Detroit Free Press sheds light: Micah was not destined to die.

The Detroit Free Press recently featured Micah’s story for the second time in less than a year. I am grateful for the support and awareness their coverage has provided in my efforts to honor and remember my sweet Micah.

Surrounded by love

Surrounded by love

Their first story focused on my first Mother’s Day without Micah…how I was coping and learning to live without him, just five months after my loss. The story brought an incredible amount of support for the NICU’s Micah and Zachary Giving Library and Micah Smiles Fund supporting music therapy at Mott Children’s Hospital. The story mentioned that necrotizing enterocolitis claimed Micah’s sweet life, but didn’t get into the details of the disease. You can check it out here if you’re interested.

A Mother’s Wish to Keep her Son’s Memory Alive in Song 

Their second, most recent, story focused on my efforts to raise awareness and advocate for changes to best protect premature infants from the devastating impacts of necrotizing enterocolitis. Specifically, the work of dozens of University of Michigan NICU mothers urging the UoM NICU to establish a donor milk program or milk bank, as well as the newly established NEC Society.

Micah serves as the epitome of preventable necrotizing enterocolitis. He was not destined to die. Micah was not a sick baby. Micah was born early, but incredibly strong and healthy. I watched Micah become sick because he could not properly digest the formula that was added to his breast milk. I whole heartedly believe that if Micah only received breast milk, he would be just as healthy as Zachary is today.

Micah, prior to developing NEC

Micah, prior to developing NEC

It is well known that formula increases the risk of NEC in premature infants. Formula fortifiers used for premature infants are a manufactured, commercialized, processed product that will never offer premature infants the robust benefits of breast milk. The nurses and parents who have witnessed their premature babies respond negatively to formula and formula fortifiers will attest that this is not a benign intervention. We do not need a stack of double blind, randomized, controlled trials to do what is best for premature infants. Sometimes all the evidence we need is right before our eyes.

Top NICUs across the country have established donor milk banks and provide their most vulnerable, premature infants with an exclusive human milk diet. Many of the barriers to achieving these goals are superficial. When neonatologists prioritize and request an intervention that can save the lives of premature infants and saves money, they are very likely to receive it. Lack of resources, funds, and superficial barriers are not acceptable arguments. The UoM NICU does not have a donor milk program and does not provide their most vulnerable premature infants with an exclusive human milk diet because they do not believe the benefits are strong enough. That is infuriating.

Please take a moment to recommend, comment on and share the Detroit Free Press story. Your support is hugely beneficial to honoring Micah and helping to protect other preemies from this devastating disease that stole my baby’s life.

Mom’s Journey through Grief Leads to Helping Others with Rare Infant Disease 

Mama love for Micah

Mama love for Micah

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Micah Smiles for Zachary

It’s been over a year since Micah earned his wings. I’ve figured out how to live without him, even though my heart still desperately aches for my sweet boy. I am incredibly blessed to have Micah’s twin brother, Zachary. Zachary carries Micah’s smile and spirit. Zachary plays with Micah’s toys. He snuggles up with Micah’s blankies and stuffed animals. He sleeps in Micah’s crib. Zachary calls out Micah’s name. He asks to see Micah’s photos and watch his videos. Zachary shares his paci, snacks, and sippy cup with Micah by holding them up to Micah’s pictures. Zachary knows and loves his brother.

Micah and Zachary

Micah and Zachary

As Zachary plays, I imagine Micah sitting next to him.

When I buckle up Zachary in his carseat, I remember what it was like having two carseats in the backseat.

When we take family pictures, I try to fill my empty arms by holding Micah’s teddy bear or toy.

Sometimes I dream of how Zachary would react to seeing Micah in person now. Zachary knows Micah’s face from all of the photos, so would he recognize his brother right away? Would Zachary smile and hug Micah? Would he shout, “Mi-Mi?!?!” as he fondly calls his brother. Then I wake up and remember, Zachary will never see Micah again in this life.

When Zachary cries because he doesn’t want to be alone, and he wants someone right next to him, I try to be extra responsive. Zachary lost his twin. That is a devastating loss, even though he does not fully understand his loss right now.

I’ve figured out how to live without Micah by keeping him integrated in our family. We do meaningful, beautiful things to honor Micah all of the time. Micah’s photos surround our home. I write and say Micah’s name every day. Micah is part of our everyday conversation. Micah is my son and always will be. I love Micah just as much as I love Zachary. I will never move on. My heart will never heal. I refuse to allow Micah to matter any less than Zachary.

Brothers

Brothers

Zachary needs to witness all of this. Children notice everything. Kids know how we’re feeling and how we’re coping. Zachary needs to know that intense grief can evolve into something beautiful.

Micah and Zachary both had to fight for their lives when they were born. Zachary could have lost his life just as easily as Micah lost his. I need Zachary to know that if he had lost his fight and Micah had lived, he would be honored, loved, and desperately missed, just like Micah. Zachary needs to know that we will never forget his twin. We will never minimize his loss. We will always be open and honest with him. We won’t try to hide our heartache or pretend like nothing happened.

I need to show Zachary how to cope with a tragic, devastating loss. I need to show him how to live fully, even though I will never be complete again. I hope to teach Zachary how to give back. Be present. Be intentional. Be mindful. I want to empower Zachary so that when he’s older, he has the tools to navigate his life effectively and effect change for the greater good.

The peace I gain by organizing Micah Smiles blood drives, book drives, and music therapy programs, enables me to nurture Zachary. These projects build a community of love for Micah that surrounds Zachary. They provide Zachary with a deep sense of connection to Micah, that transcends the barriers of space and time. They give Zachary meaningful, lifelong traditions to share with his family.

Loving his brother

Loving his brother

I need to show Zachary that it is okay to feel devastated and fulfilled. Vulnerable and courageous. Lost and rooted. All at the same time. He needs to know that intense love comes with intense loss. It is part of life. How we choose to love and then live with intense loss make the difference. Micah Smiles for me, yes. But Micah Smiles especially for Zachary.