Photo by Amelia Hamilton         Landenberg native Mitchell Bacot, his wife Jenamarie and their children.

By Richard L. Gaw, Staff Writer

There is an aged brown book in the upstate New York home where Mitchell Bacot lives with his wife Jenamarie that documents the first chapters of a long journey that Mitchell has been on since he was a young boy growing up in Landenberg.

The book was written by his mother, and it records in copious detail the arduous and often painful chapter markers that saw young Mitchell go from doctor to doctor, from appointment to appointment, and from hospital to hospital. On Sept. 13, 1994, Mitchell, then a soccer player at Avon Grove Middle School, visited the nurse for a physical in order to be allowed to play sports. Later that day, the school nurse called Mitchell’s mother to inform her that Mitchell’s blood pressure was severely elevated.

Within days, Mitchell surrendered to several tests and appointments, including an echocardiogram at the A.I. Children’s Hospital in Wilmington that revealed abnormalities.

 For Mitchell, perhaps the most painful aspect of his illness was that it was robbing him of his abilities to do what he loved most: to play soccer, and slowly, he began to see his dreams of being someday able to play it on a professional level fade.

Eventually, the diagnosis became real: Mitchell was diagnosed with Neurofibromatosis type 2 (NF2), a rare genetic condition usually diagnosed in young adults that affects one in 25,000 to 40,000 people. NF2 can cause a variety of symptoms and complications, including hearing loss as well as problems with balance and swallowing. Among the most serious is a predisposition to develop certain types of tumors in the brain and spine.

By the time he graduated from Avon Grove High School in 1999, Mitchell had lost nearly all of his ability to hear, but that fall, he entered Gallaudet University near Washington, D.C., one of the best schools in the world for the deaf community. There was yet another hurdle for him to climb: he arrived on campus that fall knowing very little sign language.

“Gallaudet is a highly-esteemed ASL (American Sign Language) campus, and to show up not knowing ASL to me was seeing Mitchell walk into the lion’s den, but when a student asked him why he was there, he calmly said, 'I’m here for school. Why are you here?'” Jenamarie said.

Despite his setbacks and challenges, Mitchell began his studies at Gallaudet, transferred to Drexel University and later to the Rochester Institute of Technology (RIT) where he gradated with a BS in Mathematics. Then he earned a master’s degree in secondary education for the Deaf from the Rochester Institute of Technology, and became a mathematics teacher at the National Technical Institute for the Deaf (NTID) at RIT.

‘I was drawn to him’

On Nov. 6, 2005, Jenamarie’s mother, who was earning her teaching degree at RIT, sponsored a study session at her house and invited some of her fellow students. Among them was Mitchell Bacot.

“I knew from that day that he was interested in me, and I was in the middle of getting over a heartbreak, so I didn’t want to get back into a relationship just yet,” said Jenamarie, who was a fine arts student at RIT. “But Mitchell’s countenance is very gentle, calm and comforting to be around, and when I heard his story, I was fascinated by his willingness to take on this new world.

“I was drawn to him, and eventually, we decided to begin a relationship.”

On Aug. 8, 2007, they were married and despite his condition – one that required several brain surgeries – Mitchell became a father to six children, maintained his independence, became involved with his church community, worked full time at NTID and was an active and present father to his children. Early in their marriage – before their oldest child had even celebrated his first birthday – Mitchell even survived a car crash resulting from a seizure that came from a tumor that was found in his brain.

The NF2, however, continued to do damage to Mitchell’s body and on Jan. 21, 2021, he lost his independence. Over the  past ten months, he has had to reconstruct his life, his marriage and his fatherhood from a motorized wheelchair, and even the smallest of what had been commonplace is no longer possible: he can no longer write love letters to Jenamarie or love notes to his children, and playing something as simple as cards requires someone to help him hold the cards.

In the face of these tribulations, however, he remains resilient.

“Mitchell walks through his storms very calmly,” Jenamarie said. “Through the grace and power of God, Mitchell has a very strong faith, and his relationship with Christ is what keeps going, and it’s God’s grace that sustains him. Through all of this, he has rarely lost his patience or his will, and I don’t know how someone walks through the valley he walks through and rarely becomes bitter or angry.”

GoFundMe

As 2021 began, Mitchell was coming off of several surgeries that were less successful than he and Jenamarie had hoped. Despite a steady schedule of intensive physical and occupational therapy (his physical therapist said he is the most determined and motivated person she has ever met), he experiences numbness from head to toe, and is struggling with severely limited mobility and dexterity, and because of his mounting medical concerns and challenges, Mitchell has not been able to return to his teaching position at NTID.

Mitchell’s condition has also been exacerbated by two functional disparities in his every day life. The family car was no longer large enough to accommodate his motorized powerchair, and it was too heavy to manually lift. In addition, he was no longer able to maneuver his way into the Bacot home’s largest bathroom with his chair.

In order for Mitchell to be able to be involved in family’s activities, attend community events and church, watch his kids play soccer games or go to a school event, the Bacots needed a new bathroom and a new, larger vehicle with wheelchair access and a lift.

The cost of purchasing a used vehicle would be close to $50,000 -- and upgrading a bathroom was estimated to cost between $15,000 to $30,000.

“Mitchell hasn’t had a shower since he last left the hospital on August 12,” Jenamarie said. “I may give him a sponge bath, but until we have an accessible bathroom, he can’t do something as simple as shower.

“With a 350-pound power chair, we will need to purchase a vehicle large enough to turn it around, and be able to fit seven other people. We’re purchasing our van through United Access, and our contact there said that finding a van large enough to fit our family in this time is like finding a needle in a haystack.”

‘I have never met a family more deserving of support’

Upon hearing of the Bacot’s plight, Judith A. Molner, an American Sign Language interpreter at Strong Memorial Hospital in Rochester and a friend of Mitchell and Jenamarie, established a Go Fund Me account this past summer.

“The spirit of the Bacot family is magnificently kind and loving, and I feel compelled to help in whatever way I can, to support them as they face some profound challenges in the weeks and months to come,” Molner wrote in her appeal. “I can honestly say that I’ve never met a family more deserving of support and generosity from the wider community of friends, near and far. This family brings the most loving and kind spirit out into the world, and all of our spirits are enriched and heightened by their presence.”

To date, with nearly 120 individual contributions ranging from $10 to $1,000, the account has raised nearly $16,000 toward a $45,000 goal.

“When Judith and a few of our other friends mentioned to us about creating an account, I was hesitant to do it again, because we created an account four years ago to prepare for one of Mitchell’s brain surgeries in California,” Jenamarie said. “When we realized how much a new van and a new bathroom was going to cost, however, we decided that we would do it again and I asked Judith if she would be willing to head start that. “I have been overwhelmed by the generosity of this community. In a good way, everyone has been so generous to our family.”

The family purchased its new vehicle in October, and over the first weekend, they attended church in person for the first time in several months, and followed it up with a visit to a farm to buy pumpkins. In addition, the home’s new bathroom is nearly complete.

Meanwhile, the Go Fund Me Account for the Bacot family continues to nudge forward, and cards and letters and resources continue to lighten the family’s spirits. In between, Mitchell and Jenamarie continue to host gatherings such as a Sunday Night Football fellowship, and a once a month Rochester-based fellowship for the Deaf community.

Visits to the pumpkin patch and footprints in the sand

“This season of life has been used to teach me what it means to serve, which may seem odd because we have six children – but I think the capacity for people to serve others can never come to a limit,” Jenamarie said.

“I think it just keeps getting bigger. It is hard, however, when the needs surpass what I am able to give. “When Mitchell and I made our vows before God, we said ‘For Better or Worse,’ and there are days when I think, ‘We’re going to have to do this for the next 30 years?’” Jenamarie said. “It’s going to be hard, but then I remember that no one is promised 30 years, or even tomorrow. We are only given this moment, and that’s all we get, and I can spend my time being sad and wondering about the future, or I can spend this time saying ‘Wow, Lord, thank you for allowing us to get pumpkins today. Thank you that we get to see the autumn colors. Thank you that Mitchell is able to see, and that his mind is sharp and clear.’”

During brain surgery in California in June, Mitchell asked Jenamarie to type out a story for him to share for a future presiding assignment at church. It was the famous “Footprints in the Sand” verse, in which the author questions why in his darkest moments he saw only his own footprints in the sand, but learned instead that it was God’s footprints carrying him.

“Sometimes Mitchell feels as if he is walking through this journey alone, but he is not,” Jenamarie said. “Jesus is carrying him through it.”

To learn more about Mitchell and Jenamarie Bacot and make your donation, visit https;//www.gofundme.com/Fundraiser for Jenamarie Bacot by Judith A. Molner: Give Bacot Family a Wheelchair Accessible Life!

To contact Staff Writer Richard L. Gaw, email [email protected].