As runners, we can often vividly recall our past races, we can instantly feel the race morning nerves long after the race has passed.
When Hollie Hughes thinks back to the 2016 Wineglass Marathon, she harkens back to race morning, and relives the moments spent getting herself and her six year-old epileptic son to race the 26.2 miles from Bath to downtown Corning, New York.
Little did she know as she pinned on her race number, that a few hours later she would break a Guinness World Record pushing her son in a Team Hoyt Chair to a 3:10 marathon. Their whole story though, began years before and continues to unfold.
I first met Hollie in 2010 at the Buffalo Marathon where her husband Andy and my sister were both running. It was my sister’s first marathon and she prepared by following a training plan with Andy’s guidance.
At the time Hollie was pregnant with her third of four children. In September of that year, Jonah was born alarmingly early (29 weeks) due to a placental abruption. As a result of his early birth, Jonah was diagnosed with cerebral palsy. After nine weeks in the NICU, Hollie, Andy and family finally took Jonah home to begin their new life as a family of five, but they knew it would not be without challenges.
Hollie started running when she was 12 years old, but truly found a whole new purpose for it in the years following the births of her four kids. In 2016 her reason for running changed even more. Jonah was diagnosed with another serious condition: epilepsy. Now Hollie was running for a cause. She started training and racing with Jonah in a Team Hoyt chair, which led to the goal of running the Wineglass marathon with him along for the ride.
At the same time, she was raising money for epilepsy while training to race the Philadelphia Marathon without pushing Jonah. There, less than two months after her world record run at Wineglass with Jonah, she broke her own personal record, finishing in 2:57 and 20th place on a cold windy day.
I was able to catch up with this inspiring woman to find out more about her running journey.
SR: How did the role of running in your life change after the birth of each child?
Hollie: My view of running after each child was totally different due to circumstances. I was young (21) when I gave birth to my daughter, Alina, and it took about a year, a new job coaching modified track, and a newfound friendship with my training partner, Jessie, to really begin running with a purpose again. After giving birth to Noah, I began running two weeks postpartum and jumped back into running local races a couple months later. After Jonah’s birth, however, my love for running completely disappeared for months.
Retrospectively, I think it did so out of necessity. Jonah was born prematurely at 29 weeks following a placental abruption, and he spent nine weeks in the NICU. It was a truly traumatic experience. Trying to balance spending time with our children at home with the desire to live at the hospital with him was heart wrenching. I constantly felt torn in two. When I attempted to run to help deal with the situation, it only made me feel guilty.
The internal battle raged in my mind, and running lost its allure. It took a conversation with Jessie’s husband months after Jonah was home from the hospital to start running again. Her husband stated that she missed me, and he missed her being happy because that’s what our runs did and still do: make us happier. At that time, the conversation provided me with a reason to begin running again. Unfortunately, injuries knocked me down a few times until I gave birth to our youngest, Jack. I bounced back very quickly and started running seven days after his birth.
It was after Jack’s birth that this crazy notion developed that Jessie and I would attempt to run new marathon PRs despite being moms and wives and the responsibilities those two titles entailed. Prior to children, I did not appreciate running. Running is so much more meaningful because of them. I am no longer a mother that feels guilty for taking time away from her children to spend time running, to spend time working toward her goals, whatever they might be. My running is teaching my children to work hard, to love what you do, to not makes excuses, and to never give up on their dreams. They are my biggest supporters and my biggest fans, as I am theirs.
Hollie: Our support system always has been incredible; this never faltered. My husband remained positive and strong. I, on the other hand, felt crushed and overwhelmingly so. I lived the month of July and most of August with a sense of fear, dread, and hopelessness. His diagnosis and the possibilities surrounding it made it challenging to breathe.
Running no longer offered any sense of peace. My legs constantly felt dead; my lungs felt consistently compressed. My runs became the times I would imagine what I was going to do if Jonah stopped speaking to me, if I never heard “I love you” again, if I woke up to find he seized in his sleep and stopped breathing. My runs became torturous, yet I trudged on because I promised Jonah I would push him in his Team Hoyt Running Chair during the Wineglass Marathon. I knew if I disappointed him, if I let him down, that I would sink in the water I was barely treading and drown.
During this time, I became a version of myself I never will be again; I was meaner, angrier, sadder, harder, and I felt more alone than ever before. Looking back on that time now, it is hard to justify those feelings. The diagnosis (CSWS/ESES) only named what was happening. We were bearing witness to it for months prior. We watched the regressions, the increase in seizure frequency, duration, and intensity, the loss of his laughter and light in his eyes, the consistent fatigue that permeated every moment. Giving name to it did not worsen what was happening, but it gave us a starting point to start seeking appropriate interventions.
SR: With Jonah’s new diagnosis, and failed medical interventions to help, you turned to lifestyle and diet modifications. The MAD Diet (Modified Atkins Diet) was one of those changes, is this just for Jonah or for the whole family? Has changing his diet changed how you view your own diet or how you view food in general?
Hollie: The MAD diet is just for Jonah, although it certainly affects what the entire family eats. I try to make his meals similar to the meals we are eating for dinner. For example, if we were to eat lasagna, he eats a low carb version (low carb spaghetti sauce, generous amount of olive oil, mozzarella cheese, and meat without noodles). Jonah’s limited to 10 grams of carbohydrates a day with 65% of his diet coming from fat and 35% coming from protein, so it definitely entails creativity in the kitchen and is extremely time consuming. I am constantly measuring, calculating, and configuring trying to keep him happy and satiated. As far as my view on food, that has not really changed all that much.
I am not a subscriber to low-fat or no-fat foods, I definitely believe good fats are necessary. I believe in a well rounded diet consisting of meat, vegetables, fruit, and complex, healthy carbs for my family members that do not require diet therapy. Jonah’s diet largely excludes fruits and vegetables, and this challenges my mindset. He receives a supplement daily for all the vitamins, minerals, and nutrients he lacks as a result. However, I have read the literature and attempt to stay up to date on the research regarding diet therapy. It can be extremely beneficial, and we will continue with it until we no longer see the benefits from it.
SR: How has running with Jonah changed things for you and him?
Hollie: I went from feeling every loss Jonah suffered, and feeling every loss he might potentially suffer, to feeling gratitude for all that we have been given. That run was the first time in many, many weeks that I did not feel alone in this fight against epilepsy, in this battle against a syndrome that was trying to destroy my son.
Earlier in the week prior to the Run for Epilepsy [Hollie’s first race pushing Jonah], I received an email asking for runners to join an Athletes vs Epilepsy team at the Philadelphia Marathon in November (which happens to be national epilepsy awareness month), and I felt compelled to join. It made me feel like a larger purpose existed and that I could do something positive rather than continue living in the negative.
Around the same time, this amazing woman/mom/friend who is an Epilepsy Warrior shared the Run for Epilepsy event on my Facebook page. I shared my excitement surrounding both events to my sister, Kristen, and together, with our friend, Jennifer, they organized a shirt sale, unbeknownst to me, prior to the run.
When we arrived at the Run for Epilepsy, a sea of purple people were mingling together. In fact, so many people were wearing the same purple shirt that I initially believed they must be the ones given out at registration. It took quite some time before I realized that all these shirts read #JONAHSJOURNEY, and that the sea of purple people consisted of our supporters: our family, our friends, and friends of our family and friends of our friends.
The money they raised from the t-shirt sales became an overwhelming part of the donation given to the Epilepsy Foundation, and they were the same shirts they wore while cheering Jonah and I during the Wineglass Marathon.
SR: When lining up with Jonah are you more nervous than when you line up for races by yourself?
Hollie: The nerves surrounding a race with Jonah are definitely different from those I experience while racing alone. I’m constantly double checking to make sure my cell phone is charged and that I have both rescue meds in his chair. The race director for Wineglass is simply incredible, and so I knew support was on the course if we should need it during the marathon.
I worry about whether or not he suffers a seizure significant enough that we need to drop out of a race or whether or not it makes it impossible to start. Jonah loves (and I mean LOVES) winning medals, trophies, etc, so he would be heartbroken if he were unable to finish, so I worry about that instead of worrying about the time I’m running or whether or not I’m hitting a pace I want.
I worry about the crowds at the start. He is not a fan of loud noises or being around a lot of people, so he typically covers his ears and closes his eyes until the race in underway. I worry about the runners in front of me and what they are going to do because navigating around them with a Team Hoyt Running Chair is extremely difficult. I worry about the possibility of a flat tire and what that would mean. I worry if I brought enough food and drink for him. I worry if he’s too hot or too cold.
Did I bring enough toys for the long stretches? Did I remember a diaper, wipes, extra clothes in case of emergency? What will we do if he needs a restroom? What will I do if I need one? Who will watch him? What if something happens to me, and I am hurt and unable to continue? Who will push him for the rest of the race?
SR: Going into Wineglass Marathon you knew the Guinness World Record for a stroller marathon was 3:17 (and was set by a woman pushing a much younger child in a conventional running stroller). Did you ever think maybe, just maybe it could happen that day?
Hollie: At the onset of the race, I absolutely did not believe that it was a possibility at all. We were not running for a specific time, although in the back of my mind I wanted to hit a Boston qualifier and thought I potentially could run sub 3:30 with him. Earlier in the week, however, I was dealing with a stomach bug that lingered for days. When I awoke Sunday morning, I did not feel as weak but my stomach was still queasy; therefore, when we left, my goal was simply to make it to the finish line.
It was not until about half-way into the marathon when I realized how fast we were running (we were on 3:12 pace), and I started to think that just maybe it might happen. At mile 23 I felt confident we would run under it, as we were running negative splits at that time. When we crossed the finish line, I truly could not believe what we accomplished.
SR: How did you recover from pushing Jonah at Wineglass? Did you take any extra precautions to make sure you rebounded better in time for the Philly Marathon?
Hollie: After Wineglass, I basically completed a reverse taper. After a few days of complete recovery, I started back at the gym taking [strength training] classes. The week after that I began running again, and the week following that we added in workouts and increased mileage. My body felt pretty good until around two weeks out from Philly. It was around that time that I started to question my decision to run the marathons so close together. Fortunately, the taper over the last week seemed to be what my body needed to bounce back. I only wish I could have controlled the weather on race day!
SR: You’re set to run Boston in April, will Jonah be there with you as you run?
Hollie: Jonah most definitely will be with me in spirit. Unfortunately, he is not allowed to participate until he is 18 years of age. Following Wineglass, I reached out regarding the rules with push chairs and was told that both competitors need to be 18 or older, so I will not be competing with him this year. Twelve years from now I’m hopeful we will run it together, and if I am incapable of pushing him then, his brother Noah assured us both that he will.
SR: How do you balance training for your own marathon with training for a marathon with Jonah? How often do you run with Jonah for example? Do you do long runs or workouts with him? When is a solo run a priority?
Hollie: Training for a marathon with Jonah made training for my own marathon a little easier. Knowing I would be pushing a 50 pound child in a heavy running chair made me really take a step back and reevaluate my weaknesses. I knew I needed to focus on gaining strength and working on staying injury free.
I spent time in the gym doing [strength training] classes using kettle bells, pushing sleds, focusing on core — doing all those things I should have been doing but never really did. If I felt an injury rearing, I took time to address it versus trying to push through it. Making it to the marathon in one piece became more important than attempting to make it in the best shape of my life. This translated over into my training for my individual marathon as well.
As I mentioned before, Jonah loves to race, loves to earn medals, loves to compete, so our workouts and hard runs were local road races. We never ran any long runs together, and after a race with him I needed to take time to let my body recover. I would experience significant lower back pain and hamstring tightness following a race, so I took time to address that before heading out on another run with him. When we would run together during training, my run with him would be a double for that day.
Basically, Jonah guides our training. When he wants to run, we run. On the days he doesn’t, we don’t. When he says he’s done, we’re done. When he tells me to pick it up, we go faster. When he tells me not to give up, we don’t give up.
SR: Why does Jonah want to run? Do your other kids run as well?
Hollie: I definitely believe we are the reason he wants to run. While Andy does not run like he used to (he is extremely busy attempting to rejuvenate Elmira [New York] by buying decrepit buildings and renovating them), he still enjoys the sport and heads out occasionally to run the trails behind our house or to take the boys out for a run.
In addition, Jonah’s witnessed my running endeavors for years, and he’s witnessed my crazy excitement as I yell at the TV or computer when running is on. He knows what the Boston Marathon is because he’s watched it with me every year since he was born. In fact, we were watching Boston when he declared that he, too, someday would run a marathon.
In addition, he’s watched every race that’s been televised that Molly Huddle participated in, including the Olympic Trials, which we watched from his hospital bed. On a side note, Molly is actually his all time favorite athlete, so she’s partially responsible for his love of running as well.
He spent many, many hours in the double jogger first with Noah and then with Jack until he grew too big to fit himself.
In regards to our other children’s love for running, our oldest, Alina, does not enjoy running at all. She absolutely loves ballet and spends many, many hours a week at the studio. Her dream is to dance with a company someday. Our oldest boy, Noah, loves running and enjoys the local road races. Our youngest boy, Jack, is still too little to tell. He always wants to run with us, so I’m hoping that it continues.
A little more about the Guinness World Record
The previous marathon record, 3:17, was set by a woman pushing a much younger child in a conventional running stroller. Hollie has since submitted her time for consideration, but has yet to hear back. Because she was using a Team Hoyt chair, it is unclear if it will be considered for the record or if they will have to create a new category. The Team Hoyt chair is actually much longer and heavier than a traditional running stroller, creating different challenges which might make it a perfect candidate for its own record!
When talking about their experience at Wineglass, Hollie said:
Honestly, I still cannot fathom it. We were buoyed by great weather, an incredible support team, and a feeling that is indescribable. That day felt designed to be our day, to be our race. I do not feel it is something we will replicate, and we will not try to do so. I never want to place any expectation on the races we run because I feel it limits the amount of joy we can experience together especially with all the outside challenges factored in.
Needless to say Hollie is incredibly inspiring to me and so many others. She and Jonah have proved that nothing is impossible.