Sarah’s Smiles

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ~~ Rose Fitzgerald Kennedy

There are many different words that I could and do use to describe my wife, Robin. One such word would be charismatic; people are just attracted to her. She genuinely loves people, and people love her back.  She is kind and patient, qualities that served her well during her 30 plus years as a special education teacher. She is also a bit ADHD, but she uses it to good stead, getting a lot done with her need to keep moving and to be doing something.

She has also experienced great strife and loss in her life.  She and her mother had a very “complicated” relationship. Her mother wanted a daughter who was a Jewish princess.  What she got was more from the Russian peasant side of the family, an Earth Mother. When she was 39 her beloved older brother, Ronnie, passed away after a long, lingering bout with cancer.  Her father went into dementia not too long after his son’s death and entered a nursing home.  He was to spend 15 years there, slowly losing more and more of his cognitive abilities.  The last few years of his life he recognized no one. Her son, Adam, an amazing bright man, has dysgraphia.  As could be imagined, if you cannot write, school becomes a major chore if not an outright nightmare.  With an amazing amount of support from his mother and the use of a beta version of newly developed voice dictation software, Dragon, he managed to get through high school. He went on to obtain his Bachelor’s degree in Ecology and Botany from The Evergreen State College in Olympia, Washington. He has continued to work in this field restoring land back to its natural state. His reputation in this arena is such that it has earned him the very appropriate appellation of Ozark Shaman.

However, the greatest struggle of her life has been her daughter, Sarah. Sarah was a beautiful young lady, pictures of Sarah when she was younger will remind you of Robin at the same age. You did not have to talk to Sarah long to realize that she had a sharp intellect and was a strong observer of life.  She was multi-talented with a very good singing voice, but she really excelled at art.  Robin has several pieces of her art work hanging in the house.  The word I would use to describe some of these would be powerful.  She was kind and tenderhearted.  She always wanted to reach out and help those less fortunate, human or animal.

When Sarah was nine she started to enter puberty, her parents and doctor decided the best course was to delay the onset until a more usual age. Whether this was a good decision can be debated, but the two years of treatment were traumatic for Sarah.  She was also diagnosed with ADD around this time period.  Sarah was to have a life long struggle with mental health issues especially anxiety and depression. Perhaps due to the early puberty, the treatment, the ADD or other reasons Sarah had a strong feeling that she just did not fit in. Sarah, in many ways was much too sensitive or lacked the coping mechanisms to endure the many hurts that routinely come to all of our lives.  A feeling of not fitting in did not help.

Unfortunately for Sarah and all who loved her, she stumbled into the nightmare of heroin. When Sarah was 17 a young man she was involved with introduced her to the drug.  The drug was something that she came to hate, but the sense of relief, release and escape that it provided was a siren call she would grapple with the rest of her life.  WebMD and other sources state that a person can become addicted in as quickly as one or two doses. The next 13 years were to alternate between periods of sobriety and using heroin. Robin did not keep an account book, but the struggle with mental health issues and addiction has cost her tens of thousands of dollars.  Of course, this total includes many different rehab centers, therapists and doctors.   There are many more ways you could add dollars to this tally, but the biggest cost is emotional.  How do you put a price on peace of mind?  How do you put a price on the anxiety of the phone ringing at night, and you not knowing what sort of bad news it might bring? It is an all too common story, and a story way too horrendous.

When Robin initially discovered that Sarah was using heroin, her response was to get her into a treatment program, Crossroads.  This organization is a sobriety program for young people and their families.  Sarah would spend two years working with them, and her parents would go to group meetings once a week.  When she came out of the program Sarah was in a good place and lived with three other girls from the program. She went on to work for two years as an ABA (applied behavioral analysis) Therapist for the Special School District of St. Louis. She also went back to Webster University to continue her studies in art.  About this time Sarah was witness to the difficult time of watching her parents separate and eventually divorce. As can be expected, this was a very traumatic time for her and her brother Adam.  Sarah continued to go for long periods of time drug free and was self empowered to live the best life she could. But the disease of addiction and anxiety and depression continued to plague her. The cycle continued and her family searched for help but there was little to be had. She went to several treatment facilities, but the programs were not adequate for a real recovery. There were several times when Robin helped Sarah through withdrawal on her own. These times were some that Robin remembers most because Sarah so desperately wanted to not be living this way. These times only increased the bond between the two of them.

Ultimately Sarah would not let her mother spend any more money on her.  Multiple attempts were made to get her into a rehab center that did not require money from them.  The problem is that there are just not that many out there, and the demand for a spot far exceeds availability. If you do not have insurance, there is just not money out there to treat addicts.

On top of her addiction, Sarah had mental health issues with depression and anxiety.  With the help of a psychiatrist she managed to get on Social Security Disability due to her mental health struggles.  Sarah had a subsidized apartment in the city, but her mother had encouraged her to go live with her father on The Farm two hours from St. Louis. The Farm is on 80 acres close to the Huzzah River and was the family’s second home for many years before Robin and Sarah’s father parted ways.  The thought being that this would decrease the big city temptations.  The other thought being this was a place that had lots of good memories for Sarah. After the move, Sarah actually seemed to be doing better.  She was helping her father in his storage rental business.   But then the rug was pulled out from underneath her.  Out of the blue, for reasons that no one understood, Social Security stopped her disability payments that were her only source of income.  With the help of her mother, they began an appeal, but they were not making much progress. The level of apathy in the local Social Security office is off the charts, or perhaps they are just overwhelmed in a thankless job.  Who knows, but it is a deep sadness either way.  The catch-22 of all this is that Robin and Sarah went back to­­­­ the Social Security office once a month and were told the same thing each time. The money was due to Sarah and the Social Security personnel claimed that it was their fault she was not getting it. They would say this and then do nothing about it. The real irony of the Social Security debacle is that 6 months after it no longer mattered, they wanted to finally correct their mistake and start payments up again, adding the money suspended during the  appeal process.

However, this cessation of income without valid explanation was to be the last straw. On December 30^th after coming home from the Social Security office Sarah told her mother that she was worn out and cried in her mother’s arms. Robin cried with her. The system did not have a place or a care for her. She felt more defeated than ever before. Sarah told her mother it was time to let go. She needed to find peace. She begged her mother to let her go…

Robin and I went to a New Year’s Eve party the 31^st of December 2015.  On the way home from the party Robin talked to Sarah on the speaker phone of the car.  Sarah seemed bright and cheery, telling me to drive carefully and take care of her Momma. Robin spoke with Sarah throughout January 1^st and finished off her night talking to Sarah for over two hours. January 2^nd Robin and I were running around doing errands, but Robin’s mood was not good.  She had been trying to get hold of Sarah all day without success.  That evening Robin got the phone call she had been dreading for years.  It was her ex-husband.  He had been away for a few days.  When he came home, he found Sarah dead in her bedroom with a needle nearby.  There is no way to describe the anguish of the next few days, the next few weeks. Truthfully, there is no way to describe the anguish of the next year.  The anguish of losing a child is something you never get over.

The police came, confiscated her cell phone and laptop.  They kept them for a year, but never did anything with them.  They kept promising Robin they were investigating, and finally started dodging her calls.  The cause of Sarah’s death depends on who you talk to. What she injected into her body was not heroin, but pure fentanyl.  In case you do not know fentanyl is, it is a pain killer with legitimate uses, but it is often used to cut heroin.  Sometimes it is used in place of heroin, but it is 50 to 100 times more powerful.  Because of Sarah’s history of depression and the way she had been talking the last few days of her life, Robin firmly believes her death to be suicide.  She believes Sarah knew she was injecting pure fentanyl.  Perhaps, because it is easier for me to deal with, I tend to view it as an accidental overdose.  The Coroner ruled it a homicide as someone had sold her pure fentanyl, either on purpose or carelessly.

Sarah was cremated and eventually her ashes were spread on The Farm.  Robin had a remembrance ceremony at Shaare Emeth Synagogue just a few days after her death.  The full auditorium was as much a testimony to Robin as a remembrance of Sarah. Robin is indeed well loved. One of the rabbis, with Robin’s permission, did use the occasion to talk about the elephant in the room, society’s inadequacy in dealing with mental health issues and the scourge of addiction in the community. Both of these issues cross and affect all racial, economic or religious groups.

There are a couple of other traits that you need to know about Robin. One is that she is a survivor.  The other is that she has a love for life, a joy for life that surpasses practically everyone I know. Several things happened to help her through this time.  One was that her circle of friends closed in around her and supported her daily for many months and a few continue to support her in her diminished but ongoing grief over the loss of her daughter.  Besides the full synagogue the other testimony to how much and how many people care for Robin is that Robin sat shiva for 2 days and the house was always full.

Another unquantifiable cost of mental health issues and addiction is the sense of shame and isolation that frequently goes along with them. There is a need to protect the loved one and yourself from the judgments of the others. This adds another emotional cost from feeling compelled to hide such struggles from friends and even family.  So the snowball rolls down the hill, and the people surrounding and attempting to support the one struggling begin struggling themselves.  Since what would be your normal support structures are not there the question becomes how to deal with those internal issues. Often the best answer is support groups.  It was something Robin had been doing all along as having a child with mental health issues and substance abuse issues is far from easy. These groups helped her to deal with her fears and anxieties in a protected, confidential setting.  There is also comfort in numbers and knowing that other folks are going through the same trials. These groups can help alleviate the sense of isolation and shame. It has been 5 years since Sarah’s passing and Robin still attends, though not as many or as often. Robin is a very spiritual person and my take is that she sees this as a mitzvah to support other people experiencing these crises now.

Robin is a potter working her ceramic magic in what she self describes as folk art.  She does not throw pieces on a wheel, but makes hand-crafted pieces such as ceramic flowers, welcome signs, clocks, bowls, etc. After Sarah’s death, she started making little ceramic dolls.  Cute little figurines on a cone of clay topped with a head with a very expressive face.  Frequently the dolls would have some sort of head gear.  She would then glaze them in many different and fun ways. No two dolls were ever the same.  She became absolutely obsessed with making them and they became known as Sarah’s Smiles.  She was putting her ADHD to good purpose.  It was something to keep her hands busy and her mind occupied.  I am not sure of the exact number, but she made a few hundred of them.  Truthfully, while they never took over the house, the basement was a different story. She did however sell quite a few at an art fair so we are not totally overwhelmed.

Here in St. Louis there is an annual fall retreat sponsored by the BJC Healthcare, Weavings, for mothers who have recently lost children.  The year of Sarah’s death, they invited Robin to attend.   Unfortunately on the second day of the retreat Robin began to exhibit symptoms that alarmed those in charge.  They were afraid she might be having a heart attack and called an ambulance.  Fortunately, it was not a heart attack, but she did miss out on the rest of the retreat.  However, Robin being who she is, had made friends with a couple of the organizers and stayed in touch with them.  She has since volunteered at a few of the retreats.  The other thing that she did for subsequent retreats was to donate a few Sarah’s Smiles dolls to give to some of the mothers attending.

Sarah had a dear friend, a young man, with whom she gone through the Crossroads treatment program.  He had stayed clean for several years, was working and had gone back to school and was doing well there. He was working towards a degree in programming/computers.  Robin became friendly with the young man as well as a little with his mother.  Time rocks along and it is 3 years after Sarah’s death, and Robin hears through the grapevine that the young man had relapsed and died of an overdose.  After hearing this, Robin reached out to the mother via telephone.  Due to their common history and common grief she was very open with Robin.  She told Robin of how she had been invited to and gone to the Weavings retreat.  She then begin to describe this precious little ceramic doll that she had gotten there, little knowing that it was a doll that Robin had made. You just never know what will happen when you put goodness out into the world, but it certainly came full circle this time.

In my mind this is a story about a mother’s love for her daughter. It is about a mother doing all she can to support her child, to love her unconditionally and to bring her child back from the light.  It is about a child loving her mother. It is about a child trying to stay in a world she did not understand, that she did not feel she fit in, and a world that in many ways marginalized her. Sadly, her need to not stay won out in the end.

The saying is it takes a village to raise a child.  It also takes a village to deal with issues such as mental illness and addiction.  Unfortunately the reality in the United States and much of the world is that there is hardly any village to help people such as Robin and Sarah. We are a puritanical society viewing mental health issues and addiction as character flaws and as such the individual should just pull themselves up by their own bootstraps. The reality is that they are medical issues that need extended systems and time to resolve. They could be dealt with if we were willing to put our resources and hearts there.  Perhaps the following quote from Coretta Scott King sums it up best:

“The greatness of a community is most accurately measured by the compassionate actions of its members.”

Perhaps in some century we will start being compassionate to those of us suffering from mental health issues and addiction. Maybe.

Keep well.January 2, 2021 was the 5th anniversary of Sarah’s passing.  I started out to write a shorter story about the Sarah’s Smile doll completing the circle as commemoration for Robin.  The story morphed into something much larger.

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