“One day at a time, one hour at a time, one minute at a time…”
This was the thought process my husband and I shared while caring for our daughter, Addison, throughout her almost 11 years of life. Those years were filled with so much joy, love, and laughter — but also intense uncertainty, gut-wrenching fear, and many difficult days and nights.
Enduring a hospital stay with your sick child is a feeling no one can truly understand unless they have experienced it themselves. The days and nights blur together. The world outside continues moving forward while you remain frozen in the emotions, exhaustion, and uncertainty of a difficult hospital stay.
Addison was born with a rare genetic condition called Smith-Lemli-Opitz Syndrome. From the moment she was born, we knew life would never be the same. Our new reality was suddenly thrown into complete uncertainty.
The first month of Addison’s life felt like a nightmare we desperately wanted to wake up from. We received her diagnosis, watched her undergo feeding tube surgery, and then faced severe complications that led to sepsis and a lengthy stay in the PICU. I remember one morning, while driving into the hospital, I turned to my husband and said, “I just want to bring our baby girl home.”
When we arrived at her room that day, we were told she was not improving and likely did not have much time left. At that moment, we made a decision. We said, “We are taking her home today. She is going to feel the sun on her face and the ocean beneath her feet.” The hospital helped us with discharge planning, while gently warning us that she likely would not survive the ride home.
But Addison did survive the ride home.
Not only did she make it home, she went on to live for almost 11 beautiful years. Those years were not always easy. We faced countless hospital stays, procedures, emergencies, and long nights filled with fear and uncertainty. And once we welcomed our second child, we realized this experience brought an entirely new set of challenges. One parent would stay at the hospital while the other stayed home, trying to keep life as normal as possible for our son. It became a dance we learned to do — but it was painful. The guilt you feel as a parent when you cannot be in both places at once is very real.
When we were eventually connected with Palliative Care, our outlook began to shift. Our focus changed from simply surviving to making the rest of Addison’s days as happy, meaningful, and love-filled as possible.
As Addison’s hospital stays became longer and more frequent, I began thinking deeply about how we could make things easier for other parents and caregivers walking similar paths.
The burden of hospitalization is multidimensional. It is emotional, physical, mental, and financial. It drains you completely. When your child is hospitalized, basic needs often become the last thing on your mind. You forget to pack clothes. You skip meals. You sleep in uncomfortable chairs. You run on adrenaline and worry.
The experiences we had during the final months of Addison’s life became the catalyst for what would eventually become The Babygirl Foundation. In the fall of 2019, we established The Babygirl Foundation in loving memory of our baby girl, Addison, who continues to inspire us every single day.
We know firsthand what it feels like to spend day after day and week after week in the hospital beside your child. We know how isolating and exhausting it can be. That is why we created The Parent’s Closet in 2019 — to provide families with comfort items from home in hopes of making their hospital stay a little more manageable and easing even a small part of the burden. Since then, we have expanded our mission to include the Book Nook for the NICU and Pediatric Palliative Care Clinic, so parents can read to their children. We also provide snacks and even meals for families who simply do not want to leave their child’s bedside.
If I could sit beside a parent in a hospital room today, I wouldn’t offer perfect advice, because there really isn’t any. But I would share a few things we learned along the way.
Say yes when people offer help.
Create a simple list of what your family needs and let someone you trust help coordinate it. Meals, errands, rides, childcare, laundry — all of those small things pile up quickly when your child is hospitalized.
Keep a bag packed with essentials. Bring the extra phone charger. Pack the sweatshirt. Bring the snack you’ll actually eat. And always bring your child’s favorite stuffy or comfort item. Those little comforts matter more than you think, because you deserve comfort too.
And when the days feel impossible, don’t look too far ahead. Focus on today. If that’s too much, focus on just the next hour, or the next minute. That’s what we did. And that is enough.