Sometimes You Need a Reminder

We work, and we work, and we work to do good in the world, and we wonder “Am I enough? Should I give up? Have I failed?

My dear colleague and mentor, Sue Ludwig, Founder and President of the National Association of Neonatal Therapists wrote a particularly stirring message in her Thought of the Week. Sue is a beautiful writer and poet, a transformational leader and social entrepreneur that I respect with every fiber of my being. So many times she puts into words exactly what I have been struggling with and this week was no exception.
With her permission, I am delighted to share her message. While she directed her message to an audience of clinicians, it is easily translatable to the work you do every single day as NICU Parent Professional.
You Are Not Failing: A Story About Perseverance In The NICU
by Sue Ludwig
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher
Once upon a time there was a neonatal therapist adamant about bringing change to the NICU. 
She saw the gaps, the missing pieces of practice and culture holding them back from being a fantastic unit. She wasn’t alone. She and a small group of nurses had formed an alliance about the change. Slowly, collectively, the change became more of a mission than a project.
Because once they fully understood the evidence behind the change, and fully grasped the positive long-term effects it could have on the infants in their care – well, it seemed incomprehensible NOT to move forward.
In fact, they were suddenly in a hurry. How could they continue providing care in the same way when they KNEW it could be done differently, better? It nearly kept them up at night. (Ok, it DID keep them up at night.)
They sought out the correct avenues to pursue this change. The right leaders, the strategic meetings, the perfect time in the budget cycle. And yet they were met with half-hearted engagement rather than curiosity, roadblock upon roadblock, and the nearly rhetorical response, “It’s just not in the budget.”
They kept at it for months. Months turned into a year, then two.
Sometimes they took a break. One can only take so much rejection about something so important and remain inspired.
Then they rallied – new research! New evidence! Surely, this would be enough to convince the powers that be that infants deserve something better. After all, the babies cannot speak but they can feel. And in fact, they speak volumes – if one knows how to listen.
Hundreds of infants have been admitted, cared for, and discharged from their unit since the group first began advocating for change. Those infants will not reap the benefits of the groups’ efforts.
But maybe this time, maybe now, maybe the next quarter. And so it goes.
The group sticks together, remains steadfast in their mission. They find themselves in a meeting that changes everything. The right people, the right time, the best evidence. Suddenly, the brick walls crumble, there is an opening. Light! Heads nodding in agreement! Can this be happening?!
It is happening.
The advocates are beside themselves with excitement, relief, joy, exhaustion.
Months later, as one of the advocates walks past an infant’s bedside, she notes that the new practice has taken hold and that babies and families are better for it. Not just in this moment, but for a lifetime.
It was worth it.
Note: This story describes YOU. All of you. And it reflects the many changes you want to see in your NICUs. Whether skin-to-skin holding, breastfeeding, better feeding practices, age-appropriate care, neuroprotection, building small baby teams, NAS programs, or developing a solid neonatal therapy team – the process seems to be the same.
Know that you are not alone.
You are not failing. You are not crazy to think that infants deserve excellent and individualized care.
Change is exponentially slow in healthcare. (I’m sure you’ve noticed.)
The journey is long. And frustrating. Many give up along the way. Some leave healthcare altogether. You’re still here. THANKFULLY you are still here.
In this environment, it’s rare to succeed by demolishing the walls in your path. Chip away at them instead. That is what perseverance looks like. YOU are what perseverance looks like.
Thank you for speaking for those who cannot speak for themselves.
Thank you, Sue, for your inspiring and encouraging message and for allowing us to share it.
In many ways, as NICU Parent Leaders, we are met with no after no after no. We think to ourselves “I’m just trying to help. These families need our help. Why won’t they just let us help?”
Contracts with hospitals and projects with collaborators often take time. It takes time to research, time to prepare, time to present, time to discuss, time to negotiate, time to implement, time to evaluate and on and on.
Remain steadfast. You are on the right path. Change takes time. And as Sue says “Know that you are not alone. You are not failing. You are not crazy to think that infants [and families] deserve excellent and individualized care.”
Be sure to follow NANT on Facebook, so you never miss another one of Sue’s Thoughts of the Week.