Mom, Suffering and Scleroderma: A Journey of Faith

Mom was diagnosed with a terminal illness. She did not die on her own terms but through faith, offered her suffering to the Lord.

After 17 years of suffering with scleroderma, a disease for which there is no cure, our mother entered into eternal life. She lived with open wounds and ulcers for years, even attempting skin grafts that didn’t take. Our mother chose to heroically endure her illnesses.

Mom lived alone. My wife Nancy and brought groceries and supplies. We were busy raising 6 very young children at the time of her death. I did not find the caretaking burdensome. I found it to be a duty and an honor to change the dressings on her open bleeding wounds.

Now I lay me down to sleep,
I pray the Lord my soul to keep;
If I should die before I wake,
I pray the Lord my soul to take.

I remember these words spoken by my mother when I was very young. She prayed every night with me before I went to bed. I remember being scared by the words, “If I should die before I wake.” I was about 3 years old when I asked her about dying. "Mom, will I die before I wake?"

I told her I didn’t want to die before I wake. She comforted me in a very motherly way by telling me that God would guard me and protect me. She reassured me by giving me a scapular to wear. I received many blessed objects like this from my mother. It gave me a sense of peace. God working through her gave me peace.

Mom was a key player in my faith formation. I was very fortunate to have her for a mother. The faith lessons she taught me about death and dying came at a very critical and formative time of my life.

In 1987, after an exhausting number of visits to hospitals and doctors with no answers in the Des Moines area, I recommended that mom come to the University of Iowa where I was studying. She thought that was a good idea.

In October, dad brought her to the hospital for what would be the final diagnosis. At the age of 47, my mother and our family was given some disturbing news. Mom was diagnosed with scleroderma, a connective tissue disease for which there is no cure. The doctor told us she would develop scar tissue all over her body and especially the hands, arms and feet. Eventually, we were told, it would reach her internal organs. She was given about 5-10 years to live. We were devastated. I was 19 going on 20 years old at the time. My brother Mark was 17 going on 18. Yet it was our brother Ray who was only 10 at the time. We were especially concerned about the impact on him.

A trial of all trials descended upon our family, but especially for my mom. She would now have to rely on a wheelchair, a walker or other assistance as the disease progressed. My mother, the rock of my faith whose council brought me peace as a child was now in need of my comforting words as she faced disability and death.

We all searched for some meaning in the disease. Mom wondered if it was a punishment. Of course we all reassured her it was not. Even my father-in-law Ron told me to reassure her it was not a punishment. He said something like, “Dave, God is our father. And we are his children. Would you give your child a disease if they did something wrong?” Of course not.

A nun put it this way to my brother Mark, “God gave human nature free will and Mother Nature free will. Both can choose to do what they want, good or bad. So if Mother Nature chooses to bring an illness, God still grieves with your mother and wants good.”

As a child, mom told me to offer up my sufferings for the souls in purgatory. She taught me about suffering that is redemptive. She taught me that suffering has a good outcome when united to Christ. Now it seemed it was my turn to offer the reflection back to her. But how? It seems that mom reached a whole new level of suffering. This suffering was not only physical but mental, emotional and spiritual as well. I struggled for words of wisdom to offer her.

Friends, neighbors, family and church members assisted in every way possible. Some brought meals. Others ran errands. Some even spent the night. Eventually, the whole family was busy finding books for her to read and trying to keep her mind occupied on the positive things in life. I told her jokes. My dad and my brothers kept encouraging her to keep going. Her God-child found some reading materials to keep her motivated.

I told her she had so much to look forward to in life. One day I would be married and have children and make her a proud grandma. This seemed to lift her spirits. She continued to go to Mass when she could or I would bring her communion. She also found joy in attending the Catholic Charismatic Masses on Thursday nights at the Cathedral.

The year we travelled to St. Louis to see Saint Pope John Paul 2 was a defining moment of love and faith during her last days on earth.

We woke up early that morning and upon arrival, noticed large lines forming down the streets a few blocks away from the TWA Dome. A woman saw that mom was struggling to walk and took her by the hand and escorted us to a handicapped entrance. We were very thankful. We settled into our seats.

The anticipation of the pope’s arrival in the TWA dome in Saint Louis was phenomenal. The crowds chanted, “John Paul 2, we love you!” We watched the monitors as he made his way into the dome. There was an electricity and move of the Holy Spirit among the faithful gathered that was indescribable. When he came into the arena, my mother and I embraced one another and cried. I told her I loved her!

As the years passed, even though she began to experience additional health issues, something wonderful seemed to be happening. Both of us helped each other grow in faith during the trial. My interest in reading Holy Scripture increased. Soon I found passages that were inspirational and insightful:

No trial has come to you but what is human. God is faithful and will not let you be tried beyond your strength; but with the trial he will also provide a way out so that you may be able to bear it.-1 Cor. 10:13

I can do all things through Christ who strengthens me.-Phillipians 4:13.

People noticed how her attitude towards her disease and death changed. She even joked about it. When asked how she was doing, she would say something like, “Well aside from the scleroderma, diabetes, leg sores, arthritis and occasional seizures, I am just fine.” Then she would chuckle.

Mom lived 17 years with the disease, some 10 years longer than projected. Her last years were characterized by numerous doctor and hospital visits.

During the last week of October, 2004, she fell and broke her hip. This was the beginning of the end. She was admitted to the hospital. The doctor performed surgery that she would never recover from. She slipped into a coma. We called family members. We stood at her bedside. The nurse informed us that she could go into cardiac arrest at any moment and wanted to know if she should be resuscitated. The question was primarily directed to me.

In previous conversations, mom told me she didn’t want any “unnecessary means” performed on her in an event such as this. But this day, her older sister Jenny was in the room and didn’t want me to make the decision before consulting with mom’s younger sister Mary who had not yet arrived. I told the doctor I would need time to make the decision.

I felt trapped. Mom's time was slipping away. I knew that mom’s wishes were to let her go. Further, the doctor told me that her body was so frail that it might not endure the trauma of the resuscitation efforts. I wanted to slip out of the hospital room, unnoticed by my aunt and let the doctor and nurses know they could let her go, they did not have to resuscitate.

But there stood my aunt, looking at my mother, crying as mom’s breathing grew more shallow. I was frozen in place but my feet pointed towards the door. I felt a sense of urgency. The nurse came in to get me and pulled me out of the room and asked me for my decision. I told them not to resuscitate. I felt right about this decision, but now I had to face my aunt. My mom’s younger sister Mary still had not arrived at this point. I told my aunt Jenny that I told the doctors to let her go if she goes into arrest. She nodded her head in agreement much to my relief.

But now, there was yet one more thing to do. I had to tell my mother she has my permission to go. They say that people’s ability to hear remains intact even when they are in a coma. My wife encouraged me to tell her good-bye. I pointed my feet towards her and walked to her bedside. Fighting back tears, I said, “Mom, I love, you. You have my permission to go.”

During the late morning and early afternoon, her breathing and heart rate slowed. We called in a priest to administer the Sacrament of the Sick. My wife and I sang a hymn.

At about 3 PM, the hour of Divine Mercy, mom died peacefully. The 3 o’clock hour is also the time Mark’s gospel tells us that the Lord Himself breathed His last. Further, she died on November 1^st, All Saints Day. I don’t find that a coincidence either. A saint is someone who has died and gone to heaven. I have no intentions on canonizing my mother. She was not perfect. But she held on to her faith in God until her very last breath. In my view, she died with the awareness that there is a resurrection of the body. There is eternal life after death.

We were indeed buried with Him through baptism into death….Just as Christ was raised from the dead by the glory of the Father, we too might live in newness of life.-Romans 6:4

This trial of suffering and death became an opportunity to grow in faith. Because of her example, I know that a place called heaven exits. It is a word that appears twice in the Our Father. She also taught me about hell and purgatory. But as her time neared the end, her focus was on the things above rather than below.

We began funeral planning a few years in advance. I knew where she wanted the wake and funeral and where she wanted to be buried. Glendale Cemetery is where her parents, my grandparents are buried. We chose a plot next to my Godfather. My Godmother was her best friend in high school. She said, "We were neighbors growing up and we will be neighbors again!"

Mom told me what music she wanted. She wanted a 3 priest Mass like her mother had. I knew this would be the most difficult request. She requested Monsignor Bognanno, Monsignor Chiodo and Monsignor O’Donnell. So in essence she wanted a 3 monsignor Mass! I told her I would see what I could do but with the shortage of priests and increase of demands on them nowadays, I couldn’t guarantee this for her. She seemed to understand.

The funeral was held at Christ the King Catholic Church lead by Monsignor Bognanno. It was beautiful. My brother Mark played the piano, my wife Nancy sang and also joined me in delivering the eulogy. Many who were in attendance remarked about how much mom suffered and yet she remained an example of faith. Many expressed their belief that she did her suffering on earth and went to heaven.

Mom was an example to me and to us all. She comforted us during our childhood with words of wisdom when we were afraid of dying. She held on to her faith in God in times of trial. She was an inspiration. She is an inspiration.

And now as she offered prayers for me and our family, I offer a prayer for her:

Now my mom lays down asleep

I pray the Lord her soul to keep

May she and Jesus guard the night

And wake me with the morning light