Today – Saturday, Feb. 16, 2019 – is the day of the second annual black-tie fundraiser gala for the BennettStrong Foundation at Northampton Valley Country Club. Approximately two months ago, I sat down at the Warrington Starbucks – one of them – with foundation co-founder Mary Pellegrino, whose incredible journey with her special needs son, Bennett, and husband Greg (shown together at left) has shaped her new mission in life.
Mary is not just a wife and mother, not just a teacher at Tohickon Middle School in the Central Bucks district and a color guard coach for CB West High School. She is a symbol of almost superhuman strength and an invaluable support system for countless families across the region who are raising medically complex children – kids like Bennett, who was born in June of 2013, four months premature, a “micro-preemie,” and has fought through a real firing squad of medical challenges to grow into the spunky 5-year-old he is today.
“We’re giving voices to families that are similar to ours,” Mary says, describing the foundation she and Greg established in 2017. “The advice comes from us to members of the community in a very private and compassionate way, so families can get the support they need, but they don’t necessarily need to advertise that they’re getting it.”
Mary, a natural extrovert raised in New England (Patriots fan alert!) who copes with heartache through conversation, has been anything but private about her struggles, and she dove into her current role as a NICU heroine without ever really intending to. The BennettStrong Foundation continues to break new ground in the world of the NICU, short for Neonatal Intensive Care Unit, which was the Pellegrino family’s world for nearly Bennett’s entire first year on Earth.
The story behind the foundation will make you reevaluate what “strong” really means.
Bennett Pellegrino, as you might have guessed, is the BennettStrong Foundation’s namesake, and like his mom, he’s one strong, resilient cookie (Mary’s pet term is “kiddo.”) He spent much of his early life in the NICU, and at CHOP (Childrens Hospital of Philadelphia), requiring some kind of emergency treatment, like clockwork, on every odd birthday – except his fifth – and endured surgery after surgery after surgery.
He has been diagnosed with cerebral palsy, a seizure disorder and an intellectual disability, all of which leaves him wheelchair-bound. He’s in remission from liver cancer. He uses what’s called a “G-tube,” a semi-permanent fixture that helps him eat. He is legally blind, experiencing what’s called cortical visual impairment, which means his eyes and his brain don’t communicate the way yours or mine would, “so if he looks at something unfamiliar or complicated, his brain needs extra time to process it,” Mary explains.
And yet, Bennett loves life and can light up any room.
“He does have a lower IQ than what a typical five-year-old developing would have,” Mary says. “Having said that, within what he is able to do and his experience in life, he’s probably one of the happiest kids I’ve ever met. He’s super social – which is a high-order thinking skill, to be able to manipulate the people around you, and he definitely knows how to do that. He knows some colors. He knows some letters. He definitely has a big receptive language database that he can pull from, and then his expressive language is developing, which is really positive. He says ‘Hi.’ He says ‘Hey.’ He says ‘Yeah.’ He says ‘No.’ He says ‘Dada,’ and he is currently using assistive technology in kindergarten to learn how to communicate a bit more. So they’re playing with some different systems and it’s fun to watch what he comes up with. He’s pretty fresh. He’s definitely got a personality and a sense of humor.”
When Bennett was born, at 25 weeks, weighing just one pound and two ounces, his parents had no idea what to make of him.
“He still had fused eyes, so he couldn’t open his eyes,” Mary recalls. “He was purple. He was ventilated, and he looked like an injured baby bird. I remember first looking at him and thinking, ‘I don’t have feelings here,’ like, there’s no instantaneous bonding.”
Mary knows that’s a tough admission for any parent to make – that they had trouble bonding with their newborn child – but she knows it’s quite common among families with NICU babies. These are the people she helps today through the BennettStrong Foundation. Finding the will to reach beyond her own pain and “living sorrow,” as she describes it, to make a difference for other moms like her took some time.
The Pellegrinos’ heart-wrenching, circuitous path through Bennett’s early life, as summarized above, included five surgeries during his stay in the NICU. The family made a trip to CHOP when Bennett was 10 days old for emergency surgery to repair an intestinal perforation.
“The minute he was admitted, we were told he probably wouldn’t make it through the OR,” Mary says. “He was so tiny. I remember being blown away by the fact that his doctors were going in, this medical team, to operate on him, and I pictured them operating with little doll tools.”
Bennett cleared that first obstacle, but nothing about the subsequent three years was easy. Even before his third birthday, which the family spent back at CHOP after a cancerous mass was found on Bennett’s liver, Mary and Greg struggled with re-calibrating all the hopes and dreams they had for their family when they first got married.
“I remember doing research on life after the NICU, and I found articles that talked about a 90 percent divorce rate for parents in NICU beyond their due date,” Mary says. “Bennett was due in September, and we didn’t come home until January (2014), so I knew we were a part of that statistic.”
Through counseling and sheer resolve, Mary says she Greg forged a new commitment to each other in this new reality.
“I’m pretty open and honest in saying that if my husband and I hadn’t made a conscious decision to say, ‘This NICU experience is not going to destroy our marriage; our marriage always comes before our child’…we made that conscious decision, and we have been in some family counseling for the two of us since, just to learn how to feel, because when those feelings come and you start talking about them and what they look like, especially if you’re a family of a medically complex kid, you come to terms with the idea of living sorrow, and that’s kind of what we are navigating.”
“Living sorrow,” means, in essence, that you’re constantly reminded as you go through daily life that your reality does not match your dreams and expectations. It’s similar to recalling a loved one who has passed and wishing they were still with you. As Mary relates it to Bennett, it’s realizing that other kids his age are getting excited about Santa Claus at Christmastime, whereas Bennett doesn’t understand Santa. He gets excited about lights, so she and Greg take him to light shows. Or, consider Halloween: Bennett can’t eat candy, so his experience will not be the same as his peers. His parents have to get creative – and they do! – to make it a holiday he can enjoy.
All of this “living sorrow” laid the foundation for what would become the BennettStrong Foundation. Mary might have had to completely overhaul everything she initially thought marriage, motherhood and life in general would be, but she also understood that other families were facing the same challenges, and with her experience and effervescent personality, she could help.
Mary and Greg, who works at Holy Family University, decided to start the foundation after encouragement from their counselors and work communities.
They were told, “You’ve always shared what you’ve been through in such an honest, gritty way, and that’s so powerful for other people,” Mary remembers.
“My husband had gone to work and his boss said, ‘You really need to start something and you need to share your story, because people are just floored and blown away by what you’ve gone through,'” she says. “We ended up getting super-emotional emails from people who had gone through what we had gone through, and we found ourselves giving advice, sometimes unsolicited, for people who were going through similar situations that we were.
“So I looked at Greg and I was like, ‘Maybe this is something we should do. Maybe we should see what happens. We know Bennett is here for a reason, and we’ve been told through all our therapeutic support sessions that he’s here for a reason, but we just haven’t figured it out yet.’
“Greg called me after meeting with his boss and Greg was in tears and he said, ‘Mary, I think I know why he’s here. I think it’s because we need to develop this foundation. We need to do this. This is what we’re meant to do. This is it.’
“And just the fact that he was able to verbalize this with such conviction, I was like, ‘All right, sure.'”
Today, the BennettStrong is growing and thriving at the same rate as little Bennett, and the Pellegrinos are respected resources for the NICU community, recognized and welcomed by hospitals to advise families experiencing those harrowing first days, months or years of their new medically-complex reality.
“Our whole goal is to support families with medically fragile children,” Mary says. “We’re starting with the NICU because that’s typically where they’re coming from. If we can reach those families as early on in the journey as possible, the odds are they’re going to be more successful. They’re going to understand how to parent in a really tough world with a lot of exceptions to the rules, and they’re going to have the tools they need to facilitate being a family.”
One of those tools is a simple little fabric heart. The BennettStrong Foundation provides these hearts to mothers of NICU babies – one heart stays with Mom, and one goes with baby as he or she receives treatment in an incubator. They each “wear” the heart, and then swap. The hearts allow mother and child to smell each other, in the absence of physical contact, and this helps them bond.
Earlier, Mary described her difficulty in bonding with Bennett when he was first born. With these fabric hearts, she hopes to make the process a lot easier for moms in her position.
“I held Bennett when he was eight weeks old,” she says. “Eight weeks, I saw my son every day and couldn’t touch him. It was really hard for me because I had no way of feeling like a mom. Parenting in the NICU is not something you’re prepared for.
“So, for eight weeks, I wore a heart. I carried it around on my chest, and Bennett had one, and then we swapped. I always felt like I left a piece of me with him when I went home at night. Very empowering.”
Mary also used a journal to document her daily experience while she was in the NICU with Bennett, so part of the foundation’s mission is to provide journals to moms and dads to help them chronicle their struggles and victories. Ideally, the fundraising done by BennettStrong – including at today’s gala – will make full Parent Survival Kits a mainstay of NICU life, and build from there.
“We want the parent survival kits to become a staple in the NICU,” Mary says. “We want that to become a part of the psychosocial NICU nurse protocol as much as possible. We want training around it and support groups and the kits to change in content and usage according to what the social work team thinks is appropriate for families.
“Down the line, 10 years down the line, I’d like to see community support groups that we’re able to fund with counselors in the community to specifically address living sorrow and helping parents come to terms with what that life will look like after a family leaves the NICU. They’d have a phone number they can call that would lead them to us, and we can provide support.”
Although life is still a challenge every day for the Pellegrinos as Bennett grows and his worldview continues to change, Mary and Greg have found joy and purpose in the chaos. They truly believe their, and Bennett’s, purpose is to comfort others, to spread joy through service. They’ve channeled their own living sorrow into improving other people’s lives.
“Living with a medically complex child can be isolating and lonely,” Mary says. “We want to create a way for families to come together and process thoughts and feelings and maybe develop a new friendship. We want to help them find joy, but also recognize that coming to that joy might involve going through a very painful place. And that’s OK. It’s OK to come from that.”
Words can’t express my thanks to Mary Pellegrino for meeting with me, nor can they express my regret for taking two months to complete this piece. Please support the BennettStrong Foundation by visiting their website or Facebook page and joining a community with such a meaningful purpose. More Coffee Convos to come. As always, contact me at firstname.lastname@example.org if you know someone who’s a worthy interview subject.