Work has been challenging of late. Frustrating, overwhelming, personal.
The second I walk through my door, it doesn’t matter. I hear ‘MOMMY!’ and see two smiling boys who do not care who said what, who thinks what, or what I do for my job. They are my why – they are my respite – they are my life. They remind me to take a breath and focus, and they fill my cup back up.
PERSPECTIVE. What if the frustrating, the overwhelming, the personal… never stopped? What if those challenges engulfed you 24/7… and kept on coming, one after the other?
My challenges are nothing. There are people around us who are true superheroes, overcoming unbelievable circumstances with poise, resolve, positive attitude and sheer goodness.
Cue Amanda Reinert.
Parents’ Night at my sons’ school last year.. I was sitting in Evan’s classroom, waiting for the teacher to begin, and I noticed another mom in the room. ‘Holy shit – that’s Amanda Reinert!’ I quickly scanned the class list to confirm – sure enough, Amanda’s daughter Ava was in Evan’s class.
The beauty of being in the ‘pageant world’ – you meet and learn about some INCREDIBLE women. Amanda was crowned Mrs. Nebraska 2014, and later, Mrs. USA Universal 2017. That’s a BIG DEAL. I remember thinking to myself ‘I wonder what she’s like? And what is she doing now?’
The beauty, the smile, the confidence all hide a disturbing story in Amanda’s past. When she was just 2 years old, her grandfather began sexually abusing her. No one knew for years, until at 6 years old, Amanda drew a detailed picture of genitals. Police were contacted, the case went to court, and a traumatized little girl was forced to sit with lawyers and a judge, across a table from her grandfather, asked to describe everything that was happening to her.
“In that moment, I refused to speak or testify,” remembers Amanda. “Because of that, charges were dropped, and he was never punished for what he did to me.”
Unimaginably, Amanda was targeted again a few years later at 11 years old.
“I was on a camping trip with my grandma, my cousin and a couple who were friends with my grandma,” recalls Amanda. “We are all sleeping in a giant tent. I awoke to find the husband <the friend of my grandma> on top of me with his hands over my mouth.”
“I didn’t share my story of sexual abuse until after I was married,” says Amanda. “I lived my life in shame and feeling extremely isolated and alone. I endured some extremely rough years through high school, and one day, I decided I wouldn’t do it anymore.”
Amanda signed up to compete for Mrs. Nebraska – and won – with the mission of spreading awareness of childhood sexual assault and forming a support network for survivors. She became a certified facilitator with Darkness to Light, a national organization committed to the education, awareness and prevention of child sexual abuse. She also became a spokesperson for the LFS RSafe® program, one of the largest child sexual abuse treatment programs in the Midwest.
“There are thousands of other survivors out there like me,” says Amanda. “I want them to know they are not alone. I want parents of victims to know that there is hope. I want to educate parents on how to prevent this from happening to their children. I used that microphone <as Mrs. Nebraska> to reach as many people as I possibly could to spread the messages of support to survivors, hope for victims and education to families.”
That mission became even more personal for Amanda when she became a parent herself.
Ava Michelle Reinert was born October 24, 2012. Amanda’s jam-packed photo albums on Facebook are titled ‘Just The Beginning!’, ‘I Love My Life!’, ‘This Will Be The Best Year Yet!’
In 2016, Amanda was crowned Mrs. Nebraska USA Universal. Pictures taken that fall with Ava and husband, Brady, show a seemingly perfect family with the world at their fingertips. They had no idea how much everything would change in just a few short months.
Just weeks after performing in her Pre-School holiday program, Ava rolled her ankle while playing at the Omaha Children’s Museum. It didn’t heal.
“<Doctors> discovered compression fractures, which were odd, but they gave us a boot and sent us on our way,” remembers Amanda. “About a week later, she started complaining of severe back pain, and within a few days, she couldn’t stand, walk, or sit at all. She was bed-ridden within another week. Over the next 10 weeks, Ava endured hundreds of blood tests, x-rays, appointments, MRI’s and bone scans. No one could tell us what was wrong. We even had a doctor tell us ‘maybe she is faking it.’ She was poked more times than we could even begin to count; she was bruised and bloody and used to scream ‘Mommy, please make them stop, Daddy, please don’t let them do this to me.'”
Amanda took this picture on March 23, 2017. Ava couldn’t stand or walk; she was in constant pain, sick and exhausted. Amanda and Brady struggled whether or not to use their Disney on Ice tickets they had previously purchased for Ava.
“We decided she should be allowed to have a couple of hours of relief and enjoyment and we took her,” remembers Amanda. “She was in so much pain and fighting through it to enjoy the magic of the show. I remember looking at her smile and wondering it we’d ever see it again.”
Ava was misdiagnosed with Brittle Bone Disease; a 48-hour infusion at Children’s Hospital & Medical Center made her even more sick. Doctors admitted Ava to the hospital to conduct more tests. She was diagnosed with Leukemia on March 27, 2017.
Ava immediately began chemotherapy and a brutal 800 days of treatment.
“There were MANY days where I believed she may not make it,” remembers Amanda. “One of them was when she started chemotherapy and became immunocompromised. Out of nowhere she spiked a 105-degree fever and became unresponsive. Within moments, we had five or six nurses and two doctors in our room. The situation became critical very quickly; when a child is on chemotherapy the most ‘insignificant’ infection can be deadly, and we did not know what was wrong with her. She was like this for about 12 hours, the scariest 12 hours of my life. They never did figure out what caused it but within 72 hours she was back to normal.”
Ava became known at home and at the hospital for her inspiring resilience, astounding for anyone facing grueling treatments, let alone a little girl.
“Ava was ALWAYS the strongest one in the room. She never complained – ever,” says Amanda. “She had to take five liquid medications three times a day that were terrifyingly awful in taste (I tried them.) She rarely cried and was always so strong. The only time I ever saw her break was when we had to shave her head. Her hair hung on longer than we had expected and one morning, she woke up and we all knew it was time. That night, her begging screams and her scared face are something I will never forget. Even reliving that night to share this story brings tears to my eyes.”
Slowly, Ava began to improve. She celebrated her 5th Birthday in true Princess fashion. She slid down the jumbo tube slide with her mom at Vala’s Pumpkin Patch that fall. She opened presents on her Dad’s lap on Christmas morning. And she inspired hundreds of family members, friends and loves ones with her smiles and fight despite all odds.
“Ava <also> underwent 12 months of physical therapy to relearn to stand, walk, run and climb stairs,” remembers Amanda. “That was also very difficult. We discovered Leukemia was hollowing her bones; that is why we were misdiagnosed with Brittle Bone Disease. She had seven compression fractures in her vertebrae because of the weakness in her bones that ultimately prevented her from walking or standing.”
As Ava’s hair grew back and she prepared for Kindergarten, Amanda once again used her frustration and anger to fuel a mission… to battle the disease that nearly stole her daughter.
“Everyone knows cancer is terrible and that childhood cancer is unthinkable, “says Amanda. “What they don’t know is that we literally had to poison and nearly kill our baby to save her. Treatments today are TERRIBLE and they have not improved in more than 20 years. I cannot accept that. Our family will fight and push until there is a better way; no child should have to fight in the way that Ava fought.”
Amanda called upon Ava’s hundreds of supporters to take action, forming Ava’s Army.
T-Shirts. Hash tags across social media. Fundraisers. Ava’s Army was seen across Omaha and Gretna, from gyms to schools, among family members and Amanda’s pageant sisters. And in December of 2019, Amanda hosted her first Sugarplum Ball, a formal dinner, auction and gala. Little girls (and big girls!) dressed up like real-life princesses for a night of glitter, fun and love for one another.
“Ava’s Army exists to raise money to fund the fight against pediatric Leukemia. 100% of what we raise goes to research,” says Amanda, who quickly notes Ava’s fight is far from over, even though, thankfully, she is now in remission. “People see Ava and they think ‘she’s good, she’s done.’ She’s not. Because of the poisonous and awful things we did to her, she will have a lifetime of repercussions. Chemotherapy melted all of her 6-year molars and they were pulled out. She suffers from neuropathy from chemotherapy damage. She is five times more likely to have breast cancer later in life or other secondary cancers. She is likely infertile from treatment. Heart problems, kidney problems, liver problems, learning disabilities, bone issues, sleeping issues – the list of things that children who ‘survive’ a cancer battle is unthinkable, and people have no idea. We will continue to raise money, raise awareness and fight for kids like Ava until there is a better way.”
To date, Ava’s Army has raised more than $55,000 with a goal to hit $100,000 by the end of 2021. More than 2,500 people follow them across social media (click here!) to see how they are constantly working to give back to places like Children’s Hospital & Medical Center – and the young patients there.
And by the time sweet Ava – smart, wise beyond her years, kind and caring – joined my Evan’s class at school, I followed her journey as the little girl who ‘had’ cancer, and I followed Amanda’s story, thinking of her as the strong, brave mother-turned BEST room parent ever. (Seriously – creative, always on top of events for our teacher and our class, that Mom you see on Pinterest who ALWAYS has her act together.. I BOW DOWN, AMANDA!) The Reinert family had built a new home, Ava was starting first grade and they were expecting a new baby!
Bennett Joseph Reinert arrived September 12, 2019, and was diagnosed with Down Syndrome immediately after birth.
“Bennett is perfect!” says Amanda. “But I’m ashamed to admit it took me about six months to accept his perfection. We did not know he had Down Syndrome until he was born. It hit me like a semi-truck.”
Months earlier, Ava had just recovered from another medical setback: a vicious dog attack that sent her back to the hospital. The family had just moved to a new home; Ava was starting at a new school. Amanda had been planning this massive fundraiser gala with thousands of dollars in donor support on the line, all while still advocating for sexual assault survivors by sharing her powerful, yet exhausting personal story. And once again, the Reinert family was shaken with unexpected news and an overwhelming, unknown future.
“I felt like we couldn’t survive or endure anymore,” says Amanda. “I did not have the energy to stand back up. When they told me he had Down Syndrome, all of the worst case scenarios came to me – children and adolescents with Down Syndrome are between 10 and 30 times more likely to develop leukemia. After Bennett was born, we went through dozens of doctors’ appointments to check his ears, eyes, heart, digestive system, cognitive abilities, and more. It was like reliving Ava’s diagnosis all over again. I couldn’t function.”
As the COVID-19 pandemic shut down the world.. the Reinerts isolated together at home, learned from each other, and grew closer as an extraordinary family of four. Just as his big sister Ava had been a light for her parents in what seemed the worst of times, so, too, was their new little man with the larger than life smile.
“Anyone that meets him will tell you he is a miracle,” says Amanda. “He is 19 months old and has no health complications (thank God) besides mild hearing loss, which he wears hearing aids for. He is developing cognitively and physically ahead of where he should be and he is thriving in a big way. He is a miracle to our family and I know in my heart he will change the world.”
The Reinerts are now active members of the Down Syndrome Alliance of the Midlands (Bennett was their cover model for the 2020 Annual Report!) They proactively and positively celebrate and share all of Bennetts ABILITIES rather than his disabilities – he’s a ladies man – he’s a cuddler who loves to laugh – HE NEVER. STOPS. SMILING.
That last part…. maybe we could all learn something from Bennett. From his sister, Ava. From their proud Daddy. And from their amazing momma, Amanda, who NEVER. EVER. QUITS.
“I have had to learn that you can’t be negative or weighed down by things you can’t control,” says Amanda. “You can’t control other people, their actions, the world, a pandemic. You can control YOU.”
These days, Ava is a BUSY 2nd grader who excels in school, competes in cheerleading, and will represent Nebraska at the national Princess of America pageant in July. Bennett recently realized how much he LOVES climbing, and he adores being outside. Brady and Amanda recently celebrated their 10th wedding anniversary in Jamaica. And Amanda just started a new business – Pink & Plaid Sleepover Parties. (Click here to learn more!)
“We want to bring happiness into a world that can be stressful and overwhelming,” says Amanda. “We want to see kids smiling and laughing and making magical memories, AND we want to help parents sit back and enjoy those moments as well.”
Pink & Plaid provides snacks, decorations, activities, food, party favors, clean up, everything – with Amanda as key organizer, remembering the importance of every special moment a family can celebrate together.
“We are so thankful (and I mean genuinely, to our cores, thankful) that our babies are still alive and thriving,” says Amanda. “We have family, we have our home, we have jobs, and we have our health – we celebrate that. We celebrate that as much as we can. We still have rough days, of course, but we are so thankful for one another and to have our babies. Nothing else really matters.”
My challenge to anyone reading this: join AMANDA’S ARMY.
Be grateful. Celebrate life and happiness. Exude positivity. Stay hopeful.
“Don’t let things you can’t control take away your happiness. You can control the messages and vibes you send into the world.”
INSPIRED BY AMANDA’S STORY? YOU CAN HELP!
The 2nd Annual Superplum Ball for Ava’s Army will take place Saturday December 11 in Omaha! Tickets are available now for children, adults, businesses and sponsors! CLICK HERE for more information!
Walk or Run one mile anywhere this Saturday, May 8, to honor Ava in the Sammy’s Superheroes Walk To Remember! Your $10 donation raises money for childhood cancer research! CLICK HERE for more information!
Learn more about Down Syndrome Alliance of the Midlands – including the Building The Future Gala this month! CLICK HERE for more information!
Learn more about Lutheran Family Services and the RSafe program. CLICK HERE for more information!