With a new year upon us, it’s natural to look back and consider the changes and experiences that occurred in the previous year. I thought it was fitting to speak with Melissa Byrd, the founder of Jensen’s Heart of Gold Foundation, about the changes she has seen in herself over the past year, and over the eight years since the charity began.
Melissa admits that it was never her intention to start Jensen’s Heart of Gold. She says she selfishly wanted to relive a memory of her son, and his love of the Super Mario character, Luigi.
“When Jensen was home on hospice, he was always in his Luigi costume,” says Melissa. “He loved playing the Super Mario games. He took us in the backyard and gave us Mario character names and we played a little game of baseball together. His team character was, of course, Luigi.”
What began as a softball tournament to honor and remember her son, Jensen’s Heart of Gold Foundation has evolved into eight years of raising funds for families struggling with diagnosed children. Melissa names each participating team after a Mario character, just as Jensen did. She remembers 22 teams signing up for the first Super Slugger tournament and raising approximately $8,000. Fast forward to September 2018, with 55 teams participating and over $60,000 raised in just one event. Like Melissa, the organization has changed and evolved over time.
One of the biggest changes Melissa has seen within herself has been her mindset. In the beginning, she felt more comfortable remaining behind the scenes, simply delegating the funds. It was still too close to her, too emotional – but things have started to change.
“I used to believe I didn’t have anything to offer these families, because Jensen died. I thought they wouldn’t want to hear from me, but I’ve realized I have a lot more to offer than that. Over the last couple of years, I’ve started getting more involved. I want to act as a sounding block for these families when they need it. I try to read between the lines and determine what they might need based on my own experience. I’m still very emotionally tied to it, but it’s not as crippling as it once was. Every time a new diagnosis would come to me before, it felt like I was reliving my pain.”
Asking for help is hard. For anybody. But Melissa believes that there is comfort for these families in knowing that someone is out there that understands.
“Usually there is a lot of community and family support right after diagnosis,” says Melissa. “But people start getting lost and begin to struggle after everyone goes back to their routines. Life goes on for everyone else.”
“I feel like receiving help from someone who has been through what I’ve been through is different than just taking charity from a stranger. Pride gets in the way for a lot of people. It did for me, too,” she adds.
So we sit there, and we keep looking back. Melissa continues to tell me stories about Jensen, about their experiences at the Ronald McDonald house in New York. How her life changed, and again, how she has changed.
As she reflects, I ask her, “What would you tell someone entering 2019 with a diagnosed child?
Hindsight is, of course, 20-20. Melissa concedes that it’s easier to offer this advice now while looking back. She opens up about some of her regrets during Jensen’s battle.
“As your child fights for his or her life, you’re put into very high stress situations. You’re exhausted from sleepless nights. You’ve been put through the ringer. You’re hopeless because you can’t help them or take their pain away,” Melissa continues.
She encourages families to try to understand that these children can’t control their reactions to the medications— the toxic chemicals and steroids that are being pumped through them.
“You can’t console them, and they can’t control it,” she says. “I have a couple of moments that are so vivid in my mind where I lost my temper and got frustrated, because they’re inconsolable and there’s no definitive reason for them to be upset and screaming.”
Melissa thinks these temper tantrums she experienced and true acts of “roid-rage” might just be a child’s way to verbalize what they’re going through – their way of getting it out.
“Losing my patience and my temper has been the thing that haunts me the most. It’s been so tough to live with that guilt. Had I only known to find the pause, to stop and see the situation for what it is, and be more compassionate and understanding.”
Melissa says that’s her biggest advice: stopping to pause. She also suggests that you find an outlet that allows for the pause. Without your outlet, the lack of sleep and the feeling of helplessness will over power you. Exercise was a part of that outlet for her.
“I tried to keep exercising. If it’s part of your routine, I would encourage people to keep doing that. I would run the stairwell of the hospital or do push-ups on the floor. You just need some sort of outlet – journaling, painting, whatever. You have to have a way to get it out, so you aren’t taking it out on your child. I firmly believe if I had more of that in the beginning, I might not have had those couples of moments where I lost it."
Melissa accepts that she’s human and knows she shouldn’t beat herself up for her reactions to an unbearable situation. It’s something she holds onto, but is working to let go and forgive.
“This year has been a year of fresh perspective and new experiences. When I say new, even some of the mundane rituals have seemed new, because of the shift in my mindset from negative to positive, victim to survivor, worthless to worthy, helpless to hopeful. I have poured my heart into helping others, but I have found a new way of being that also supports myself. I cannot thank you all enough for being a part of that.”
Our hope is that you are able to use these stories as a resource in the battles you may be facing heading into 2019. No matter what stage of our challenge lies ahead, there is something truly hopeful in the start of every new year.