Don’t Lose Yourself.

Don’t Lose Yourself. – A story from a Super Mom about her journey, because so often this side of the story is forgotten.

It’s easier said and more difficult to walk through, and even now, almost eight years since Oliver was born, how do I not lose myself sometimes? I wanted to write this beautiful, gracious post on how I have figured out how to not lose myself and tips for you, but I think what I’ve realized is losing me, helped me fight for that stranger in the mirror, the one that showed up after “code blue” was called on Oliver at two hours old.

I squinted as I looked in the mirror at her. She looked like me, yet a stranger still. My body wrecked, tired, and navigating a mess of grief. While she showed up every day, handkerchief wrapped around her head as a reminder to him of who mommy is, that she wasn’t just another face. I was still sitting in the delivery room receiving all the possibilities from a Neonatologist, wondering, really, what I had done wrong. She walked through the NICU doors for 21 days carrying all that she could to love this tiny baby. The sterile smell was enough to create a memory of pain for me, and as it made a home in my heart, she created more space for learning, for wisdom, for love. 

I was grief and she was hope and the day Oliver became unresponsive at home, I had to choose to take her hand. I had to choose to be the advocate, the certain one, the one that didn’t seem brave, but was brave. I had to choose to be both and that’s when losing myself seemed less painful than staying the same. I had been two people dancing around a wreckage, and that day, knee deep in grief, I yelled, “what do I do?”, and at the same time began an emergency protocol for Oliver.

It’s an awkward balance. When we give too much or don’t give enough, we get lost or we get labeled. I spent years telling a story. A story that gave me permission to grieve and connect with others. It was a story, at the time, that needed to be spoken. It was a story of a mother’s unexpected journey into motherhood, what I really experienced. It was a story that we, she and I, told together, grief and hope.

As grief has moved and changed, as hope no longer holds such a heavy load, I look in the mirror and gazing back at me is one mother. One who watched her first born code in the room, receive CPR, and be whisked away, emptying a once full room. Joy to sorrow. Noisy to quiet. One who found a rhythm in NICU visits and breathing deeply for every test and possible diagnosis. One who researched Trisomy 21. One who was scared of the future. One who celebrated Halloween 2012, going home..without a diagnosis. One who feared going home, without a diagnosis. One who faced trauma at home. Hypothermia. Hypoglycemia. Unresponsive. One who rushed, three hours to a Children’s Hospital. One who held a tiny body after an MRI…so little, crying as she cried. One who never excused herself from a room when a nurse offered that it might be too much to watch. It might’ve been. One who trained for the daily medications and injections. One who learned emergency protocols. One who hit the floor when it was all too much. One who thought she was too much. One that allowed all the words to overflow just to tell a story. To advocate. To connect with another. One who didn’t want to feel so alone. One who received Panhypopituitarism with trembling hands and a shaky voice. One who received Autism with “I thought so”. One who didn’t want it to be so. One who would do anything, learn everything, and still know there’s more. One who embraced her second baby along with Symbrachydactyly, a surprise, and yet right there, hope still. 

In all of this I found a strength that existed in the places I faced, the ones that didn’t derive courage or peace, but taught me to grab the outstretched hand in the rubble. So, today I hold grace for the two mothers dancing, one hand in the fire, the other, afraid to face the ashes. For me, grace is how both fear and hope, she and I, became a love for every part of the story. The one that gets lost every now and then and the one that stands tall amidst the burning. She is one.

-Jessica Bernardin

Are you a mom of a TinySuperhero? We would LOVE to hear your side of the story. So often moms of children with special needs feel like they lose their identity, or too often their side of the story is forgotten.We want to change this, because your thoughts, feelings and journey are so important. And you are not alone. Your story can help another mom!

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