M E E T T H E M E U N I E R F A M I L Y J O H N , M A R N I , LUC A N D M A X

By Maria Smietana Photos by: Heather Gregg, 21 Vines Photography

Marni and John Meunier knew before their son Max was born that he would have some challenges ahead of him. Max was diagnosed prenatally with Down syndrome and a complex heart defect in late 2018. They knew raising him would present some challenges that other families do not face, but they felt blessed to be his parents and wanted only to figure out how to give him the best family possible.

There’s was already an unusual family. Marni and John met in 2016 in Bloomington, where John taught at Indiana University and Marni worked as an academic adviser for IU Athletics. They married in December 2016. John’s third child, Luc, at that time was in the primary custody of his mother. Luc, 18, was born with autism and is non-verbal. After Marni and John were married, Luc stayed frequently with them and was greatly loved by Marni, who has an extensive background in special education. Marni and John moved to Sheridan in 2020, where John serves as pastor to Sheridan First United Methodist Church. They became Luc’s primary custodial family in 2021 and his legal guardians after the unexpected death of Luc’s mother in May 2022.

“Despite the challenges his autism creates, Luc has adjusted really well to so many changes in his life over the last year,” Marni said.

At just 3 years old, Max has already had four surgeries -- three at Riley Hospital for Children and one at Boston Children’s Hospital. Even when close to home at Riley, extended hospital stays are complicated as both boys require around-the-clock care. Travel to Boston in April 2022 posed additional obstacles. “The travel to Boston is expensive and complicated, but we have been very appreciative of the support we have received,” Marni said.

Max suffers from a condition known as unbalanced atrioventricular canal defect, one of several cardiac defects that occur with greater frequency in children with Down syndrome. “Without the potential of a repair surgery, his life expectancy will be limited, as [the] body can’t sustain life with low oxygen levels,” Marni explained. “His blood oxygen level ranges from 75-80, so he is susceptible to having a lot of respiratory issues should he get sick. The hope is that he will be able to one day have a biventricular repair. Having a baby with these concerns during a pandemic was very challenging.”

Both boys attend Sheridan Community Schools. Max is enrolled in the developmental preschool, and Luc is a member of the communitybased class at the high school. Max attends speech therapy as well as other therapies through the school system. Both boys have the Medicaid waiver and receive services through Embracing Abilities. “The Medicaid Waiver is a wonderful resource for families like ours,” Marni said. “The case manager role has been one we have learned to depend on for answers to questions.”

Still, finding all the necessary services for an adult child with autism outside of the school system has proven to be a daunting task. “We were fortunate to have an appointment with CYACC, The Center for Youth and Adults with Conditions of Childhood, early last year and many of their recommendations helped us navigate the areas we needed help with,” Marni said. But finding caretakers for the boys so that Marni and John can get some respite time remains difficult. “It is hard for families to find one respite care person, much less two.”

Finding friends within the disability community has been very helpful for the Meuniers, and they encourage other parents to do the same. “Organizations like Down Syndrome Indiana helped us as soon as we found out we would have a child with Down syndrome, Marni recalled. “The Lucky Mama Project provided us with so much information, Down syndrome swag, and all of the support we needed as we were navigating that early on. We attend the Buddy Walk and other events and have established a great network of people who we can trust and rely upon.”

Max has been a part of Gigi’s Playhouse since he turned one. “We go to music therapy, an early school prep program, a program for enhancing gross and fine motor skills, and a song and craft class,” Marni said. “Having these programs at our disposal early in Max’s development has been priceless. They have given us people to bounce ideas off of and provided us with lifelong friendships.”

Challenges notwithstanding, the Meuniers make it a habit to create good memories with their children and treasure the ones from the past. “We have a lot of happy memories from Max’s NICU stay,” Marni said. “We were at Riley [Hospital for Children] for the first month, and we met the most wonderful nurses, doctors, and staff members. Our First Steps experience with Max was wonderful, too. He received therapy [early on] through Feeding Friends, and the love and attention we received was so remarkable. The therapists really do become part of your family, and we miss them all.”

Other happy memories include time on Morse Reservoir at Max’s grandparents’ condo. “We have enjoyed being members at Forest Park Pool, and we love Gigi’s Playhouse because it is really an extension of our home, and our entire family is welcome,” Marni said. This summer, the family travelled to Traverse City, Michigan, and they go to Florida once a year to visit John’s parents. Anywhere they can swim and be on a boat is a bonus. During the pandemic, they found that driving is much easier than flying. Luc and Max are uncles to a nephew named Jack and like going to Iowa to visit him.

Of course, the boys attend Dad’s church and love being a part of activities there. “Our church community is like family,” Marni said. “We are so grateful that our church supports our boys. In turn, we feel that we can be in ministry to other parents who have children with disabilities.”

Both boys continue to reach new milestones and approach each day with amazing positivity. “We are so proud of Luc, Marni said. “He is a beloved member of his school. We always say that if we had to encounter the challenges he faces, we would not be as joyful. He walks into school each day with excitement and a smile. His school friends call him Big Luc, and although he does not use verbal language, his smile says all that needs to be said. His favorite activity is going out to eat and he knows where all the great burger places are. Max has had four serious surgeries in three years, and he still manages to smile and sign “thank you” to all of his nurses. He has a very kind and special heart just like his big brother. He does not yet walk — his lower extremities do not receive adequate oxygen, so he fatigues easily – but he uses a gait trainer.”

Since the boys love going out to eat, Marni says they have found a real community at area restaurants. “Max is a celebrity at Los Agaves in Westfield. They know our orders by heart. For us, having a place where everyone knows them and appreciates them makes us feel so great. Max loves to people-watch, which usually means Luc gets to finish Max’s dinner!”

At home, Luc is an aficionado of Disney videos. Some of his favorites are Toy Story, The Incredibles, Mary Poppins and Shrek. Marni laughs that Max is a Bruno Mars fan, which can be awkward at times, since some of Mars’s lyrics are a bit on the wild side for a pastor’s son. Max has also made a best buddy of Gregory, the family’s affectionate poodle mix.

When it comes to sports fandom, there’s no doubt that the Meuniers will be Hoosier fans forever. Long before Marni’s IU career, her mom worked at the Indiana Institute of Disability and Community. IU was where Marni met John. And in a very touching gesture, some of the former basketball players who knew Marni just donated money to have a wagon named for Max at Riley Hospital, as did former basketball coach Tom Crean and his wife Joani!

For special needs families new to the area, Marni would say the cool thing about Indianapolis is that there are tons of resources for families. “It’s also not a massively big city, so we all kind of [get to] know one another.”

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