I’m going to be a mother for the first time.
No one can forecast when this will happen, but all signs point to anytime between next week and a decade. Fifteen years, max.
When the time comes, I will essentially have the care and responsibility of a ten year old male who is–and is not–a child. When he becomes my son, I will love and guide and clothe and feed and protect him from the dark with the knowledge that I will do these things, every day, until one of us leaves this earth. He will never grow up, he will not experience the pain and awkwardness of adolescence, and he will not marry or strike out on his own, ever. He will be ten when I become his mother, and he will remain ten forever.
His name is Joe. He’s my big brother. He is fifty years old but has the mental capacity of a ten year-old. But he isn’t a child. (And he is.)
My family doesn’t discuss the particulars about my impending motherhood–we don’t make plans, or try to predict how long my father will be alive, or discuss how my older sister Robin and her husband John have already taken over much of my brother’s care, and that eventually it will be my turn. To do this, I will have to move back to Rhode Island after spending almost half my life away because Joe is part of a wonderful work and recreation program and it would be cruel to remove him from the only life he’s known. It is understood that when the time comes, I will extricate myself from my current job and personal relationships and living situation, and return home to be my brother’s mother.
My future destiny as a mother began in July 1960. My mother was nineteen years old and a week overdue with her first child. She was slow dancing with my father at a wedding when my grandmother–my father’s mother–stepped up behind her and tapped her on the shoulder. “Come with me, little girl,” my grandmother said, “your water just broke.” A few hours later the doctor released my mother from the hospital with instructions to return when she started having contractions. But she never did. A week passed, and then another. My parents didn’t know enough to be worried, but my grandmother, who had been a midwife for over forty years and had firsthand experience with the complications of a “dry birth,” had never heard of a baby surviving weeks after the protective sac of amniotic fluid had burst. She called the doctor often, but his stony response remained the same: He was the doctor. By the end of week three, my grandmother’s fears had mutated into rage. “My daughter-in-law is ten months pregnant,” she shouted into the phone. “She needs a cesarean, and she needs it now.” This did not impress the doctor. He started explaining who had the medical degree, but my grandmother interrupted him again: “If something is wrong this child, it’s on your head!” Although rampant medical malpractice lawsuits were still a thing of the future, apparently these were exactly the words he needed to hear. “Send her in then,” he conceded gruffly before hanging up.
My grandparents took my mother back to the hospital. As the hours passed and the nurses pumped more drugs into her system, she started slipping in and out of consciousness. It was only weeks after my brother was born that my mother, relieved to finally have her son safely at home, confided in my father: all she could recall from her many hours in the labor room was the doctor’s frightened face above hers, and then, sometime later, his panicked voice as he urged the nurses to hurry and prep her for a cesarean. “We have to get this kid out now!” she remembers him yelling before the room faded to blackness.
Six months later my parents sat in another doctor’s office and received the devastating news: Joe’s inability to hold his head up, or shake a rattle, or maintain eye contact was due to severe mental retardation and cerebral palsy, most likely the result of a lack of oxygen to the brain due to the late delivery. Their son, this new doctor informed my parents, would never walk. He would never talk or be capable of even the most basic communication, and he would be a “vegetable” for the rest of his life. The best option, the easiest option, he said, was to put their baby in an institution.
But my brother wasn’t a “vegetable” at six months, and my mother wasn’t going to let him turn into one. She began the excruciatingly long process of teaching Joe how to walk by positioning a towel between his legs to hold him up, and then gently kicking his feet forward. She did this day after day, month after month, year after year, until he took his first wobbly steps at five. By the time he was five and a half, Joe could totter around the house easily, though he still couldn’t communicate even his simplest needs. His only attempts came from pointing–at himself, or a cupboard or an object in the room–but most times this only resulted in tears and frustration. He cried often, and threw himself on the floor in fits of rage, and the exhaustion and stress of raising him and my sister, who was three by the time Joe learned to walk, pushed my mother to her limits. She consulted with more doctors, but the answer was always the same: Joe’s “condition” would be best served by institutional care. My tired yet undefeated mother only shook her head and left these visits newly determined to prove them all wrong.
And then, a couple of months after Joe turned six, my mother’s responsibilities tripled. She had another baby to care for–me–but this was good news, and not just because she wanted Joe to have many siblings: with my arrival my big brother finally started to show an interest in talking. The first noises came from deep inside his throat as he hovered around my crib, and while my parents couldn’t make out any words in these noises, they were hopeful. When I started speaking early (“Very early, and you haven’t stopped yet,” my mother would tease dryly), Joe and I began “talking” to each other–in grunts and whines that quickly developed into our secret language. Before I was out of diapers, I became his interpreter and constant companion. I would translate these noises–he’s hungry; his stomach hurts; he’s afraid to go to bed–and then supply him with answers in the same grunts and whines that only we understood. When I was three, and Joe was nine and needed his tonsils out, the doctors arranged for me to have mine out as well; I didn’t need the surgery, but I was the only one who could tell the doctors and nurses about Joe’s progress, and it was the only way I’d be allowed to stay by his side.
One of my earliest memories comes from soon after our time in the hospital: I’m standing in the back of my mother’s station wagon, my arms around the headrest, when my mother turns to me and says, “It’s time for you and Joe to talk to each other like everyone else talks.”
I don’t remember my part in teaching Joe to speak clearly, but eventually–with my mother’s continued faith and dogged resolve, and lots of help from friends and relatives–Joe was eventually able to attend a special school. Slowly, with the patience of many people and my mother at the helm, my brother slowly transformed into the very loving, intelligent, and charismatic person he is today.
When my mother passed away during the night in July 2000, Joe was a month shy of his fortieth birthday. He had been living in a private group home for six months because my mother thought it would help him become more independent. And though she never cited it as a reason, we all knew that she also wanted to spare him the daily confusion and pain of her progressing cancer. I don’t think, however, that any of us actually considered the moment when she would be gone and we’d have to tell her son. Of course Joe knew that she was sick and that one day she would be going to heaven, but we weren’t prepared for the next morning when he walked in the door, eyed the crowd of his silent relatives calmly, and announced that he would be right back; he had to “check on his sweetheart.”
“Hold on a sec,” I said, because everyone was looking at me, waiting. I delivered the news as gently as I could: Mom died last night, and she was in heaven now.
“Nuh uh,” Joe said, eyes wide behind his glasses.
“She did, buddy. She isn’t in the bedroom. She went to heaven last night and she isn’t sick anymore.”
“Nuh uh, Miscell.”
“I want to see,” he said, so we walked up the hallway together.
We stood close in my parents’ bedroom doorway, staring at the bed. How empty it looked without her there. As I waited for my brother to absorb her absence, my mind started racing: How would we ever care for him with the same devotion? How would he ever recover from this loss? How would we all recover and make our way without her?
My brother finally turned to me. “She go to heaven?”
“Sure? Sure, Miscell?”
He didn’t cry until the funeral a few days later, but throughout the entire service you could hear him talking loudly, incoherently, between his sobbing. At times the priest had to compete with Joe, but he didn’t falter once as he praised my mother and her many accomplishments. And when he said that he was positive she was looking down on us now, that God had surely invited her instantly to His side because of the sacrifices she had made in her life, every head turned my brother’s way. I knew what they were thinking, because I was thinking the same thing: what happens to him now?
For months afterward, Joe and I would have the same conversation over and over again on the phone–me in Ohio, finishing up a graduate degree, him in the group home he would leave soon after to move back home because living away felt like a double loss in the end. “I miss her,” he would say simply. “I thinking about her all day sometimes.” All I could say back was, “Me too.” Some nights this would be enough, and some nights there was a long silence that followed, where all the words we learned together would fail us completely.
But here is the hardest part of my story with Joe, the embarrassing truth that has taken me years to admit: despite my special bond and love for my big brother, despite the fact that I would willingly and gladly fight to the death to protect him, the prospect of caring for a person who learns simple tasks slowly and then forgets them quickly, and who will never, ever stop needing me, makes my heart pound with terror. Writing about this, and the deep shame that accompanies my fears, is almost impossible. After hours of trying and failing one night, I finally e-mailed a friend for suggestions, and she e-mailed me back with this advice: Write a letter to your mother. Time it, and try not to edit. Write it like no one will ever read it. So I did, and here’s what I came up with:
Mom: I’m scared to live the life you lived. I’m afraid to do and say the same things, day after day, because I know Joe needs this but I’m afraid what it will do to me over time. I don’t have your courage, and I don’t want to remind Joe to swallow ten times a day because he’s drooling again. I don’t want to lose my temper with him because his clothes are everywhere in the house except where they belong, in his drawers or in the hamper. I don’t want to remind him to wash his face, brush his teeth, take his meds, leave the cat alone, pay attention, put his pad and pencils away, find his glasses, go to the bathroom, make sure you wash your hair in the shower, stop messing with the cat, focus and sit closer to the table, because you’re spilling pasta/cereal/ice cream/soup on yourself and on the floor, go back and wash your face because half of it is still dirty, remember to shave, take your meds, did you take your meds, and sure I’ll stay home with you again tonight, of course I’ll play another game of Fish, another game of War, and of course we can go to back to Chuck E. Cheese, but wash your face, it’s still dirty, and make your bed, and pay attention, and be careful, you’re stepping on my foot, and please please leave that cat alone, and I already told you three times to take your meds so will you just stop fooling around and do as I say? I don’t want to lose my temper because I’ve reminded him to do the same things he’s done every day for almost fifty years but still forgets, starting with almost the second he gets up in the morning. I don’t want to yell but I know that some days, maybe more than once a day, I will reach my limit like you did at times, like Robin does now at times, and even then, after I yell and feel horrible and apologize profusely, I know he’ll still forget and we will begin all over again. I’m afraid what this will do to me physically and mentally. And I’m afraid that no man will ever want to be a part of this life, or be able to love both me and Joe, and I’m afraid that he won’t want to be Joe’s brother-in-law and step-father all in one, and I’m scared to death that he won’t appreciate the man and the child that coexist inside of Joe, and that one day he will get tired, and he will pack, and he will walk out the door. I’m afraid that I will want to go with him. And mostly, mostly I’m just terrified, right down to the core, that the brother I adore so much will be a burden instead of one of the greatest joys of my life, like he is now. I’m not you, Mom, not even close, and I’m terrified to do your job for the next forty years. I’m ashamed to admit this, but it’s the truth. I need you here to guide me.
Last summer my family–Joe, my Dad, Robin, and John–came for their annual visit to North Carolina. Each day we went to the beach, and each day my brother spent most of his time digging an enormous hole in the sand–his favorite thing to do. And as always we teased back and forth with him, and held hands with him in the ocean, and helped him clean up after half his lunch ended up on his face, arms, legs, and bathing suit. And as always, too, on this visit I lost my patience with him at least once (white couch + Joe + chocolate ice cream = disaster) while also marveling not only in his enviably happy nature and his sharp sense of humor, but his childlike and not-so-childlike reactions to his world. One day drawing a distorted face on his ever-present pad (“this your face,” he giggled, adding pimples and a too-big nose and waiting gleefully for my threats of payback), the next revealing the inner life I often forget exists. Like he did one day at the grocery store a few days after they arrived.
“Because I retarded?” he whispered, and I turned and saw the two adult men staring at him.
I glared at the men briefly. “No, Joe, because you’re special,” I said.
“Different,” he insisted. “Wrong somehow.”
“Special,” I insisted back. “Everyone can see.”
His doubtful look said he’d let it go, but he knew better.
As always on these visits, my brother had the unique ability to exasperate me, make me laugh until the tears starting falling, and break my heart … all in the same day.
On the last night of vacation we went out for Italian and at one point I leaned towards my father and said, “Dad, I don’t know why I always forget, but when did mom die again? Was it the 24th or the 27th?”
“I think it was the 23rd,” my father said, and then my sister Robin interjected: “No, Dad, you’re thinking of her birthday, March 23rd. I think she died on July 27th.”
“Robin’s right, it was the 27th,” John confirmed, and we went back to our meals.
Although the question and answers were casual, we didn’t feel casual: she was missing in this family, still, and we always found a reason to talk about her. Tonight it was about the date of her death, but it could have just as easily been a comparison of her Bolognese to the one I was eating beside my big brother.
A few minutes later, my father’s serious voice interrupted my conversation with Robin. “Joe has some questions for you, Michelle.” His eyebrows shot up an inch. “About death.”
Joe’s eyes were troubled when he turned to me. “I want to know, I don’t know,” he began, “but when you die, you just go up to heaven and walk around? Or–or does God give a new body for down here and then you a different person walking around? You think and eat the same things from before? Or what the new body wants?”
Two nights before, in a different restaurant, Joe sat in the booth ignoring his burger and fries, his full attention captured by the blue balloon he insisted I tie to his wrist despite John’s teasing. Wide-eyed and completely transfixed by the way it floated back and forth under the air-conditioning vent, he moved his arm over the table, guiding the balloon as his lips mumbled silently, delightedly. He didn’t notice the sentimental, teary looks we exchanged and have for years, the words as clear as if we had spoken them aloud: forever a child.
But on this night, like so many others, I was reminded again: my forty-nine year old brother was not a child–or, at least not always. Sometimes he was a grown man who was preoccupied, like most adults, with life’s mysteries.
I tried my best to answer Joe’s questions about death. I told him that some people believed that our souls were passed onto different bodies, and that this was called reincarnation; I told him that others thought that when our bodies died the energy inside us could pass into other living things, like trees; I told him that still others believed our bodies were shells, and when we died we went to heaven, where life was perfect and we didn’t have to worry about our bodies getting sick or hurting anymore. That this is what our mother believed, too.
“Just souls floating around up there?” he asked.
“Kind of, I think.”
He screwed up his eyes at me. “No tree. I take a new body.”
“You don’t want to go to heaven? It’s supposed to be really cool up there.”
“Cool?” His eyes grew big behind his glasses. “How?”
“Well, like you’re always happy, and you can eat whatever you want.”
He looked across the restaurant for a moment, then back at me. “Chocolate?”
“Tons of chocolate. Rivers of it that you can swim in and drink.”
“Oh.” He nodded, satisfied. “Okay, I pick heaven now,” he said with a grin.
Almost daily now, I think about my mother’s refusal to accept the future the doctors forecasted for Joe. I think about her determination to keep her son close and help him thrive, and I wonder how long it took for her to truly understand and accept that she would have a “forever child.” I wonder how she felt knowing that Joe would never leave her sturdy nest, that he would never discover his own path in life so that one day she could enjoy a well-earned, peaceful retirement with my father. And I wonder, since it will be my job one day, how she managed a lifetime of guiding Joe through the seemingly mind-numbing repetition of their days and nights together. Sometimes I try to imagine how I would have reacted when that doctor, so long ago, said that the best option, the easiest option, would be to send Joe to an institution. Would I have considered this easier path, even for a few seconds? I don’t think so, I hope I wouldn’t have, but I do know that this sort of speculation was foreign to my mother. She was a strong woman, and she wasn’t concerned (not at nineteen, not ever) with the easy road in life. And although she rarely discussed her difficulties raising Joe, she told me once that she left that meeting knowing her son would walk and talk and have not only a meaningful life, but a wonderful one, full of family and friends and love–and she was right. I may have helped Joe’s transition into speech in a very small way, but it was my mother who taught him everything else. She helped him become a confident, intelligent man while also nurturing the boy who still loves to draw pictures and blow bubbles in the backyard and write letters to Santa every Christmas. My mother’s amazing strength and love turned my brother from a would-be “vegetable” into a strong, happy man and a strong, happy child. Because of her, Joe is my little and big brother, and he is exactly right, exactly as he is.