[1]
This is the story of Micah and his amazing family. I was incredibly fortunate to meet Jenn (Micah’s Mama) when I traveled to Washington in October for the Stroller Brigade [2]. Jenn and I quickly realized that we have a very special connection-it turns out that I went to overnight camp in northern Wisconsin with her husband. Jenn’s family’s story is heart-breaking and shows the true meaning of resilience. Through extreme tragedy Jenn has found her passion and her mission-to fight for a healthier, less toxic world.
Micah’s story is also prominently featured in the film The Human Experiment [3]. Narrated and executive produced by actor Sean Penn, the film exposes the shocking reality that thousands of untested chemicals are in our everyday products, our homes and inside of us. This film is eye-opening and a must see for all of us.
Now on to Micah’s story
[4]Jenn and Noah struggled for three years to start a family; they were ecstatic when they found out they were having twin boys. Jenn did everything right to stay healthy and strong. The pregnancy was perfect…until suddenly it wasn’t. Micah and Zachary were born three months prematurely, each weighing less than three pounds.
The weeks went by and both boys grew stronger. By the time they were six weeks old, Micah and Zachary each weighed five pounds and were getting closer to going home. But suddenly, Micah developed a severe infection, called necrotizing enterocolitis. Micah’s infection spiraled out of control and left him with life threatening complications, including end stage renal disease. He also lost important pieces of bowel, which made it impossible for him to absorb key nutrients for growth.
Necrotizing enterocolitis left Micah with bowel disease, kidney disease, liver disease, lung disease, fragile bones, and the inability to grow. Micah’s necessary medical care resulted in him being exposed to an enormous amount of radiation, pharmaceuticals, antibiotics, as well as endocrine disrupting chemicals. Despite all of these obstacles, Micah and his family fought hard to get Micah to the 20lbs goal so he could receive a kidney transplant.
Micah remained in the hospital for nearly nine months before he went home for the first time. Micah was home for less than four beautiful weeks before he was re-admitted to the Pediatric Intensive Care Unit. Micah’s family was heartbroken to see all of Micah’s amazing progress slip away.
One month after he was re-admitted, Micah’s care team met for hours before they approached Jenn and Noah to let them know they needed to say goodbye to their precious baby.
Saying goodbye to their beautiful Micah was the most difficult, heartbreaking thing they’ll ever do.
Micah spent his last hours cuddled up with his Mama and Daddy. They sang to him, read him his favorite books, and made hand and footprints. Micah was peaceful, comfortable, and knew he was so deeply loved.
“No more ouchies, baby boy. No more hurt. Just peace.”
~ Micah’s Mama
What do you do after such a tragic loss?
There is no healing when you lose your child. You cope and you learn how to live without him, but your heart is broken forever. It changes every piece of you. It changes how you think, what you do, and how you live. I stay very integrated in my loss and grieve every day by pursuing meaningful, beautiful causes that help other babies and families.
One cause that is dear to my heart is fighting for a healthier, less toxic world. Our children deserve a healthy, beautiful planet. It is up to us to protect the health of our families and sustain our natural resources. Here are some simple steps we all can do to ensure our children have a healthy start to life:
- Get informed
- Choose health over convenience
- Support responsible companies
- Give experiences instead of stuff
- Speak up
Last week was the one year anniversary of sweet Micah’s passing [5] and it’s been unbelievably challenging for his family. To learn more about Micah’s short life and to find inspiration to live your life full of joy please connect with Jenn on the Micah Smiles Facebook page HERE [6]. If you would like to contribute to the Micah Smiles Fund, supporting music therapy at Mott Children’s Hospital, please do so HERE. [7]