Reflections from the NICU

Seven years ago I was sitting in the NICU, holding my 5 pound baby, who seemed HUGE compared to the 2ish pounds she weighed at birth. I sat there terrified as I held her, cautious of her new feeding tube and her tiny leg that was wrapped in a hot, neon pink bandage. 

Seven years ago someone made a terrible accident and broke my daughter’s tiny leg. It was a spiral fracture that happened due to an error. Sadly, it was one of the many massively memorable moments of trauma I experienced in my first nine weeks of motherhood. But it was one of the first moments I knew I could advocate for my baby – not matter what I faced. 

Suz + 9 week old Lorelei

That same week, as we began to prepare to take Lorelei home for the very first time, I sat in our pod and watched as a tiny baby was admitted in the bedside next to us. Tears poured down my cheeks. Tears for my own trauma and heartache, tears because my baby was hurt, tears because life was not the way I expected it to be at 9 weeks postpartum. But mostly, in that moment, the tears were for that new NICU family. 

As my storm was calming, their hurricane was brewing. Their lives were about pivot in ways they never saw coming. I was terrified for future of my baby with a grim diagnosis and I was anxiously preparing to finally leave the NICU with her. I rocked her and cried, knowing that despite the trauma, we were lucky to be going home. But this family across from me… their journey was just beginning.

Suz + Stormy Benji

Fast forward to today: I am 7+ years into life as a medical mom (and almost two years into life as a bereaved mom). Benji has recently experienced too many hard mito days and my heart hurts because of it. A lot has changed over these last years: my knowledge of g-tubes, the amount of coffee I can drink in one day, and my waistline. But one thing has not changed: my hope, desire and calling to care for the caregivers who are facing plot twists they never saw coming. 

If I could hold every single medical mama’s face in my hands and tell her that “it’s going to be okay” – I absolutely would. But it’s not always going to be okay. Most of us will continue to live a life of plot twists in a state of hyper vigilance, trying to stay one step ahead of the diseases and symptoms that are harming our children.

Seven years ago I would not have believed you if you told me that in less than a decade I would have a son, lose a daughter, lose my career and then start a nonprofit that cares for the caregivers like myself. (I wouldn’t have believed you if you told me I could change a g-tube either… but here we are.)

Thank you for holding me up when I need it. Thank you for showing our community that we believe in kindness, hope and love. Thank you for supporting my family and other families like mine as we face storms, as we learn to advocate, as we scramble to make sense of a diagnosis, and as we cling to faith – trying to make sense of it all. Thank you. 

With hope, Lorelei + Benji’s Mama,

Suz

Help us continue to love on caregivers who may be home with their medically complex child, or who may be in the NICU or PICU. Support the Apricity Hope Project by donating to our Bring Home Home Campaign. This will help us keep the rays of sunshine (and the lights on) at our home headquarters.

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