to play in the game because every team needs fans and every team needs one other thing we haven’t mentioned. Before a major league baseball game someone or something is going around getting the fans excited. Every little-league, high school and college in the country has one of these too in some way or form because this character is the namesake of the team. What is it that every team needs—who gives the team its “soul” and makes it something bigger than just a bunch of players? Who is everyone really rallying behind?

The answer is—it’s the Mascot. Every team needs a mascot, and that, dear readers, is what I see Brooke as. Brooke was the mascot for so many people in her life—in her life, in this story, in Brooke’s Round Up. She is the Mascot because it’s the mascot that rallies the fans and it’s the mascot whose image we put on shirts and root for and cheer on. When Brooke grinned—her fans grinned. When Brooke was “batting zero” all of the fans stopped and were silent for the injured player—they waited with baited breath. Then when she pulled through the impossible, that’s when she “became a hero”. If teams didn’t have a mascot we would just call them by the city name—the “Carolina Players.” But if you add a Mascot, well that is what gives the team it’s heart, and Brooke, well she had heart—miles and miles of heart.

Author’s note:

To all the readers, remember that sometimes life will be “A swing and a miss”, but no matter what you have to step up to the plate. And when you step up, do it authentically and do it with heart—miles and miles of heart.

And to my dear sweet Alicia, thank you for sharing Brooke’s amazing story with me and trusting me enough to write it. I hope this was other one that I was able to “knock out of the park for you.” And as always, I got your back, girl.

-Your sister in Jesus Christ (all glory to Him), B. Kenney

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