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.

Do Pro-Lifers Really Believe That “Life Begins at Conception and Ends at Birth”?

meeting Kaylee

One of the most frequently repeated myths in the abortion debate is that pro-lifers really don’t care about life. Some abortion supporters even maintain that pro-lifers believe “life begins at conception and ends at birth”   and do nothing for women and babies after birth.

The picture above is of me holding my newest granddaughter Kaylee Marie for the first time on May 17, 2017. Of course, we think she is gorgeous and are thrilled that she is a healthy 7 lb. 8 oz.

Some babies are not born so fortunate. Kaylee’s late Aunt Karen was born in 1985 with a severe heart defect as well as Down Syndrome and faced medical discrimination regarding heart surgery. The ones who stepped up to help were not the so-called “pro-choice” people but rather people who were pro-life.

It was after Karen that I actively joined the pro-life movement and learned that pro-lifers not only helped women and babies in crisis pregnancies but were also active in helping people of all ages and conditions as an antidote to the culture of death.

These wonderful people inspired me to get into personally helping families caring for babies with disabilities, working with people who had severe brain injuries and volunteering with people who had terminal illnesses, dementia or suicidal ideation.

And now, of course, I am also helping my daughter and her husband to get some sleep and adjust to the awesome responsibility and joy of their first child, baby Kaylee.

CONCLUSION

Kaylee’s mom was my next child after Karen. Foregoing medically unnecessary prenatal testing, I happily carried my daughter Joy with the certain knowledge that every child is truly a gift from God and that you can never lose when you love.

Abortion of any baby is ultimately a failure of  that love and reality. We in the pro-life movement are committed to promoting the best for all babies-even the planned and dearly wanted ones like Kaylee Marie-as well as their moms.

This is because pro-life is really an attitude of caring and helping, not political ideology.

“13 Reasons Why”and Why Not

Today, it is hard to keep up with the constant stream of information coming not only from TV and movies but also from the social network. But to understand and hopefully to protect and help our children and others in today’s culture, it is important to keep up with current media and trends as much as possible.

This is why, after reading articles like “13 Reminders About Netflix’s ‘Thirteen Reasons Why’” about a popular Netflix series featuring a high school girl named Hannah who gruesomely kills herself and leaves 13 tapes for the people she blames for her suicide, I decided to watch this often acclaimed  and controversial TV series myself.

After watching several episodes, I recognized some of the factors that made “Pretty in Pink” and “The Breakfast Club” so popular when my children were teenagers. The characters are attractive and bright high school students who wrestle with problems of self-esteem, setbacks, hormones and popularity.  In the end, most of the characters in those older movies were happier and/or wiser.

But the story arc and characters in “13 Reasons Why” are much darker. So far in the episodes I have watched, these teenagers are apathetic about school, seem to have no sense of humor and they dislike or barely tolerate their parents. Their overwhelming self-absorption with real or perceived offenses often leads them to be thoughtlessly cruel even to their friends. The adults in the series fare little better as they struggle with their own anger, sadness and guilt in trying to understand the tragedy.

The main character Hannah sounds almost triumphant in the tapes while chronicling the deficiencies in the people she holds responsible for her suicide. The people hearing the tapes are understandably devastated but revenge seems to be Hannah’s goal.

Even worse, the series’ depiction of Hannah’s descent to suicide, making the tapes and the reactions of her classmates tends to sensationalize suicide with little to no insight about prevention and treatment. The big lesson seems to be that bullying and sexual assault can be life-threatening to vulnerable teens.

Because this deliberately shocking series is so accessible to young people and teen suicides are rising,  many schools are now concerned about this series as are mental health experts  who recognize the phenomenon of suicide contagion.

In response to complaints and concerns from as far away as Canada and New Zealand, Netflix has now issued the following statement:

 There has been a tremendous amount of discussion about our series 13 Reasons Why. While many of our members find the show to be a valuable driver for starting important conversation with their families, we have also heard concern from those who feel the series should carry additional advisories. Currently the episodes that carry graphic content are identified as such and the series overall carries a TV-MA rating. Moving forward, we will add an additional viewer warning card before the first episode as an extra precaution for those about to start the series and have also strengthened the messaging and resource language in the existing cards for episodes that contain graphic subject matter, including the URL 13ReasonsWhy.info  — a global resource center that provides information about professional organizations that support help around the serious matters addressed in the show.

As a nurse who has worked professionally and personally with suicidal people as well as the mother of a daughter who died by suicide, I am glad Netflix is acknowledging at least some of the problems with the series. However, this series and the plight of our young people growing up in an increasingly secularized, materialistic and divided world that rejects God demands more.

We need to give our young people hope and support as they navigate the often rocky road to adulthood. And we also need to show them that the real heroes are those people whose dedication, moral virtues, hard work, selflessness and idealism inspire all of us to make a better world where no one will want to watch the so-called “entertainment” of a “13 Reasons Why”.

 

Reports of My Death are Greatly Exaggerated-Again

In 2009, I began to get emails and calls from people who had read reports about the death of Nancy Valko from physician-assisted suicide in Oregon. Even our ages were almost the same.

After assuring people that I was not only very much alive but just as committed to opposing assisted suicide, I did a google search and found the obituary and information about another Nancy Valko who had planned and publicized a kind of party around her suicide.

Now almost 8 years later, I received an email from a friend who just read an article about the assisted suicide of Nancy Valko. I thought she had just run across an old article but she sent me the article “I will be dancing once again-Nancy Valko’s controversial final act brought her life, but not her legacy, to an end” from the current April 2017 issue of Woman’s Day, a well-known and long-running women’s magazine often displayed at grocery store checkout lines.

The article painted quite a  picture that was”carefully planned” by this Nancy : sunlight streaming through fir trees, bouquets of spring flowers, a manicured backyard and a friend playing classical music on a harp.

She was surrounded by her children and her former husband when she swallowed the lethal mixture. According to the article, her family continued to talk to her for the last two hours of her life telling her they loved her and praising her as an amazing mom.

The article notes that this Nancy was following a healthy lifestyle before she started have mobility problems and was eventually diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. In November 2008, she decided to move to Oregon to use its physician-assisted suicide law. The article states that she wanted to be around for her kids but she “knew that dying from ALS could be brutal-in late stages, sufferers typically remain mentally alert but lose the ability to move, swallow or breathe on their own.” She would eventually have to rely on family, friends or others.

By March when this Nancy started having more trouble talking and thus might not be able to swallow the drugs, she saw a doctor who determined that she was within 6 months of dying and able to swallow the lethal dose by herself. The article notes that “nearly everyone” in Nancy’s circle stood behind her decision to die and friends and family in other states “sent bubbles toward the sky” on April 19, 2009.

After Nancy’s assisted suicide, her older sister Marnie “was inspired” to fight for an assisted suicide law in Vermont that was signed into law in 2013.

The article ends with:

“Nancy wanted her life to matter,” says Marnie. “Because this legislation passed, it still does.”

A short section “The Case Against ‘Death with Dignity'” cites the American Medical Association’s opposition against assisted suicide but says that “it will revisit the issue”. The section also mentions that “some religions” like Catholicism and disability groups like Not Dead Yet also oppose assisted suicide but cite a recent Gallup poll showing that only around 40% of Americans now feel assisted suicide is “morally wrong”.

CONCLUSION

Why did Woman’s Day tell this story again after 8 years? It seems like a desperate attempt to show an assisted suicide as a happy party with friends and family celebrating while a loved one takes her life before, as the article states, there is a “loss of autonomy and dignity”.

I see this Nancy’s death as a sad tragedy of despair.

As a former hospice nurse myself, I felt privileged to be able to help people with life-threatening illnesses and their families achieve a peaceful and comfortable natural death. The traditional hospice philosophy of neither hastening nor prolonging dying allows a natural and truly dignified death that benefits both the patient and his or her family. Personally, these patients and their families inspired me with their devotion and love for each other. People should never feel that they are a burden to themselves, their families or to society.

Physician-assisted suicide is never the answer and I would never inflict it on my family and friends.

Dr. Anne Bannon, Hero For Life

anne-reading

Dr. Anne Bannon “reading” her old pro-life insert. June 2016.

My friend and hero, Dr. Anne Bannon, died at the age of 89 on January 30, 2017.

Dr. Anne Bannon became a pediatrician decades ago at a time when women were usually discouraged from entering the almost exclusively men’s profession of medicine. But feisty and stubborn, Dr. Anne persevered to become a great doctor and the Chief of Pediatrics at City Hospital in St. Louis.

When the 1973 Roe v. Wade Supreme Court decision to legalize abortion came down, Dr. Anne was surprised and horrified. She went on to found Doctors for Life here in St. Louis.

One of her biggest projects was yearly producing and paying for a multi-page insert into the St. Louis Post-Dispatch (see picture), a newspaper that strongly supports legalized abortion and now assisted suicide.

Dr. Anne’s insert was full of facts but perhaps most importantly, it also listed the names of doctors against abortion. Every year, she would personally call every doctor she could and ask them if they opposed abortion and would agree to be listed in the insert. Despite the effort involved, Anne refused any help in contacting these doctors.

Every year, the list of doctors was long and it took courage for these doctors to agree to be listed. My own obstetrician-gynecologist told me that he received calls from other doctors who told him that they would never refer another patient to him if he continued to be listed in the insert. My doctor refused to be intimidated and he told me that publicly standing up for life was more important than possibly hurting his practice. In the end, his practice wound up even stronger.

DR. ANNE AND I

I was introduced to Dr. Anne in 1982 when my daughter Karen was born with Down Syndrome and a severe heart defect. I told her about several doctors who tried to undermine our decision to have our daughter medically treated exactly the same as any other child with a heart condition.

Of course, Dr. Anne was supportive and in 1983, even introduced me to Dr. C. Everett Koop, then Surgeon General under President Ronald Reagan, so that I could tell him my story and advocate for a national hotline that parents of newborns with any disability  could call to find resources to help their children.

Dr. Anne recognized that legalized abortion was leading to increasing acceptance of deliberate death decisions for born people, especially the disabled. Never married with no family nearby, she asked me to be her durable power of attorney for health care because she wanted truly ethical health care in case she became unable to speak for herself.

Several years ago, Dr. Anne developed dementia, probably Alzheimer’s, and was in a nursing home on Medicaid. By the time she died, she was in the late stages and unable to walk or even speak clearly  most of the time. But she was excited and delighted when we, her friends, visited her in the nursing home even when she could not remember our names. We were her St. Louis family and we loved her.

Dr. Anne fractured her hip last Saturday night and needed surgery. She did well in surgery but suddenly became critically ill at the end of the surgery . But, to the doctors’ surprise and just when they were ready to give up, Anne suddenly got better. She was taken to intensive care on a ventilator and unconscious but stable. Anne’s famous fighting Irish spirit came out one last time and we were proud of her.

Dr. Anne was in critical but stable condition and apparently in a coma when we called a wonderful local priest to give her the Catholic Sacrament of the Anointing of the Sick, previously known as Last Rites or Extreme Unction. According to one friend and the doctor attending, her face seemed to soften during the sacrament and she even blinked and put her tongue out. That in itself was amazing.

After the sacrament, her vital signs immediately started to drop and despite an increase in her medications, Dr. Anne died peacefully and in no distress a few hours later. We knew she wanted the sacrament and I believe that she hung on until she received it.

As a former hospice nurse, I have often seen this kind of hanging on by dying patients until an important matter was resolved.

So, to the end, Dr. Anne was still teaching about the value of all life.

Rest in peace, Dr. Anne Bannon!

Parent Power

During the last few months, I have been writing about efforts by some legislators in Missouri and now Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility polices in hospitals that led to the death of Simon Crosier, a baby with Trisomy 18. I even wrote my own testimony in support of the bill.

But now in a stunning development, Dr. John Lantos wrote an opinion editorial in the Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment:

Thirty years ago, pediatric residents were taught that trisomy 13 and 18 were lethal congenital anomalies. Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy.

But with social media, this changed.  Parents share stories and videos, showing their happy 4 and 5 year old children with these conditions. Survival, it turns out, is not a rare as once thought.”

This survival is even more impressive in light of a related JAMA article titled “Outcomes of Surgical Interventions in Children with Trisomies 13 and 18”   which stated that although “The median age of survival was 13 and 9 days, respectively, in children with trisomies 13 and 18”:

Among children with trisomies 13 and 18 who lived to 6 months, survival at age 10 years was 51% and 60%, respectively.

Note that what is changing the former medical perception of “incompatible with life” is not any new medical advance but rather loving parents who refused to accept the predicted death sentences for their babies, insisted on treatment and then used Facebook and other social and regular media to show off their children’s real lives. I call this Parent Power and it is based on love.

That power may help bills like Simon’s Law to finally pass.

DOWN SYNDROME (Trisomy 21)  AND PARENT POWER

I personally  learned about parent power when my daughter Karen was born in 1982 with Down Syndrome and a severe heart defect. 20+ years before Karen’s birth,  children with Down Syndrome were routinely institutionalized as accepted medical practice. But by the time Karen was born, almost all newborns with Down Syndrome went home with their parents and eligible early childhood programs.

What caused this dramatic change?

Again, it was primarily parent power.

Parents like Kay and Marty McGee not only ignored the standard medical advice to institutionalize their daughter but also fought for support and help for their daughter and others like her. They eventually founded the National Association for Down Syndrome in 1960 (http://www.nads.org/about-us/history-of-nads/ )

By working with other parents and reaching out to willing educational, legal and medical professionals, they helped change medical attitudes, the educational system and public acceptance of people with Down Syndrome who are now achieving goals once thought impossible.

Although it continues to be a long-term effort to ensure non-discriminatory medical treatment for people with Down Syndrome or other disabilities, people with Down Syndrome who were once predicted to die at an early age now have a life expectancy of 60 years and are achieving goals once thought impossible.

THE FIGHT  IS STILL FAR FROM OVER

Unfortunately and on the heels of the welcome editorial comment on babies with Trisomy 13 and 18, comes the news about the tragic circumstances surrounding the death of little Israel Stinson.

Two-year old Israel died after a judge suddenly and unexpectedly rescinded a court order that prevented a California hospital from removing the ventilator from little Israel before his parents could get an opinion from another neurologist after conflicting medical opinions about whether or not Israel was brain dead.

In this case, parent power was overturned by a single judge after the family thought that Israel was protected by a court order.

Not only is this personally tragic for Israel and his parents but this development also serves to devastate the crucial trust needed in our medical and legal systems.

 

 

 

Ethics and Alzheimer’s –Part One: Why I Can’t “Walk to End Alzheimer’s”

In the 1980s, my mother was diagnosed with Alzheimer’s disease, a progressive mental deterioration due to generalized degeneration of the brain.  It was quite a shock to the family and at that time, there was an unfortunate stigma attached to Alzheimer’s that led  some family members to insist that mom’s illness be kept secret.

At one point, my mother even wound up in a psychiatric unit before we found a good geriatrician, a doctor who specialized in care for older people as well as dementia. My mother eventually died of cancer while in the later stages of Alzheimer’s but she was able to be cared for at home until she died in her sleep the day she went to a nursing home.

After my mother’s death, I was glad to later learn about groups like the Alzheimer’s Association   and the development of community resources to help people with Alzheimer’s and their families. It would have been helpful with my mother.

Since it started in 1980, the Alzheimer’s Association is now international and the largest nonprofit funder of Alzheimer’s research . The organization’s public profile has exploded through media coverage of celebrity supporters and fundraising efforts like the “Walk to End Alzheimer’s”,  the world’s largest event to raise awareness and funds for Alzheimer’s disease care, support and research.

However, I cannot walk for Alzheimer’s because of its support of embryonic stem cell research as well as concerns about the organization’s position statements on issues like medical treatment and tube feedings. I will be addressing those issues in future blogs.

I do not intend to just single out this organization or portray it as “bad”.

I have been a volunteer for several organizations whose causes have directly touched family members and friends. However,  I do examine each organization to determine how and where its fundraising is used before I volunteer to help.

ALZHEIMER’S ASSOCIATION STATEMENT “RESEARCH USING HUMAN STEM CELLS

This 2011 position statement on their website states:

 “The Alzheimer’s Association policy supports and encourages any legitimate scientific avenue that offers the potential to advance this goal, including human embryonic stem cell research; and, we oppose  any restriction or limitation on research, provided that appropriate scientific review, and ethical and oversight guidelines and compliance are in place.” (Emphasis added)

Raising funds for research resulting in a cure of any disease is laudable, but without ethical boundaries, such research can cross the line. Embryonic stem cell research necessarily involves the destruction of human lives in their earliest stages and should not be allowed on even just humanitarian grounds, much less funded.

Ironically, embryonic stem cells have been a great disappointment in human research and even very harmful in some cases while ethical, non-embryonic stem cells are achieving great breakthroughs, for example in treating  cataracts of the eye and even paralysis.

As a nurse, I have known for decades  about  the ethically obtained stem cells from bone  marrow donors  that now every year save  the lives of  tens of thousands of people with cancer and other diseases.

In fact, my own grandson’s life was saved 3 years ago because of a bone marrow transplant!

So while I appreciate the Alzheimer’s Association’s  effort to help people with Alzheimer’s and their families find practical resources for help and support , I cannot walk to raise research money for a group that not only supports embryonic stem cell research but also opposes any restrictions.

A Surprise Wedding Present

As most of you know, my daughter Marie died by suicide in 2009. I believe in an all merciful God who loves my daughter even more than I ever could. I trust in Him and I know that my Marie is with Him.

However, I knew that our whole family and especially Marie’s little sister Joy would especially miss her when Joy was planning her wedding this year.

I don’t usually pray for something personal except for help with more wisdom, patience, etc. but  Joy and Marie were especially close and Joy had been Marie’s maid of honor in 2005. The two of them even lived together for the last few months of Marie’s life.

When Joy was younger, the three of us would often talk about Joy’s possible future wedding  and Marie would tease Joy about probably becoming a” bridezilla”. Marie promised that she would personally keep her little sister in line if that happened.

So I knew that there could be a shadow over Joy’s happiness at her wedding and I prayed for a sign that Marie was at peace.

However, I was totally stunned when, the week before Joy’s wedding, a package came from Kentucky with a carefully wrapped, thirty year old letter inside. The package was from  Marie’s older but then close friend Stephanie who had moved away in 1983.

Stephanie wrote that she just happened to find a letter Marie had written to her at age 7 and had to send it to me. The letter was even typewritten! Who knew that Marie could figure out a typewriter?

The letter contained a lot of spelling mistakes but it was hilarious to read Marie’s description of her life at age 7. Marie even wrote down each family member’s age which told us how old she was at the time. (See photo: Marie’s letter at age 7 to Stephanie)

Marie wrote about how her older brother was nice and mean sometimes. Marie also wrote about her little sister Joy and how she ate a “dede” bug. All I could do was smile.

What a wonderful wedding present for Joy and all of us!  At the wedding, we all felt that Marie was there and celebrating with us.

As my late mother often used to say, “God is good!”

Here is the proof:

Joy and Chris wedding pic favorite

Joy and Chris May 21, 2016

 

Canada and Assisted Suicide for Psychiatric Patients

My first husband and the father of my children was a caring man and dedicated psychiatrist who himself eventually became disabled by mental illness. Early in our marriage, I helped him write his medical journal articles and we planned to eventually include me in his psychiatric practice to work with the families of his patients. As a nurse, I always believed that families were ideally the best support system for patients and our goal was to improve the care and outcomes of people with mental illness.

Tragically, my husband’s mental illness worsened despite intensive treatment. He ultimately abandoned our family and lived the next 26 years in and out of hospitals and assisted living places before he died of natural causes in 2014.

Thus I have a unique perspective on the legal, medical and personal aspects of mental illness.

At one point, a family member sympathetically suggested that it might be better for everyone if he committed suicide. I was horrified. You don’t give up on sick people and I told this person that I would do anything in my power to stop him if he tried to kill himself. Suicide would be the ultimate tragedy.

Canada and Its New Assisted Suicide Law

In February 2015, the Canadian Supreme Court ruled unanimously in the Carter v. Canada case to legalize physician-assisted suicide for competent, consenting adults whose suffering is due to a “grievous and irremediable” medical condition and gave Parliament a year to develop a regulatory regime along these “parameters.”

The Parliamentary Special Joint Committee on Physician-Assisted “Dying” suggested that the “grievous and irremediable” criterion includes nonterminal medical conditions, including psychiatric disorders.

The federal government’s Bill C-14, on the other hand, defined “grievous and irremediable” as an “advanced state of irreversible decline in capabilities” in a person for whom “natural death has become reasonably foreseeable.”  The Senate ultimately passed the bill but the controversy about assisted suicide for psychiatric patients is still raging.

In a June 21, 2016 commentary in the Canadian Medical Association Journal “Should assisted dying for psychiatric disorders be legalized in Canada?”, authors Scott Y.H. Kim MD PhD and Trudo Lemmens LLM DCL warn against this.

As they note:

In Belgium and the Netherlands, medical assistance in dying has been provided to people with chronic schizophrenia, posttraumatic stress disorder, severe eating disorders, autism, personality disorders and even prolonged grief.

The authors conclude that:

Because of the necessarily broad criteria used to regulate assisted dying (in Canada), legalizing the practice for psychiatric conditions will likely place already vulnerable patients at risk of premature death.

However, others like Belgium psychiatrist Joris Vandenberghe, MD, PhD disagree:

“I think the current approach taken by the Canadian government is a bit too strict because it doesn’t fully recognize the enormous impact that psychiatric disorders can have on patients,” Dr Vandenberghe told Medscape Medical News. (Emphasis added)

However, even Dr. Vandenberghe recognizes the problems while still calling for more “safeguards”:

“I am generally not opposed to our euthanasia legislation and agree that patients suffering from psychiatric conditions should not be excluded from our legislation. However, extra precautions are urgently needed.

“I’m not happy with the way things work here [in Belgium]. Sometimes euthanasia is used with insufficient reluctance on the part of the healthcare professionals involved. We’re missing opportunities for treatment, and we need more safeguards,” said Dr. Vandenberghe.

So for me, the answer lies in a thorough evaluation of a patient prior to euthanasia. There really is no time pressure in psychiatric disorders, and if you have a multidisciplinary committee involved in the evaluation, you can take care of lot of the concerns we now have about euthanasia in the setting of psychiatric illness.”

The reality is that very few psychological or psychiatric referrals are even now made for anyone considering assisted suicide either in the US or in Europe. The answer is not more “safeguards” for assisted suicide practitioners to disregard while enjoying virtual legal immunity but rather an emphatic “No!” from the public as well the legal and medical systems. We also need an unbiased media to publicly expose the real facts about legalized medical killing.

 Conclusion

I have seen both the legal and medical systems often fail people with mental illness like my ex-husband who desperately need treatment and safety.

On the medical side, I begged for direction from my ex-husband’s doctors about what I could do to help him but I was told that there was nothing I could do or not do since the doctors were seeing him regularly. I was not allowed to even know his diagnosis without his permission.

On the legal side, I had problems getting supervised visitation even after a hostage situation.  Due to almost constant harassment, I had multiple orders of protection violated without adequate legal response. And despite being on mental illness disability, my ex-husband was allowed to file and lose several frivolous lawsuits-until he ran out of money.

It was a heartbreaking situation.

However, I always hoped that my ex-husband would improve so that he could at least have a better relationship with his children. Even though that did not happen, I am grateful that he did not die by suicide, assisted or otherwise.

Unfortunately, my family’s experience is not unique among families with a member who is mentally ill.

If our medical and legal systems are already often failing people with mental illness and their families, how can we allow them the power to “assist” our loved ones’ suicide?

That would be the ultimate betrayal of an already stigmatized and vulnerable group of people.

My Most Memorable Mother’s Day

Mother’s Day has always been special to me since my children were born although I always thought I should be thanking my children for making me a mom instead of them thanking me.

However, Mother’s Day 1998 was my most memorable for another reason.

My oldest daughter Marie had just started college and dating the first boy she said she loved when she found out she was pregnant. The young man offered to marry her but she thought about some serious problems they both had and felt she had to refuse.

Over the next several months, Marie was torn between keeping her baby and choosing adoption. When she considered the most important question of what would be best for the baby, she finally decided on open adoption. It was not an easy decision and we were both heartbroken by the realization that Marie would not be raising the baby herself.

Unfortunately, due to the unwed pregnancy, there was almost no support from extended family members. In addition, most of Marie’s friends supported her rejection of abortion but not her decision for adoption. However, I was proud and awed by Marie’s heroic determination to give her baby the best life possible.

It was a difficult time but then on Mother’s Day that year, a card came in the mail from a priest friend of mine that brought a big ray of sunshine and truth to the situation. 

It was a beautiful Mother’s Day card for Marie!

Marie and I both smiled and cried because it was such a wonderful acknowledgement of Marie’s eternal motherhood as well as the gift of life. I can never thank that priest enough for his timely encouragement.

Four months later, Marie’s daughter was born and released to a wonderful couple who sent pictures every month.

Later on, when Marie’s daughter grew older, she called Marie every Mother’s Day and because of the generosity of her parents, she saw Marie often until Marie’s untimely death in 2009.

This thoughtful priest’s kindness in 1998 should remind us all that Mother’s Day should always be special whatever the circumstances and whether or not our children are in our arms or just in our hearts.