The Wind Cries Mary
I could never fully describe the power of God, the love when a soul leaves the body for Heaven. But my sister-in-law’s story unveils the start of the feeling, sharing his presence on holy ground.
Steve and Mary went on their first date on October 15, 2008. They met through Match.com. They were both divorcees with adult children. Steve was living in an apartment in Stow, Ohio. Mary was renting a home with an option to buy in Cuyahoga Falls, Ohio where she ran a successful daycare business. She had her associate’s degree in Early Childhood Education and was excellent with kids. She loved children. She loved Mary Poppins and Winnie the Poo and sought to bring the magic of God into her kids’ lives through the love of Christ and the power of the Holy Spirit. Mary was a woman of powerful faith emerging from a broken home and difficult divorce. Steve had divorced in 2006 after twenty-four years of marriage with his first wife, Bobbie. They were both searching for each other.
They met at a coffee shop in Stow, Ohio. Steve arrived early. When Mary walked in he saw a person who appeared somewhat timid. During this first date he took her all in and saw a beautiful woman, with short blonde hair, blue eyes, along with the presence of self-confidence and strength from within. Mary felt that Steve was looking directly into her soul.
Their romance progressed rapidly through a healing of two hearts. The Economic Recession of 2008/2009 brought them closer together. Mary lost her business, her home and her car. Steve had reclaimed the home in Hudson, Ohio where he and Bobbie raised their four children, and was living with his youngest son, Nicholas, who was still in high school. In January 2010 Mary moved in and they became a family.
The next few years were filled with golden days of God’s glory. Mary’s strong faith led Steve to Christ and they became active in a local church. Steve and Mary started running together. Steve had been an avid runner and cyclist his entire life and through exercising together, Mary received a healing of her mind, body and spirit. She and Nicholas became very close. Mary found employment as a private nanny, trained hard, and she and Steve continued to fall deeply in love. After running the Women’s Half Marathon at the Epcot Center in Disney World, Fort Orlando, Steve proposed that evening during the fireworks display. Steve had always been a romantic.
On Valentine’s Day of 2013, Steve was woken from his nap on the couch by Mya, a 2-month old puppy Mary gently placed on his stomach. She was a rescued Black Labrador/Pit Bull mix. Mary’s daughter, Paige, had gone to a local animal shelter and found two pups that she liked. She kept one and told her mom about Mya. Mary loved her “Mya Mya,” and at times Steve felt a little jealous.
Mary and Steve were married at their home in Hudson on October 5, 2013. Paula and I were blessed to sing one of Mary’s Favorite songs for them, That’s What Faith Can Do by Kutless. Steve’s oldest son, Christopher accompanied us on the guitar. Mary loved this song not for just the melody but the lyrics which framed her life of faith: “… I’ve seen miracles just happen/Silent prayers get answered/Broken hearts become brand new/That’s what faith can do …”
Steve sold the Hudson house in March 2015 and they moved into their new home in University Heights, Ohio. Steve called it “the Outpost” because it was a temporary place to live as he promised to buy Mary her dream home in a few years that included a wrap-around porch. But it was their first house together and Mary rejoiced in making it into a home. She decorated and loved Steve through her home-style cooking.
In October 2015 Steve took Mary to Paris to celebrate their anniversary. It was there that he first noticed the symptoms of ALS. Mary was having difficulties speaking which caused her to be more quiet than usual. Steve thought it was just fatigue or possibly allergies.
In November 2015 Mary went to visit her two best childhood friends, Vickie Huffman and Jenny DeRan. They were still living near her hometown of Fremont, Ohio. After Mary returned, Vickie contacted Steve via social media to ask if anything was going on with Mary, as she didn’t appear to be her normal self. And, so began their long journey.
That same month, Mary lost her job as a private nanny because the couple was concerned about her inability to communicate. She was devastated. Steve found out during a phone call with Mary while he was flying back from San Francisco on a Friday evening traveling for work. Hearing her tears on the phone with no way to hold and console her ripped at his heart.
Mary and Steve drove to Commack for Thanksgiving that year and Paula and I prayed for her healing. I could see that she was scared, but also felt the force of her faith and knew her trust in the Lord and her hope for a complete healing. ALS is amongst the toughest of diseases. When I researched it online, I found only one story of a complete healing.
Mary’s primary care physician first diagnosed her condition as reflux and then, suspecting allergies, sent then to an ENT (ear, nose and throat) specialist. In January 2016 Steve noticed she was starting to have problems with hand strength. With this in mind he did some research and asked for her to see a neurologist. His research indicated that it could be two conditions – a motor neuron disease (MND), which includes ALS, or a mild stroke.
On St. Patrick’s Day of 2016 Steve and Mary were finally able to see a neurologist near Hudson, Ohio and he diagnosed it as ALS. Before this visit Steve never told Mary what he believed she might have. When the doctor said ALS Mary was confused at first but when she saw the look on Steve’s face she realized the severity of the diagnosis. They held hands during the silent ride home. There was so much unspeakable, unimaginable pain and fear in that doctor’s office that day, and after the tears were emptied, dead shock. Breathe. Pray. And move forward.
The weekend after the neurologist’s appointment Mary appeared to have heart pains that resulted in a 911 call and a trip to the local ER. It was a panic attack, and some level of gas pains but this would be the first of many ER and hospital visits to come in the next 3+ years.
Life continued at The Outpost with Mary, Steve, and Mya. Mya had an abundance of energy but because or the demands of managing Mary’s disease, while working, and taking care of everything else, she was all over the place. Mary loved Mya and her name was one of the last words Mary was able to speak. She would laugh when Mya would jump onto her lap and lick her face, her “Mya, Mya.” Mary’s disease slowly separated her from the things she loved to do. Before leaving on a trip to Hudson one day, Steve left Mary with Mya by the car and ran into the bank to get some cash. He was only gone for a minute but when he returned to the car he found Mary on the ground crying while holding onto Mya’s leash. She was crushed because she no longer had the strength to walk her beloved Mya.
In April of 2016, a series of tests were done at the Cleveland Clinic to confirm the ALS diagnosis and Mary began the weekly treatments and medications to slow down the progression. During this time Steve and our younger brother, Pete, teamed up to search for new treatments and trials. This resulted in Mary be accepted to one of the top ALS research/treatment centers in the U.S. in Boston, Massachusetts. Mary and Steve made three trips to Boston in 2016 looking for potential trials she could participate in but had no success. During this time they found out that Mary had a special gene sequence that was determined to be a good indicator that her ALS may be primarily genetic which is considered to be the main driver for 10% of those who suffer from the disease.
Mary was a fighter. Her faith never waivered; it grew stronger. In August 2016, she and Steve flew to San Diego to be there for Paige at the birth of her second grandson, Oliver. Steve made sure that Mary was wheeled into the delivery room for the birth. Mary loved her grandsons Owen and Oliver! In September 2016 Steve and Mary drove to Boston to attend the Ride for ALS. Steve, Pete and Christopher all finished the 50-mile ride to raise money for the ALS Foundation. Mary is the rock, the center of our faith, rejoicing in love.
In October 2016, our niece, Meredith Chandler Lopez (Merlo), married her fiancé, Chris Ruzzi, in San Diego. This was another huge event for our family. Tebben had only been home from Peru for a couple of months. She was one of Merlo’s bridesmaids and Steve and Mary also made the trip. God’s hand was all over us.
In January 2017 Mary had a feeding tube put in. This required Steve to be home a lot for her feeding. He held it together. His faith was being challenged but he was strong. He was determined to fight alongside Mary so she had everything she needed and received the best care possible. Steve was strong but I knew he needed help. I felt a calling in my heart to be there for Mary, and Steve, but also for myself. I had crawled out of the dark pit but at times I still felt like I was just holding on. That same month I drove to Cleveland to stay with Mary and Steve and work with Mary on her physical therapy and feeding tube. Steve hadn’t been to his office since the feeding tube was put in.
I was there for two weeks and this is when Mary and I really connected, heart to heart, prayer to prayer. We fueled each other’s faith. She had been getting around fairly well with her walker and the house had been modified for her care. There was a ramp from the driveway to the front door and an electric lift to take her upstairs to their bedroom. She was fighting and working hard into her healing. She was able get to the lift, go upstairs to lay down or use the bathroom. We got into a routine. Breakfast, Bible reading, prayer, PT, rest, lunch, Bible, PT, rest, then Steve comes home. We listened to worship music much of the day but also watched a lot of T.V. Mary loved ABC, The Morning Show, the cooking shows in the afternoon and the Bachelorette at night. I’m tough with her on the PT but she fought through it. She was living God’s Word, “Therefore, strengthen your feeble arms and weak knees. ‘Make level paths for your feet,’ so that the lame will no longer be disabled but rather healed.” Hebrews 12:12, 13
Steve and Mary decided to move to Dad’s house in Commack so they could be closer to Boston, where there was a chance that she could participate in a study, and to be closer to family. Teresa lives fifteen minutes away and I’m an hour and a half drive from Connecticut depending on the traffic. And of course Dad was there and fully supportive to help them in any way he could. Pete and I went to Cleveland to help them drive to Long Island. We drove the rental truck and Steve, Mary and Mya drove in their Mazda.
I handled the truck for most of the 8-hour drive and Pete white knuckled it through my superior driving skills, which require an average speed of 80 MPH.
Steve and Mary lived in Commack from April 2017 until April 2018. Mary’s condition continued to deteriorate and she was cared for during the day by either a certified nurse’s assistant or a licensed practical nurse. Steve’s supervisor at GE was very sensitive and supportive throughout Steve and Mary’s trial. Steve worked remotely but had to meet with his team in Cleveland for a week each month. I was blessed to be able to be in Commack during those times to take over Mary’s care during the evenings and early mornings before her nurse would arrive. God had prepared me for this, starting with our Mom’s gifts of healing and compassion as an ER nurse. She modeled this devotion for us and we had seen her care for her parents, her mother-in-law, and she even cared for Paula’s father, Bill Gill, the last few weeks of Bill’s life before he died at home.
My time spent with my friend Rich Macharolli, who also had ALS, brought me close to Rich and this disease. And Mary and I were both fired up for the Lord. When you have to help the helpless, help them with all of their physical needs, you really grow close to that person. You have to trust each other. We maintained our daily devotions.
After getting her up from bed, to the bathroom, then into her chair, we would play contemporary Christian worship music and praise the Lord. Sometimes we would hear That’s What Faith Can Do, which would make us sad. But when we heard another of our favorite songs, I Can Only Imagine, by Mercy Me we would rejoice and I would sing the lyrics which filled our hearts with joy, I can only imagine what it will be like when I walk by your side./I can only imagine what my eyes will see when your face is before me.
We continued to read the Bible and pray everyday. Sometimes we prayed in the Spirit. As Mary’s disease destroyed her body, her courage and faith grew stronger. She was amazing. She inspired me. She loved Jesus. She loved my brother. She loved her children, and her grandchildren. She loved us all. She loved life. Hundreds of people were following her on social media. She blessed them all. Her life helped me put things into perspective. She suffered so … slowly becoming helpless, unable to move, to communicate. Her faith was amazing to see and God used it to make me stronger, a better man, heading in the direction he wanted me to go. There were times when Mary cried out in anguish and pain. But she would always return to the rock of her faith. She believed.
When Steve and Mary returned to Ohio that April, she was placed in a facility in Bucyrus. She was there for two weeks until her breathing challenges led her to decide to have a tracheotomy on her birthday, May 9, 2018. Steve and Mary were in this together, but Mary was still in control of her life and making decisions about her health care. She was still living with her faith that God would heal her. Both Steve and I had conversations with her about whether she wanted to change her status to DNR (do not resuscitate) or remain on Full Code, which called for all efforts to be made to sustain her life. She chose to fight for each breath until the end. She wanted to hold on to what’s most precious, our life, our love; and to suffer like Christ, brought her closer to him, until they were face to face; and being close to Mary, you were closer to God.
After Bucyrus Mary was moved into a nursing facility in Greens Springs, Ohio near her hometown, Fremont. Steve commuted daily from his apartment in Bucyrus and Mary’s hometown friends, Vickie and Becky, were there to provide support when they could.
The drive to Green Springs took 45-minutes and Steve wasn’t able to spend much time with Mya, which started taking a toll on her. Eventually, he found a foster home for Mya but didn’t tell Mary right away. When he eventually told her she cried but understood. Steve showed her pictures of Mya’s new home and foster parents and how well she was being cared. This helped but Steve still felt like he had failed Mary in a way by not being able to keep her dog.
In November 2018 Mary was moved into St. Augustine Manor on the west side of Cleveland. Steve rented a two-bedroom apartment in Little Italy, or Gordon Square, that we called “The Slant,” because the foundation was leaning and an office chair on wheels would roll across the floor. Nick moved into the apartment, which was only a couple of blocks from St. Augustine to be close to his chef job about a mile away.
Steve spent most of his time by Mary’s side. He got to know all the nurses, doctors, PAs, CNAs, maintenance guys at the hospital and they got to know Steve. This wasn’t always pleasant for the staff as Steve was determined to insure that Mary received the best care possible. He had a lot of questions and was occasionally demanding. There was tough love happening at St. Augustine.
In the summer of 2019 Mary started to decline and became more and more unresponsive. Steve and the staff thought her time to leave this world would be dawning soon. Towards the end of July, beginning of August, I drove out to Cleveland to be with Steve and Mary. I stayed at the slant and walked to St. Augustine to spend the day with Mary. I don’t exactly know what happened, but she made a brief comeback. We prayed, read the Bible and watched T.V. like we always did. I was working on my first book, Hard Knocks: Memoir of a Small Moment at the time and Mary agreed to allow me to read it to her. Perhaps the reading is what gave her that last burst of life because she made it clear to me when she had heard enough!
Steve prepared to say goodbye to the love of his life, his true soul mate. It was through his relationship with her that he came to know Christ and grow in faith. Their journey together was the easiest and hardest thing he’d ever done. It was God’s plan that they be together because Steve was the only man who could love her through her trial and stay by her side until the end.
Teresa and I drove out to Cleveland to be with Steve and Mary on August 13, 2019. He was barely holding up. The decision to take her off life support was all his. He just needed to have us there to hold him up should he fall. We gathered in Mary’s room the morning of August 15th. Her room was filled with her PA and nurses. Steve was by her side holding her hand for the last time. We were all there with him standing around her bed. Steve let her go and her life support was removed. I have never been with someone the moment of death.
Mary was calm, serene, at peace. There was no struggle, no labored breathing, no visible pain or suffering. She wasn’t quite ready to go and stayed with us for about twenty minutes, breathing in the Holy Spirit, the breath of God, and releasing his love into that room. I felt the Lord’s presence. It’s hard to describe. Many have tried. I felt like I was in a place somewhere between the force of gravity and the spiritual realm where there is only light. I asked, and Steve gave his consent for me to speak to Mary and sing to her. I leaned next to her and spoke softly into her ear. I don’t remember what I said, but reached a point where I could no longer speak, could barely stand, and could only sing, and so I sang to Mary one of our favorite songs, I can only imagine when that day comes when I find myself standing in the sun/I could only imagine when all I will do is forever, forever worship you
and at 9:53 am,
Mary released her final breath and went to be with the Lord.
“I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, with the Lord, the righteous judge, will award me on that day—and not only to me, but also to all who have longed for his appearing.”
2 Timothy 4:7, 8
The memorial service for Mary was held on August 25th. The funeral home was just up the block from the hospital. Many of the staff who cared for Mary during the year she spent at St. Augustine’s, were planning on attending. Her room was still empty. It was just before 10:00 am, when Ken, the respiratory technician, approached the nurse’s station, passing by Mary’s room, which was across the hall and visible from the station. Ken was checking his patients’ notes when he was joined by Gwen, Steve’s favorite nurse. They were talking about Mary when they saw the call light from her room switch on. Ken had a clear view of her room from the station and was certain that no one had entered. He was unnerved and asked Gwen to check it out. She entered the room, turned the light off and checked to see if the switch was working properly. It worked perfectly. Mary had just begun sharing heaven’s light.
“Aren’t all angels ministering spirits sent to serve those who will inherit salvation.” Hebrews 1:18
Mary was buried in Freemont, Ohio on September 7, 2019. Steve offered the eulogy.
“Words are extremely hard for me to assemble right now when thinking of Mary, but once again I’ll do my best and I’ll keep this short.
I have been blessed with the gift of having her in my life these past 10+ years. From the moment I met this beautiful soul at a coffee shop in Stow, Ohio on our first date on October 15th, 2008 to her last breath on August 15th at St Augustine Manor, Mary has been my source of inspiration and the main driver behind my rebound in this world. Everyday with her was like a holiday and what we shared together was beyond my wildest dreams, which is one of the reasons why I called her Mary Poppins in addition to her chosen profession as a nanny.
Mary navigated through a very challenging life with many obstacles and disappointments along with the way. But somehow she always dealt with it with a smile on her face and hope that what lie ahead in the future would be better. Faith was a cornerstone of her approach to life and with this in mind, I’d like to play the song Mary choose for our wedding … What Faith Can Do by Kutless … which I believe she choose not only for our wedding but as a reminder to me to never give up and continue on.
Mary deeply loved her family and friends in an unconditional way, which is rare in the world these days. Although I never met her, I believe she learned this from her beloved mother, Glenna, as well as from the small, tight community she was raised in at Old Fort, Ohio. She now is at rest next her mother and is a few miles away from her childhood neighborhood so in essence she is back home.
Welcome home Mary and until we see each other again always remember that we love you! God bless you!”
This is chapter 19 of Hard Faith.
Touching & writing on the hearts of lost souls…
Encouraging the believers
raylbooks.com Foreword
Thanks so much for visiting Project Deadzone (what I nicknamed it when Ray and I first chatted on it). Bring life to his words on the web.
Among many other things, my brother has always been a story teller.
Admittedly, I was/am not always a fan. As we grew up, I would have appreciated a little of the oxygen that he always managed to suck completely out of the room – storytelling or with some other disastrous adventure 🙂
If we are lucky, time gives us a chance to step back and see things differently. Reading his books, it’s amazing how fast life comes at you. Ready or not.
And as much as you think you know someone’s narrative, you don’t. Life is so self-absorbing — making it “hard” to really know what’s going on for the person next to you. For example, first reading his stories made me think I grew up in an alternate universe of our family. The one with unicorns and rainbows. (Well not exactly that.)
For me, his life narrative is about the transformative power of human belief. In his case, that belief system was of a higher order that was benevolent, unknowing, mysterious. His faith in God. As it grew and blossomed within him, it allowed him to love himself for everything he was. And for even what he wasn’t. He went from destruction (hard knocks), to discovery and development (hard love), to the determination to be life-giving in his latter days as death surrounded him (hard faith).
The circle of life. He thankfully had life-giving people in his destructive years. Many folks don’t.
For raylbooks.com, I’m really happy in the way it strips away everything just to showcase Ray & Paula’s words.
Wishing all a wonderful day with the ones you love.
un hermano