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    Precious Friend

    What’s Your Victory Song?

    By Maureen Swinger

    June 3, 2020

    Available languages: español, 한국어

    • Rosalie V. Gambino

      Dear Maureen, Thank you for sharing. I have had the honor of meeting Robert and looking upon his angelic face. We have discussed how such special souls teach us so much and give so much more to us than we must provide for them. His parents were truly gifted from God. He, in turn, is gifted to have such a loving family and good, caring friends. It doesn’t surprise me that Aviana loves him so. They say Mother Theresa could see Jesus in all people. I cannot. However, I can see him in faces of children like Robert. I will pray God will cure his lungs and ease his suffering so you all may continue to be gifted with his presence. The world needs such beautiful spirits for a long as God is willing to share them with us.

    • Mimi

      It is so uplifting to know that people are serving God with full hearts. Maureen's story of how Love transformed Rob's life, the picture of the little girl gazing at him with joy and the answering smile in his eyes, the joy and the blessing of it. So many people with disabilities struggle in institutions, forgotten by society. Some years ago I was able to organize a group called Spark to help a small group of folk who were house bound. The fun, laughter and joy we shared will never be forgotten.

    • LB

      Dear Maureen, thank you for writing about Robert and his family and friends. I also read your article about Duane. There are so many threads holding you and us together in addition to the Love of God. I think of your ability to understand the challenges faced by Robert and his family because of what you learned from your teacher Duane. Your position of strength comes from having experienced great hardships and challenges. You all clearly are celebrating the life of the beautiful boy Robert -- giving and receiving joy in doing so. We have a good friend who has ALS, and for about a year now he has been able to move only his eyes. I think of the deep inner contemplation and acceptance that those whose movement is inhibited must learn to accept and even embrace. In watching Robert's 6th birthday serenade with Jean close by, baby daughter in arm, I saw myself as if in a mirror 27 years ago, holding my baby daughter and helping my 7-year-old son whose movement was severely limited by the weakness caused by leukemia. (Our son passed on in 1993. He is still teaching me.) I could see and understand the pain in Jean's eyes -- a prayer for all to be well for her son -- "I believe, God, help thou my unbelief." Child and parents are refined and purified by the suffering of the child. And we have so much to be grateful for --to hold and love such a gift from God is a gift not to be surpassed.

    • Bob Schoonmaker

      Maureen Again - thanks for sharing another moving story. As I approach my 86th birthday I reflect over the years and the many experiences I've had to witness God's grace to "special children" He has given to parents. One of our own grandchildren was born with Cerebral Palsy, and now as a 30 year old, still resides with her parents and is very limited - but reacts joyfully to emails I share with her. When I was an elementary principal I was blessed to have a student "labeled as a Downs Syndrome" child. In those days special needs students spent most of the school day in "regular classrooms." By design, she was allowed to come to "her boyfriend's office" (me) to show some of her schoolwork of which she was so proud. And there are many other examples of how God placed children in my life - that by His Grace I might experience the same opportunity that your daughter, Avi is having. Our Heavenly Father has a plan - and we should be so thankful for each opportunity He gives us.

    • Krista Palmer

      To see the higher potential of humanity in this simple encounter and activity is truly uplifting in these dark times.

    • MeLisa Crofts

      It was hard to not well up with tears reading this article because it takes on a personal tone. Knowing the small heroine of this story makes it all the more endearing! Especially since I have met the young hero on a few occasions while visiting the community! When meeting Rob, one can't help but notice the small army of young friends and family that are within reach. All supporting him, maybe some out playing a game of ball, but not so far away that they couldn't be back in a flash if needed. It's a true joy to see such teamwork! It's truly enjoyable reading stories that take on such a personal side of some of the members that make up the Bruderhof community.

    • Amy

      Beautiful! I'll admit, the love surrounding this sweet little guy in that last video clip totally made a pregnant lady cry today :-) Blessings on Rob and his incredible family and special friends.

    • Carolyn Anderson

      I love this! So beautiful — the song, the family, the singers, the article — everything! Thank you! ❤️

    • christina felten

      This story brought tears to my eyes. So much love and hope in your words. I love how sweet Avi is leading the way in showing others how to live inclusive lives. What a precious friendship they have!! I will be praying for Rob to stay healthy. I also loved hearing that old familiar song again...I'm going to have to teach it to my girls!

    • Linda

      You bring me hope thank you 💙

    There has never been a time when they haven’t shared each other’s lives. Aviana arrived first, by a month; I cuddled my little black-haired daughter and waited for my friend Jean to have her baby. We were living on the same Bruderhof community for the first time in years, and it was delightful to imagine our kids being best buddies, pottering in the sandbox, learning to swim, stepping up into first grade….

    Robert and Avi by a sunny window

    But cerebral palsy made Robert’s every milestone very different. While Avi progressed like clockwork, Rob had to work his hardest to coordinate swallowing and breathing, battling to get half an ounce of infant formula down and then keep it in. One cough would undo everything, causing a traumatic projectile spit-up that put mother and son back beyond square one, and sometimes reduced us all to frustrated tears. What do you do if you can’t feed your child? What do you do if you can’t help your friend?

    When my own brother was navigating disability in the 1980s, it was daunting for our family to hear a bleak Greek chorus of neurological prognoses – “He can’t do this; he won’t do that.” Some turned out to be true; many not. So as Rob and his parents started their specialist hospital treks, I worried about the weights that might drop on them. But one wise neurologist told Reuel and Jean, “Take him home and love him. Robert will show you what he can do.” Hallelujah, doctor.

    Cue milestones, one after the other. Cue crazy times, one after the other. Luckily, Rob has a solid family around him (three big brothers, and now a firecracker of a baby sister), an invested crew of teachers at school, and a responsive medical-therapy team. He also has the most loyal set of friends a kid could wish for, ready to cheer on every accomplishment and rally at every setback. When your friends learn to toddle by hanging onto your walker, you know they’ve got your back.

    Much of Avi’s daily activity has been within Rob’s orbit, especially when I signed on to learn his afternoon routines and care. We were all finding out together how to master G-tube meals. Tube and pump – how tricky could it be? Answer: very. How slowly do you run the pump? When is the best time to pause for water? How do you make sure no air bubbles sabotage the supper?

    Sometimes he’d burst into loud cries, putting me through the paces of all the things that might be causing pain, jangled by that panicky ache familiar to anyone who’s ever loved someone who can’t tell you where it hurts.

    two photos of Robert and Avi

    Singing the victory song

    Right at that confused juncture, a small personage would predictably appear at Rob’s elbow. She’d dodge a few tubes, plant her feet on the chair casters, go nose to nose, and inquire, “Should we sing, Rob?”

    Singing: it’s what friends do. And we don’t need lullabies at this point, or Old MacDonald – who even cares if he has a farm? We’re not singing to a baby here; we’re striking up a rhythm for a friend who has the blues. But what kind of song applies in a time like this?

    A friend might also know the right playlist. “Mom, what if we sing the songs you sing to me when I’m sad? Like the red, red robin?” (My dad used to sing golden oldies to me, because his dad sang them to him.) So that’s what we would do. We’d sing about summertime and the living being easy when it absolutely wasn’t. We’d sing about the sunny side of the street on days when the whole street was clearly in deep shade. We’d declare nothin’ but blue skies from now on, and then wonder what if that sky should fall, and decide that as long as we were together, it wouldn’t matter at all.

    poster illustrated with two birds and the words to a Pete Seeger song

    Poster in Rob’s room, art by Avi

    Rob thought our attempts were just fine. Almost always, he would whip around and lock eyes with Avi, and join the spirit of the song being chirped in his ear. We’d cycle through every one we knew.

    One song, though, rose effortlessly to number one on the charts. It’s a joyous little ditty of Pete Seeger’s, and I know nothing about why he wrote it, or who he wrote it for. Here it is:

    Just when I thought
    All was lost, you changed my mind
    You gave me hope (not just the old soft soap),
    You showed that we could learn to share in time
    (You and me and Rockefeller)
    I’ll keep pluggin’ on
    Your face will shine through all our tears,
    And when we sing another little victory song,
    Precious friend, you will be there …
    Singing in harmony,
    Precious friend, you will be there.

    After a few rounds, I began hearing a new name replacing “rocky feller’s”: Someone discovered that “Robert Clement” fits in there just fine, and that’s how it’s stayed since.

    Every one of Avi’s birthdays, Rob has come over to celebrate. And they’ve sat on the sofa and sung their song. Here’s how it sounds:

    Every one of Rob’s birthdays, Avi has made sure we all go over and serenade him in his living room.

    Except for this year.

    Avis family celebrating Roberts birthday

    It was a brutal winter already. Who needed a pandemic targeting people with fragile lungs? Rob has fragile lungs.

    He had spent most of January in bed, under a heating blanket, his oxygen numbers needing to go please-just-a-little-bit higher. Every day he wasn’t in the kindergarten classroom, Avi talked about where he wasn’t, and why he wasn’t. We went to visit him, but he was sound asleep, under three blankets, oxygen 83 percent. We sang his song, and he didn’t twitch an eyelid, but his numbers started climbing up into the 90s. (His nurse will back me up on this.) But wake up? Nah. How about in spring?

    Spring brought the virus. And though we tried hard not to let a little girl hear too much, there were plenty of adults around our house saying dire things when they thought she wasn’t listening. She thinks she understands why she’s not going to school, or to Rob’s birthday party. She only knows one person who has trouble breathing, and if staying away will help him breathe, well then …

    She’ll make sure we all go over and bellow through the window! Here’s what Rob thought of that:

    Avi sings to Robert

    Parents have the sacred burden of hearing their child’s last thoughts before sleep. These nights, we talk about turning our fears into prayers, and then leaving them in God’s keeping. The simple version of most of the prayers I hear: “Precious friend, please be there.”

    Dear God, watch over them all. And let the time for victory songs come soon.

    Contributed By MaureenSwinger2 Maureen Swinger

    Maureen Swinger is a senior editor at Plough and lives at the Fox Hill Bruderhof in Walden, New York.

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