When Children Die, Where is God?

This week, I was called to see a beautiful 2 month old baby boy I will call “Joseph” who was brought by his grandmother, mother and father to one of my city’s children’s hospitals from a small town hours away.

Joseph was born with a rare genetic condition called Trisomy 13 and needed medical care for a problem. As a nurse who has been active in medical issues involving people with disabilities since having my daughter Karen who had Down Syndrome, I was asked to help the parents oversee Joseph’s care.

Baby Joseph was doing well until an unexpected problem developed and despite heroic efforts to save him, he died early Friday morning. It was so heartbreaking for his family and the rest of us but their love for Joseph was inspiring and they said they were blessed to have had him.

So instead of my usual blog, I would like to reprint an article I was asked to write for Voices magazine in 2012 in honor of baby Joseph and his wonderful family.

When Children Die, Where is God?

On October 18, 2012, we lost our 6-year-old grandson Noah after a long and often brutal battle with a rare autoimmune disease called familial HLH (Hemophagocytic lymphohistiocytosis). Less than two months later, on December 14, 2012, twenty children around our Noah’s age — along with other victims — were viciously gunned down at Sandy Hook Elementary School by a disturbed young gunman. While the Sandy Hook tragedy affected the whole country and Noah’s death affected a smaller group of family and friends, I kept hearing the same question: Where is God or does He even exist?

The answer is that God is where He always has been when we grieve and suffer: with us and even carrying us through the roughest times, as the famous “Footprints in the Sand” poem depicts.  But what does that really mean?

Almost forty four years ago, I witnessed my first death of a child as a student nurse. Thirty years ago, my baby daughter Karen who had Down Syndrome died from complications of pneumonia. Three years ago, my oldest daughter Marie died by suicide. And now, there are Noah and the Sandy Hook victims. Personally and professionally as a nurse, I have also been with countless parents and others who have lost loved ones. I would like to share what I discovered as my personal “survival guide” for coping with grief as a Catholic woman. It consists of three decisions I made years ago.

I Choose to Live

All death is hard because it involves loss, but the death of a child seems especially cruel no matter whether the death resulted from violence, accident, or illness. No parent expects to outlive their child. When the supposed “natural order” of life and death is breached, it shakes all of us to the core even when the child is not our own. Especially in today’s secular world, even people of faith can feel lost and helpless.

When a child dies, shock, denial, and even alcohol and drugs can cushion the crushing grief for a while but eventually reality sets in. It is hard to even consider facing years and years of living without that precious person. Life is totally disrupted and even the routine of being at a hospital or bedside feels like a loss. In my case when I lost my daughters, I had to remind myself that my husband, children, and others needed me, but at times even that thought seemed totally overwhelming rather than motivating.

Recently Cesar Millan, the famous “dog whisperer” talked about his suicide attempt after a number of losses and how he learned to cope with bereavement from his experience with dogs. When dogs grieve, he recommends three things: exercise, discipline, and affection. He said he found this also helped him.

Looking back, I found that these three techniques had helped me. Exercise decreased my anxiety and pain. Discipline meant appreciating even the most mundane routines of life or work and embracing the distraction. Hugging my loved ones and friends gave me a renewed sense of connection with the world and even with God.

However, I know that life will still contain many challenges. For example, while Noah’s 2 1/2-year-old brother Eli is free of HLH, we recently discovered that Noah’s unborn baby brother Liam, who is due in April, does have the disease and will also need a bone marrow transplant. We pray that he will achieve the cure that eluded Noah but we face the future with our confidence in God intact. I will never be a cockeyed optimist but I do know that storms can be weathered and that we can be better rather than bitter as a result. (2017: Liam is now a happy, healthy 4 year old,)

I Choose to Be Happy

This is perhaps the hardest decision that I or any other bereaved parent has made but it is crucial. Years ago I was with a young mother who tragically lost her 2-year-old son. We spoke almost daily for a long time. Finally, she told me that she couldn’t see ever getting past her grief. I asked her if she had laughed yet. Embarrassed, she said she was watching a TV comedy show the night before and realized that she thought she heard a sound resembling a laugh come out of her. I told her that any laughter was the beginning of healing. I reassured her that she would laugh again and have moments of pleasure more and more in the future and that she should celebrate those moments rather than feel guilty. Life may never be “normal” in the old sense but life still had the potential to be good, perhaps even great.

From other bereaved parents who helped me, I learned that you don’t have to hold onto the grief to hold onto the love you feel for your child. That beloved child would not want your life to be blighted by his or her death any more than you would want your children to be forever sad after your death. And, in our rich Catholic tradition, we honor Jesus’ mother Mary as Our Mother of Perpetual Help, not Our Mother of Perpetual Mourning.

I now look at working toward happiness and fostering a generally cheerful outlook as a tribute to my daughters and grandson. This doesn’t mean that I am immune from being blindsided by grief and longing when I accidentally hear certain songs, see another person their age, witness another death, etc. Like probably everyone else I still have what my husband kindly refers to as my “moments” when life seems like a long, hard slog. But I continuously strive to foster an attitude of gratitude for what — and especially who — I have left. I don’t want the children’s legacy to be one where their deaths destroyed a family.

There is no set timeline for grief and bereaved parents and other relatives need to be patient with themselves and those around them. I remember the old days in medicine when grieving relatives were immediately offered a tranquilizer. I knew even then that this often just delayed the process instead of helped. There is no “good” or “bad” way of grieving. Everyone has their unique journey although it is not a sign of weakness to ask for or offer professional help when necessary.

I was surprised by the depth of grief I felt for the Sandy Hook victims and their relatives. I found it excruciating to watch the relentless TV coverage of the tragedy but I also found it hard to turn away. However, in watching the story unfold, I was struck by the fact that although I have spoken with many other bereaved parents over the last three decades, I never met a parent who said they wished their beloved child had never been born rather than to have faced the grief the parent endured. Obviously, you can never lose when you truly love and I was so glad that the Sandy Hook parents were surrounded by loving, supportive people in their community and countless other caring people throughout the country who wanted to help.

Pain is an inescapable part of the grief journey, but we may hope that we all can eventually get to the point where it is the life, not the death, of our beloved child that is the most important to us.

I Choose Not to Reject God

I’ll never forget reading about a famous and outwardly successful man who said he gave up on the idea of God when his little sister died. This gentleman wound up with a series of failed marriages and despite his millions of dollars, is bitter and unhappy.

There is no question that faith is often challenged when tragedies like the death of a child happen. But rejecting God means rejecting the greatest source of love and healing that we so desperately need at our worst times.

I eventually realized that I never did and never will have total control over my or anyone else’s life and that this is tolerable because God has a Divine Plan. I’ll never forget the wonderful Visitation nuns who taught us that life is like a tapestry that is large, beautiful, and intricate. However, on this earth we see the tapestry only from the back. We see dark colors, chaos, and loose threads that seem to go nowhere. Nothing in the tapestry appears to make sense, much less beauty. It is only when we die that God turns the tapestry around and we can finally see the amazing result. God doesn’t cause tragedies but rather brings good out of the evil we see.

It was when my Karen was born that I discovered that God is communicating with us all the time. It was then that I started noticing what I call the “miracles of grace” that God seems to send at some of our most heart-searing times. Over the years there have been some great ones: The depressed friend intent on suicide who was saved at the last moment by a smile from Karen. The young person who came back to the Church when Marie died. The many people who have volunteered to become bone marrow donors in honor of Noah and to help others like his little brother Liam.

The big miracles of grace also taught me to look for and appreciate the smaller mercies that comforted me and let me know that God is there: The woman who told me that baby Karen had done more good in her short life than most 80 year-olds. Visits from Marie’s friends who told me wonderful stories about her that I never knew before. Great friends who seemed to call at exactly the right moment when Noah was so sick.

When I was a little girl, I was often irritated by my mother’s admonitions to “offer it up for the poor souls in Purgatory” when I was hurting either physically or emotionally. It took years for me to understand that offering up my pain for such souls or any other good intention for others often acted as a kind of pain reliever and, at the same time, made my pain meaningful in a good way. I also learned that even little acts of kindness performed in memory of a loved one were a great form of honor and gratitude for those lives that are still joined to us in God’s community of love.

Today, I would ask those of you who read this to consider offering up a frustrating situation or performing some small act of kindness in honor of Noah, Karen, Marie, and the Sandy Hook victims.

Those children are now in God’s Hands. The world is still in ours and we can make it better.

Can There Really Be a “Safer” Physician-assisted Suicide?

In August, I wrote a blog “Physician-assisted Suicide and the Palliative Care Physician”  about Dr. Jessica Nutik Zitter,  a palliative care doctor in California who approved of physician-assisted suicide, would want it for herself but had still had serious some qualms about actually writing for the lethal overdose herself.

In the end, Dr. Zitter decides that assisted suicide can be rendered “safe” by being rare and practiced by specially trained medical practitioners as “just one tool in the toolbox of caring for the dying-a tool of last resort.”

Thus, Dr. Zitter, perhaps unknowingly, gives support to the Compassion and Choices goal of “normalizing” and “integrating” physician-assisted suicide into standard medical practice. Note  their own description of their activities:

“We help clients with advance directives, local service referrals and pain and symptom management. We offer information on self-determined dying when appropriate and provide emotional support through a difficult time. We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals. Compassion & Choices devotes itself to creative legal and legislative initiatives to secure comprehensive and compassionate options at the end of life.” (Emphasis added)

Now in her new article “De-Medicalizing Death”, Dr. Zitter is excited about a new University of California, Los Angeles (UCLA) Health Centers’ program where “only” 25% of patients went on to commit physician-assisted suicide after an “intake process…conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians”.

Ironically, current physician-assisted suicide laws tout the “safeguard” that “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” (Emphasis added),  But that only means evaluating a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required. Thus, it should not be surprising that only 3.8% of people using physician-assisted suicide in Oregon were even referred for psychiatric evaluation in 2016, unlike the standard of care for other suicidal people.

Also, the UCLA new intake process for physician-assisted suicide that so excites Dr. Zitter paradoxically undermines the common media depiction of a terminally ill person in unbearable pain desperate for immediate relief:

“The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.” (Emphasis added)

And

“Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer”. (Emphasis added)

And, I would add, this “game-changer” ultimately resulted in most patients NOT dying by assisted suicide.

As a former hospice and oncology nurse, this kind of listening and support is very familiar to me. We gave our patients such care along with symptom control and our patients died with real dignity with their families supported as well.

Personally, I was never even once tempted to help end any of my patients’ lives.

CONCLUSION

Dr. Zitter is like many people. The idea of controlling one’s own death or avoiding watching a loved one slowly die is very seductive. But, as Dr. Zitter has unwittingly discovered, suicide is the loneliest kind of death and very amenable to intervention.

On the other hand, the legalization and approval of physician-assisted suicide reinforces the underlying despair that leads even many healthy people to think death is the solution to their problems.

When “Losing autonomy” and “Less able to engage in activities making life enjoyable” are the top two end of life concerns of Oregon’s assisted suicide victims in 2016, we have a bigger societal problem than an alleged lack of enough lethal overdose prescriptions.

We need true caring and support, not abandonment to suicide of any kind.