Harlow Jean Scott was born on October 22, 2016, against all odds. Her story is one of resilience, strength, and an unshakable will to live. When I was told during my pregnancy that Harlow wouldn’t even make it to birth, I never could have imagined just how much fight she had in her. But from the very beginning, Harlow proved that she was meant for something extraordinary.
Harlow was born with a condition called lissencephaly, often referred to as "smooth brain." It's a rare neurological disorder where the brain doesn't develop the usual folds and grooves, resulting in a range of developmental challenges. But lissencephaly was just the start of the journey we would share. Over time, Harlow added more diagnoses to her list, almost like collecting badges of honor. Cerebral palsy, epilepsy, optic nerve hypoplasia, spasticity, and scoliosis were just some of the challenges she faced, along with a feeding tube that helped her stay nourished when she couldn’t do it herself. And while these conditions were difficult, they were never a reflection of Harlow's strength and spirit.
I never saw her diagnoses as a list of limitations. Instead, I saw them as milestones she overcame—one after another. Every time we got a new diagnosis, I thought, "Well, here’s one more thing Harlow is going to kick butt at." And she did. She faced each challenge head-on, never letting anything define her beyond the joy, love, and determination she radiated.
Harlow was, in so many ways, an angel on earth. She had a purpose—no doubt about it. While she may have been here with us for a short time, the impact she made was immense. I believe she was sent to do important work, and once she’d made her mark, she peacefully returned to heaven, surrounded by friends and loved ones who had gone before her.
Her life was not easy. Over the years, she battled illness after illness—RSV, pneumonia, and seizures that often landed her in the hospital. But she fought through it all, and we fought right alongside her. Just two weeks before her passing in February 2022, we had finally set the date for her surgery to get a VNS (vagus nerve stimulator) implant, a device that could help control her seizures. But despite our best efforts, the seizures ultimately took her from us.
I will admit, I selfishly wanted her to stay. I wanted to continue to see her bright smile, to hold her hand, to share in her joy. But I also knew, deep down, that Harlow was tired. Her little body had been through so much, and I knew she was ready to rest. She had overcome so much more than most could ever imagine, and she left behind a legacy of resilience that will never be forgotten.
Harlow was a beacon of hope, not just while she was here with us, but even after her passing. Her spirit continues to live on in the hearts of everyone who knew her. She taught us all what it means to keep going, to keep fighting, and to love unconditionally.
As a mother who has lived the journey of special needs, I have accumulated so much knowledge, both practical and emotional. I know how hard it can be, how isolating it can feel at times. If you are reading this and going through something similar, please know that you are not alone. I am here to share my experiences, offer support, and provide a listening ear. You can reach out to me anytime, and I’ll be happy to help in any way I can.
Harlow’s story will always be a reminder to me that no matter how tough life gets, there is always light, always hope, and always strength. Her time on this earth may have been short, but the mark she left on the world is forever.
See you later, my sweet girl. You will never be forgotten.
If you're going through a similar journey or have questions about any of Harlow's diagnoses, please feel free to reach out. I’m here for you. You can reach me at rslegacy16@gmail.com.
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