The following article went out to subscribers of our parish's Flock Note service. I've redacted identifying details. The title is a nod to the Willow Tree Foundation's motto, Ever Bending, Never Breaking.
The Focus of Respect Life for June is Mental and Physical Disabilities
During the month of June, you will be receiving emails with testimonials from people of .... Parish that have a disability, or have a loved one with a disability. This testimonial is from Jenny .... regarding her son, Ben, who was born with with a rare neuromuscular disease called Congenital Myasthenic Syndrome.
During the month of June, you will be receiving emails with testimonials from people of .... Parish that have a disability, or have a loved one with a disability. This testimonial is from Jenny .... regarding her son, Ben, who was born with with a rare neuromuscular disease called Congenital Myasthenic Syndrome.
Ever Bending, Never Breaking Ben
My sixteen year old son, Ben, doesn’t let strife ruin his life, or fight put out his light. His struggles began at day one when his seemingly healthy newborn heart just stopped. While a team of medical professionals pounced on him with heroic last efforts, I clung to my husband, begging God to send our son back to us. My husband faithfully added, “Thy will be done,” to his prayer. I felt God asking me if I was certain that I could be the mother Ben would need if he stayed on the earth. I gave Him my yes.
Though it took many years to pin down a diagnosis, Ben was born with a rare neuromuscular disease called congenital myasthenic syndrome. Essentially, Ben’s nerves and muscles don’t communicate effectively, causing muscle weakness which is a hindrance to every system of the body. Ben has overcome two cardiac arrests, twenty-something surgeries, heart failure, countless infections, pneumonias, and hospital stays. When he was recovering from his cardiac arrests as a newborn, we were told he’d likely never walk, talk, eat, or breathe on his own and that he wouldn’t survive infancy. I had a sense God had other plans for Ben.
Every physical, spiritual, or academic milestone Ben has achieved makes me well up with gratitude for the gift of his life, for his perseverance, for the joy he shared in getting there. Each physical ability he has today represents years of physical, occupational, and speech therapy, a lifetime spent with teams of specialists, and excruciating procedures. A St. ..... graduate, Ben is now earning half his high school credits at home, and half at ....... He uses a wheelchair for longer distances, but he can walk. He talks plenty and is witty, and bright. His favorite foods are cheeseburgers and chocolate. He breathes pretty well most of the time, but requires support at night and daily treatments. He hopes to have a career as a computer programmer or nurse.
Ben could easily feel bitter about the daily difficulties he encounters. Everything from swallowing to breathing to making plans is hard work. Ben has often been left out, laughed at, or avoided because of his appearance or the assumption that he is contagious. Being so sick so frequently has caused him to miss out on a lot of the fun of childhood. Yet, Ben is happy, peace filled, and self-less. He is known to offer up his struggles to earn heaven for souls in purgatory.
In our culture, we seek to avoid suffering at all cost. It is the healthy, the wanted, the able that are garnered dignity and worth. We rationalize that ending struggle is a good, avoiding pain is a right. I counter that it is in the stretching and reaching for better that we grow. That accepting inevitable pain and suffering and enjoining it with Christ’s sacrifice brings immeasurable grace.
Ben’s future is not likely to be any easier than his past. But as he says, “No one would appreciate anything good if nothing bad ever happened. Trust in God, He knows what is best for you and that you might not be strong enough, but He is. Wow, that sounded really mature of me!”
It is through Ben that I saw Christ up close. Christ and his Mother, Mary have never left my side as I’ve persevered in mothering this remarkable soul entrusted to me for a time. All is a gift, undeserved, and beautiful, scars and all.
For more information on congenital myasthenic syndrome, go to https://www.mda.org/disease/congenital-myasthenic-syndromes
