World Retinoblastoma Awareness Week
Every week is an awareness week. I’ll try not to pile on.
Finding out you’ll be having a girl in 6 months is a remarkable feeling. You imagine she’ll have her mother’s beauty and smarts and your unflappability. You suddenly become keenly aware of how hard the world is on women and begin hoping for better.
The month we brought Ruby home, she was diagnosed with Retinoblastoma. For the uninitiated, I call it “bastard eye-tumor disease.” She can spontaniously develop new tumors until she’s 7 and is at risk for secondary cancers the rest of her life. She’s one of only 127 kids diagnosed it 2013 and a genetic carrier. So her kids have a 50/50 shot at being as unfortunately diagnosed.
There are a lot of things to be afraid of as a new parent. Don’t worry much about this. Odds are it won’t affect you but I want to write something on the off chance you’re one of the 127 families that might get diagnosed next year:
You’re not alone. There are smart parents, doctors, and treatments around you; you’re in good company. When you don’t feel like it, feel free to call me. I’ve developed a lot of empathy for those that suffer from this. I’m one of the crazies that believe in the unseen, that there’s a God and He likes us. So, call with caution ☺.
Ruby is turning 2 this year. She’s not yet as pretty as her mom. But in time, she’ll grow into a close second. She did get my unflappable bent — which looks good on her. I love her completely and hate that this is put on her. The future is unclear but we walk into it together and with high hopes.
It gets better,