Our journey with our beautiful Annabelle has been anything but easy. Since June 2020, our lives have been a whirlwind of uncertainty, heartache, and, in many ways, profound love. It’s been a journey of highs and lows, but one thing has remained constant: our unwavering love for Annabelle and the fierce bond we share.
It all began in the spring of 2020 when our sweet girl was only a few years old. At that time, Annabelle was thriving. She was crawling around, drinking from a bottle, eating soft solids, and just beginning to jabber. As a parent, seeing her achieve these milestones was an incredible joy. But in what felt like the blink of an eye, everything changed. Over the course of just a few months, Annabelle lost all of those skills. The crawling stopped. The bottle and the soft solids were no longer an option. She became unable to move independently and could no longer make those precious sounds. It was as if we watched her slip away into herself, and the joy we once saw in her blossoming independence was replaced with a harsh reality.
After five long months of unanswered questions, countless tests, and hospital stays, we finally received a diagnosis: Rett Syndrome. It was a rare, genetic disorder that affects girls and leads to severe cognitive and physical impairments. This was the cause of the regression in Annabelle's skills — the very skills we had watched her develop so quickly. Rett Syndrome is a thief, stealing the things we had once taken for granted. The diagnosis was a blow, one that left us reeling, but it didn’t change the most important thing: Annabelle is our daughter, and we love her beyond measure.
“Rett Syndrome is a thief, stealing the things we had once taken for granted.”
However, Rett Syndrome wasn’t the only challenge Annabelle would face. As the years passed, we learned that she also has epilepsy, adding yet another layer of complexity to her already fragile health. There have been countless times when I’ve stood outside the trauma bay at Cincinnati Children’s Hospital more times than I ever wanted, watching the medical team work tirelessly to save her life. Each time, my heart breaks, and my mind is filled with an unbearable fear — the fear that one day, it will all become too much for her little body to endure.
In 2024, we faced what would become Annabelle’s longest hospital stay yet — a grueling nine weeks. As I sat by her side day after day, watching her struggle, I couldn’t help but feel the weight of it all. The emotional toll was immense, but I couldn’t leave her. She needed me, and no matter how exhausted I felt, I knew I had to be there for her.
After those nine weeks, we received some difficult news: Annabelle was diagnosed with gut failure. Her body could no longer process food in the way it once had. This news was heartbreaking, but we couldn’t give up. Her doctors made the decision to make Annabelle completely TPN (Total Parenteral Nutrition) dependent — meaning she would no longer be able to eat through her digestive system. Instead, she would receive all her nutrition through an IV.
As her mother and full-time caregiver, I took on the responsibility of managing every aspect of Annabelle’s care. She is non-verbal, non-mobile, TPN dependent, and requires daily catheterizations, medications, and constant attention. The level of care she needs is intense. Every moment of every day is spent ensuring her comfort, monitoring her health, and advocating for her needs.
Being her caregiver is both an honor and an immense challenge. The physical and emotional toll is sometimes overwhelming. I often feel like I am running on empty — emotionally drained, physically exhausted, and mentally taxed. But no matter how hard it gets, I wouldn't trade my role as Annabelle’s mother for anything in the world. There is nothing more rewarding than knowing I am the one she relies on, the one who can comfort her in her darkest moments, and the one who understands her better than anyone else.
There are days when it feels like the weight of the world is on my shoulders. The responsibility of caring for her, making life-changing decisions, and managing the logistics of her care can be overwhelming. But then, I look into her beautiful eyes — eyes full of innocence, love, and trust — and everything else fades away. She is my daughter. She is my heart.
Despite the hardships, Annabelle continues to inspire me every day. She is a warrior in ways I could never imagine. Her smile, her little moments of connection, the way she laughs when her dad makes goofy noises or her brother plays peek-a-boo, or the way she lights up when she hears us come into her room keep me going. She has taught me more about love, patience, and resilience than I ever thought possible.
While I hold onto the fear of the unknown, of the day when her little body might not be able to keep fighting, I place my hope and my trust in the Lord. I trust that He has His hand on her, guiding her through each challenge, giving her grace, and sustaining us all. It’s in His strength that we find the courage to keep going. Each day is a gift, and I know that no matter what lies ahead, He is with us.
“She is a warrior in ways I could never imagine.”
I love you, Annabelle, with every ounce of my being. You are my greatest joy and my most profound lesson. Through every struggle, we walk together. And no matter what the future holds, I will always be here holding your hand.
-Written By Amanda Johnson, a Strong Caring Mother
