When I married my best friend, Noah, we were young, healthy, and so excited to start a family together. We expected our family building journey to be simple. But, we struggled with infertility.
Three years later, our miracle babies found us. We were ecstatic to have twin boys on the way. We named the twins Micah and Zachary early in the pregnancy. All of my appointments went smoothly. I was healthy and did everything right. My pregnancy was perfect until it wasn’t.
At 25 weeks gestation, I went into preterm labor. I was hospitalized and placed on strict bed rest. Our goal was to make it to 28 weeks.
Unfortunately, Micah and Zachary were born at 27 weeks and 5 days gestation. They each weighed about 2 ½ pounds. I did not get to see or hold them after they were born; they were immediately taken to the NICU to fight for their lives.
I struggled with profound guilt and anxiety. I hated myself for not being able to protect my babies and keep them safe. The alarms, medical jargon, machines, and NICU scene were overwhelmingly frightening. My babies were so tiny, tangled up in wires and cords. I was afraid to touch them because I thought I would hurt them. I didn’t know how to be their mommy. I fell apart when I left them at night. I was a mess.
Thanks to the boys’ nurses and my family, I gained confidence and competence. I did everything possible to give Micah and Zachary the best chance at a healthy outcome. I expressed breast milk every two hours around the clock. I kangaroo’d them every day. I learned the NICU language. I stayed involved in their care. Micah and Zachary struggled, but overall, they were gaining weight and making steady progress.
When the boys were six weeks old, Micah developed necrotizing enterocolitis and became critically ill. Necrotizing enterocolitis sent Micah into a downward spiral that resulted in end-stage renal disease and intestinal resection, not to mention a host of other life-threatening complications. Nearly six months after the onset of his illness, we accepted that Micah would need a kidney transplant. We finally brought Micah home, but he still needed to be back at the hospital six days a week for hemodialysis. Despite our efforts, Micah hovered around 9lbs for months. The bowel resection made it impossible for him to absorb the nutrients he needed to grow.
Micah fought and surpassed everyone’s expectations. Despite his struggles, Micah’s smile and eyes told me everything would be okay. He was not only going to live, he was going to thrive.
I was in the middle of planning Micah and Zachary’s first Christmas and birthday when Micah took a sharp turn for the worse. As the day played out, the situation grew very dim. By mid-evening, the news of Micah’s life coming to an end was spreading to our family and friends. It felt like a nightmare.
I hoped for a miracle.
I hoped that Micah’s kidneys would suddenly wake up. I hoped that somehow Micah would turn everything around and we’d all go home together.
Then, I realized there would be no miracle. My baby was leaving this Earth and I could not do anything to stop it. His time here was over. I didn’t get to keep him. I would have to say goodbye to my precious Micah and all of the dreams I had for him.
I didn’t think I could do it. I told Noah that I could not let Micah go as I held him. His last breath, his last heartbeat, could not be in my arms. Noah insisted that it was best for Micah. His life started with me. It should end with me. And so it did.
I am blessed that Noah and I had hours to say goodbye to precious Micah. We sang to him. We made hand and footprints in his favorite storybooks. We hugged, kissed, and snuggled him tight. Micah knew he is deeply and forever loved.
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.
My grieving heart needed ways to stay 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. One person stood out: our children's hospital's music therapist.
Through our journey, we found that music provides calm amidst chaos and peace in times of heartache. Music transcends time and space, so 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. It’s almost like we’re experiencing Micah’s joy, as other families benefit from the Micah Smiles Fund.
Thanks to the generosity of our family, friends, and perfect strangers, the Micah Smiles Fund has raised more than $80,000. The Fund is being used to start a fellowship program for recently credentialed music therapists. The first Micah Smiles Music Therapy Fellow was just named and will continue to grow the program. We are comforted knowing that the healing sound of music will reach more families because of Micah.
There is no healing with the loss of a child. I have learned how to live with my loss, but I have an everlasting heartache that runs deep into my soul. It is a part of me and always will be. And I want to keep it that way because that ache in my soul is Micah.
This journey has given me strength, compassion, and endurance that I never imagined to be possible. I am grateful for the richness that Micah has forever added to my life. Giving back to other families is one of the best ways for me to stay close to Micah. I find peace knowing that other families are better off because Micah lived.