Mathias, The Gift.

The baby was born. It wailed as the doctor turned it upside down. No slap on the naked backside. Father was present, and mother eager to hold her child. The wail turned into a smug smile as the mother cradled the child on her bosom. “Good Lord it took me this long to meet you,” the mother joked with a tired smile. Doctor, nurses, and father swooned closer. It was a cute baby.

Mothers have a sixth sense. Gill had sensed something was wrong months earlier. She could feel it in her bones. “We need to do some tests, Robert,” she insisted, slumped on a couch resting.

At the hospital, the doctor took time to explain the procedure, “a sample of amniotic fluid from your womb, extracted through the abdominal wall.” Gill cringed.  

Two weeks later, Gill and Robert sat holding hands in the doctor's office. It was small, one where the personal and the professional coexisted. Dr. Patel had delivered their four children. He was a family man and his wife and two daughters smiled back from a portrait hanging on one wall. The opposite wall held homage to the many accolades the doctor had received in his years of practice. Gill was preoccupied looking beyond the large window behind the doctor's chair. Preacher’s podium with basilica windows behind. This was a sacred appointment. She hoped for a miracle. Robert was fidgeting, one-foot twitching, barely having slept those two weeks. He needed redemption.

Dr. Patel walked in. Smiled and shook their hands. His were soft hands. Turtle spectacles and boundless energy. The report in hand. He sat on his chair, ready to make a proclamation. He opened the report, a formality. He had read the report many times and knew what it stated. Nevertheless, he couldn’t bring himself to look into the eyes of this couple. He loved them dearly to be the bearer of bad news. Pleasantries dispensed, "your results came back positive for Duchenne Muscular Dystrophy.” A blank look. "It's a genetic disorder that causes the muscle fibers to degenerate over time. It may start with shoulder, hip, and pelvic muscles, and then go to arms, legs, and trunk. It may affect the heart and muscles that control breathing later in life.” Another blank look. It dawned on them. Gills gasped. Robert slumped. The two hugged, nursing what they had heard.

“You have the option of terminating the pregnancy, I need to say that,” Dr. Patel mentioned. A holy silence ensued. The doctor felt less saintly. "I will not terminate this pregnancy," Gill said indignantly. It was not a thought she had entertained, although it had come to her. Dr. Patel was happy. Robert muttered, “I am lost.” Gill had made up her mind. The day ended unsettling. 

 That had been four months ago. The child, Mathias, Gift of God, was suckling. Mathias’ four older siblings were at the hospital. Jimmy was joining a university. Leah had graduated from Law school. Joy was embracing adolescence. Mark was busy playing football, and chasing girls in senior school. An all-rounded family.  

They all knew. Without saying it, they were looking for what was wrong with the baby. Family meetings had concluded they would support mom and dad. Leah had taken the role of informing and educating the family. Sensitizing, creating awareness where there was none. None of them knew what would happen next.

They huddled close as a family and spoke tenderly to each other. Encouraging, laughing and consoling. Visitors came along, many uninformed. "He is going to be a great sportsman like his brother Jimmy, and Mark." Said a high school teacher. "He will make the girls love him," said another. Mark twitched. Gill listened and stored the words in her heart. A day would come when words were all she had. Today, she wanted the visitors to leave.

That night, lights off, alone with Robert asleep in a chair beside her, she made a small prayer. "Give me strength, God." She begged, tasting salty tears as they trickled down her face. She sniffled and wiped the tears. "Was I selfish in desiring another child? Did I make the wrong decision in keeping a child who will only know suffering and rejection? How will we make it through this?” The soft hospital walls had no answers to her questions. She slept.

Gill was a strong woman. It showed in how she went through moaning. She cried for many nights. Sought solace in her husband’s arms. When done, she came out ready to stand by her decision.

Though Mathias had a genetic disorder, he would be an inspiration to those around him. She said this to her family at the dining table, weeks later. The children knew what that meant. Gill loved with all her heart. Her children were above average in achievement. Leah and Jimmy were getting an Ivy League education, in no small part to the sacrifices that their parents had made. More from example and culture than any inherent genetic gifting. Both Gill and Robert had come from poor families, with no pedigree.

The story had started twenty-six years ago.

Robert was on a bus, going home. A beautiful young girl was sitting in front. That girl was Gill; she was pregnant, although it did not show. Gill was going through a hard time at home; her father had asked she go live with her lover. Gill’s mother had convinced her father to let her stay. She was attending classes but would need to take a break. Gill had a book in front of her, she found books a place she could escape, and imagine a different reality. This reality was not comforting.

Robert moved a seat closer, after noticing something and smiling; he opened his bag and brought out the same book, checked her page number and moved to that page. Robert coughed and smiled. As she looked up his heart skipped a beat. She had the most beautiful brown eyes. He coughed again. “I don’t know why Dante keeps falling in love with this horse,” he said with a smile. She moved her eyes to the book. Without missing a beat, they started a conversation and bonded on a book. Serendipity.

Many days passed. When she felt closer, she shared her story. Her first love was the school’s most eligible bachelor. They had slept together. Now pregnant, he had walked away. Robert listened. He went with her to all her prenatal meetings, made friends with her mother and traditional father. Gill believed Robert was the reason her father ended up supporting her again.

He had said, "How can a strange boy, walk you home, and take you to prenatal care, and your father sits back? That is a shame." With Leah’s birth, Robert had become a permanent fixture at their small house. It was because of Leah, that Robert and Gill, who had become inseparable, decided to take a serious view of their education and careers.

Five years later, Gill and Robert had college degrees. Gill’s dad said Leah was the best thing that happened to Gill. She became a new person after focused, driven and serious.

Leah did not meet her real father; he died in a car accident, after a drinking spree in college. Robert compensated for this role. He was there, consistent and dependable. Until one day, he lost his way.

Joy was not born yet. 10 years they had been together. Leah, Jimmy, and Mark were in the picture. Then, Delilah reported for duty at Robert's office. She had flawless skin, an hourglass figure, hair that flowed like a crystalline river, her eyes sang with starry colors. Delilah was Marisa. Men turned their necks in demonic angles to see Marisa. Her fragrance preceded and lingered long after her leaving. Robert fancied himself loyal until worked with Marisa in a project. He stole glances and daydreamed about her. The trap fell during the annual Christmas party when they found themselves kissing in a backroom. Robert caught a fever and found himself in her bed nursing an indiscretion.

The guilt raked him for many weeks. Robert was mad for being stupid, his wife, for not taking care of herself, Marisa, for being such a witch. Yet, he went back to her. A spell was at work. It went from a dalliance to full-blown mutiny. Marisa demanded he leaves his family and moves in with her. Robert said it was impossible. The fighting at home increased. He loved his children and wife. Nevertheless, he was addicted to Marisa. One day she overreached and gave an ultimatum. Quitting, he broke up with her. Marisa did not take it well and made Robert’s life at the office impossible.

He told Gill, and she said she had known all along. “I need you to grow up. We are not leaving you. Get your $%## together.” Robert cried that day, at the kitchen table with the kids asleep. He cried because he saw the hurt he had caused. Cried because he knew he was going to do another stupid deed. Pain is the best teacher. Gill felt she deserved better. She had given him everything. Yet, something told her to stay. Mother shrugged her head and mentioned something about ‘marriage being more than a bed of roses’. Father said nothing.   

Two weeks later, riddled with guilt, and addicted to Marisa, Robert moved out. It is strange what people do. A bridge has signage, ‘DO NOT CROSS’, you find people crossing. Gill grew tired of Robert taking her for granted. When you love someone, as much as she did him, let him or her go. They will find their way back home.

She had a good accounting job that kept her busy and fed her young family. 

Never had Robert experienced adult freedom. He had a family out of high school, taking care of Leah as his own. While he studied, worked and raised a family, his peers were busy drinking and dating. “Let me find out what I was missing,” he affirmed himself.

When Robert left his wife, Marisa grew tired of him. The appeal disappeared, and he was in a mad rush to catch up with his peers. That year was critical. Painful, but critical. He discovered that the fun his peers were having was skin deep. Many were looking for happiness. "You are crazy to have put your family aside for this," said a dashing younger man, who had a string of girlfriends, but could not maintain a stable relationship. None of the women he dated came close to Gill in intellect, humor, and company. After five months, he lost interest and focused on his career and family time during weekends.

One Sunday evening, as he was leaving the front door, Gill asked, “Are you happier, Robert?” He shrugged that question but knew what his wife was asking. Two weeks later, he took her on a date, and they rediscovered their love.

That was fifteen years ago. Robert was a wiser man.

Gill was heading the accounting department of a global company. Robert had quit employment and started a company, five years in the making, doubling in revenue every year.

Gill fell under a dark cloud she could move after the delivery. She cried for many nights, finding solace in her husband’s arms. Robert was a pillar for her. However, the abyss she was in was deep, impossible to scale. The seclusion during the maternity leave made matters worse. Dr. Patel suggested they attend a forum to meet parents of children with Duchenne Muscular Dystrophy. “It will allow you to observe the reality of living with children with the disorder, as they advance in age. You will also pick precious practical lessons.”

Gill had been skeptical. "I feel like it's going to be a pity party. I will just join others in complaining and looking negatively at this." She never finished the statement. Mathias had been a sweetheart since coming back from the hospital, sleeping all night and most of the day. He smiled most days, and when he cried, it was a short exercise. She worried incessantly about him. Watching him, all day, every day. “Am I wrong to worry about him, when he looks so healthy.” She asked. She knew she was worried because she had nothing else to keep her busy. “I miss working, am I evil to desire to go back to my job!” she asked Robert. Robert had taken two weeks from work and had gone back to his work routine out early, back late.

On the day of the forum, they strapped Mathias in on a baby seat. In apprehensive silence, they drove to the venue. Several people had gathered parents and children. Some were Mathias' age, many much older. The severity of the disorder varied with different children. Yet many were of good cheer. There was a lot of laughter at the forum.

 “Thank you for coming to this month’s gathering. Where we share and grow together. Where we nurture, sing and laugh together,” said the main speaker. “We will hear from different people today share how their month was, and I encourage you to chime in. We are close to 50 families here so this should be great.”

The first speaker was a teenager speaking about her older brother, severely affected by Duchenne Muscular Dystrophy. "Ricky is my hero, she started. He has gone through so much. Yet, he has always had a smile on his face, and always told me how beautiful I was. He made my hair when I went for my first athletics competition, he was there cheering me on. He listens to me and gives me good advice. I love you so much, Ricky." They hugged and people clapped.

A rheumatologist shared some exercising tips. His son a teenager was walking with crutches. He shared how they had a family regime of exercise coupled with medication, strengthened his son's muscles allowing him to live a less restrained life. 

Another family shared how their daughter lived, as a successful accountant despite the disorder.

The last family had two sons with a two-year age difference.  A stark contrast. The first-born was athletic and muscular. The second-born shriveled and in a wheelchair. "We are happy to be here to see what other parents are doing. Our son got tired of medication, his heart is weak." Said the father, crying. "We have done what is required of us, but there is little we can do for his spirit. He brought him here to see others who live the same life. We hope he will feel better." The main speaker jumped on stage. "Wait a minute! Everyone lets welcome Toby." Immediately the crowd broke into song. “We love you, dear Toby, we love you for your strength, for the patience you have, and we love you again.” The song went on, and the family on stage started tearing uncontrollably. People at the forum started crying too. Tears of understanding, of recognition. Tears to say, I see you. Finally, the older brother spoke. "Ever since I was young, when Ben was brought home, I promised myself I would protect and take care of him. I would make sure that no one would hurt him. I started going to the gym and took a Karate class. To be my brother's protector. But!" he wiped the tears streaming down. "Ben has protected me. I see how he interacts with people, and I am shocked how nice he is, and how people love him instinctively. He had taught me not to be so fearful of the world. He encouraged me to be my best. I qualified to represent the country in the Olympics. Ben is always there for me and I love him so much.”

The stories made Gill and Robert, cry, laugh and cringe in equal measure.

A dad had lost his wife after delivery, walking out of the hospital with a daughter. When she could not walk at two years of age, he discovered she had a muscular disorder. He had contemplated putting her up for adoption and run his successful business, instead sold it and moved to a farm. During the long sojourn, he discovered his love for farming and patented a farm machine that turned him rich. He made another decision to give most of his yearly earning to Duchenne research to develop a cure.    

After the session, Gill was in the car, deep in thought. The streetlights were on, stars shimmering in the distant night. The light poles formed shadows over the car bonnet and passed, as Robert drove back home. Silence. "I think we can do this Love. I think we can take care of this child. It will not be easy but I believe we can love Mathias to the best of our ability, and discover much more about ourselves in the process.” Robert nodded digesting his own words. He stole a glance, “What do you think?”

“We are in over our heads here. However, we are not new to parenting. We have raised a good family. If anyone can do this. It is us, Robert.” Gill said with finality out of the depressive state.  

The baby in the backseat laughed and sniffled. “I will have to quit my job,” Gill said. Robert looked at her shocked, nearly swerving out of the road. "No, you don't have to. You love your job,” Robert said, his voice betraying the worry. “You lead a department in a global company, and you are slated for a promotion next month. You cannot do that! I, on the other hand, run my business. I can double down, and make more time for the family.” Suggested Robert.

“Your business is just about to double for the fourth year in a row. You need all the hands you can muster.” Said Gill convincingly. Gill was a strong woman. When she decided something, nothing could dissuade her. It was one of the reasons Robert loved her so.  

When they got home and put the child to bed, Gill went and sat down on the dining table with her laptop on. She wrote an email that spoke of her concerns more than any convictions she held.

‘I love working for this organization. Recently, I have decided to prioritize time to raising my son. He has Duchenne Muscular Atrophy, and his condition will be more evident in the coming months….I am tending my resignation…This I wish to do with immediate effect.’ When done she sighed; a weight had come off her shoulders.

“Baby please come and read this before I send it off.” Robert sat beside her and read the email title ‘RESIGNATION’ was in bold and capitalized. He forced himself not to look shocked. She was mailing the letter to the CEO and HR Director. “Sounds just right.” He said hiding his grave discomfort. “I think before you send it. You should sleep over it.”

Gill turned to Robert and looked him in the eye. "I know you are scared of this. However, we will be fine. If I wait, I will be so unsure tomorrow, to a point of indecisions." Robert sighed. “Ok then, please send it off.” They exhaled heavily as the email disappeared. They were turning around to hug when the ‘You have mail' voice startled them. A second and a third one followed. “No! Please, Gill. I need you. We will do anything and everything to make this work,” the CEO wrote back. A call came. It was the owner of the company. She rose up and went to the balcony, holding the phone to her ear. She was there for 30 minutes.

Robert was at the dining table, lost in thought. The business was growing. He was a star rated consultant for government and blue-chip companies. Robert had nurtured the company from scratch over the last 5 years. He had just won a government tender that would double his revenue in two years.

He felt rudderless. When he was younger, he would have sat with his father, for wisdom. Nowadays, mentors were few. His wife had become his sounding board. Lately, he felt her stress. Laying his fears on her would overburden her. She was so strong to quit her job.

He walked to the crib. Mathias was sleeping with a smile. “Why us. Why me? What am I meant to learn here.” He kept asking. Robert felt a warm sensation in his eyes, as everything became cloudy. “This is not right,” a drop of tear landed in the baby cot. “We have gone through so much, and when we wanted a normal child to grow old with, we got you. I would do anything to have someone tell me it will be all right.” He spoke to himself.

“It will be all right. We will be alright.” Said Gill as she walked in silently, stood by her husband, and placed her hands on his waist. “They offered to provide for all his medical costs for the foreseeable future, and are willing to give us a contract that says the same,” she added.

"Wow! What will you do?" asked Robert. "I don't know. They say I can work from home and go to the office at least twice a month. I need to call dad and mom and hear what they think." Gill said as she walked off again. "I wish I could do the same," said Robert under his breath. His father had died seventeen years ago. The tears came easy for Robert. By the time Gill came back, he was on the floor. “What’s wrong baby?” she asked. “I am just overwhelmed by the experience today; the forum and all those families. You remember the 21-year-old that was still being changed diapers, cleaned and clothed by family members. The sacrifices. My heart breaks because, for the first time, I realize how selfish I am. How much I wanted to find solace in our 40s and 50s. Where will we get the energy? How much will our lives change?"

Gill sat on the floor with her husband. “Do you remember when you left us for a year and went off on a self-discovery journey. When Marisa, was the beacon that led you to the rocks. I knew you had to go through that. I knew you would come back. I now feel that we will go through this together. We will become stronger, our family will become stronger, and Mathias will ensure that happens.”

Robert did not get what his wife was talking about, but he trusted her.

“Dad and mom have said that they are moving closer. Dad said God never makes mistakes. What we consider mistakes are blessings that change our character for the better.” Gill said.  

“Your Dad is such a smart mouth. He never says anything that is not inspirational.” Robert joked. Gill feigned shock, they laughed hysterically. Mathias woke in a start and went back to sleep. They shuffled out of his room. “I wish he could just let us run our affairs,” Robert spoke to himself. He dared not say it. 

His father-in-law had this power over his wife that was incomprehensible. Thankfully, the old man had dispensed good counsel. He had asked Gill to forgive Robert during his ‘year of indiscretion’. Robert felt jealous of the old man. “I feel like I can never measure up to his saintly nature,” he told a friend. 

The following month Gill’s parents moved down the street. They convinced Gill to hear her employer. She created an elaborate schedule to work from home on weekdays and one day at the office. After a year, it was working for her. The baby was growing older, the whole clan had discovered what was up, and more relatives moved closer.

Robert tried to juggle the business and being a father, but he felt a stranger every evening he would walk into the foyer, and find his children, two older ones included, swooning over Mathias, while he nursed a headache from all the work at the office. Something nagged him. He needed to change what was happening or he would miss Mathias' growth.

As Mathias got older, his favorite exercise was to listen to his father’s car drive up in the evening. The boy had an instinctive clock. No matter how many people were in the house. He would go quiet and wait for the sound of the car. When the car would stop. Mathias would drag himself in the baby walker towards the door crying in pain and happiness. Glad that his father was home. He would repeat this exercise in the morning as his father went to work. The reunion was enough to bring tears to the family because they knew it was a feat for the child to drag himself to the door.

As Robert got into the house and saw his son. His countenance would change. That is how the love between father and son developed. 

This made Robert think long and hard about business. The years became better, success came and the business grew. He saw his enterprise as a means to fund research on a Duchenne’s cure. With Gill’s encouragement, they started a foundation helping parents take better care of affected children.

The more he worked with the foundation, the more he discovered his heart’s passion. He had to sell the business and focus on the foundation, he desired more time with Mathias and time and effort in finding a breakthrough cure.

He found a buyer for his business unexpectedly. He was a speaker, at a business forum. Someone asked, “How do you balance work and family?” Robert thought for a moment, and said, “I have done it poorly, I have five children, one has Duchenne muscular dystrophy and I can do better.”

After the session, a lean man walked up to him and introduced himself; they talked at length and shared a lunch table. They said their goodbyes and did not speak for four months. One day he got a call from the same man. “I hear you want to sell your business,” “Yes! I want to spend more time with my family, and run the foundation.” Robert responded.

“I have someone I want you to meet,” said the man. Two months later, he met the billionaire owner of Citadel Inc. “I have a daughter who has DMD, like your son. I understand what you are doing. I have two proposals for you. One, I buy your company, and secondly, I put money into your foundation?” Robert gasped. He remembered the father who had given up his business for his daughter, many years ago. “I would like to talk to my wife about this first if you allow me.” “Yes, please you can use the next room.” When he was alone, he called Gill. “Baby, it’s been close to ten years now. And I think I understand the blessing that Mathias has brought to us. I have been offered two proposals today.” The call lasted five minutes.

When he came back into the splendid office. He shook hands with the billionaire. 

In the weeks that followed, he handed the reins to the new owner, although nothing changed much in six months, as he reduced his time at the office, before finally leaving. The company had grown to 300 employees, they were sad to see him leave and a few decided to join him in the foundation, but they understood his choice.

The first few months at home were the hardest. Never had he taken a break in decades, even as Mathias grew. He had a penchant for order, we would wake up early, do some exercise, wake Mathias, do some physio with him, help him take a bath, have breakfast as a family. Drive Mathias to school, pass by the foundation, make some calls, and be back to pick Mathias by midafternoon, and get back home. They would have dinner with the extended family and he would sit with his wife as the house quieted down.

A walk in the evening and sit at a bench. Overlooking a forested suburb. Many times, they did the same with Mathias. The boy had a keen eye for nature. An articulate rising star in school. They said he had the mind of Stephen Hawking. His story had begun.