On December 5th, at a live storytelling event hosted by Health Story Collaborative and WBUR CitySpace, we heard stories from three courageous women parenting in the face of life-threatening illness. You can watch the video of the event here. 

Lila, 45, is a psychotherapist by training and the mother of two daughters, ages 8 and 11. She has stage 4 lung cancer and each day she is practicing the difference between “choosing to live rather than trying not to die.”

Caroline, 35, is a writer and the mother of two sons, ages 4 and 7. She is living with glioblastoma—the most aggressive form of brain cancer—and was given a life expectancy of one year when she was diagnosed in 2017. She used to only write cookbooks but just published a children’s book with her sons in mind. Her message: “Whether or not Mommy’s body survives, my love is permanent and will shape them forever.”

Betsy, 42, a chemistry professor, lost her husband Chris to glioblastoma - the same cancer that Caroline has - in January 2019. She has not only been grieving his loss, but forging ahead as a now single parent 

What questions have they been grappling with? How do they care for themselves and their children? What lessons have they learned?  Their wisdom transcends illness and parenting and is relevant to all of us as human beings.  

2018 was starting to become a difficult year.  I was 40 years old and preparing to be a single mother of four children.  I had been divorced for 5 years from the father of my oldest three children - Corbin, Grace, and Cohen - and my relationship with Steve, the father of my youngest child, Grayson, was ending.  The 4th of July had snuck up on me that year with everything going on and falling on a Wednesday in the middle of the week.  Normally I would have a party at home with friends and family but with the stress of paying bills on my own I agreed to a double shift instead.  Rather than everyone being together, the children all made plans with friends.  My oldest child, Corbin, wanted to float down the river on tubes with some friends.  Even though he was already 16, I was still a little hesitant about letting him go. Corbin was a good kid.  He worked as many hours as he could so he had a truck to drive, did well in school, was never in trouble and really had taken on the man of the house role helping me with everything he was asked. He was a mature and responsible child but teenage boys will be teenage boys regardless.  I feel like I’ve always been a little over protective and as a parent you struggle with the balance between not wanting to keep them in a bubble and not giving too much freedom.  Reluctantly, I agreed.

Before I left for work I wanted to verify the plans with Corbin one last time.  Corbin was in the bathroom when I came downstairs.  He had just gotten out of the shower so he was speaking to me through the door. I wanted to see him, and of course I wanted to give him a hug goodbye, but he argued a little and told me he would call me with his plans. I was running late, so we said goodbye through the door.

That day at work, my first and only customer was a man I hadn't seen in years.  His son and Corbin used to go to school together.  We started talking about how scary it is when kids grow up, get their licenses, and go out on their own – celebrating holidays with friends rather than family.  He started telling me a story about how his son had just gotten into a car accident on the highway.  Luckily no one involved, including his son, was injured.  Before he could finish the story, I got a text message from Steve, Grayson’s father, “It’s an emergency!” it said. He was out of town with my two-year-old son that day and all I could think was that something must have happened with my child.  I interrupted my customer and excused myself to make a phone call. 

It wasn't my son, it was my nephew.  An emergency location-tracking app sent a notification to my sister-in-law that my nephew, Tanna, had been in an accident and was trapped in the vehicle.  My sister-in-law couldn't get a hold of me so they called Steve to find me.  They knew I was the closest person to the accident.  I immediately asked where and if he was okay before realizing that Corbin was supposed to be with him. But Corbin hadn't called me yet to tell me he was leaving so Corbin couldn't be with him, I tried to tell myself. 

The short drive down that road felt like it took an hour.  It was like watching a horror movie when you hear the terrifying music and you just know something awful is about to happen.  I didn't know what I was going to see.  I came around the corner to see several flashing lights. What was once a tar road was now covered in so much dirt it felt like a different road.  There were branches and large pieces of wood everywhere.  I drove as close as I could, then got out of my car and started sprinting towards the wreck until a police officer stopped me.  I was blank, - none of this felt real, like this isn't my life, this can't be happening.  I could barely speak while looking at a white convertible, with a dark interior, on its side up against a tree.  But I only saw one car and none of Corbin’s friends had a white convertible.  I was confused.  I looked at the officer and said, “I think my nephew was in this accident.”  He asked his name and verified that he was.  It took all I had in me to ask him if Corbin was also in the car.  Yes, he confirmed.

There had been 4 boys in the car and Corbin’s injuries were the most severe, he told me.    “What do you mean most severe, what kind of injuries?” I asked.  “He was alive when he left in the ambulance,” is all he told me. Not comforting words to a mother seeking answers.  I ran back to my car and raced to the hospital.  I think I made 100 frantic phone calls on the way. I called my daughter Grace to tell her Corbin was in the accident and ask who drove a white convertible with red stickers.  She said it was his friend, Tyler.  They weren’t driving a convertible – the roof had been removed to get the boys out.  The car had a light interior, not dark, but the seats were now covered in blood. 

When I arrived at the hospital my mom and sister in law were standing in the ER trying to get information, and more and more friends and family kept showing up. After what felt like an hour, a nurse walked in and asked which one of us was Corbin’s mother and I stood up.  She said, “Come with me.”  As we started to walk down the hallway she wrapped her arms around me and braced me like I was going to fall.  She said nothing. She just held me up. Then, all of a sudden, there he was.  Corbin was on a stretcher - naked and lifeless - with 20 people around him rushing in and out of the large room.  He was covered in blood and hooked up to all kind of machines.  The nurse pulled up a chair and told me to sit. My brother had come with us and was standing behind me rubbing my shoulders trying to reassure me that Corbin was going to be ok, he was going to pull through this.  It felt like standing still in the middle of a freeway while everything flies past you.  No one told me what was going on, no one explained his injuries or what they were doing to him.  I had no idea why they had brought me down to see this and before I knew it, the same nurse grabbed me and walked me back to the waiting room.  I had no information to report except the horror I had seen. I felt helpless.

Eventually a doctor rushed into the room and told us Corbin had suffered a severe head injury and that they might need to remove part of his skull to let his brain swell. He had internal bleeding and punctured lungs among many other injuries, and they were rushing him into surgery.  I signed the consent and asked what his chances were.  She wouldn't give a straight answer.  She just reiterated how severe his injuries were and ran out the door.

I just kept telling myself “not Corbin, not my child.” I felt like I was trying to will him out of this, and I wasn't going to stop.

A few hours had gone by at this point and about 30 friends and family had shown up, including Corbin’s cousin Paul.  Paul had worked in the medical field for years.  He had been a 911 operator as well as a member of a medical transport team in Boston for 9 years.  He asked me what I knew and if I felt like I had all of the information I needed.  Of course I didn't. I felt lost. He brought me back down to the ER and asked the doctor, who had worked on Corbin, if we could speak to him.  He agreed and the three of us sat down.  Paul asked all kinds of medical questions and I just remember being blank.  I just wanted to know if my son was going to live.  At the end of the conversation Paul asked “if Corbin survives surgery do you think he should be transported to a level one trauma center?”  The doctor said no, he believed their team could handle it.  We thanked him and went back upstairs.  Paul explained the difference in hospitals to me on the way upstairs and how a level one trauma center deals with these kinds of severe traumas every day.  Paul believed that’s where Corbin should go, should he make it through surgery.  I trusted him and agreed.

He survived the surgery—a huge victory but then the surgeon and a neurologist came to talk to us.  Corbin had no brain activity, the neurologist said, and he wasn't going to survive. We needed to prepare to say good bye.  “WAIT WHAT???!!!” Everyone started sobbing or screaming.  I was just thinking “NO! NO! He’s alive, I’ll take him anyway I can get him.”  I felt like they were giving up.  I refused to start grieving.  Two of my other children, Grace and Cohen, came over and were on my lap crying.  I was trying to console them by hugging them but I couldn't speak.  There were no words.  I felt very robotic.  My mother was loudly sobbing but growing increasingly more concerned with my lack of reaction.  I heard her tell the Doctor she needed to give me something because I was in shock. Corbin’s dad Jeff, who had just arrived, ran through the hall screaming “not my boy!”  Aunts, uncles, cousins, and friends were all in groups hugging each other and crying, but they all keep looking over at me. The surgeon came over and knelt beside me, she started rubbing my arm and explaining how bad his head injury was.  I just looked at her and said “but he’s alive?” She said “yes but….” I interrupted, “then I want him transferred to Boston Children’s Hospital and I want to see him.”  She said “well I don't know if they'll take him, he might not be stable enough.”  I insisted.  She agreed to try and walked away. I knew she took me seriously.  I have a laid-back personality for the most part until we’re dealing with my children - then a whole other protective, ‘don't stand in my way,’ side comes out.

They let Corbin’s dad and I in to see him.  Corbin was so broken, barely recognizable, but I felt comfort being by his side, feeling his warm hand and watching his chest slowly move up and down, even if a machine was making it happen.  He had multiple facial and spinal fractures, several skull fractures with one even pinching off a main artery to his brain, two punctured lungs, torn bowels, two broken shoulder blades, a collar bone broken in two different spots, internal bleeding, brain bleeds, and many more injuries. Within an hour, Corbin was on a helicopter to Boston.  Steve and I stood in the ER as we watched them take off with Corbin.  Another helpless feeling.  Protecting him felt out of my control when I couldn't be near him.  

Corbin went through a lot in that first 24 hours.  Concord Hospital had removed his spleen, repaired a torn bowel, placed a monitor in his skull and left an open incision in his abdomen from his pelvis to his ribs.  Once in Boston he was rushed into a second surgery and had a second monitor with a drain placed in his skull, internal bleeding repaired and more than half of his blood transfused. 

We spent the next 50 nights, with the majority of them in the ICU, at Boston Children’s Hospital.  At first our goal was for him to survive the next 24 hours… and then the next 48 hours… and then the next 72 hours… and even when they finally believed he would survive, they told me they didn't believe he would regain much brain function. “Not Corbin, Not my child,” I kept saying.  I was given so many negative predictions that eventually I just stopped listening.  I couldn't help but believe that Corbin was still in that body.  Corbin’s sister and I spent every night in that room with him.  We played his favorite music, we read him sports news, we told him stories, we brought familiar things from home like is pillowcase and favorite blanket so that he might recognize the smell.

The first day he opened his eye and looked at me, I finally saw Corbin.  I didn't see a blank stare. He was in there. Still, the doctors told me he would most likely need to spend the rest of his life in a long-term care facility, but I never gave up. I told the doctors I knew he was capable of more - he just needed more time.

Corbin was awake but not for long periods.  He had just started to respond yes and no through thumbs up or down, sometimes.  He had a tracheostomy tube for his airway and a feeding tube for his nutrition.  He was still on monitors and many medications, but slowly, he got better.

50 days after his accident Spaulding Rehab hospital finally agreed to take him. I felt like we had won the lottery. It had all paid off.  All the sleepless nights, all the persistence, all the never giving up even when you have the most intelligent doctors in the world giving you negative information.  I knew we were going to do this, I knew everything was going to be alright. 

When he first got to Spaulding, he wasn’t talking or walking. He had a feeding tube and a tracheostomy. But he spent 41 days pushing his body and his mind to do things we were told he would never do again. On November 1st, he walked out of Spaulding, talking and eating regular food.

91 days after I was told to say goodbye to Corbin, he was back home with his family and so close to his old self. He graduated from High School last month. But our lives are forever changed.  Our days are still filled with tutoring and therapy, but I wouldn't change any of it for a second.  We cherish the time we have now - the times we have nothing to do but sit around the kitchen counter and just talk and laugh - that we would have taken for granted before.  When you are faced with never seeing a loved one again, never being able to hug them or kiss them, you realize how much every moment counts.  I had a nurse at Spaulding tell me that the support Corbin had is why he made this kind of recovery.  She said she had been doing the job for years, and yes of course the medical part of it plays a huge role. But beyond just being alive, Corbin thrived.  Having his family by his side, showing him the love and support, is what gives people the will to fight and keep pushing. I believe in the power of love and positivity.

So many people have told me they wouldn't have been able to do the things I’ve done, but I don't believe that.  I believe we all have an inner strength we know nothing about until we’re put to this kind of test.  We have to keep positivity even when there seems to be nothing to be positive about.  Find the smallest thing and hold onto it.  For me, it was the fact Corbin was alive.  As long as he was still alive, I wasn't giving up. 

Before it all began, we were just regular people, living our quiet life and growing into a marriage. I often shake my head in disbelief that something as dramatic as a brain tumor happened to such a boring couple. You see, we met in a hotbed of nerd-dom, MIT, in a graduate program for organic chemistry. I had come from a small college and felt behind academically, and most of my peers had come with serious relationships while I knew nobody. As I struggled to find my way, I noticed Chris. He exuded calm and kindness in a competitive, charged environment. After a helpful prod from a mutual friend, I summoned the nerve to ask Chris out for a visit to the Harvard Museum of Natural History on our day off from lab. He accepted and asked me to lunch the day before our date. He surprised me by being funny and talkative, and we hit it off. Our time at the museum was almost magical. As it was about to close, Chris and I entered the Earth and Planetary Science room full of minerals and rocks. It was dark outside and the display cases of gems seemed to shine brightly in contrast, and I was also shining with happiness. We extended our time together with dinner, then again with coffee. I felt lucky.

We bonded quickly over our shared interests in organic chemistry, teaching, and family. Unlike most of our peers, Chris had a rich life outside of school, full of family and friends. Rapidly our separate worlds became entwined. We were a team: best friends, partners, each the biggest supporter of the other. He did not ask me to marry him, we decided together. He did not surprise me with a ring, we chose one together. We turned to each other to debrief about work, to discuss our worries, to make plans. We didn’t need much outside of our private world.

In 2007, we were three years into our marriage and everything was just taking off. I landed my first “real” job, we bought our house, we had our first child, and we turned 30.  On the last day of 2007, everything turned upside down never to quite right itself again. We were in the Midwest visiting my family, headed to a New Year’s Eve gathering. Chris, luckily not driving, began acting strangely. It was the shock of my life to see my husband unresponsive and in uncontrolled motion, experiencing what I would later learn was a grand mal seizure. I fished Chris’s cell phone out of his pocket and called 911 in a panic. At the hospital, Chris was given anti-seizure medications and sent straight off for a CT scan. Soon after, a clearly experienced doctor broke the news - the seizure was caused by a mass in Chris’s brain. In my shock, the only thing I could ask was, “is it big?” The answer was not encouraging; it was “fairly good-sized.”

Time seemed to unfurl differently after that. Moments blended together in a haze of shock. We flew back to Boston, Chris slept on the plane with our son napping across our laps. My mind was buzzing with white noise, there was only one thought that stood out with clarity – what is going to happen? There would be no quick answer to that… 

January was a dark, confusing time as we chased all over the Boston area in search of the right medical team. Finally, we landed at MGH. Chris had an aggressive, awake craniotomy on one of the longest days of my life. The rest of the year was a dark blur of a difficult recovery from the surgery, daily radiation treatments, cognitive rehab appointments and a terrifying uncertainty. We also had a perplexing diagnosis for Chris – low grade glioma. The doctors were absolutely clear: there is no cure, the tumor would come back and be more aggressive, but the prognosis was that Chris would likely live for 10-20 years.

At first the disease surveillance scans were frequent. Gradually the time between them lengthened as they came back stable. As partners, our shock turned to coping with a long-term disease. We took things one day at a time, waking up, readying our son for daycare, working. When one of us had a particularly bad day, we learned to get through it by staying in motion. Vigorous house-cleaning, raking the yard, cooking on the grill – these things provided helpful distractions. Through it all we had each other. We talked about everything as we always had, but we became even closer. Slowly, our life did return to something resembling normal, but the undercurrent of wondering when the tumor would return was always there. After a couple of years, the tumor began to feel surreal and we discussed this endlessly. How could life feel this normal? Did anyone else understand that we were waiting for the other shoe to drop? There were no days that Chris did not think about dying and no days without the incurable tumor crossing my mind, but there was still work to do, our son to raise, dinner to fix, and bills to pay.

This long-term, terminal diagnosis threw a wrench in our family plans. If we hadn’t already had a child, perhaps we would not have chosen to bring children into the situation to avoid the future pain of loss. But, our son was already on this path with us and we had always wanted to have more than one child. We interrogated the doctors about genetics and felt assured that the kids’ risk would not be higher. We “just” had to reconcile the idea of a new baby with a terminal brain tumor… Over time, “no” gradually turned to “yes” for Chris, and neither of us looked back. Our second pregnancy brought a sweet joy. The brain tumor gave us a deep appreciation for this chance at new life. Our son was thrilled when he learned he would be a big brother! One day in the middle of a science seminar, I looked down and smiled at my black and white patterned shirt wiggling in time to the first palpable baby kicks. The day we found out the baby was a little girl, Chris and I were both overjoyed and marveled at our great luck to parent a girl along with our boy.  Just before she made her entrance to the world, Chris and I slowly walked the hallways of the hospital, pausing frequently for contractions, Chris supporting me as he always did. Despite the pain, I remember thinking how improbable this moment was in light of his illness, and trying to etch it in my memory. As she was born, Chris played his favorite song The One Who Knows and we both shed happy tears. We delighted in this little girl, knowing that nothing about life was guaranteed and still, here she was somehow.

As our family expanded to four, the richness of life also expanded. Chris reveled in being a dad – he was funny, always able to diffuse difficult moments with a joke. He was kind, quick to enfold his children in hugs. Chris grew professionally, becoming a leader at work. For several years life was a beautiful, normal dance of “do you need to leave early this morning, I’ll pick the kids up tonight, can you grab some milk on the way home, do we have plans this weekend, let’s go out for pizza.”

That is, until the tumor came back. It’s interesting, when I anticipated the recurrence, I always thought it would be instantly devastating. Instead, we found that recurrence was gradual but progressive. It happened like this: Chris experienced a slight uptick in focal seizures in the months leading up to his annual MRI.  Instead of the usual “looks good” post-appointment text, I received one that just read “appointment over.” Chris reported that there was an area of concern that could be tumor growth. A biopsy revealed Grade 3 tumor, more aggressive than before, but still, Chris was himself. We were lucky in that respect. He entered a clinical trial and chased all over Boston for special MRI scans and long hospital days, all the while keeping fastidious track of cycle days, medications, and symptoms. We were worried, but we were doing something about the tumor.

Things went smoothly, until the awful day Chris's clinical trial doctor popped her head in the exam room to exclaim that his tumor had shrunk by 30%, but soon came back to say no, sorry, there was a mistake in the software measurements. The tumor had actually grown so much Chris was ineligible for the clinical trial.

After four months of normal time on Temodar treatment and a stable MRI, Chris had a grand mal seizure once again. The dread of the next MRI scan was sickening, and it brought worse news than we imagined – not only was the tumor growing but it was also infiltrating a second area. Another biopsy revealed that the tumor had progressed to glioblastoma. But still, Chris was himself, working on his laptop not 48 hours past brain surgery.

But then, Chris declined suddenly. He began having lengthy focal seizures, his vision deteriorated, and reading was problematic. He went on emergency radiation treatments and last resort Avastin infusions. After a whirlwind of daily hospital trips, we had to wait and watch how the tumor responded.

We were on borrowed time. We did unpleasant things: estate planning, transitioning all of the bills to me. Chris showed me where the water shutoff to the house was and where to find manuals for the lawnmower and snowblower. Those discussions about how to carry on without him were excruciating. Chris’s main concern was that the family would be taken care of, and in light of the painful fact that he would soon die, he did everything he could to ensure it. Most importantly, we tried to be present for each other and the kids. We noted how difficult it was to “live in the moment” for an extended period of time, but we tried. We enjoyed simple moments, knowing that there would not be many left: walks together, date lunches, family outings, time at the park, beach trips. Chris did not feel the urge to check off an ambitious bucket list, but rather he treasured the kind of togetherness that can be so easily taken for granted.

All the while, we braced for the worst. For a few months, it didn’t come and we started to muse over the fact that it had not happened. Summer turned to fall before the tumor grew, but still Chris did relatively well even after we received this news. Our hearts were full and breaking as we fit in lots of lasts – last Halloween, Chris’s 41st birthday, trip to the Midwest to see family, Thanksgiving. As the holidays approached we knew that if Chris made it to them, they would be the last as a family of four.

As we were preparing to leave the house to pick out a Christmas tree, Chris had a grand mal seizure. Just as he came out of it, another started. I did my best to stay calm and administer medication, but then a third seizure started. He was taken by ambulance to the ER and almost died from respiratory depression. Somehow, Chris made it through. We were lucky. We had not been ready to say goodbye despite all of our preparation.

Chris came home by ambulance on hospice services. It was a terribly difficult December as his right side weakened, seizure activity increased, the number of medications was overwhelming, and the end was drawing close. We set small goals, trying to make it through Christmas and have a nice family time. Somehow we did, but afterwards Chris was less peaceful and I could no longer care for him well. In our past discussions about this end stage we had always prioritized Chris being at home but realized things could get out of hand and a hospice facility might be needed. Chris had wanted to shield his children from the worst of his decline. The moment arrived when he felt he should not be at home and I agreed.

On yet another difficult New Year’s Eve, we got word mid-morning that a bed opened at a hospice house, and Chris left our home by ambulance, just a couple of hours later. To say it was hard to watch him leave doesn’t begin to touch the emptiness of that moment. As he was loaded into the ambulance, Chris lay on a gurney facing the front of the house we bought together and raised our family in. I often wonder what was going through his mind. Was he desperately sad? The kids and I had to watch him leave, knowing he would never return to us, and we cried together for a few minutes after he left. My solitary journey to the hospice house was marked by shock that this was actually happening. Despite my wanting time to stop, Chris faded over the next eight days. He was mostly peaceful, always loving, and truly serene in the end. When he could no longer speak, he telegraphed his love by winking his good eye slowly several times. Chris died on January 8th.

Chris’s brain tumor changed the course of his life and ended it early. It shaped mine, too, and that of our children, in ways that we are only just discovering. Telling this journey is something that helps me process everything. But, Chris was so much more than this terrible cancer. Before the tumor was discovered Chris already embodied gentleness, loved a good laugh, was whip smart, always kind, and steadfast in his love for family and friends. These things did not change in the face of terminal illness. If anything, Chris doubled down on the way he lived knowing his life would not be a long one.

Now, Chris is gone and I’m no longer dreading his death but I’m desperately missing and loving him in his absence. I am left with a hundred thousand memories to carry as my life continues without my partner. I move forward reluctantly but still, I move forward. I am learning about myself and my capability as an individual. When things seem hard, I remember Chris’s unwavering opinion that I could do it, whatever “it” was, and I remember how he managed so admirably under his impossible circumstances. On my better days I focus on the feeling of being lucky. I was lucky to know Chris, to learn from him, to love and be loved by him, and to share a life with him. I told Chris before and I will say it again now, in a heartbeat I would do everything all over again with him.    

Listen to Chris and Betsy here, in an Audio Story recorded in August, 2018, six months before Chris died.

An Interview with Robyn Houston-Bean, Founder, The Sun Will Rise Foundation

By Val Walker

INTRODUCTION

Robyn Houston-Bean lives in Braintree, MA, and manages an insurance agency for four days a week. She is married to John Bean, a sheet metal worker, and has a daughter, Olivia, age 25, and a son, Jake, age 21. Amazingly, around her demanding business and the needs of her family, Robyn runs a dynamic, fast-growing organization, The Sun Will Rise, dedicated to serving families affected by the Opioid epidemic.

Three years ago, Robyn’s oldest son, Nick, died of an opioid overdose. Just one year after his death, finding a way to channel her grief, Robyn began building her foundation in honor of her son, and soon engaged hundreds of families with support groups, inspirational talks, and fundraising events.

I wanted to understand how Robyn was able to express her grief through community activism, and more deeply, to explore how she found comfort, understanding and support for her grief.

One grey morning in February, I enjoyed a rich, two-hour interview with Robyn. Her candid insights about how grief isolated her, and what it took to break through isolation and turn to others was a powerful story in itself. She didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death. Her story is so compelling and important that I have written her interview in two parts. Part One is about how she broke out of the isolation of her grief. Part Two is about her healing adventure of developing her foundation, The Sun Will Rise.

Right at the beginning of my conversation, Robyn made one thing quite clear: We don’t ever “get over” nor completely recover from our child’s death, but hopefully, we learn to live with loss—and if possible, find a sense of purpose to guide our grief. For Robyn and many who support her work, community activism for facing the opioid epidemic has given devasted people a sense of meaning, purpose and belonging.

INTERVIEW

Part One: Breaking Through the Isolation of Grief

Robyn didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death.

Val:  Can you describe the early stages of your grief—starting at the point you think it’s best to start?

Robyn: First, I should tell you about the night before he died.  I’ll never forget the night before Nick overdosed. Strangely, out of the blue, before Nick came home from work, my daughter, Olivia, said, “I have a bad feeling about him.” As soon as he got home, he walked straight to the fridge. When Nick put his face into the fridge I made him look at me because of my daughter’s feeling that something didn't seem right. I put both my hands on the sides of his face to make him look at me.

I asked, "Are you okay?" He told me, "I'm just tired-- I'm going to bed, why?" I answered, "Because I love you, and don't want anything to happen to you.”

He replied, "I love you too. I'm tired and going to bed. I have to be up for an early shift." It still haunts me that I didn't know something horrible was going to happen that night.

The next morning as I was headed out to the gym for my usual workout, I was surprised to see Nick’s car in the driveway, as he usually drove to work on the early shift. I wondered, why was Nick’s car still there? I called upstairs towards his room, “Hey Nick, are you up there?” It seemed so weird he was not answering as he was such an early morning kind of guy. I went to his room and found him lying motionless in his bed, cold and blue. I tried to revive him with Narcan but I could tell it was too late. I screamed a horrible, guttural sound—a sound I have never made in my life. Still, my daughter called 911. The EMT and police came and took him to the hospital, but he was gone.

Val: What a horrible shock—to be the one to find him dead right at home. Before his death, had there been any signs that you sensed Nick was using again or hiding anything?

Robyn: Not really. It was such a shock, and there really are no words to describe this kind of shock. He was doing so well and so proud of his new job as an Emergency Services Technician. He had just finished his certification and was feeling a real sense of purpose and mission in his life. He told me almost every day how he loved his work, and loved being so helpful for others, saving lives. But…perhaps, he saw too many awful things during emergencies and rescues, and maybe some things had triggered him. I will never really know.

Val: What were those first weeks or months like for you?

Robyn: Everything just stopped. I just stopped. All I could do was sit on the couch. I had always been a super-energetic person who loved fitness competitions and worked hard to be the best at anything I wanted to do. I was once the unstoppable, super-achieving woman who never looked back.

But when Nick died, I didn’t know how to be me anymore.

Unfortunately, my husband and youngest son didn’t know how to relate to this person I had become—this woman who just stopped everything. And my friends tried to text me and chat to cheer me up. But I couldn’t do chit chat anymore. My daughter could understand somewhat, but she was my daughter and was grieving in her own way. For me to grieve, I needed to have some of Nick’s things around me on the counter by the kitchen—his little harmonica, his coin collection, little pins he wore, his pocket knives, but this bothered my husband to the degree that this caused arguments. He didn’t want to talk about the death of our son or look at Nick’s stuff because he just wanted to push the memories away to get through the day. I was the total opposite from him in how I grieved. There was an awful tension between us. I felt lonely with my grief because no one in my family could understand how I was grieving as a mother. And I was anxious that my friends were trying to fix me and get me to socialize or get back to the gym. No one seemed to accept that the person I was before Nick’s death—that once unstoppable Robyn-- no longer existed.

Val: It sounds so isolating for you. No one in your family is the right person to talk to, and your friends don’t seem to understand how to relate anymore, even though they are trying. What in the world did you do?

Robyn: I had a gut feeling that a grief counselor might help me. For a referral, I asked a pediatrician I liked for years (who had treated my kids when they were younger.) He gave me the name of an excellent therapist, and fortunately I felt comfortable with her.  I opened up and shared everything with her. I was especially concerned about how to cope with my husband and children who weren’t grieving in the ways I was.  A few weeks later, I asked my husband and kids to join for family therapy. They weren’t too thrilled about it, but they cared enough to go for a few sessions. I was relieved this therapy resulted in finding a solution about how I could have Nick’s things around me without this upsetting my husband. We decided to put Nick’s little things in a box on the counter, so when I wanted to connect with Nick I could just get his things out of the box and then put them away. Believe it or not, this simple solution made a huge difference for me and my husband!

Val: Wow. I love what you just said. And what a perfect solution to use the box for Nick’s things.

Robyn: Eventually my daughter, Olivia, started going into the box, getting out his harmonica and coin collection, and sharing memories about Nick with me. But still…I had a long way to go to get used to my new normal without Nick in my life.  Indeed, we all had new normals without Nick in our lives.

But one day a thoughtful friend connected me on Facebook with a friend of his named Carole who had recently lost her child to an overdose. Very soon we were talking on the phone. We could “go there” with the horrible things that no one else could talk about. For our first face-to-face meeting, Carole met me at the cemetery where both of our kids were buried. Can you believe it—both of our kids were in the same cemetery lying near each other! We sat on the grass and cried together. We made a pact with each other that we would “take care of our kids” every day by going to the cemetery every day. We agreed that no one could rob us of our grief and the time we needed to “take care of our kids.”

Soon another friend connected me to other grieving parents through Facebook.  In a few months we found out about an organization called Hand Delivered Hope, a group of concerned citizens affected by the opioid epidemic. This group provided street outreach to people who have been impacted, meeting their basic needs so that recovery was possible. Hand Delivered Hope had organized a benefit event where participants were bringing bags of comfort items. My sister and I attended this event, and to my surprise, I made friends easily with other parents and family members who had lost loved ones or had loved ones still struggling. I didn’t feel judged or that I had to censor myself from talking about messy and awful topics related to addiction. They busted through the stigma of addiction as I was accepted and welcomed. They asked about Nick, and how I was coping with my grief. They shared their own stories about broken relationships and how their kids were destitute, misguided, broken, or had died through an overdose. It was a safe place to talk honestly as a group, and I immediately realized how healing it was to have this open, warm environment where I could be a grieving mother—rather than trying to be that unstoppable, super-achiever person I used to be. This experience of feeling so welcome with my grief was a big turning point for me.

I had a huge revelation, and it all came down to this: My child was not here anymore, but I could help someone else’s child. And I could help someone else who was grieving to feel warmth and acceptance. Braintree needed more support groups, fundraising events, educational events, and resource development. Soon after my revelation, one thing led to another. I met another wonderful friend named Rhonda who was involved with a grief support group at GRASP in Brighton. She told me there was no grief support group on the south shore of Massachusetts. And things started moving from there—it was my calling. I believed I was the one to do this.

Val: Thankfully, you found a group where you didn’t have to hide your grief, and that inspired you to start your own support groups. What about your older friends? Did they fade away? Or were you able to maintain those friendships alongside the new friends you were making?

Robyn:  Yes, I have been able to keep most of my old friends. I finally managed to figure out how I can fit my old and new friends in my life. First of all, these two groups of friends are two separate groups. I call my old friends my “before” friends (before Nick’s death) and my new friends my “after” friends. The “after” friends definitely “get me” more easily and I can talk about the good, the bad and ugly stuff with them. However, I truly love my old friends and I tend to do more fun and lively stuff with them—which is just fine for short periods. I don’t want to be a “downer” with my “before” friends. My “before” friends still want to see me laugh and socialize, and I’m able to do that on some occasions. I must admit they can still make me laugh. I am glad to have both groups in my life. But I couldn’t live without my “after” friends.

Val:   Robyn, what a creative way to make room for all your friends in your life. That also sounds like a beautiful way to embrace your “before” self with your “after” self.

Robyn: Thank you for saying that. It’s all taken a long time.

This concludes Part One of my conversation with Robyn. In my next post on the Health Story Collaborative, Robyn will share her healing journey with developing The Sun Will Rise Foundation. 

• Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

• Team Sharing Inc., a national organization of parents who have lost children

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

• The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks

• Robyn Talking about Her Son, Nick, recorded on the Opioid Project

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

In 2010, Kate, a single mom from New Hampshire, gave birth to Brook, a healthy baby girl.

Brook seemed to be developing normally and reaching all of her milestones — learning how to sit up and roll over, grasping at toys–until she was 6 months of age, at which point she started to regress. She lost skills she had already learned, and gradually, Kate noticed other things. Brook didn’t seem to respond to her name, she would fixate on lights and just stare and stare, she started dropping toys, unable to hold onto them. Eventually, after a long medical work up, Brook was diagnosed with Tay Sachs disease in 2012, and Kate was told that her daughter would most likely not live past her fourth birthday.

Today, Brook, is three years old and requires constant care. She is blind. She cannot swallow and is fed through a feeding tube. She is having near constant seizures. And she continues to deteriorate. Brook’s older brother Jake, born to a different father and now 9 years old does not suffer from the disorder.

Listen above to Kate’s story of living with and caring for her terminally ill daughter.

Tay Sachs is a fatal genetic disorder. A child is born with Tay Sachs when he or she inherits two damaged copies of the HEXA gene on chromosome 15 (one from each parent), which results in a deficiency of the Hexosaminidase A enzyme and the subsequent build up of a damaging fatty substance in brain cells. The result is a relentess, progressive loss of physical and mental functioning and eventually, death.  A person with one damaged gene and one normal gene will become a carrier with no clinical symptoms of the disease. If two carriers have children together, there is a 25% chance of giving birth to an affected child with each pregnancy.

Tay Sachs, a rare disease with an incidence of approximately 1 in 320,000 in the general population, occurs with increased frequency in certain populations, including Ashkenazi Jews, French Canadians, and Cajuns (from Louisiana). In these groups, approximately 1 in 30 individuals is a carrier, and 1 in 3,500 children will be born with the disease.

Kate, who is of French Canadian descent, had no idea she was a carrier before Brook’s diagnosis. She knew nothing about Tay Sachs, and was unaware that French Canadians are at increased risk. Though pre-conception counseling is available, Kate didn’t know this at the time, and if she had, she might have assumed that it wasn’t relevant to her.

How does a mother manage life when her child is dying? She mothers. Kate spends most of every day in her living room with Brook, an oxygen machine hissing in the background, surrounded by pill bottles, suctioning her daughter’s secretions, moistening her lips, and giving her medication to temper her seizures. Kate’s primary goal is to keep Brook as comfortable as possible in her last days, and she works very hard to achieve this. “So many people for so long would say, ‘You’re so amazing, I don’t know how you do this; This is incredible, how do you manage this,’” Kate says “I would look at them and think, ‘This is my daughter, how can I not do this?’” And every day she tries to spend as much time as possible with her older son, Jake, and to support him through the loss of his sister the best she can.

Story first appeared on WBUR’s CommonHealth blog on November 8, 2013: http://commonhealth.wbur.org/2013/11/extreme-mothering-child-tay-sachs

Photograph: Mary White photography

Resources:

http://www.mayoclinic.org/tay-sachs-disease/treatment.html

http://www.ntsad.org/