A year ago today we took our 9 week old little Willa to the Pediatric Opthamologist where they were immediately able to tell us that she was blind in her right eye, with the retina detached. Later that afternoon after a CT scan, she was diagnosed with retinoblastoma. A few days later we arrived at St. Jude for the first time and her right eye was removed shortly after. One week of waiting after her surgery and we were extremely elated and relieved when the pathology results came in and she wouldn’t need systemic chemo.
It’s been quite the year. So much awful and so much amazing. This morning Dr. Wilson found two pesky tumors, growing right on top of the scar tissue left behind from her last laser treatment. I feel two ways at once. I know it could be worse, I’ve seen worse and heard of much worse. I’m thankful that lasers exist and that the tumors usually respond well to them. But I’m also heartbroken. This whole RB thing is crazytown. It’s always waiting and rarely knowing. It’s constant wondering. It’s the perfect storm to keep my already previously anxious self in some serious state of continuous awareness of the idols suffocating my Grace-given freedom from fear.
I think it needs to be okay to say it sucks. God knows I think this blows, so there’s no reason not to be transparent about the struggle, the faith-fight. I’m still singing of death swallowed whole…waiting until all that we hope will be all that we know. I just need to be sad about it all for a little while. So much awful and so much amazing.