“A hero is someone who has given his or her life to something bigger than oneself.”
I like to say that I have a front row seat to humanity. I am privileged to meet and share the stories of the most remarkable people and this week’s conversation with Kelli Kelly was so inspiring that I can’t wait to share. Kelli is a real life hero, a woman who went through enormous pain and suffering when her son Jackson was born 16 weeks premature in 2000, weighing a little over a pound. What she did with that experience is a lesson for us all.
Kelli said, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”
In 2000, after the weeks in the NICU (Neo-Natal ICU) Kelli was sad, stressed, traumatized, depressed and emotionally drained not knowing the fate of her newborn son. She said, “The guilt, grief, anguish and pain was overwhelming. Now 17 years later, I can still relate to that defining moment.” Here are the highlights from our inspiring conversation:
Charity Matters: What was the moment you knew you needed to act and start Hand to Hold?
Kelli Kelly: “When I realized that 1 out of 8 babies born in the United States is pre-term. We started as a March of Dimes Ambassador family but I realized early on that there were many organizations to support premature babies but nothing to support the families. I was looking for an organization to help me meet other families going through this same stress, isolation and anxiety and there wasn’t one to help us.
So, at first I gathered some families together at our local hospital and created a program, connecting NICU families but it wasn’t enough. In 2008, we began Hand to Hold to provide families a peer-to-peer support network for seasoned families of premature babies. We knew we needed to give families ways to survive and navigate their time at the NICU and beyond.”
Charity Matters: What fuels you to keep doing this work at Hand to Hold?
Kelli Kelly: First and foremost it is remembering what it felt like to be a parent of a child in the NICU and the impact, trauma, ptsd and stress that causes in all areas of your life. Secondly, it is the cards, the emails from the people we touch. We just started a podcast and are now hearing from families all over the world who are grateful we are sharing with them. Most of all, it is a strong faith in those difficult moments that keeps me moving forward.”
Charity Matters: When do you know that your work has made a difference?
I know we are making a difference when organizations like the Preemie Parent Alliance, realize that parents voices need to be a part of this conversation. When we were the keynote speaker at the National Neonatal Nurses Convention or when I’m speaking to national pharmaceutical companies and their employees about what is happening in this space.
We are truly trying to make foundational changes to help families to be better parents and to not only survive but thrive after this experience.
Charity Matters: Tell us a little about your impact and where you are headed next with Hand to Hold?
Kelli Kelly: We know that our impact and reach continues to expand through our national database that connects these families, through our expanding list of health care partners and because we continue to help break down the barriers to reach families going through this experience.
We started a podcast last February and have had over 13,000 downloads in 42 countries. So we know there is a need and that we continue to reach these families. That was the goal to find, connect and support as many families as we can. Our next steps are to begin our work with “Beyond the NICU” with a book and an App to help families navigate the invisible diagnosis that is a factor with preemies. We will be developing a care map to help navigate families through the process of first all the way through their child’s education.
To end where we began with Kelli’s inspiring words, “There are defining moments in our lives. Some bring great joy-others sorrow and pain. If we embrace these moments, they can mold us into new and improved versions of ourselves-one that allows us to ignite change, instill hope and find a purpose for our lives we never thought possible.”
Kelli is an inspiration to all with her purpose driven life in service of others.