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What’s your “WHY?”

And what if your “why” is the same as others?

If you were able to join us in Falls Church for the 2018 Preemie Parent Summit, you know exactly what it means to find your “why.” Almost every attendee has experienced a NICU stay with a preterm or critically ill newborn or endured the tragedy of the loss of a pregnancy, infant or child. Our “why” is front and center and found in almost every NICU Support Organization’s mission, vision, or purpose:
To ensure NICU and bereaved parents know they are not alone.
Sometimes, when we are just getting started with our work as advocates and support leaders, self-doubt may creep in as we see the many accomplishments of those around us. They may have paid staff members, huge grants, professional marketing collateral and proven, and successful programs. Being alongside more established leaders may make emerging leaders wonder if they have a place in this community, if their services are even needed, or if they will ever measure up.
During the “Evolution of Our Work” panel presentation at the Summit, it became apparent that the feelings mentioned above were burdening some of the attendees who are leading newer organizations. Five veteran PPA members shared their experiences of growth from a mission statement scribbled on a napkin to an actual office space and powerful board of directors. A new member stood up and said that after the pre-conference session the previous day, she went up to her room and cried. She was feeling like a fish out of water. She went on to share that the people in the room were so much further along she wondered how she fit in.
When I heard this, my heart sank. This was the exact opposite of what we want our attendees and members to feel!
This courageous new member continued on to say the following (and I’m paraphrasing here): “I came here, not as a preemie parent, but as a graduate NICU parent who has recently started a nonprofit. I felt completely alone with no idea how to effectively execute our mission. After meeting so many seasoned NICU Parent Leaders today, I feel like I’ve found my people. I have found my tribe.”
Of course, I rushed over and gave her a huge hug while one of our founding members stood up, grabbed the microphone, and said forthrightly:
“You belong here. Don’t ever think you don’t belong. We are all in this together.”
The photo at the top of the page was an image I used during my opening remarks to illustrate the number of infants born preterm every year in the United States alone. The image is an aerial shot of Woodstock showing roughly 400,000 people in attendance.
Every year 380,000 babies are born preterm, and that number does not include the full-term babies admitted to the NICU with critical medical complications. Our work is not just focused on those 380,000+ babies alone. Each of those babies has parents and caregivers who are traumatized and struggling to make sense of what they are going through and what they will face. So, you multiply those 380,000 babies times one, two, three and we are well over 1 MILLION people that need the work that YOU do.

People That Need Our Help

This depiction is for just ONE year.
There is no “cure” for prematurity right now. No magic pill ensures babies won’t ever be born with a genetic disorder or medical condition. These caregivers and parents of NICU babies need ALL OF US! They are counting on us to break down barriers whether cultural, political, socioeconomic or something else.
They deserve access to quality support and resources about the medical treatment and conditions their children are facing, and they need ALL OF YOU to enable them to become the empowered advocates those babies will need for the rest of their lives.
Remember, no single organization can serve ALL of the needs of all of these parents, year after year, and do it well. Together we can be far more effective.
There is a place for ALL of you, and your place is right here!