jen groeber: mama art

4 kids in 3 years: reflections on motherhood, art and life.

My Brother and the Silence

Dad, Butchie, my sister, younger brother and me, summer 1977

Dad, Butchie, my sister, younger brother and me,
summer 1977

I remember it like this. It was the summer of 1980. I was nine.

It was six months after the operation, and my father was so weak that my mother would drive him to work and sit outside the door of his office in case he needed her.

That left me to babysit my brother, Butchie. I would lay on the floor at his feet and watch television all day long. While the heat soared outside and the pool sat unused, I would sprawl on the floor under a blanket, with my feet over the air-conditioning vent on the floor, literally cooling my heels. And we would watch television: Brady Bunch, Woody Woodpecker, after-school specials about teens using heroin or wheelchair-ridden after a car accident.

I distinctly remember there was one docudrama about a young girl who lived out her young life in a crib on a ward, with only the view of one small window across this sea of crying, drooling, screaming bodies in cribs. There was a voice-over as she told her own story. By the end of the movie a nurse had realized that there was an intellectually developed person held prisoner in this body they stored in that crib. At the end of the movie, she sat with her thin hands curled under her chin, and she typed out her story with the help of an aide, free from the institution.

This was worth checking out.

And so I stood and leaned over my brother and held his face thisclose.

“Are you in there? Do you hear me? If you communicate with me, I’ll tell the others.”

He sat with his hands clasped tightly over his head. I think he rolled his eyes, dodged my gaze, probably pulled my hair. And except for the drone of the ever-present television, there was silence.

That summer eased into fall and then winter and then years rolled by. After I left for college, it was my father and my brother who I missed the most. Neither talked on the phone, one because he was too worn out, the other because he didn’t talk at all.

When I returned from college for my first Thanksgiving since moving away, I remember sitting next to my brother’s bed late into the night. I sat in front of the television, him in his adult-sized hospital crib just behind me, and I remember leaning the metal chair back until it braced against the bars of his crib, his face thisclose, peering over my shoulder at the television, Seinfeld or The Simpsons. I was enveloped in the slightly spoiled milk smell of his sheets, lulled by his ragged phlegmy breath, at home again. The cartoon wallpaper, the warmth of the room, the hum of the television, all seemed frozen in time.

Butchie, in his crib 1993

Butchie, in his crib
1993

It was in that moment that I realized that the only way to be with him was to be with him. And for the most part, I no longer belonged. I’d return for holidays and summers, but never again would I truly live in the house, exist without time or purpose, right there next to him. The throwaway moments that were the foundation of our experience of one another, these were gone.

When I went away, in his mind’s eye, where did I go? Had I simply left the room or did I cease to exist?

When my father died in 1997, I returned home for the funeral, along with my three other siblings. The week is a blur: smelling my father’s pillow, creating a photo album of his life, a visit from the pastor who didn’t seem to know him all that well. I think we brought my brother to the funeral home before the wake. I can picture him walking with his heavy steel braces up to the casket, him standing there with his hands clasped tightly behind his head, me telling my brother that my father had gone and that he wouldn’t be back for a very long time. I think Butchie went to sit in a pew to rock back and forth, hands clasped, yelling out once or twice, but mostly silent.

After that my mother sold the house, bought a small condo, found caregivers to help with the care of my brother. We’d all return home or gather for holidays, but not in the same way. For all of us, our gathering time became shorter, harder to manage.

In 2009 my mother called me home to say good-bye to my brother. Now a mother of three myself, pregnant again, newly moved to Massachusetts, I hopped in my car and drove. He was living in a nursing home in New Jersey; a stroke had left him unable to walk. He’d lost all his teeth. His hair was shaved short. They spruced him up with the cologne we sent him for Christmas, dressing him in the Old Navy, boys’ size 10 sweatsuits we’d buy.

Butchie and I 2009

Butchie and I
2009

I spent that day sitting with my mother, meeting the nurses, telling Butchie to take his medicine, watching them change his diaper. Before I left I held his face thisclose and I told him it was okay, that he’d done enough, that he could be finished.

Butchie died in 2012 at age 50. I hadn’t gone home since moving and hadn’t seen him since that last visit three years before. And part of me is ashamed. I was his champion, singular in that way we each see ourselves in relationships that exist outside the realm of the concrete world. I had left this person who had formed me for the four children and happy home I had formed six hours drive and a hundred years away.

My mother asked me to write his eulogy, and I did, telling tragic, funny, sad stories of how his strength had formed us each. Fifty years without a word, and the chapel at the nursing home was full. People sent notes from afar, doctors and nurses, teachers and caregivers. Fifty years of silence.

Maybe it’s okay that I didn’t go home to see him again. Butchie’s world was his own. When we weren’t there, right there, sitting through another episode of Jeopardy or Happy Days long into the night, until he snored and snuffed in his sleep breathing out the scent of milk, perhaps we really weren’t there at all. Or worse, maybe he understood our absence and resented our return because in the end, we could always leave again.

But I’d like to think that behind those blue eyes there was a sense of memory, living, breathing, milky, indelible memory, like the ones I carry with me now. Perhaps we never left him, even when we did, even my father. Because despite the fact that I saw him laid out in a coffin in New Jersey, I swear that Butchie is alive and vocal in my heart and mind. He is living and providing meaning in the world I’ve created for my students and children every day. In my mind’s eye, Butchie is sitting, curled up in his smelly chair, right next to my father on a gorgeous beach somewhere, and they are both at peace, both having said all they came to say.

Butchie, 1992

Butchie, 1992

(This post was written as part of a WordPress Weekly Writing Challenge called, The Sound of Silence. To read more about my brother read Lederhosen and I Love the Word Retarded, and It’s a Complicated Love)

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49 comments on “My Brother and the Silence

  1. Burns the Fire
    February 20, 2014

    This is a love story to tell and re-tell. Deeply touched. Thanks for sharing.

    • jgroeber
      February 20, 2014

      Oh, I like that. A love story. Thank you for that.

  2. Nicki Daniels
    February 20, 2014

    This is a powerful story. Beautiful.

    • jgroeber
      February 20, 2014

      Great to get these thoughts into words, but my constant need to use humor as a shield has me humming, “He ain’t heavy, he’s my brother.” Because it’s hard to be serious, especially about serious stuff.
      So glad to see you back in the blogosphere. Sometimes a little hibernation is just the thing.
      (And thank you.)

  3. giselacarmona
    February 20, 2014

    I enjoy so much reading you… thanks for sharing!

    • jgroeber
      February 20, 2014

      Thank you for stopping by. I’ve enjoyed your lovely blog as well.

  4. ianmooremorrans
    February 20, 2014

    Very moving and well-written story. Bless you for sharing it.

    • jgroeber
      February 20, 2014

      Thank you so much for stopping by, reading and commenting.

  5. Pingback: Weekly Writing Challenge – The Sound of Silence – 17 FEB 2014 | Joe's Musings

  6. momasteblog
    February 20, 2014

    This is so beautiful. Very touching indeed.

    • jgroeber
      February 20, 2014

      Thank you. It’s always wonderful introducing people to my brother, Butchie.

  7. Kim
    February 20, 2014

    Jen, this is beautiful!

    • jgroeber
      February 20, 2014

      Thank you! And thank you for reading and commenting.

  8. mbheri
    February 21, 2014

    Jen, this was real and something very close to your heart, we all have our lives and have to exercise that difficult choice of moving on when we feel a part of us is left behind, Butchie was blessed to have you in his life, am sure he would have known and appreciated that, sometimes, some things are not said but, they are heard and cherished.

  9. Margie S
    February 21, 2014

    Such a beautiful tribute for a beautiful soul!

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  11. Michele
    February 21, 2014

    Such a touching post. Butchie was so lucky to have you as a sister. You cared for him and loved him so deeply. I know that he felt that. I just know it.

    • jgroeber
      February 22, 2014

      Oh, now. Look who’s making who get choked up. So meaningful because you knew Butchie, too. Thank you for always reading and for commenting. LYLAS

  12. Amy Reese
    February 21, 2014

    Jen, what a riveting post, so heartfelt and filled with love. People can live in our hearts and change us in ways we ourselves can’t even understand sometimes. His silence spoke volumes to your heart.

    • jgroeber
      February 22, 2014

      Good to see you back in the blogosphere, Amy. You’ve been missed. And thank you.

  13. samara
    February 22, 2014

    This is beautiful and moving and incredibly written. Thank you.

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  15. naomicharlottejones
    February 22, 2014

    I also remember thinking my disabled brother was in there and asking him to come out. This story is beautiful.

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  18. anon
    February 24, 2014

    What a powerful read – what a powerful story!
    Beautiful.
    Love is written all over this post.

    • jgroeber
      February 24, 2014

      Thank you for stopping by and for the kind words. It was a great prompt to connect to so many things in our lives, right?

      • anon
        February 25, 2014

        Jip – I couldn’t agree with you more!

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  20. Perfection Pending
    February 24, 2014

    Jen this is so beautiful (as always). You capture that time like I was there living it with you. That’s an amazing thing about writing. You do it so perfectly every time. It’s interesting to think about why some souls are put on this earth trapped in bodies that don’t work like the rest of ours. My belief (largely based in my religious beliefs, of course) is that people like Butchie were too good to have to endure the trials of this life. God didn’t need them too. Because they were too good when they came to earth and did not need any testing, or growth like the rest of us do.

  21. HBG
    February 24, 2014

    Feeling fortunate that I was able to meet Butchie on several occasions during and after college. Knowing who he was helps me know you better. I love that. Thank you for writing about him.

    • jgroeber
      February 28, 2014

      Thank you for that beautiful comment, my dear. Knowing him really does help you know me better.

  22. Ann
    February 25, 2014

    Wow, so well written and such a touching story. Thank you so much for sharing. Absolutely beautiful.

    • jgroeber
      February 28, 2014

      Thank you so much for reading. It’s always the sillier posts I think it’s easier for people to connect to. I appreciate you connecting here.

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  25. I’m not that much of a internet reader to be honest but your blogs
    really nice, keep it up! I’ll go ahead and bookmark your site to come back later
    on. All the best

  26. O
    September 29, 2014

    thanks for sharing your article. I have a friend who also had a special needs child who was severely handicapped. My friends daughter also slept in a Big adult size crib until sometime towards what we didn’t know was the end of her life. She passed on, and sometime after word long after I forgot about the crib, things unfolded and something I saw in a dream years ago came true; I got a secondhand adult size crib in addition to my other one. I feel right at home in these beds, (and I always have). No matter the situation, the ability to be able to sleep in one of these cribs is a very unique blessing not everyone has. Having such a blessing doesn’t necessarily mean something is wrong with the occupant, they’re just blessed in that way. Again, thanks for sharing your article with the pics.

    • O
      September 29, 2014

      I’m using voice on an iPad, so please forgive the typos that it made.

    • jgroeber
      October 1, 2014

      Such an interesting connection you’ve made to this part of my family’s story. I always loved to crawl into my brother’s crib with him to feel connected. And how strange to have returned to a crib after a dream of such a thing yourself. That crib always was a safe place, even if it contained his pain and frustration, too. Thank you for reading and commenting.
      (Also, my visually and hearing impaired sister uses voice on her phone to send texts, so with her subtle speech inflection her texts sound always exactly like her voice, even if they don’t read clearly to anyone else. Which is to say, I knew exactly what you meant.)

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