My brother, David is one of my greatest teachers. He has never defined himself by his “challenges and disabilities.” He is pure heart. His body and mind do not dictate or determine the perfection of his spirit, and in turn he only connects with other people through their spirit.
He has no ego. Despite the tremendous obstacles throughout his life, he only gives love to everyone around him. We all have a lot to learn from David, and he still has a lot to teach us.
The first lesson he taught me at the age of two; We are not our body, we are our soul.
“Peek a boo!” I playfully yelped as I stuffed the Ernie puppet in the cabinet of my mother’s hospital room. I had hand picked him to give my unborn brother when he arrived. I was two and a half years old, and remember the eagerness to meet my new friend. I thought he would pop right out ready to play right along with me. That was my first memory of my brother’s presence in my life. The moments I remember sharing with my brother when he was a baby are palpably tender.
I would pick him up many times to my mother’s horror, and attempt to carry him across the cold, hard Saltillo floor. I wanted him with me all of the time. David was a gorgeous baby. He looked like the Gerber baby. He was angelic. I would climb into his crib every morning before my parents awoke. I would put on puppet shows with Ernie, Bert, and the rest of our stuffed animal clan.
He would lay there kicking his legs and flailing his arms with pure joy, cooing and babbling at my entertainment. He was a welcomed addition in my heart, and I was fiercely protective of him. From the beginning of our life together, I felt like his mother, his protector, his defender. David was always understood in my eyes, ears and being. He didn’t have to speak a word for me to know exactly what he was saying or feeling. He was my brother, he was perfect.
What I did not know was that my parents had been hit with a bomb. My sweet baby brother was not developing “normally.” His eyes wandered. His muscles were low tone. He could not process his food. He did not eat.
He was not reaching his milestones. He was not walking. My parents were told their son would not be able to attain a job, go to school like a regular kid, he may not speak,
write or read. David may remain in a baby like state for his entire life. My parents devoted every facet of themselves financially, resourcefully, emotionally, physically, and mentally to give David every support they possibly could.
They were determined to help David grow and surpass the blanketed potential that had been thrown on him. My mother did not see a limit to his abilities or potential and dedicated her life to honoring David’s needs. My father used his connections as a successful surgeon to seek out the best experts in their fields to assist David, from doctors, to occupational therapists, to nutritionists.
Until I was five or six, I was unaware of the consuming and exhausting nature of David’s care. I always felt loved by both of my parents and I adored my brother. I thought it was normal to spend a couple hours at the therapist’s office, watching my brother roll on balls, stack blocks and purse his lips over and over. It was all I knew. As David grew and began to walk and interact he became frustrated with what he could not express.
He would claw at me, bite me, hit me, but I did not fight back. I was his protector, his friend. My way of dealing with his form of communication was to whine and cry out to my parents. In their eyes, it was a nuisance, “Rebecca, defend yourself!” This became their mantra, but I knew he was only trying to talk to me as he knew how. I look down at my hands as I am typing and I am adorned with reminders, scars from our conversations, usually ending with blood bubbling on my skin. I still hear him to this day, each claw mark speaks these words, “I have so much to say. Do you hear me? Do you hear me? Do you understand me? I’m in here. Please do you hear me?” David was trapped.
He had so much to say, but he was trapped, yet I heard him, I understood him loud and clear. There were those times that I wish I could freeze forever. Times when we played, sang and created. We would make a bubble and live in its clear, pure, untainted safety.
Where he wasn’t trapped and I wasn’t his mother. We were friends, laughing, hugging and just being together. Not a care in the world, no doctor to visit, no motor skill to conquer. Just two children being children. As the years matured, so did we. The extra attention David received from my parents paired with his discipline and commitment to his therapies was succeeding. He was walking, talking more clearly, progressing in his school programs, he was able to eat well.
After countless ear infections and failed tubal implants he could hear well. His hernia operation was a success. His glasses blended as part of his outfit. His nightly injections of HCG to help him grow, became as routine as brushing our teeth. I was a wiz at filling each syringe with MLs of growing juice, and piercing his soft fair belly and thighs when my parents were occupied.
David’s gift began to shine through, because the soul can not stay trapped forever. He was an animal whisperer. Dogs, cats, snakes, coyotes, rabbits you name it, David would connect with them. We lived in the desert foothills of Tucson. There were several horse ranches in our neighborhood. David befriended a couple who owned one of the ranches. They would expect him almost every day after school. He would help feed the horses and assist with other chores. One late afternoon the phone rang, it was the woman from the ranch. She said that David had saved our beagle, Koko from an angry Rottweiler. She asked for my mom to come pick him up. We arrived and there stood David, holding Koko, and just a few yards, a Rottweiler tied to a tree in the front yard.
At nine years old and small in stature, David had calmed this aggressive animal, placed a rope around his neck and tied him to a tree. David could speak very clearly, he spoke clearly from his soul. Our soul knows no words, it only knows kindness as a language. David spoke directly to this dog’s soul. He did not see a separation between him and the animals. He saw himself in them and treated them with the same love a mother would her child. I was proud of him, admired him and his abilities. I knew that David possessed and honored his essence because he knew that is all he truly had, it’s the only thing we all have. As I entered my teen years, I became insecure of myself, envious of my peers, jealous of my brother, and resentful of my parents.
I began to try and bandage what I saw as an imperfection on the skin of my life. My brother was not like all of the other siblings. He wasn’t capable of the coolness the rest of my friend’s brothers and sisters owned. I tried to cloak his deficiencies by brushing his hair a certain direction, picking out clothing that I thought would mask his disabled speech and cognitive delays. I tried to fix his outside, so he would look normal. I became angry with my parents for letting him off the hook when he would battle with me, tear into my flesh and embarrass my ego.
I started to plead to the universe for a different sibling. I would wish with all my might for an older brother with muscles, a letterman jacket and a big vocabulary. That would be the bandaid to my wounded looking life.
This life of care taking, worrying, watching my brother struggle with everything he was and did. My pride and admiration of his spirit and his gifts began to fade into black. It was excruciating crying myself to sleep almost every night, praying that the kids at school would be kind and accept my brother, that he could know the ease of getting dressed and speaking whatever was on his mind, without falling over from lack of balance or stuttering because his nerves misfired. I longed for a sibling that I could share everything with. I wanted my brother to be the one I would bitch to about how unfair mom was for not letting my boyfriend come over in the afternoon, or that dad wouldn’t take us to get the latest gadget we wanted.
Silly little mundane quips that were absent from my life. I became preoccupied with being a teenager and my brother became a passing ship during those years. I became
fixated on my weight, and was swept away by the current of anorexia. I became addicted to the drug of my first love, Jason. But of course, there is that one moment that sucker punches us into reality.
I was a senior in high school, 17 years old. I woke up at 5am to screaming and yelling. (A quick background on my childhood, my parents rarely had arguments in front of us. Our home was peaceful, except when my teenage stubbornness would kick in and I would pick a fight with my parents. We were not used to unrest in our home). I was groggy and could not process what the noise was. After a few minutes after waking, I realized it was my parents fighting. That little whisper in my heart turned into a panicked scream, “my brother is hearing this. I must protect him.” I leapt out of bed and threw open my door and there standing only in his underwear and glasses quivering like a newborn puppy, was my precious brother.
I grabbed him, brought him into my room. I told him to cover his ears. I could tell something tragic had just broken my family for good, and I wasn’t going to let it break my brother. I ran to his room downstairs grabbed him clothes, dressed him, and carried him to my car. I called my boyfriend and told him we were coming over. All I wanted to do was cradle my brother as I had done in his infancy and create our childhood bubble again. Just like that, the darkness that was suffocating my purpose melted, and I was two and a half again, David’s protector.
The next year and a half was just plain painful. Everything David and I knew was taken from us. Our home, our family, our innocent idolization of our parents. As our parents divorced, we divorced our childhood. It was time for me to go to college, and so I did. The idea of my brother being tossed between my mom’s house and my dad’s house was traumatizing to my heart. I was tortured by my brother’s lack of control in the situation. I had escaped, but my brother did not have a choice.
I grappled with the concept of fairness. How is this fair? I had escaped with a normally functioning brain and body, but my brother was trapped? It was too much for me to handle, so I ignored the pain. I focused on framing my life to perfection. I moved away, got engaged, got married, got pregnant, became a mother and became trapped myself.
Meanwhile, David moved to the Berkshires in Massachusetts to attend college for children with disabilities. He was there for four years; I failed to visit him once. I would speak with him as infrequently as I would some acquaintances I have. I isolated myself from my family. I hated that my parents were no longer together. I hated that the body of my world looked disfigured and disabled just like my brother’s mind.
Hate is transient. It is short lived. It is like a gust of wind. It can not be sustained. It is perpetuated by the chaotic air of fear. Bad weather can not last forever, and neither can the fear. Over a span of years, I released my fears and adopted the action of forgiveness. Forgiveness turned into acceptance, and that acceptance sutured the gaping hole in my being. As I began to heal my body and mind, I started to sever the bars my ego erected around me.
My spirit whispered and guided me to my understanding that life was exactly as it was meant to be. Everything and everyone in my life is another brick laid in the path of my life. Every experience whether painful or joyous was presented to help me. A gift of awareness. David is the most treasured gift I have and will ever receive. He has inspired and infused me with compassion, empathy, and the ability to see the beauty and perfection in our imperfections.
My brother turned thirty years old in January. He lives on his own, in a condo in Tucson. He drives a car. He has worked for Target for over 5 years now and is one of their most treasured employees. Every person and animal that is blessed by David’s presence, is touched forever. He leaves a lingering feeling of goodness. He leaves a trail of love, because that is all he is and all he knows.
I say that David is one of my greatest teachers. He is. Recently, I finally accepted the most important lesson of my life. He taught me the most difficult lesson to learn. He taught me that I am the one who is disabled. My ego is my disability. My ego debilitates the real me, my spirit. I thought all of these years that I was the one protecting David, but he is the one who has been protecting me. He has been protecting me from everything that isn’t me, and he only sees what is me, my heart.
For David, the most abled person I know.
I love you.
Editor: Lindsay Friedman