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A Monkey Full of Love

15 Mar 2019, Posted by Seasons in Community
Caitlyn Williams is a music therapist at our Delaware site, and recently had the privilege of creating a stunning legacy project for the family of one of our patients.

Early one morning in October, a 21-year-old non-verbal young man was admitted onto hospice services. He had a diagnosis of Cerebral Palsy and was admitted for Protein Calorie Malnutrition. His name was Isaiah and he would leave an imprint on all of us and push me to expand my horizons as a music therapist.

In hospice we strive to provide excellent care and help our clients leave a legacy behind for their loved ones. When I first met Isaiah, I knew instantly that I had to do something for his family. It had to be something unique. Something special. Something I had never done before. You see, Isaiah’s mother had lost a daughter to Cerebral Palsy just a few years before and she was facing another difficult decision: she had elected to have Isaiah transfer to our inpatient center where he would receive 24/7 care, and to end the tube feeding and IV hydration that was no longer assisting him. I knew I had to create something that she could hold onto.

It struck me suddenly: I wanted to capture the very first sound any parent hears and the very last sound we put out as human beings – a heart beat. And the journey begins. . .

Now that I had identified what I wanted to do, I had to LEARN how to do it and I needed to recruit help. With assistance from social worker Katie, we Googled it, and, lo and behold, we found a video of a music therapist doing heartbeat recordings at Helen Devos Children’s Hospital. The irony is that I had watched this a dozen times in my undergraduate years. Without hesitation, Katie looked up the telephone number and before I knew it, I was discussing with a friendly but confused music therapist how I could do this in my hospice setting.

Emboldened with the advice and wishes of luck, I immediately ordered 3 different microphones and gathered every stethoscope I could get my hands on, and within the next 24-hours, courtesy of Amazon Prime, I had created my very own heartbeat recorder. The next day, as I sat next to Isaiah, I held the stethoscope against his chest and prayed that this would work. Ten agonizing minutes later, sitting outside of his room with my headphones on, I pressed play, and heard the most beautiful sound I had ever heard: a crystal clear heartbeat.

I still needed to recruit help, so I called fellow Season’s Delaware music therapist, Brian, who took the recording and stripped away the white noise. As Brian was working on our project, Isaiah was continuing on his journey. He died quietly on a foggy fall morning.

When I got the call that Isaiah had died, I sped to our local Build-A-Bear. It was 9:58 a.m. in the morning and I was  frantically pacing and wringing my hands like a crazy woman. Finally the doors opened and I ran to the recorders, letting the clerk know I had a toy emergency. The confused clerk looked at me as though I was crazy – after all, what is a “toy emergency?” Rushing out and grabbing a sewing kit, I made my way to our inpatient center.

Katie met me at the center and I worked to transfer Isaiah’s heartbeat to the recorder, with success. Katie took the recorder and gently sewed it into the heart of Isaiah’s stuffed monkey. This monkey had been his constant companion since he was admitted into the hospital. With the monkey in my arms, I opened the door to his room. Isaiah’s family was at the bedside, saying their goodbyes, and his mother was at the foot of his bed with her head bent. I quietly approached this grieving mother and held out the stuffed animal. She took the monkey in her arms and I pressed the heart and moved it to her ear. Her eyes widened and she looked at me in disbelief. She pressed that button over and over again. She took me in her arms and whispered, “Thank you.” I looked at her and thanked her. Isaiah would never be forgotten, as he had touched everyone’s lives.

I told her this was the best thing I had ever done and I would never, ever, forget her son. She smiled, tears forming in her eyes, and continued to listen to her son’s heartbeat and hug the monkey tightly against her face.

Later that week, Katie sent the family the recording of the heartbeat via email, so that they would have it in case anything happened to the monkey. It is for moments like these that we do what we do. It is the WHY. The reason we are hospice employees – hospice social workers, hospice nurses, hospice CNAs, hospice chaplains, and of course, hospice music therapists.