From the night that Micah and Zachary were born three months prematurely, songs and stories became a fundamental part of their lives. We played music and read books to the twins every day, especially when the boys were too unstable to be held. Bob Huffman, Mott Children’s Hospital’s music therapist, began visiting Micah and Zachary in the NICU, early and often.
My first vivid memory of Bob sharing his music with us was in Zachary’s room, when the boys were just a few weeks old. Zachary had been intubated for a week and was really struggling; I was deeply afraid for Zachary’s health and well-being. Bob played his guitar while I stood next to Zachary’s isolette. I held Zachary’s tiny hand and hoped with all my heart that both of my baby boys would be okay and come home soon.
When the boys were six weeks old, everything changed dramatically. Micah’s development of necrotizing enterocolitis meant that Micah’s struggles would be much more intense and severe than Zachary’s. Now when Bob came to visit our family, we asked him to play for sweet Micah. Micah was too sick for snuggles, skin-to-skin care, physical therapy, and intimate interactions. But, Micah loved music.
As Bob played guitar, and when we read stories, Micah savored the sounds by slowing his heart and breathing rate, grasping our fingers, and smiling. Songs and stories were the bridge we needed to build and sustain our bond with Micah throughout his intense hospitalization. When we could not hold or hug Micah, we could still sing and read with him. Stories and song were Micah’s source of peace, comfort and joy as the rest of his world spun around in utter chaos.
One day, Bob was in the middle of his music session when Micah’s central access line suddenly went terribly wrong. Bob continued to play as Micah’s entire care team frantically prepared Micah’s room for a sterile surgical procedure. They ushered Zachary and me out of the room, and then asked Bob to stop playing and leave the room, too. Bob asked to stay. Bob knew that his music would provide Micah with the peace and comfort he so desperately needed. They handed Bob a mask and he played throughout Micah’s entire procedure.
Months later, when we lost Micah, I didn’t know how to live. Without Micah, I couldn’t eat. I couldn’t sleep. I couldn’t talk. All I could do was cry. I needed ways to feel close to Micah. I wanted to give back to other families in Micah’s name. Noah and I considered everything that brought Micah joy. We wanted to find that one thing that brought Micah joy and then give it to other families to enjoy, too. One person stood out: Bob, the children’s hospital’s music therapist.
Micah demonstrated that music provides calm amidst chaos. Music transcends time, space and all barriers. That’s why we started a fund to help expand the children’s hospital’s music therapy program. We named it the Micah Smiles Fund, because of the incredible smiles that Micah shared with us as we showered him with music, storybooks and our love. Through the Micah Smiles Fund, we are able to share Micah’s love of music with other families, and that brings us a deep sense of peace.
Thanks to an incredibly generous community, the Micah Smiles Fund has raised more than $45,000. In January 2014, barely a year after our loss of Micah, the first Micah Smiles Music Fellow (a recently credentialed music therapist) joined the Mott team and is now providing the healing sound of music to Mott kiddos – in honor of sweet Micah.
We are holding a Micah Smiles Benefit Concert on April 30th at The Ark in hopes of continuing the Micah Smiles Music Fellowship in 2015. Please join us for a special evening full of music and love as we celebrate sweet Micah. The Benefit Concert will help to ensure the healing sound of music reaches more Mott families. All ticket proceeds go to the Micah Smiles Fund that fully supports C.S. Mott Children’s Hospital’s Music Therapy Program.
I hope to see you on April 30th!!