Five years prior, I met my husband to be, Jason, primarily through an opera work study program in Rome, which is where the extraordinary started creeping in. We shared a first kiss on the Spanish steps, which two years later became the scene of our engagement and later the backdrop for our wedding photos. Our story began on that staircase and we envisioned sharing the spot with our hoped for children.
When our first, Ben, was born, his muscles were so weak he couldn’t breathe on his own or swallow. Within a few months he was in heart failure. Doctors couldn’t tell us a cause. He was fitted with a trach and a g-tube and we were sent home to a life of round the clock nursing, countless specialist appointments, and hope. We had hope because each time the count was down, Ben would rally. Twice we’d actually been told he had died, yet he revived. One night I had a conversation with God about our Ben. He asked me if I was willing to be the mother Ben was going to need if he stayed on earth. I said yes.
Today we understand Ben to have a rare genetic neuromuscular disorder. So rare, it hasn’t been named, though likely it is a type of congenital myasthenic syndrome. His disease affects every system in his body, and yet he functions remarkably well. He uses a wheelchair for fatigue, but he can walk. He may not be formal dinner ready, but he eats by mouth. He’s a very bright and witty high school sophomore. His fatigue prevents him from attending a full school day, so he does half his classes on-line from home. He has endured so many scary and painful experiences and there is no end in sight. Yet, he forges on, ever overcoming.
One day the right doctor asked the right question and suddenly I found myself a patient alongside Ben. I had ignored my own unexplained falls, difficulty with stairs, trouble swallowing, racing heart, and blurred vision, since it had always been “normal” for me. I began seeing my own set of specialists, enduring countless tests, and was ordered medications to improve nerve/muscle communication and slow down my overworked heart. Still, we had no name for what ailed us, and our symptoms were not entirely alike. I had more generalized weakness that seemed to worsen with age, stress, illness, and pregnancy, while Ben was born completely involved and had periods of improvement. Testing failed to offer a conclusive diagnosis, though we remained hopeful our genetic abnormalities would one day be deciphered.
The experience of mothering this boy brought me closer to Christ. Ben’s determination to overcome his crosses is where his strength lies. He doesn’t complain. He doesn’t fight pain. The doctors and nurses and therapists that encounter him leave better, happier and often laughing.
I can’t say I bore my cross so well. I was frightened by my increasing weakness. I complained. I resisted. How could I be the mother I’d promised to be with this failing body?
One September night, my husband, Jason, took his worries to Eucharistic adoration and had an experience that was the catalyst for change. He felt he was given a message by Saint Pio of Pietrelcina to, “Be a pilgrim, and be my healer.” We both felt compelled to heed this message. For two years we wondered how to be Padre’s Pio’s pilgrim for healing. The answer came one Wednesday morning when our pastor announced a parish pilgrimage to Europe in honor of the 100th anniversary of the apparitions of Our Lady of Fatima.
A transfiguring idea took root. Ben and I would go on the two week pilgrimage where he’d receive a condensed Catholic education. Jason and our other two children would join us later. We’d spend a week showing them our Rome away from home taking a few days being pilgrims for Padre Pio by crossing the country to visit his sites. We wanted to thank St. Pio for his intercession on Ben’s behalf as we felt he’d been watching over him since birth. Perhaps by obeying the call to pilgrimage, we’d find healing for Ben there as well.
While Padre Pio was bending Jason’s ear, our Blessed Mother had taken up residence in my heart. Always friends, I had begun calling upon her help much more abundantly. One November day I visited the Shrine of the Miraculous Medal near our home. I added the medal to my necklace that day and resolved to ask Mary daily for grace. By Advent I resolved to pray a daily rosary. In July I vowed to consecrate myself to the Immaculate Heart of Mary by way of the five first Saturdays and on the feast of Our Lady of Mount Carmel, I put on a scapular, as a reminder to remain beneath her mantle. I haven’t taken it off. Slowly, I recognized these little habits as tangible examples of grace received.
International travel with a medically fragile teen as a weakened caregiver was a daunting endeavor, but I was certain we should go. No matter that we didn't have the funds or the time away worked out. In the months leading up to our departure, my weakness worsened significantly. I began avoiding stairs and used a cane to prevent falls. Little tasks like laundry and carrying a pot of water to the stove became monumental. Though I’d always experienced my weakness primarily in my legs, I now felt it keenly in my arms and neck as well. I truly began to understand the frustration and anguish my son had been experiencing his whole life. Each day a marathon without the cheering, the medals, or a finish line.
I scheduled an appointment with my neuromuscular doctor just before our departure. She measured my strength and was equally alarmed, ordering further testing to be completed as soon as I returned.
I attended a prayer group where I expressed my hope for Ben’s healing on this pilgrimage. My friends encouraged me to add myself to the petition. I balked at the idea. This wasn’t about me and I didn’t want to be greedy, after all, we’d already received so many answered prayers, even asking for Ben's healing felt like going too far. They wisely countered, that it would be a pretty small god that doled out “just enough,” blessings, not the God who Is.
Exactly one year to the day after I’d spontaneously put on the miraculous medal, and the day after completing the five month consecration to the Immaculate Heart, I boarded a plane for Fatima, with my son at my side.
For two weeks we shared in the rich heritage of our faith. We bathed in the languages, the lands, the food, and the stories. We walked where saints had trod. We bonded with fellow parishioners and our relationship evolved from caregiver mother/patient son to equal travelers on the road. In Fatima, I was officially enrolled in my scapular by a priest I met there. He gave me the assignment of continuing my dedication to the Immaculate Heart, but also adding a new devotion to the Sacred Heart of Jesus.
My family joined us in Rome and after enfolding them into our history one piazza at a time, we began our trek to the Gargano Mountains of Padre Pio. We spent two days immersed in his memory. We thanked him for always watching out for our boy. In the church where he celebrated his final Mass in 1968, the pilgrim statue of Fatima had come to rest a few days. This exact statue had come one other time. Padre Pio had kissed her feet when he was gravely ill. He had expected this act of faith to heal him and was disappointed when it didn’t happen. He returned to his hospital room and watched as the image of Our Lady ascended by helicopter to return to Fatima. He told Mary he was ready to go with her, but expressed his confusion as he’d been certain she would cure him. In that moment, he was healed.
The coincidence felt monumental to me. I longed to kiss her feet too, but I lacked the courage. I did find the courage to request of God through the intercession of Mary and Padre Pio to heal us both. Nothing outwardly obvious happened in that moment, but we did get answers. Padre Pio showed me a picture of Our Lady of Grace, the one where an infant Jesus is reaching for her breast and offering nourishment to us. She has grace enough for all. Behold your mother! Behold your savior! Surrender all to the Sacred and Immaculate Hearts. Go home. Your faith has healed you.
After our time in the mountains we headed back for one last day in Rome. As we were driving we talked about the answers we’d been given. We were not healed physically, but we were leaving with so much peace and comfort and hope, and a resolution to surrender to God’s will in our lives. Whatever suffering lay ahead we’d accept, offering it all for God’s glory. Though I did express my mild disappointment in saying, “But Padre Pio, we came all this way, I kind of thought we’d be healed.”
Contentedly, we continued along the autostrada. Suddenly, my younger son, Alex, exclaimed, “Look at the sun!” It was a clear day but dark clouds had descended upon the mountain range to the West. The sun had burrowed through the darkness and peeked though in the perfect shape of a heart. Though, it didn’t look like the sun, it looked more like a burning, flaming anatomical heart dancing in the sky. Jason reached for my hand and we both said aloud, “It’s the Sacred Heart of Jesus!” We felt intensely at peace and so very loved in that moment. My resolve to live out Padre Pio’s motto of “Pray, Hope, and Don’t Worry,” swelled to new heights.
We arrived in bustling Rome and after checking into the hotel and returning the rental, jumped right back into sightseeing mode, Colosseum bound. As we walked I noticed the cane felt odd in my hand, so I switched to the other hand. It still felt wrong. Then I realized we had climbed a fairly steep incline in the road that I hadn’t felt in my legs. I lifted the cane off the ground and continued to climb the hill and felt-nothing, or rather the sweet absence of fatigue. I expressed this oddity aloud. There was a low wall to my left. I stopped to sit and then stood. I did it again without the cane. Darkness was falling and we wanted to get the family and wheelchair safely off the cobblestone, but I had a great desire to get into a church. We happened upon one dedicated to Jesus’ grandparents, Anne and Joachim and knelt in confusion tinged with gratitude. I recall praying, I don’t know what this is yet, but I offer all to Your glory. Let it be done to me according to Your will.
We arrived at the Colosseum and I lost all sense of tourism, fully engulfed in the curiosity of my new found abilities. I did little tests like climbing up the curb, standing from sitting, jumping jacks, running in place. I even picked up my six year old daughter and carried her on my back. I hadn’t lifted her in at least 3 years. I was astounded and disbelieving, certain I was asleep. It occurred to me that perhaps I had been healed, so maybe Ben was too. We asked him to get out of his wheelchair and try things out. He obeyed, but soon realized his strength was unchanged. I was crushed. My gratitude soured to guilt and grief. See? I was greedy! I did ask too much! This was all supposed to be for him, not me!
I must have said some of this out loud for Ben turned to me and said steadily. “I didn’t pray to be healed. That’s not God’s will for me. I’m supposed to be this way and pray for the people who have no one to pray for them.” Without using the vocabulary, Ben expressed his acceptance of redemptive suffering. Where I had promised fifteen years before to bear this cross on his behalf, he now agreed to accept it for himself and others.
It has been six months since the pilgrimage. We’ve been changed. I am physically strong. I no longer take any medications. My heart is steady, my vision clear. I have no fear of falls or staircases. I have been released from the care of my specialists. Ben is strong too, not in body, but in spirit. He found a new source of joy, accepting God’s will in his life. How blessed to learn this lesson at fifteen! And how blessed am I to sit at the feet of this teacher. The fragile son I was entrusted with has shown me the face of God. I would trade my strength for his in a heartbeat, but I know in my soul he has chosen the better part.
I believe my faith did heal me, and it was fitting with God’s plan to allow me to be the mother I promised to be. I did not earn this honor. It was a gift freely given, a grace. The experience of my illness taught me humility and empathy. I learned to find joy in my suffering and that my dignity and worth is not dependent upon my ability to contribute.
We listened to God’s call to be pilgrims and to be healers, but it isn’t finished. We are to be pilgrims every day, seeking God in all things. Learning from His words and those who know Him. Seeking, knocking, and having faith that we remain always in the palm of his loving, guiding hand.
