You never know how strong you are
until being strong is all you have.”
Bob Marley
INTRODUCTION
My new normal as my brother Bruce’s guardian was to wake up every morning at 5:00 a.m. Mountain Time so I could speak with the nurses by 7:00 a.m. Eastern Standard Time for updates on the previous night and a course of ac‐ tion for that day, including dialysis, permission for test ap‐ proval, permission for procedural approval, numbers, or notes from the doctor. My husband and I were in Vail, Colorado, where we spend our summers, and my brother Brucie, who had Down syndrome was staying at the Ken‐ Crest group home in Philadelphia at the time.
It was July 2020 when Janice, his primary caretaker, called to tell me Bruce was being taken to the hospital. The dialysis center was very concerned with his numbers and insisted he go immediately. Dialysis takes a toll on blood count and blood pressure, so I was not immediately alarmed. This had happened before. I was FaceTiming with Bruce when he learned he would be admitted for what was explained as gallbladder issues. His bile numbers were high, and his skin was yellow.
My father died of pancreatic cancer, so I was wary of the symptoms. I called my daughter, Jerica, a second-year surgical resident at Houston Methodist to discuss my own
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theory. Bruce spent three days in the hospital alone due to COVID where I was never able to speak with him. The nurses were too busy to speak with me, but I was able to speak with his doctors. When they learned no one was able to communicate with my brother, they filed a com‐ plaint with the hospital.
I may have been isolated in Vail, unable to visit due to COVID, but never alone. Latoya, KenCrest’s nurse as‐ signed to the Linden Avenue site where my brother lived, and my partner in crime, helped me navigate Brucie’s treatments, doctor updates, and final plans to get him out and home. I truly could not have successfully accomplished the support of my brother’s care without Latoya.
My baby brother was dying. He had just been diag‐ nosed with advanced stage pancreatic cancer. Latoya, Jan‐ ice, and I conferenced immediately with the oncologist to discuss the next steps. Due to his advanced stage and the effect that dialysis was already having on his body, neither surgery nor chemotherapy were options. I mean really, how much more could be asked of him? Dialysis three times a week and chemotherapy? We were all in agree‐ ment—not going to happen. He would be placed on pallia‐ tive care with a palliative nurse visiting him at home to monitor his health.
They say ignorance is bliss and I must agree. Brucie knew when he didn’t feel well but had no comprehension of the seriousness and implications of his illness. He was happy to be released, getting hugs from his nurses and the doctors. “I will miss this sweet guy. You are so lucky to have each other,” and “He is so lucky to have you. I will miss his smile in the mornings,” were comments I heard repeatedly. More people appreciating the essence of Bruce.
As his ERCP procedure was unsuccessful, Bruce was transferred to Temple University Hospital, a blessing, where the nurses and doctors not only conversed with me
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multiple times a day but offered to visit with my brother so we could FaceTime, delighting in his personality and our interactions.
He would eventually need a stent in his bile duct to help with his digestion of food. This was the only proce‐ dure agreed upon to ensure he received nourishment. Surgery was successful. It was recommended that he stay overnight, just to be sure, which was different from the original plan to go home that day. Thank goodness, be‐ cause at 1:00 a.m., the phone call came with news that my brother was in serious trouble. He was bleeding internally —from where was not yet discovered and permission was needed for surgery. The bleed was found and corrected, and Bruce was back in his room after a transfusion by 3:00 a.m. He remained in the ICU for a few days, receiving round-the-clock care for monitoring and then moved to the regular floor for discharge.
A trip to Philadelphia was not planned until the begin‐ ning of August to allow Bruce time to settle into a routine of care. Dialysis proved too taxing; so, after speaking with the nephrologist, Janice, Latoya, and I agreed to try two times a week with strict monitoring of his numbers by the dialysis center and his new palliative nurse, Justina. Bruce and Justina bonded quickly so visits were more social than negative while checking his heart, blood pressure, and red blood cell count. Justina and I conferred after each visit so that I was kept abreast of any concerns or recommenda‐ tions in changes of care.
Although I was isolated and far away, I was never alone. Latoya and Janice were ever present through texts and calls to not just discuss Bruce’s care but mine as well. I still marvel at how blessed I was. My brother David and his wife Lisa were wonderful, always available to talk and just as concerned about me as they were about Brucie. In support of my mental health were my husband, children,
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and nieces, sending photos to make me laugh and always calling to check in. My granddaughters’ FaceTime chats and family Zoom meetings kept me sane. My solace was hiking the mountain trails of East Vail, listening to the Killers, dancing with the nymphs in the forests.
My daughter Jerica, of course, knew everything. As a graduate of Temple Medical School, she was acquainted with some of Bruce’s attendings and was friends with members of his medical team. Because of this comfort level, Jerica was involved with consults and was encour‐ aged to discuss Bruce’s care with his attendings.
She and I had more direct discussions—there was no need for buffering or protecting. We knew the good, the bad, and the ugly even before his diagnosis. How to share the nitty gritty details or what to share without causing confusion and pain was not an easy task for me. The most exhausting part was keeping family informed through texts, phone calls, and FaceTime.
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August 17, 2020
SUNDAY
I snuggle with Bruce in his bed, watching the original Star Trek as I have for the past five days, savoring the time as this is our first in-person visit since seeing him at Jerica’s medical school graduation a year ago. His journal, my prized possession, has accompanied me on this trip and Bruce has taken great pleasure in continuing to write the names and songs of his favorite albums in it. We Zoom every day with David and FaceTime with Randy, his girls, and Jerica. It’s important to me that they still have contact so he will not be forgotten. They lovingly comply no matter the time or day.
“This Down syndrome man is soon to turn fifty-three years old in fourteen days and his big sister is neither men‐ tally nor physically challenged—who would have thought we would have so much in common?” I ask out loud to no one in particular. I lovingly list the comparisons between Brucie and me to my husband, Big Bruce: “Star Trek, mashed potatoes, markers for kidney issues, gum disease, rolling our eyes, our love of dancing and music, singing at the top of our lungs rocking out to our favorite songs (not
necessarily the same taste in music), teasing David because it’s so easy, and the ability to read and work a room.
I have joined The Transition Network (TTN), a won‐ derful group of retired professional women, and through this group I have met nine very special ladies of my peer group. We have committed to staying in touch with each other weekly through Zoom and they have been a dear source of comfort. One of those very special ladies named Judi had heard of my brother’s illness and offered to have us stay at her summer residence, an apartment across from the Philadelphia Art Museum, as she would remain in Florida due to COVID. She immediately reached out to her friend and neighbor Barbara, both taking us under their wings for the eight-day visit. Talk about a caring community. This care will help when Big Bruce and I meet with the funeral parlor and cemetery administrator this upcoming Friday to arrange for Brucie’s final resting place. My brother’s death has been on my mind for the last few years as leaving him was imminent, and I worried about him outliving me and being buried alone. My parents pur‐ chased a cemetery plot in Trevose, PA, for four—long be‐ fore my grandparents passed away. As my dad was buried in Florida, we had signed documentation transferring my mother’s plot to be buried with Dad. This left two spaces. When I moved to Florida, I had my mother transfer one of those spaces to be used by Bruce. Although I was sad knowing my brother would pass sooner rather than later, I felt that a weight was lifted off my shoulders knowing he would be with his paternal grandparents, the same Bubbie Vera and Zadie Pop who raised me as a young child. He would be in good hands. A beautiful rose casket was chosen along with flowers, white lilies and blue hydrangea, and signed contracts. When we returned to the house, I showed Brucie pictures of the casket and flowers asking
him about colors while subtly explaining how they would be used.
“Brucie, when Mom and Dad died, they had a casket, a space to sleep before going to heaven. This is what I like. What do you think?”
“I like this color,” he replied, “What about Champion sweatpants?”
Changing the subject, I showed him the white flowers, lilies, he had shown a great fondness for on our walks around the neighborhoods in Voorhees.
“Do you like these?” I asked.
“Yes, yes I do. How about blue?” he suggested. We googled blue funeral flowers on my computer so he could make the final choice. Blue hydrangea was a big hit. I did good.
But for now, I try to imagine as I have so many times before what life might have been had he been born nor‐ mal. Would we still have been this close? Would I have been a veterinarian having maneuvered successfully through medical school not having had to deal with the guilt of leaving my brothers and then the guilt of Bruce being sent to a group home? Would he be married with children? Would there have been more nieces or nephews for me to love? Would kidney disease have still plagued him or, like me, just left markers? Bruce dozes beside me and I smile thinking back to the beginning of our journey together.
CHAPTER 1
Welcome Home: The Implosion Begins
A ugust 31, 1967
“HE’S MONGOLOID,” my father sobbed to my grandparents downstairs in our living room. “Do you all know what that means?” he continued choking on tears. I was thirteen when I overheard this as I lay in bed one night, waking from a dream that my father was crying. No dream. My grandparents were crying with him, mumbling, I suppose soothing words of comfort. I thought to myself, “Mom just had a baby boy. I have a new brother. What does that mean, mongoloid, other than the people crossing the Bering Strait I learned about in history?” But I instinctively knew this was something that was heartbreaking because those sounds coming from downstairs were not happy sounds. I couldn’t breathe and my stomach wanted to be sick.
1
The following day I would get to meet my new brother. Dad and I would be going to the hospital to visit Mom and Matthew. I would practice the new name and smile. I was told that Matthew was premature by four weeks, so he must stay for a few more days. David, now the middle child, would not be coming with us; he would be going to school. An alarm went off in my head.
It was morning. David left for school and we left for the hospital. My father still hadn’t told me about the baby other than, “We decided to name him Bruce instead of Matthew after your uncle in California.” Second alarm in my head. Matthew Brian and Marla Beth were names meticulously chosen and repeated ad nauseam by my mother month after month for eight months of pregnancy —and Bruce was now his name? Was he joking? Between you and me, I prayed for a boy, hating the name Marla Beth. My prayers had been answered, but Bruce with no middle name was the best they could do? Not okay. Still, I said nothing. I just nodded.
At the hospital, I was able to see “Bruce” before I saw my mother. There it was, the heart-wrenching realization of what mongoloid is, or should I say the realization of the characteristics. Not only was Bruce scrawny and tiny but his slanted eyes and abnormally long tongue hit me like a punch in the stomach. The hardest thing I have ever done in my life, to date, was to pretend everything was perfect when I visited my mother’s hospital room that day. “OH... He’s so tiny,” was all I could offer, fighting tears. Mom was ecstatic, “Isn’t Matthew adorable and the tiniest thing you’ve ever seen?” Wait, what? Matthew? She didn’t know? How could she not know? I didn’t know what I didn’t know and even I knew. “Yes, Mom. He is the tiniest thing I have ever seen. When are you coming home?”
Ah, this is why David went to school. At the tender age of nine, he was being protected. I guess I didn’t need
2
protection at almost thirteen years of age. Hell, always the one standing up to my father’s and grandmother’s tempers. They must have forgotten I was still a child also.
“I know about the baby,” I blurted the minute my fa‐ ther and I walked out of the hospital. “I know and Mom doesn’t. How is that possible? Who told you and why doesn’t she know?” I was yelling at that point. So angry. But at who? My parents? The doctors? God? Not God. Not yet. Still too focused on my mother’s ignorance of the situ‐ ation. My father’s only reply was, “Do you know what this means? How hard this will be? Too hard.” Not, “Sorry, honey. This must be scary for you,” or, “I was waiting to tell Mom when she is stronger so we could help you and David understand,” or even just a hug.
Nothing. I would eventually realize this was the begin‐ ning of the end of our parental safety net. We were to be‐ come two ships adrift, my parents in one and the three children in the second, the only tie being Bruce, our new handicapped baby.
3
SEPTEMBER 3, 1967
MOM CAME HOME ALONE. Bruce needed more time in the hospital. David and I were called into the master bedroom independent of each other and given the bad news. I was called in after David to be told Bruce would not be coming home. My parents, according to my father, had been de‐ clared mentally unfit to care for their handicapped child so he would be placed in Pennhurst State School, an institu‐ tion in Chester County, Pennsylvania. Stunned into si‐ lence, I went straight to my Britannica Encyclopedia to do some research. There, with photos so gut-wrenching to support the abuse and inhuman care, was a naked young child chained to a chair in his excrement. Of all the photos, that picture haunts me today, fifty-three years later. They were sending this helpless newborn to a place I wouldn’t send a dog. I brought the encyclopedia to my parent’s bed‐ room. Placing the book in front of my mother, I whispered with my heart in my throat, “I wouldn’t walk my dog there and my brother will not be going here.” In my mind, the next step was to call my Bubbie Reba. “Hi, Bubbie,” I said into the phone trying to hide my pain, “Would you like some company for a few days?”
“Mamaleh (a Yiddish nickname for Little Mama), what’s wrong? You know I would love to have you, but first, tell me what’s wrong.” What could I say? Your daughter has lost her mind? My baby is going to an in‐ stitution to be abused? “Nothing,” I blurted, “Just need some time away from the grown-ups.” After a long sigh she said, “And, what about school?” Her accent thickening as it always did when she was upset. “Bubbie,” I started cry‐ ing. “Mom doesn’t want Bruce to come home. They are giving him away. You have to help!”
Even though we were closer to my Bubbie Vera (Dad’s
4
mom), who had raised me and had two bedrooms David and I had been using for years, it was not a very conve‐ nient trip to get to her. We would have to travel via three buses into North Philadelphia, which would take us an hour. My Bubbie Reba, on the other hand, lived in the Olney section of Philadelphia near Einstein Hospital. It was a short walk from the bus stop to her apartment. I chose Bubbie Reba because we’d only take two buses to Olney, the W bus (a three-minute walk from our house), and then the Y bus to Olney station. We could even walk to the Y bus on Cottman Avenue if David felt up to the half-mile trek.
I got off the phone too upset to look for suitcases in the garage. How would I manage to get both of us to school? We could miss a few days. That would get my par‐ ents to come to their senses. I needed to talk with David about leaving without scaring him. He would be upset but he would listen to me as he always did. The suitcase was gotten and packed for one night. My parents had no idea, locked away together in their bedroom. My dad finally came down to make sure we had eaten dinner and said goodnight. He looked awful. Red eyes, slouched shoulders, defeated. My mother had sent him to check on us. Still not a family talking, planning, and grieving together. We were abandoned for the first time, but not the last.
David and I left in the morning for my grandmother’s apartment. There was the love, support, and comfort we had been missing. My Bubbie came through. She had spoken with Bubbie Vera and the four grandparents were going to meet with Mom and Dad to discuss a plan of caring for Bruce. This time, our lack of inclusion was be‐ cause they realized we were children and, although we were a great source of help, we needed them also.
Bruce came home. It was almost normal. We went to school every day, came home, and had snacks before He‐
5
brew School. For David, Hebrew school was Monday and Wednesday. It was Tuesday night for me. A strange rhythm found its way into our lives. David and I were so excited, the naivety of youth, the lack of feeling hopeless because the world is full of possibilities. A new baby to play with, teach, introduce to our friends. I remember my joy with David, babysitting for him in his playpen and get‐ ting an allowance at the age of four and a half, feeding him and watching his smile as he came to recognize me. Now David would know that feeling as well being the big brother.
Bruce as a baby
Zadie Baizer came by bus three days a week like clock‐ work to help his daughter and baby grandson. If you didn’t know, you might miss the cracks; it was an amazing feat as he was never involved with us as babies. He learned to change diapers with those huge safety pins. Pampers were not on Mom’s radar just yet. He would give him a bottle, take the stroller for long walks, and—his ultimate favorite activity—sit on the patio in his wife-beater and shorts, rocking Bruce, and listening to his precious Phillies play baseball on the radio. Bubbie Vera filled in the other two days as she had a much longer and tedious schlep with Dad driving her home before dinner. Weekends were for the
6
four of us arranging our schedules to ensure Mom was never alone with Bruce.
Mom was unusually quiet while we were home. Yes, she asked about our days, reminded us about homework, but with no follow-up. No prying about lunch time, who I ate with, friends, after school activities. No checking David’s homework knowing he struggled. She was there, but not like before. Like I said, almost normal. One after‐ noon while changing Bruce’s diaper Mom asked noncha‐ lantly, “Lynne, how would you feel if Bruce was gone?” Alarm! Alarm! Danger, Will Robinson!!!
Holy God, what did that mean? How do I answer that? Gone, like dead gone? Deep breath. “I would really miss him,” was all I could manage. All she said in response was, “Okay.” That was it? Just okay? There was no follow-up with: “No, we would miss him also. Nothing is wrong with him...Didn’t mean to scare you.”
This was not okay. I asked David if Mom asked him any strange questions, but he shrugged and said no. He didn’t seem to get what was going on and that was its own kind of blessing. At nine, he was so easy, making no de‐ mands as the brand-new middle child, only wanting to help. I realize now she was trying to feel me out, give me clues. I was lucky not getting them. A nagging realization set in and as time went on, it became apparent I had been correct. We were abandoned again. It remained that it was my parents against the world, no matter the support of my grandparents or the love and constant help from David and me. The family unit offered no solace nor were their other two children recognized as natural resources of hope. It would not be the last time.
My Zadie Pop, my hero, passed away when I was fif‐ teen. The first parent and grandparent to die. My heart was heavy. My parents and grandmother were bereft up‐ stairs. David, Bruce, and I left downstairs with my other
7
grandparents and family I had never met before. That nag‐ ging feeling ever present. The hearse arrived taking my parents, grandmother, and other family to the funeral home. Once again, my Bubbie Reba coming through, se‐ curing a separate ride for us and as we were not included with family sitting in the front pew, ensuring we were sur‐ rounded by her love and support. I thanked God that David and I had each other, because it was the last time I depended upon my parents for any emotional support.
I did have an issue, though, not just with my mother. Being active in the synagogue youth group was getting harder as my anger about Bruce grew. How could God, my God, allow this to happen to children? I finally told my fa‐ ther I wanted to convert to Christianity because Jesus would never have allowed this. Looking up from the newspaper, he gently replied, “Honey, there is only one God. Call him Eloheinu, Jesus, Allah, George, Sam, or Michael. Tell me what’s going on.” (I did have to laugh at the thought of God being called George or Michael.) I tried to explain my rage managing to hold back the tears: “How could a God be so cruel? What could any helpless child possibly do to deserve this punishment?”
“We cannot pretend to know what God has in store. You have found your voice. Ask him yourself. It’s not like he doesn’t know what you are thinking already, so just ask. If you still want to convert, we will not stop you.” As a pretty devout Jew, my dad was being cool about this con‐ verting issue. For the first time during this ordeal, my fa‐ ther had managed to say the right words to calm me, for which I was so grateful.
That night in bed, I challenged God to a conversation. I was neither polite nor reverent. “You and I have to have a talk. Why was my little brother born with Down syn‐ drome? How could you not know my parents would not handle this well when they are already in denial?” Nothing.
8
Silence. Well, what did I expect? I did not want to face this rejection and hurt from his lack of acknowledgement. I re‐ fused to back down or show weakness as I cried myself to sleep.
In my dream, God answered: “Lynne, of course I knew your parents could not handle this crisis. I am God for goodness’ sake.” I was sitting in a comfy chair across from this old man. He continued, “They already had issues with David, poor guy. I truly believed that having to deal with a special-needs child, the family would come together. Teaching Bruce would help your parents understand that David needed help and was struggling. I also knew you would be there. So, tell me, haven’t you found your voice and risen to the occasion? Didn’t you help keep Bruce out of the institution? Haven’t you helped David? Your baby brother is a gift to love, cherish, and protect. See how David now has someone to worship him? Someone he can help, being no longer helpless himself? You will grow to become the woman you were meant to be.” Once awake, I informed God, “This is not over. I will be back,” feeling a sense of serenity that would not last long.
