My Love Affair With Jude


Larry Bauer ~

In August 2016, our daughter Rachel and her husband Alberto traveled up from Memphis with their two children, Noel and Jude, to visit my wife and myself in Dayton, Ohio.

One afternoon during their stay, I was sitting in my favorite reading chair beside our kitchen area. Glancing over my shoulder, I saw seven-year-old Noel playing. Beside her, lying tummy-down on the floor, was three-year-old Jude. He was in a trance, fixated on the screen of his LeapPad computer tablet, his “most favorite toy in the world.”

Seeing Jude there triggered something inside me. We’d always gotten along well. He would come to me, and I’d pick him up, cuddle with him and carry him around. He enjoyed being gently tossed in the air or having me hold his legs and raise him so he could touch the ceiling. He loved the water, and playing with him in the pool was always a great time. But now, something told me that I hadn’t really reached out to connect with him at his level.

Many times I’d wondered, What will happen to him when he grows up? How much will his limitations affect him? Will he ever live independently? Who’ll care for him when he outlives his grandparents and parents? I knew too little about the life of an adult with Down syndrome and often thought that I should learn more.

Since Jude’s birtJude photo 1h, I’d asked my friends and colleagues in family medicine about kids and adults with Down syndrome. I appreciated that there is a wide range in their abilities, and that no two people are alike. For instance, I’d learned of a young man with Down syndrome who was working in a medical school’s department of family medicine. Still, I couldn’t helping wondering what kind of life Jude had before him.

Mostly, I just loved him to pieces. How can you not love this child? You can see the vitality in his eyes in this picture. He was a delight!

Watching him play on the kitchen floor, I recognized that a part of me had held back from fully engaging with him. “Held back” is perhaps too strong; it was more that I was concerned. But I did see that, as long as my uncertainties were getting in the way of my spontaneous responses, the distance between us would remain.

I wanted no reservations. I wanted to love him unconditionally, just as I did all of our children and grandchildren.

How, in this moment, was I to make that happen? Would my doubts and reservations blunt my ability to be present to Jude and to love him?

Well, there’s no time like the present, I thought. Let me make a real effort to connect.

Who knows where these impulses come from? As in the country-western song “Timing Is Everything,” I decided, We’re in the same room and close to one another, so the time must be now, whether he’s ready or not!

My years of counseling experience have taught me that you have to reach out to others where they are. Jude was lying on the floor, immersed in his LeapPad. If I was going to reach out to him, I needed to get down on his level, literally.

Jude photo 2 I knew that once Jude was in his LeapPad trance, he could be there for a long time.

Nonetheless, I got down on my belly and positioned myself about three feet away from him, head to head.

At first he didn’t seem aware that I was there. It was a good fifteen minutes before he looked up, eyed me briefly, then went back to his LeapPad.

A few minutes later, without looking up, he lifted his right hand, keeping his wrist and elbow on the floor, and waved hello.

I really wish that I had all this on video. It was a priceless gift of understatement on his part. It made me wonder if he’d inherited his grandpa’s minimalist style of humor.

Somehow, though, through this fleeting interaction, we forged a deep connection. How do I know? Let me tell you the rest of the story.

For many months, our daughter and her husband had struggled to get Jude to sleep at night. His bedtime routine had evolved into an elaborate ritual that involved his father’s putting him into the car and driving him around Memphis, hoping that he’d fall asleep. It worked, but only after quite some time. This added a great deal of stress to their lives–Rachel and Alberto had to rise early each morning to get Noel and Jude ready for school and day care before they themselves headed off for a full day of teaching.

On the evening of Jude’s and my floor-level encounter, I was again sitting in my favorite reading chair as the bedtime ritual began.

Rachel and Alberto tried to put Jude to bed in the bedroom with his sister. As usual, he was having none of it. Preparing for round two, they brought him downstairs.

“Do you want me to put Jude to bed?” I asked.

Not wanting to burden me, they said, “No, we’ll take him in the car and drive around the neighborhood.”

“Give him to me,” I said. “Put him in my arms.”

Reluctantly, they did so–clearly seeing me as a victim of wishful thinking–and departed for another wing of the house, leaving us alone.

Jude wiggled and squirmed and twice tried to crawl over me to get to the floor and make his escape. Each time I simply said, “No, Jude you’re staying with me.” Hugging him gently, I made it clear that I would not let him go.

After the second try, he settled down and fell asleep. He was out like a light. It was over in less than fifteen minutes. You can see in this picture the reward for my efforts.

When Rachel and AlbeJude photo 3rto peeked into the room, they were stunned to see Jude asleep, with no sign of a fight.

I can’t fully explain what happened, but I believe that the connection Jude and I had formed earlier that afternoon prepared the way.

The end of this story is dramatic and heartbreaking.

A few weeks after the visit, Jude died.

He developed an infection that turned into sepsis, an overwhelming infection. It put a swift and tragic end to his brief life. Our whole family was devastated.

We will always miss Jude. Even while I grieve his loss, though, I also feel so thankful for that impulse I said yes to, that summer afternoon.

Each time I remember it, I realize that now is always the right time to act on an impulse to love. No matter when you read this, take the time today to connect with and love those you hold dear.

About the author:

Laurence (Larry) Bauer is a father and grandfather who cherishes family. He is chief executive officer of the Family Medicine Education Consortium and is a “healing warrior” who enjoys building a community of people and organizations working to create a primary-care-driven system in the US. He’s an active supporter of all those in the healing community, and an occasional writer who is inspired by the mysteries of life. He also enjoys reading, running, basketball and gardening.

Story editor:

Diane Guernsey

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Comments

23 thoughts on “My Love Affair With Jude”

  1. Jessica Bloom-Foster

    Larry,
    Thanks for sharing your beautiful memories of this sweet boy. So sorry you went through this tragedy. I will remember this.

  2. Sue McAnanama

    another tearjerker story that I will remember every time I work on forging the connections with my 4 grandchildren.

  3. Elizabeth Ruttenberg

    Larry,
    What a beautiful little boy. Thank you for sharing, my heart hurts for you and your family, I’m so sorry.

  4. Larry…what a beautiful and heartwarming story. Thank you for writing and sharing it. My heart aches, along with yours, at the ending. You have inspired me to write about our 26-year adventure trying to connect with grandson, Adam, who was brain-damaged at birth, My time with you, in the 70’s, was life-changing. You continue to teach all who know you by the course your life has taken,

  5. What a wonderfully well written story of Love and of remembering to stay focused on the important things in life. There is so much warmth in your story and I thank you for sharing it and for your great reminders of important things that make life as wonderful as it is..

  6. Read this just before heading to moms for my weekly overnight. I miss her brain and struggle to just be present with the person she has become. I will count on the feeling Jude and you have shared to help me do better. Love you.

  7. Beautiful and heartbreaking all at once–like this life, which is a blessed gift. Thank you for the reminder to seize each day and every opportunity to love, to be kind, to serve others. Life is indeed too short. Thank you for sharing your heart. Jude is precious, lovely, beautiful. So glad you shared him with all of us.

  8. Rachel Rosenberg

    Thank you so much for sharing this story, and for sharing Jude with all of us via your powerful words and these beautiful pictures.

  9. What an unspeakably moving narrative, Larry, and what a gift to have captured the image of Jude sleeping peacefully in your arms. May his memory be a blessing to you and your family, and may the connection you forged across the generations always sustain you.

  10. martina nicholson

    Thank you for this beautiful story about forming a deep connection without words. Presence, shared. Wonderful and sacred. THANK YOU.

  11. Dear Larry,

    I do not remember a story with as many responses and so quickly. And the comments say it all.

    Jacques Brel wrote “If we only have love”; Burt Bacharach and Hal David wrote “What the world need now is love…”.

    You wisely add “now is the right time to act on an impulse to love.”

  12. Thank you Larry, for your powerful testimony to instinct and being mindful every day! I’m grateful for all the lives that you have and continue to influence (including mine!)

  13. Brought tears to my eyes. As a parent and of special needs twins i have found over the years its the human touch and kindness, unconditional love that connects us in a deeper level. Thank tou for sharing about your kindness and unconditional love

  14. Larry,
    Thanks for sharing not only your family’s story but your wisdom – over the years you’ve helped me become a better physician, with this story -which I will keep in mind and in my heart- hopefully a better father.

  15. A beautiful story, and wonderfully written.

    I especially love this description:

    “A few minutes later, without looking up, he lifted his right hand, keeping his wrist and elbow on the floor, and waved hello . . .

    “It was a priceless gift of understatement on his part. “

    Both your description & the photo show that, much of the time, he was a
    much-loved, happy chid. (No child is happy most of the time.)

    We don’t know what adult life
    would have held for him.
    As he grew older & stronger, his
    parents might not have been
    able to manage him.
    Unless they were extremely wealthy, he could easily have wound up in a state hospital.

    I hope his family is partially consoled by the fact that, while his life was brief, he experienced joy and love.

  16. Larry,
    I think that Jude has a terrific grandfather: creative, courageous, and compassionate. Thank you for sharing this wonderful story with us.
    Abrazos, hermano.

  17. Thank you for sharing your story, Larry. It reminds me of the importance of connecting with those we love. Your words and your photos are touching. Jude was a beautiful boy.
    I’m so sorry for your loss.

  18. Thank you for sharing this tender story. It ends so sadly, but what I’ll take away from it is the way you noticed the significance of all those tiny gestures–from getting down on the floor at Jude’s level, to watching and waiting and noticing his quiet wave, to picking up on the vibe that this was a time for him to fall asleep in your arms. Those must be precious memories, and they inspire me to pay attention to life’s tender mercies.

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