My right eye was removed, and ever since then, I’ve known nothing other than that I’m blind on that side. Still, I’ve always led a normal, full life. As a child, I was sometimes bullied, but after I explained to my classmates about my eye and what had happened, that changed immediately. Children can be harsh, but they can also be very understanding once they know what’s going on.
When I wanted to become a mother, I wondered, “What if my child gets this, too?” That thought kept me up at night. That’s why I had genetic testing done early on. Fortunately, the risk turned out to be very small.
In 2013, our son Jayson was born. In 2015, the twins Dex and Zoë followed. But when they were 10 months old, we received the unexpected news that they both had retinoblastoma. That was a huge blow.
Both were put on their own treatment plans. Ultimately, we had to say goodbye to Dex in January 2017. Fortunately, his twin sister Zoë is doing very well and will turn 10 this summer.
I’ve experienced every aspect of retinoblastoma. What I want to share with other parents is this: don’t let fear paralyze you. There’s so much that does go well, and in many cases, a “normal” life is still possible. Trust yourself, enjoy the little moments, and know that as a family, you’re stronger than you think.
