Tag Archives: Death Of A Child

Death of a Child

Of all the pains that life can hand us, arguably the most searing is the death of a child. A parent’s world irrevocably and horrifically changes forever, no matter what the circumstances or the age of the child.

In what seems to be a manner contrary to the natural order, parents not only have a physical and emotional part of themselves ripped away, but also have the loss of all of the hopes, dreams, and aspirations they had so completely invested in their child.

With this loss, a parent’s world radically and dramatically changes forever. Most friends, relatives, and acquaintances do not know how to approach or console for fear of offending or upsetting the parent. Many parents say they begin to feel that they are treated as if they have a contagious disease. In an attempt to seem normal, or “over it,” emotions are suppressed and the parent begins to withdraw or become distant. This reaction, however, compounds the all-encompassing feeling of being totally alone.

Many well-intentioned attempts have been made to assist parents in recovering emotionally from their loss, including psychotherapy and various support groups. However, in an attempt to be all inclusive and “politically correct,” the spiritual perspective of the grieving process—or even the existence of God—is usually lacking (or actively avoided) in many of these approaches.

It was the personal experience of my own family and this deep need for spirituality that led to what is now known as the Emmaus Ministry for Grieving Parents.

Thanksgiving evening of 2002, a healthy, ambitious and successful young US Air Force Captain, Paul Monaghan, took his own life, without any explanation or warning signs. As unexpected as a lightning strike on a clear blue day, Paul’s death shattered our idyllic, comfortable family life forever.

For five years afterwards, when she wasn’t numb, my wife, Diane, frantically searched. Searched for answers from her son’s wife on what actually happened. Searched for answers from his friends on what he was like leading up to his death. Searched for answers from Air Force investigators, who took an entire year to file their death report. Searched for answers not so much to the question of “why” as to “how”. How could her beautiful son do this to himself? How could he do this to the family he loved so much? She frantically searched for understanding, read an entire library of books on the death of a child and suicide, went to psychiatrists, psychologists, and psychotherapists, joined support groups and journaled. Nothing helped at all.

During these years, she prayed for two things: the strength to get out of bed in the morning and an understanding of how she could make some good come from such a horrific tragedy, but her prayers seemingly went unanswered. She felt God was not listening. During this time, she says, she received some strength from her faith, but not much comfort.

Then one day, everything changed. Undoubtedly, it was the Holy Spirit that prompted her to attend a totally unrelated program that eventually led to a deep relationship with a compassionate religious sister, who was a Spiritual Director. They met at St. Anthony Shrine, a Holy Name Province Franciscan community in Boston, MA. Slowly, after five years, her numbness began to subside.

Over and over again, she talked with her Spiritual Director about the promise of eternal life…the fact that life has changed for Paul, not ended. The fact that she would indeed see him again. For the first time since 2002 Diane, in the rich teachings of the Catholic Church, finally found peace, comfort, and hope.

All this while, I was on a different journey. I put my feelings and emotions in a tightly wrapped box deep within me, while pretending to the entire world that nothing was wrong and that I was fine.

It is indeed fortunate that my wife and I had the wisdom to grant each other the ability to grieve in our own ways and so avoid what many married grieving parents experience – a good marriage becoming fragile or totally falling apart because of resentment or misunderstanding of the ways in which each other are grieving.

Eventually Diane made the life-changing decision to leave her position as vice president of a local college and go to work raising money for the Shrine in Boston. Growing more deeply in her spirituality, she eventually felt called to ask the Guardian of St Anthony Shrine if he would support a ministry to spiritually serve other deeply wounded grieving parents. She believed that focusing on the spirituality of the grieving process could help many other parents as much as it helped her. He agreed, and together they decided to offer a spiritual retreat for parents whose children had died. They opened it to any parent whose child of any age had died by any cause—no matter how long ago, and no matter how close the parent did or did not feel to God.

And so, with nothing more than trust that the Holy Spirit would guide their efforts, Diane and the Franciscan friars of St Anthony Shrine held their first retreat in March of 2009. I initially wanted no part of this endeavor, reasoning that real men bear up no matter what, fearing any display of any weakness or helplessness. Nevertheless, I ultimately went to the retreat to support Diane. There is no doubt in my mind that during that weekend I, too, was showered with the gifts the Holy Spirit so generously offered that day.

Fr. David Convertino, OFM, then Guardian, described that initial retreat, “This was one of the most grace-filled experiences that I have had during my entire life as a priest and as a friar.”

From this uncertain beginning, the Emmaus Ministry for Grieving Parents was born. It now offers One-Hour, One-Day, and Weekend Spiritual Retreats wherever it is called to do so.

The ministry does not provide therapy or function as a support group. In fact, parents are told that they will not be asked to stand up and relate their stories, or even to speak at all, unless they choose to do so. Rather, the ministry seeks to create a safe and sacred space for parents to “undress their hearts” before God and others who know and feel their pain—and to focus on the tenets of our Catholic faith and the certainty of the Communion of Saints now and in the future. Truly it is new evangelization in action.

Since its inception, this ministry has helped hundreds of parents initiate or reinvigorate their relationship with God—and with their deceased children. Over the past eight years it has evolved into a ministry for grieving parents offered by grieving parents. Very much parent-led, it is a ministry requiring very little parish or diocesan time or money. Parents struggle through and share the horrendous pain of their own journeys with each other, while inviting Jesus to join and comfort them, just as he comforted his grieving disciples on the road to Emmaus.

To the best of our knowledge, there is no other similar type of ongoing ministry focused on the spirituality of the parent’s grieving process anywhere in the United States. Since its inception, the ministry has served hundreds of parents from sixteen states, as well as Canada.

While its spiritual home continues to be St. Anthony Shrine in Boston, the ministry, as a 501(c) (3) non-profit, now partners in ministry with the Archdiocese of Boston, the Diocese of Wheeling-Charleston WV, and parishes in RI and CT as part of its mission to assist other parents and dioceses in introducing and maintaining this powerful ministry.

After one or more initial retreats offered in collaboration with our Boston-based retreat team, typically local parents are called by the Holy Spirit to carry the ministry forward in their own areas. In providing witness through personal testimony to other parents, many have found that “It is in consoling that we are consoled.”

Introducing the ministry in your area at little or no cost is relatively easy. Because we have been blessed with generous donations and several grant awards, we are able to come to you, wherever you are, bringing many years of experience and well-developed templates for offering your Emmaus Ministry for Grieving Parents spiritual retreats. Please call us at 617-542-8057 for more information or email diane@emfgp.org.

About the author
Charley Monaghan is a co-founder of the Emmaus Ministry for Grieving Parents, which serves the spiritual needs of parents whose children of any age have died by any cause, no matter how long ago. The ministry is based in Boston, MA.

Related articles:

Mary Anne Russo, “A Special Family: Shaped by Down Syndrome, Grief and Grace”
Elena Kilner, “A Lesson in Love from our Dying Son”

Spiritual Help for Grieving Parents

With this loss, a parent’s world radically and dramatically changes forever. Most friends, relatives, and acquaintances do not know how to approach or console them for fear of offending or upsetting the parent. Many parents say they begin to feel that they are treated as if they have a contagious disease. In an attempt to seem normal, or “over it,” emotions are suppressed and the parent begins to withdraw or become distant. This reaction, however, compounds the all-encompassing feeling of being totally alone.

Many well-intentioned attempts have been made to assist parents in recovering emotionally from their loss, including psychotherapy and various support groups. However, in an attempt to be all-inclusive and “politically correct,” the spiritual perspective of the grieving process—or even the existence of God—is usually lacking (or actively avoided) in many of these approaches.

It was the personal experience of my own family and this deep need for spirituality that led to what is now known as the Emmaus Ministry for Grieving Parents.

On Thanksgiving evening of 2002, a healthy, ambitious, and successful young US Air Force Captain, Paul Monaghan, took his own life, without any explanation or warning signs. As unexpected as a lightning strike on a clear blue day, Paul’s death shattered our idyllic, comfortable family life forever.

For five years afterward, when she wasn’t numb, my wife, Diane, frantically searched. Searched for answers from her son’s wife on what actually happened. Searched for answers from his friends on what he was like leading up to his death. Searched for answers from Air Force investigators, who took an entire year to file their death report. Searched for answers not so much to the question of “why” as to “how”. How could her beautiful son do this to himself? How could he do this to the family he loved so much? She frantically searched for understanding, read an entire library of books on the death of a child and suicide, went to psychiatrists, psychologists, and psychotherapists, joined support groups, and journaled. Nothing helped at all.

All this while, I was on a different journey. I put my feelings and emotions in a tightly wrapped box deep within me, while pretending to the entire world that nothing was wrong and that I was fine.

Eventually, Diane made the life-changing decision to leave her position as vice president of a local college and go to work raising money for the Shrine in Boston. Growing more deeply in her spirituality, she eventually felt called to ask the Guardian of St Anthony Shrine if he would support a ministry to spiritually serve other deeply wounded grieving parents. She believed that focusing on the spirituality of the grieving process could help many other parents as much as it helped her. He agreed, and together they decided to offer a spiritual retreat for parents whose children had died. They opened it to any parent whose child of any age had died by any cause—no matter how long ago, and no matter how close the parent did or did not feel to God.

And so, with nothing more than trust that the Holy Spirit would guide their efforts, Diane and the Franciscan friars of St Anthony Shrine held their first retreat in March of 2009. I initially wanted no part of this endeavor, reasoning that real men bear up no matter what, fearing any display of weakness or helplessness. Nevertheless, I ultimately went to the retreat to support Diane. There is no doubt in my mind that during that weekend I, too, was showered with the gifts the Holy Spirit so generously offered that day.

Fr. David Convertino, OFM, then Guardian, described that initial retreat, “This was one of the most grace-filled experiences that I have had during my entire life as a priest and as a friar.”

From this uncertain beginning, the Emmaus Ministry for Grieving Parents was born. It now offers One-Hour, One-Day, and Weekend Spiritual Retreats wherever it is called to do so.

The ministry does not provide therapy or function as a support group. In fact, parents are told that they will not be asked to stand up and relate their stories, or even to speak at all unless they choose to do so. Rather, the ministry seeks to create a safe and sacred space for parents to “undress their hearts” before God and others who know and feel their pain—and to focus on the tenets of our Catholic faith and the certainty of the Communion of Saints now and in the future. Truly it is new evangelization in action.

Since its inception, this ministry has helped hundreds of parents initiate or reinvigorate their relationship with God—and with their deceased children. Over the past eight years, it has evolved into a ministry for grieving parents offered by grieving parents. Very much parent-led, it is a ministry requiring very little parish or diocesan time or money. Parents struggle through and share the horrendous pain of their own journeys with each other, while inviting Jesus to join and comfort them, just as he comforted his grieving disciples on the road to Emmaus.

Related Articles
“A Lesson in Love From Our Dying Son” by Elena Kilner

A Special Family: Shaped by Down Syndrome, Grief and Grace

By the time our son Stephen turned seven, we were hoping to adopt another child. To our three birth children, Guy (8), Stephen (7), and Matthew (5), we had already added David (3) and Danny, whose Down syndrome no longer seemed remarkable. He had passed the ripe old age of one and, although he was developing more slowly than our four older boys, he was making strides at his own pace. Other than a small PDA (a patent ductus arteriosusa or small hole in his heart) and the croup which scared us all half to death, he was in good shape physically. (The hole eventually closed, and he outgrew the croup, thank God!) Except for the time I fed him too many carrots and turned his skin orange, we were doing a pretty good job of parenting. Danny had grown into being just another member of the family, and we felt that we could care for one more baby with special needs. Down syndrome did not seem like a disability. It was a challenge which early intervention services helped us to meet.

The following spring, we met John Francis in The New York Foundling Hospital. He was four months old. The first time I held him, he looked up at me and smiled. (I refuse to believe it was gas!) I was a sucker for cute babies, and his little face won me over. Like Danny, John Francis had a small PDA. This was not an issue, but the colostomy bag attached to his little abdomen did present some problems. I had to learn to care for it before The Foundling would release him to us, and that made me nervous. But he had that adorable little smile and I soon managed to clean out his bag, “like a pro,” one of the nurses said, as though his guardian angel was guiding my hands. Looking back now, I think perhaps he was!

Our first night at home, I had a slippery little mess on my unskilled hands. I think that was the only time I wondered about the wisdom of our decision! My sister, who was present for my struggles and frustrations, suggested that I use a meat baster to flush out his little bag. That solved my biggest problem and I continued to use that baster until his colostomy was reversed by the time he was two.

The other boys did not like the idea of the colostomy bag, although it was covered up and soon became a non-issue. They were also against us naming the baby “Francis.” They thought the kids in the neighborhood would make fun of him. I had to laugh at that. Here was this little Chinese baby with Down syndrome and a colostomy bag and they were worried about kids making fun of his name! But we compromised on that, and named him John Francis instead. To my knowledge no one has ever made fun of him or of his name!

After his slippery beginning, John Francis found himself the littlest child in a busy household. We had decided, even before adopting Danny, that our family life would not change because of the addition of children with special needs. We went to Church, took them all to McDonald’s, went shopping and on vacation. Other than toting more luggage, along with the usual baby paraphernalia plus that necessary baster, we managed. My husband took the older boys to their sporting practices and events. I stayed home with the little ones, and joined him when I could. We were a typical family, busy in the chaos of everyday life.

All of the boys got along, but Stephen took a special interest in John Francis. They were “roomies” and Stephen seemed happiest when he was holding the baby in the crook of his arm. I can still see the look of pure joy on his face as he went about the house toting John Francis with him. They went to bed and crib, as usual, on the night of February 12, 1990, but Stephen came out of his room about 10 p.m. in distress. He had a terrible headache and could not sleep. I gave him some pain reliever and put him back to bed. I could soon see that this was not an ordinary headache. We called for an ambulance and, by 3 a.m. the following morning, Stephen was dead. His undetected brain aneurism had burst suddenly, without any warning. That is what made us a “special family”: grief, not Down syndrome.

A family does not get over the death of a child. As time went on, we began to function again, but it was very difficult. The older boys mourned Stephen quietly, and my husband, Tony, sank into a deep depression. The laundry did not stop, the house did not stay clean, and the meals did not cook themselves. I managed to get through some very difficult days bearing the brunt of a loss which nearly paralyzed us all. Losing Stephen was the greatest challenge of our lives.

I knew that, in order for me to heal, I had to give myself over to something greater than my loss. It seems incredible to me now that my husband, Tony, went along with my desire to find another baby, but he did. We began to actively pursue another adoption and were led back to The New York Foundling Hospital the following year.

A baby girl with Down syndrome had been born in January of 1991. She had a large hole in her heart and lay, we were told, like a little blue doll. The agency did not want us to meet her until after her surgery. They were afraid she might not survive, and did not want us to face what would be another devastating loss. A lot of prayers were sent up to heaven during the next few months! After the surgery, we were finally called in to meet her.

Now this little bundle was a challenge of a different sort! She had not developed the ability to suck and swallow. On the positive side, her heart had healed well and her prognosis was good. I faced the daunting task of putting a tube down her nose into her tummy four times a day so that she would be able to get the nourishment she needed to thrive. I was to do that after I coaxed her to drink from a bottle, something she never quite mastered. I did not know if I was up to this task, this risk of giving our hearts to another child, at all.

After we met Maria Grace, I went to church. By then Stephen had been gone a year and a half. While sitting in the back of my parish church, I looked up at the altar, praying for guidance. There, my soul very clearly saw Stephen, holding a little baby out to me in his outstretched arms. It was as if he were offering me the gift of life. How could I reject it?

Again, angel hands seemed to guide my own as I learned to feed Maria Grace. We brought her home by the end of that week, another China doll, when she was seven months old and weighed less than eleven pounds. Matthew, our youngest birth son, had taken over Stephen’s place as “roomie” and chief holder of John Francis. I was able to devote my time to the baby’s care

Our children are now grown. Our oldest son, Guy, works in a school with a boy who has Autism. He hopes to teach full time in September. Matthew worked in a Day Program with adults with special needs for three years and is looking forward to teaching Social Studies in the fall. David was a “Buddy” with United Cerebral Palsy and also “buddied” while he served in the army. He will graduate from college this May. Danny and John Francis both go to work daily in Hub Sites, gathering places from which adults with special needs go out to serve as volunteers in the community. Maria Grace also volunteers at a Hub Site. This only daughter of mine has grown into a confident 23-year-old who has the ability to keep us all in our places. Even the dogs! Down syndrome has not been a disability for us. It has been, instead, the lens through which we, my husband and I and all of our children, have learned to love each other. You can see our story on YouTube at “What to Expect When You’re Expecting a Baby with Down Syndrome”. I hope that the smiling faces it contains suggest that Down syndrome is a gift, like life itself.

How has it been raising a family in which three members have Down syndrome? It has been a gift to treasure – and to share!

Infant and Pregnancy Loss

The Church calls children “the supreme gift of marriage” (Gaudium et spes, n. 50). Losing a baby, whether through miscarriage or as an infant, is one of the deepest forms of grief and pain that a couple may endure.

Unfortunately, many couples often suffer without any support, as in the case when a couple loses a child before sharing that they were pregnant with others, or insufficient support because family and friends are unsure of what to say or do because of the difficulty and often suddenness of losing one so young.

If you or a loved one has suffered the loss of a child during pregnancy or infancy, know that help and resources are available.

For Your Marriage Resources

Miscarriages and Stillbirths Puts Some Couples at Risk
Book Review for After Miscarriage: A Catholic Woman’s Companion to Healing and Hope
Loving Parents After Miscarriage
Spiritual Help for Grieving Parents
Solace and Strength in the Sorrow of Miscarriage
One of our bloggers shares her experience of a miscarriage

Catholic Ministries Supporting Grieving Parents and Families

Behold Your Child Developed by the Archdiocese of Dubuque to help provide hope and healing for parents and families who have experienced a life-limiting prenatal diagnosis, miscarriage, stillbirth, or infant death
Catholic Miscarriage Support Practical and spiritual support for Catholics who have lost a child to miscarriage
Elizabeth Ministry International Offers hope, help, and healing on issues related to relationships, sexuality, and childbearing
Emmaus Ministry for Grieving Parents Offers spiritual support to parents who have lost a child at any age, by any cause, no matter how long ago
Heaven’s Gain Ministries For the physical, emotional, and spiritual needs of families experiencing pregnancy loss: before, during, and after the delivery of their precious baby
Morning Light Ministry Guides bereaved parents from the darkness of grief toward His Morning Light
Red Bird Ministries Guides individuals and couples through the complexity and trauma that happens with the loss of a child from pregnancy through adulthood

Solace and Strength in the Sorrow of Miscarriage

It is estimated that one out of four pregnancies ends in miscarriage. This loss can have a profound effect on the mothers, fathers and families of the children who pass away, and many of us may be unsure how best to respond to those who are hurting. Joanne* shares a personal story of her experience comforting a family going through this heartache.

While working in my parish office one day, I received a call from our local hospital, where a mom had been admitted with fetal distress. I was grateful that our parish priest, Fr. Thompson, was able to go to the hospital with me to visit this young mother, Amanda. Arriving in her room, we learned that labor was going to be induced because her baby had already died. My head was swimming as I was overcome with what Amanda must be feeling at this difficult time.

At first, I wasn’t sure what to do. But then, as a mother myself, I knew how to respond. I stroked her hair and rocked her in my arms. Amanda’s husband David, who was traveling, had been notified and was on his way. When he arrived we stepped back, giving the couple a private moment to cling to one another. Eventually, David turned to us and asked, “What do we do?”

Fr. Thompson’s response was drawn from deep within the compassion of Mother Church. While the young couple’s world was spinning out of control, he offered something they could hold onto—God’s unconditional love. He opened the Bible, asked me to read Psalm 139, and offered prayers of blessing.

I also talked to Amanda and her husband about what might happen next, encouraging them to see and hold their baby, take pictures and create keepsakes. Fr. Thompson explained opportunities for a funeral and burial service. Burying those who have died at any age is seen by the Church as a corporal work of mercy. Therefore, the Church encourages a funeral rite for children whose baptism was intended by their parents, but who died before being baptized.

As the doctor came in, we prayed with Amanda and David, and then left the room during the delivery. We stood outside the door praying the Rosary. The stillness of the night was not disturbed by the joyful sound of a newborn’s cry. Instead, it was punctuated with a grief-stricken mother’s sobbing.

The doctor spoke to us as he came out of the room with tears streaming down his own face. He said, “I can be the guide to physical healing, but their greatest need is spiritual healing. I am so grateful you are here.” We stepped back into the room where we stood in silence and cried with Amanda and David, sharing a powerful moment of awe and grief.

After some time, I spoke to the parents of God creating this little one with them, and of how important their child was and would continue to be to us all. I spoke of God weeping with them, comforting them in the midst of their grief. I asked if they had named him. David’s tears ran down his face and splashed onto the tiny baby as he whispered, “William.” Fr. Thompson gently touched William’s forehead and made the Sign of the Cross with the water of his dad’s tears. We spoke of God’s love for William, and we commended his soul to God.

Later on, we assisted Amanda and David in connecting with a funeral home and planning a funeral, graveside service and burial for little William. The family found comfort in traditional burial prayers adapted to fit a baby’s life and death.

People often assume that the needs of a family in this situation are mostly medical, and that the hospital or medical staff will take care of things. However, miscarriage includes emotional, relational and spiritual suffering that requires assistance from family, friends and church leaders. The immediate need is to help the family become familiar with their options for providing a time and place to acknowledge the dignity and worth of their child. These include simple rites like naming and commendation ceremonies, funeral rites and burial or entombment.

Death may separate us physically, but it does not end the relationship; these moments help strengthen a relationship with the child in a way that will be helpful for long-term healing. They also give the broader Church a chance to grieve and remind others of the significance of this child, who is entrusted for all eternity to the Lord. A parish community can also support grieving families and honor the lives of their little ones in other ways.

Public support might take the form of an annual memorial service or a memorial plaque in the church with the names of the babies who have passed away.

Personal support is also essential. Some people become exhausted from their grief and are unable to maintain household chores. Their lack of energy makes it hard to keep up with everything, so providing meals or doing laundry or other chores can help the family meet their common daily needs. Other times, simply being present is what’s needed. Another woman who lost her child through miscarriage said the best response she experienced came from a friend who said, “I came to cry with you” and presented her with a bag full of tissue boxes.

Many people in their grief have almost a compulsion to talk. They desperately want someone to know what they are going through, and repeating the story of their loss over and over can be part of the healing process. The role of the comforter is to listen and reassure them that their thoughts are normal, not to supply them with answers. Many consolers experience feelings of inadequacy when they have no answers or words of wisdom. They may make statements that are not meant to be theologically flawed or hurtful, but often are. While these comments are meant to take away the pain, simply saying, “I am deeply sorry your baby has died,” might often be the best thing to say.

Although we may feel unsure how best to comfort those who mourn, we must stand with them in their time of suffering. Miscarriage touches the lives of many people, yet all too often this tragedy remains unaddressed. This lack of response not only often leads to unresolved grief, but also fails to clearly manifest our belief that each person, from conception onward, is precious and unique. The death of babies through miscarriage is a time to honor their lives and to support their grieving families. Amanda and David were greatly assisted and comforted by family, friends and a parish community who helped them to memorialize and cherish William. As members of a community of faith ourselves, let us comfort those who mourn as we look forward together to a time when all tears are dried and our families are whole once again.

The story of Joanne, Fr. Thompson, Amanda, David, and William (their names are changed for their privacy) is just one example of the many lives touched by a miscarriage. To find out what pastoral resources may be available in your local area, contact your diocesan office for more information. For liturgical resources, the Catholic Household Blessings and Prayers, Revised Edition (Washington, DC: USCCB, 2007) includes an order of blessing of parents after a miscarriage or stillbirth and The Order of Christian Funerals: Vigil, Funeral Liturgy, and Rite of Committal, Bilingual Edition (Collegeville, MI: Liturgical Press, 2002) includes prayers for a stillborn child and his/her parents.

Reprinted from Respect Life Program, Copyright © 2014, United States Conference of Catholic Bishops, Washington, D.C. All rights reserved. Additional resources and ordering information is available at www.usccb.org/respectlife.

A Lesson In Love From Our Dying Son

In the fall of 2011, my husband Patrick and I had been married for eight years and our family was rapidly growing. Our oldest child had just turned six and we were expecting our fifth child in December. John Paul was born on December 6, 2011. We knew immediately that something was very wrong. The delivery itself was traumatic, during which his arm was broken. When he was finally delivered, he didn’t make a sound. He couldn’t breathe. He was barely moving. He was whisked away to the neonatal intensive care unit. In the days and weeks that followed, we gradually started to understand the severity of John Paul’s condition. When he was 5 weeks old, he was diagnosed with Spinal Muscular Atrophy (SMA). We learned that SMA was a genetic, progressive, and terminal neuromuscular disorder. Gradually, every muscle in John Paul’s body would weaken and eventually waste away. Usually, death is caused by complications from a common cold because of respiratory weakness. You can imagine how we felt being told that our son would die from complications of a common cold, knowing that we had four children at home, several of whom were not yet adept at covering their mouths and noses when they sneezed or coughed.

Of course, Pat and I were devastated. We were trying to wrap our heads and hearts around the reality that confronted us. At the same time, we were also quickly falling desperately in love with our son. We saw his first smiles and he could even hold my finger in his hand. During our time in the NICU, it was a rollercoaster of singing lullabies and whispering sweet nothings one minute and the next using emergency procedures to bring his oxygen saturation levels back to normal because he couldn’t clear his airway the way most people do by swallowing or coughing.

We had gleaned some hope from families that we had been put in contact with who had children with the same diagnosis. They were living at home with their families, growing, learning and loving despite their weak bodies and many medical issues. In many cases, they were living way past what doctors were anticipating. We desperately wanted that for JP. We wanted our other kids to get to know their new brother and we wanted JP to feel the love and joy of a home and his family.

When he was 7 weeks old, JP had surgery for a G-tube, to enable us to feed him with a feeding pump and a tracheostomy because he required constant breathing support from a ventilator. When he was 3 months old, we brought him home.

It was beautiful to see the other kids interacting with him. Joey learned to use the suction machine and would practice reading to him, Liam loved learning to do his physical therapy exercises with him, Madie danced for him, and Ben would kiss him and play peek-a-boo. At every meal, they would fight over whose turn it was to give him his medicine or hook up his bag of formula to his g-tube port. This was our “new normal” and we loved it.

We also had some pretty major struggles in getting adequate nursing care and ended up doing much of his 24-hour care ourselves, taking shifts through the night on weekends, frequently jumping from bed to assist a nurse in clearing his airway and helping him recover his oxygen saturations to normal levels, taking him to appointments with just about every specialist you could name. He was hospitalized several times for infections. We also observed him quickly losing strength. Within a few months of his homecoming, he had lost the ability to smile, what little movement he had in his fingers disappeared and he was increasingly losing eye control.

Having a child who was so medically fragile introduced new challenges to our marriage as well. Never before was communication so critical. In some ways, it was easier to understand where the other was coming from. We were more sympathetic and patient because we were both going through the same sleep deprivation, emotional exhaustion, and tension of caring for a child whose life was not a given from one moment to the next. We were more unified and accommodating, and we literally knew where the other was at any given moment. John Paul gave us opportunities to love each other in new ways, like delaying waking the other when it was time for the 2 a.m. shift change or making sure the other got “snuggle time” with JP. We were reporting to each other when we needed to step away from John Paul’s side so that the other was “on call.” We also literally didn’t have the emotional energy for petty fighting. Did both of us snap sometimes in exhaustion, stress or frustration? Absolutely, but neither of us put that much weight on it. We both knew we were as vulnerable to the same weaknesses. Things that weren’t critical to the mission were quickly forgotten.

In other areas, our communication was more difficult than it ever had been. We had to make decisions about the future of our family and about how to do what was best for our son who was on life support, and we didn’t always agree. Little by little we learned that even when we disagreed quite strongly about the course we felt our family should take, we had to respect and trust the intentions and heart of the other. Resolutions were not always made overnight. Ultimately, because we both truly did have the interest of John Paul and the entire family in the forefront, when action needed to be taken, we were able to see eye to eye with time and prayer.

In February of 2013, we learned that much of John Paul’s brain had wasted. There were also new concerns that he had developed a type of nerve cancer. With a lot of prayer and peace, we discerned that God was calling John Paul home. On February 20, 2013, our parish priest said a Mass in our family room and, surrounded by family and songs of praise, JP joined the saints in heaven.

It has been a little over a year since John Paul died. Pat and I are learning how to support each other in the different ways we grieve. We are learning to be better listeners and better sharers. There is a deeper bond between us now. I can only compare it to what I imagine the bond is like between two soldiers who are fighting in the trenches together. I say “fighting” because even though John Paul isn’t with us now, the war is not over yet. It won’t be until we are both reunited with our little boy. There are plenty of battles left to fight and only God knows what they will involve. They may include more children with SMA. They may include more healthy children with other struggles. They will include the challenge of helping our children get to heaven.

Many times in the last two years, it took getting to that breaking point, whether it was feeling like getting adequate nursing care was impossible, receiving yet another call with bad test results from a doctor, or snapping at my husband in exhaustion, before I surrendered the circumstances to God. Ultimately, God did work everything out, but had I trusted Him with it sooner, perhaps I could have appreciated His hand in those moments rather than in retrospect. There are many statistics about the damage the death of a child can do to a marriage. Sadly, I don’t doubt their validity but it is a number that is unnecessarily high. When God gives us more than we can handle, it is because He wants us to entrust it to Him, and let Him take care of it. We can only fail if we try to do it alone. Of course, the myth is in thinking that we can do anything without God. Whether it is sharing the last piece of cake or burying a one-year-old son, we constantly rely on the grace that God gives us in our vocation to get our spouse and children to heaven.

Related Articles
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About the author
Elena Kilner is the author of Letters to John Paul: A Mother Discovers God’s Love in Her Suffering Child, http://mooringspress.com/letterstojohnpaul.html.

About the photo
Patrick and Elena Kilner with their children, used with permission.

Loving Parents After Miscarriage

A friend who recently lost a child through miscarriage called to express disappointment that she didn’t know where to turn for the resources and support she and her husband so desperately needed. This heartbreaking conversation reminded me of another friend who miscarried a child at six months of pregnancy, but who masked her pain with a smile instead of reaching out for comfort. Though each experienced the deep pain of losing a child, neither received the loving support she deserved.

Sadly, their experiences are common. Though most miscarriages occur very early in pregnancy, often before the woman knows she is pregnant, as many as 15% of known pregnancies end in miscarriage. Our culture and even some church communities don’t always recognize this loss, leaving women or couples to deal with their pain alone.

Our witness to life must address the pain and grieving experienced by those who have lost a child. Just as we recognize the humanity of the unborn child lost to abortion, we must acknowledge equally the unborn child lost to miscarriage. “I see clearly that the thing the church needs most today is the ability to heal wounds and to warm the hearts of the faithful; it needs nearness, proximity,” Pope Francis said recently. As Catholics and people of life, we are called to draw close to these parents and provide care and comfort to their aching hearts.

So what can we do to help parents grieve their loss and witness to the gift of their child’s life? We can acknowledge their loss, support them as they grieve, and direct them to helpful resources. How do we do this?

First, don’t dismiss their loss with comments like “You’re young; you’ll conceive again soon,” or “You still have your other children.” Instead, make time to listen as they share their pain. Affirm their right to grieve. Offer your condolences and prayers, and ask if there is anything they need. Direct the parents to their parish priest, who can help them organize a memorial service, funeral or burial. The Order of Christian Funerals has prayers for a stillborn child, and the Book of Blessings includes a blessing for parents that can be administered by a priest or deacon after a miscarriage. Some blessings can even be adapted for use by a layperson.

Keep in mind that the father and mother may have different emotional needs. She might feel the loss more directly, or wonder if somehow she caused the miscarriage. She might prefer to talk things out with a friend. The father may need space to eventually feel comfortable sharing how the loss affects him, and may even need time to take his mind off things. He might need guidance on how to support the mother. Losing a child can drive parents apart, so the couple might need the reassuring love of a faithful community to keep close and stay together. Child loss or bereavement support groups at their parish or local hospital can provide support, as well as spiritual advice or counseling.

As members of the body of Christ, the Church, we are called to bear witness to the loss of every life, no matter how brief or small. Let us pray that our growing sensitivity to the loss of a child through miscarriage will better assist grieving parents and help them to entrust their child to God’s unfailing care and mercy.

About the author
Mary McClusky is Assistant Director for Project Rachel Ministry Development at the Secretariat of Pro-Life Activities, U.S. Conference of Catholic Bishops. To learn more about the bishops’ pro-life activities, go to www.usccb.org/prolife.

Re-posted with permission from the USCCB Life Issues Forum.

Ten Tips for Dealing with Grief

The holidays can be difficult when one is grieving the death of a loved one, the end of a relationship, or the loss of a job or one’s health. Here are some guidelines that can help you heal during the holiday season.

1. Grieving takes energy, so be gentle with yourself. Treat yourself like you would treat a friend.

Try this today: Write out “I am a precious child of God” (or “treat yourself like your best friend”) and place it on the mirror in your bathroom or bedroom. Then read it every day.

2. Spend time with people who listen and validate your feelings, and give yourself permission not to spend time with those who don’t know what to say or those who say insensitive things.

Try this today: Call a friend who will listen, and talk with him or her.

3. Create time and space to grieve. Set aside time and get in touch with your feelings. Let the tears come. Use photos or videos to prompt the feelings if you need to. Jesus cried and He understands the need to cry and the need to let go. But He has also redeemed the entire grief process. He has been through this so you don’t have to do it alone.

Try this today: Depending on your needs, call a retreat center to set aside time with the Lord and yourself. Even a few hours at your local church can be helpful.

4. Remember a good thing that your loved one would want for you. When I was grieving the loss of my mom and dad, I would remind myself: “What would they want for me right now?” We know our loved ones would not want us to be consumed by our grief. They want us to know that faith tells us we will see them again. In the meantime God can heal us through the love of others.

Try this today: When you are sad, tell yourself it is okay to be sad; it is okay to cry. Then remind yourself of a good thing that your loved one would want for you.

5. God can turn our grief into gratitude. Rom 8:28 tells us that all things work for the good for those who love God. God loves us so much that by the power of the Holy Spirit, God will heal our grieving, and use it for good. I have seen this in my life and it brings new meaning to my pain.

Try this today: Read Romans 8:28 and write down what it means for you in your grieving.

6. Consider changing holiday routines. Some traditions may be comforting, so keep them. But some traditions may be difficult, and you may lack the energy to do them. Give yourself permission to change them if you think God is calling you do to that.

Try this today: Talk with a safe loved one who can help you decide what rituals to keep and which ones to change.

7. Make time for activities you used to enjoy. I love martial arts, and I try to go to class every Thursday evening; it is my “group therapy.” After my dad died in 2005, Thursday night came, and out of habit I went to martial arts. After coming home my wife asked me, “Did you have a good time?” After a long pause I said, “No, I didn’t, but I went.” At certain times in the grieving process we have to do the things we used to like to do before our grieving started.

Try this today: Take a moment to list some of the things you used to enjoy before your grieving started, and pray about which ones the Holy Spirit wants you to do this week or this day.

8. Consider the way you view yourself. You are not the problem; you are precious. Avoid negative self-statements such as: “How could you be so stupid?” or beating yourself up with regrets (“If only I had told her before she died . . .”). Start telling yourself positive things: you are God’s child, God loves you, God cares for you, you are good and beautiful because God created you good and beautifully.

Try this today: Tell yourself something positive right now! Stop any negative words, which are not helping your healing and may indicate that you need to do more grief work.

9. Understand you are not alone. There is a universal and particular side to all suffering. Universally, there are many people who understand some of what we go through when we grieve. Particularly, you can never fully understand my suffering nor can I fully understand your suffering because I am not you and you are not me. If we focus too long on the particular side it becomes too self-absorbed and we buy the lie that “nobody understands.”

Try this today: If you feel like “nobody understands” the depth of your pain, tell yourself that is only half true: that universally, many people understand the work it takes to grieve, and remind yourself that Jesus understands completely.

10. There is no right way to grieve. We all grieve differently, and men and women will grieve in their own unique way. Being aware of this can free us from trying to control another’s grief work. That said, if a person is not grieving at all and is not sleeping well, has anxiety, or is keeping so busy so as not to feel anything, those can be indicators that they may need more grief work for healing to happen.

About the author
Jim Otremba, M.Div, M.S., LICSW is a licensed therapist and Catholic coach in Minnesota (www.coachinginchrist.com).

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