We’re excited to introduce you to the always interesting and insightful Hillary Ramos. We hope you’ll enjoy our conversation with Hillary below.
Hillary, thanks for taking the time to share your stories with us today We’d love to hear the backstory behind a risk you’ve taken – whether big or small, walk us through what it was like and how it ultimately turned out.
Absolutely, thank you so much for having me!
I’m coming to find that life is made up of a series of risks that we either choose to take or we don’t. To give this question the answer it deserves, I’d like to go back a bit and talk about a series of risks in my life that have each served a mighty purpose.
My name is Hillary. I am a Christian, a wife, a licensed physical therapist who left clinical practice to be a stay-at-home-mom, an author, and the mom of a child with special needs. And I can say with utmost certainty, that I never imagined my life would turn out this way. Never in my wildest daydreams did I imagine that I would be writing for a feature piece for something like this while my medically complex daughter sleeps with her supplemental oxygen in the next room. I spent eight years after high school studying to earn my doctorate degree in physical therapy. I had a plan.
My plan included getting a specialist’s certification in pediatric physical therapy and possibly doing a residency program at our local children’s hospital – the hospital we are now frequent flyers to, as a matter of fact. My plan included my husband, Josh, and I paying off our student loans in five years and having a house full of kids – four, at least. We would travel with them to places I had never had the opportunity to see. We would have a white farmhouse with a big yard and an oversized kitchen table full of never ending art projects. I had a plan.
Yet, here we are…in a completely different phase and direction of life that we ever could have imagined. So, how did we get here? A series of risks.
When the pandemic hit in 2020, we quickly came to the realization that the plan we previously had to do “all the things” may not be the plan we were called to pursue. Despite how much I loved my job as a physical therapist and all of my patients, I was burnt out and desperately wanted more time with my family. I chose to become a stay-at-home-mom and made that transition in April of 2021. That was risk number one, and with it came the freedom to explore a life beyond a career that I originally thought was safe and best to pursue.
In May of 2021, I self-printed my first major writing project and sold every single copy of it – with no paid marketing and the work of my own two hands. That was risk number two, and with it came honing of a skill and fueling for a passion I had long forgotten I possessed.
In October of 2021, we found out that I was pregnant with our second child. We were overjoyed, and for the first half of my pregnancy, everything was good…until it wasn’t. At my 20 week anatomy scan, we discovered our daughter had many complications. We made the choice to continue through a high-risk pregnancy, trusting in the Lord’s provision and desiring to give her every opportunity. That was risk number three, and with it came growth of my faith in the face of the most challenging of circumstances.
When we welcomed our daughter, Marsaili, into this world in May of 2022, I realized that all of these risks, these twists and turns in the plan, were divinely organized for a great purpose – for us to be her parents. In sharing our story with friends, family, and on social media, I continued to cultivate my love for writing and content creation with the hopes of bringing others joy in the face of hardships.
In early 2023, I made plans to pursue a new writing project. I planned to self-print again, because I was a busy mother who was in and out of hospitals, and it was what I knew I could do. It was safe. But after sharing my thoughts with a dear friend, she posed a challenge to me: she encouraged me to seek out a literary agent and press toward the route of traditional publishing and a career as an author. I decided to go for it, and sent my idea to a literary agent named Kristy. That was risk number four, and with it came courage to try something new.
Kristy was thrilled to read my writing, which was a relief, to say the least, but she wondered if we could maybe tweak the project a bit or if I had something else in mind. I did, but it was deeply personal. It was an idea for a nonfiction book centered around our story, and it would be a project that centered around making myself completely vulnerable. But it was powerful, meaningful, and I believed in it fully. And so I sent Kristy a new proposal. That was risk number five, and with it came joy and the recognition that despite all of my best plans, the deviations from those plans placed me where I was meant to be all along.
Five major risks and other small ones along the way all led me to where I am today – an agented author with a nearly completed manuscript for a project that I believe will leave a lasting impact and serve the purpose that God has ultimately led me toward with unmatched faithfulness. While I can’t share much more (yet) about this great project, I can tell you that each of these risks have been beautifully woven together. Each moment of uncertainty, each ounce of heartbreak, each turn away from what I thought I wanted toward something different, they were all being orchestrated for something far better than I ever could have imagined.
Life is a series of risks. It is a series of well-made plans and changed ones. My hope is that when you are faced with risk, that you would not fear it. Unapologetically embrace the possibility that a risk may be an answer to a prayer or the beginning of something beyond your wildest dreams. You owe it to yourself to take the risk and understand that you’ll either find success in it, or the invaluable lessons that come with perceived failure. I can say, as someone who is a recovering perfectionist and learning to rise beyond a spirit of fear that the risks are how we learn to live. And, after all, as the legendary Robin Williams said in his role of Peter Pan, “to live will be an awfully big adventure.”
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
Sure! So, as I mentioned, my name is Hillary, and I am a wife to my husband Josh, and mother to our two children, Liam and Marsaili. We call Georgia home, and we love spending time with family, friends, and loved ones. While we spend a lot of time in and out of hospitals with Marsaili due to her diagnosis of Lissencephaly, we strive to find joy in every moment together. We enjoy traveling when we can, slow days at home when they are needed, and all of the glorious adventures in between.
I launched my brand Joyful and Rising in 2021. It wasn’t long afterwards that I stepped away from my job as a pediatric physical therapist to become a stay-at-home-mom and printed my devotional journal. That time at home allowed me to think about how I wanted to use my love for writing and content creation on social media, and my brand quickly turned from a passion project to divinely driven purpose when we found out about Marsaili’s complications. My 20 week scan revealed what’s called “multisystem abnormalities,” and she was diagnosed with Lissencephaly, a rare, terminal neurological condition, in the NICU. Over the past year, we have grieved the loss of things we had hoped for, we anticipate the grief that will come when this condition one day calls our daughter to her heavenly home…and through it all the call to find joy in the midst of our most uncertain circumstances is one we have embraced with gratitude and humility. Joyful and Rising grew from a desire to nurture a hobby to a way that I navigated a lot of grief and helped others do the same. And with the Lord’s guidance, what was once a creative outlet during a season of change has become a path toward a lifelong dream to become an author.
What do you think is the goal or mission that drives your creative journey?
So, before I answer this, I want to acknowledge a delicate balance here. While my role as a mother to a medically complex child is integral to my purpose and identity, it’s vital to remember that this identity and purpose will never overshadow Marsaili’s individuality or the challenges she faces as the child with those medical complexities. My journey with her has given me a unique opportunity to honor her by sharing her story, to advocate for her, and to amplify her voice through sharing our experiences. In doing so, though, I always want to honor that boundary between my identity, my purpose, and hers, ensuring that her dignity and autonomy remain paramount.
With that said, I believe the goal or mission that ultimately drives this creative journey is a desire to help others feel seen, heard, and understood. Sharing our story allows the world to learn that people with disabilities are beautiful and equally deserving of life, love, and opportunities. Showing others how Marsaili experiences the world serves to educate others and encourage compassion and empathy. Additionally, it helps other children and families in similar circumstances feel seen and represented.
Additionally, my faith is, of course, a major driving factor in this journey. In all that I do, I hope to spread the love, joy, and grace of Christ. Throughout our journey through medically complex parenthood, we have been witness to many who have loved us well and who have been true representatives of the love of Jesus. However, we have seen many who do not love others the way we have been called to as followers of Christ. My hope in all of my writing and content creation is to honor God and to inspire others to dig deeply in His Word, examine their hearts, and walk faithfully through the process of sanctification with the Holy Spirit, seeking in all things to demonstrate love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control.
It is a tremendous pleasure to be called to use Joyful and Rising as a platform of spreading the hope and joy of Jesus, and I pray every day that the work that I do honors our daughter and that purpose.
Let’s talk about resilience next – do you have a story you can share with us?
It would be challenging for me to pick a single story! Our entire journey with Marsaili is a story of resilience. Because of Marsaili’s many diagnoses, we are in and out of the hospital quite a bit. We had a dozen hospital stays, totaling about 4 months, in her first year of life. This road of parenting a child with disabilities and medical complexities comes with much uncertainty, and yet, we still have life to live and responsibilities to ourselves and to others. My journey through high-risk pregnancy brought with it a battle through both anxiety and depression, as well as life-threatening complications for Marsaili and for myself. The terminal nature of Lissencephaly brings the pains of anticipatory grief that we face every single day. In short…this world of medical parenthood is hard, but we’ve chosen to focus on the joys. And that makes us hopeful.
We find that joy and hope through our faith, and also through the resilience we have seen in her. Marsaili has known more pain and challenges in her short life than most of us could imagine experiencing in a lifetime. And yet she smiles – the most adorable smile, by the way. It will melt your soul. Her ability to smile in the face of everything is the definition of true resilience, and it’s honestly humbling to experience.
Each day that we move forward in the face of uncertainty is a test of that resilience. Each day that we choose to keep pushing, to keep advocating for Marsaili to receive the best care, to keep pursuing our dreams and goals outside of parenthood, to keep learning and growing to be the best parents we can be. Each day that we do these things ensures that we honor Marsaili’s spirit the best we know how and is a testament of our ability to persevere with the provision of a most faithful God.
Contact Info:
- Website: www.joyfulandrising.com
- Instagram: https://www.instagram.com/joyfulandrising/
- Facebook: https://www.facebook.com/joyfulandrising
- Linkedin: https://www.linkedin.com/in/joyfulandrising/
- Twitter: https://twitter.com/joyfulandrising
- Youtube: https://www.youtube.com/channel/UCcKC3w08npdigm5HQTV3AWw
- Medium: https://medium.com/@hillarymramos
- Threads: @joyfulandrising
- TikTok: @joyfulandrising
- Pinterest: @joyfulandrising