Sophia was like no one in this world. Her combinations of conditions made her one of a kind. All of her conditions were spontaneous genetic changes, not hereditary or caused by anything specific. She had a total of 30 operations to improve function and decrease pain. Even though she lost a lot of things, she didn’t lose her sweet and sassy personality. She was so strong, loving, and had the kindest spirit. She loved to be around her family, cuddle, and laugh. Her giggle could wash away all pain and stress. Being in her presence was a gift and so special. I feel so lucky that I had 10 and a half years with her.
Courtesy of Natalie Weaver
We spent many years of Sophia’s life private. One reason was that taking her out put her at risk because of her immune deficiency. The other reason was the cruelty we experienced while out. Early on, before we knew about her immune deficiency, we would take her out everywhere. It didn’t take long to realize that most of society didn’t accept our beautiful baby. I couldn’t go anywhere without dozens of people staring, whispering, making rude comments, or altogether avoiding us. I vividly remember the moment that broke me. We were visiting Philadelphia to see a specialist. We had Sophia in her carrier, and two teenage girls screamed at the top of their lungs. As they walked away, they began laughing hysterically. This was after months and months of being treated horribly while trying to do the most basic and everyday things. Grocery store trips and running errands took so much strength and courage, and every time I was brought to my knees in pain by the way society treated my child. I never wanted her to experience this cruelty. After years of this, I decided I would protect her from knowing this pain. So, we created a fun, beautiful, and loving environment for her at home. My husband and I had two other kids who adored her and didn’t care about her differences. She was just a big sister to them. We made sure that Sophia experienced nothing but unconditional love, adoration, and fun in between her medical appointments, surgeries, and complications.
Courtesy of Natalie Weaver
Courtesy of Natalie Weaver
