Our First “Diagnosis Day” Anniversary
THIS bench.
This bench is the exact location where I sat as my entire world came crashing down around me exactly one year ago today.
We had just left our appointment with the eye doctor with a diagnosis, “Neuronal ceroid lipofuscinoses.” That’s it. He gave us this scientific name, told us we would follow up with an appointment with genetics, and went on his way. He didn’t seem concerned or upset about “Neuronal ceroid lipofuscinoses” so we weren’t either.
It wasn’t until we sat on this bench waiting for the car valet that I googled it.
My eyes instantly darted to specific words that leapt off my phone.
“Fatal.”
“No cure.”
“Dementia.”
“Ataxia.”
“Blindness.”
How could this be right? Surely if this was the reality of this diagnosis our doctor wouldn’t have been so nonchalant.
When they pulled my car around I told them to park it again, because I was going back upstairs. I marched back into his office and demanded to speak with him. He didn’t seem surprised. He confirmed what I read.
I drove home weeping and honestly didn’t stop crying for several days. Then I pulled myself back together, started moving forward full speed ahead and haven’t stopped since.
Fast forward to today. August 12 2022. Here we are, same place. Same day. Same bench. But today I drove home with the biggest smile on my face. Our appointment went amazing and we are taking steps forward to enter brand new exciting territory in the fight to treat and cure this awful disease.
Today is so full of hope and possibilities.
Today is a testament to the strength and resilience of Isla.
Today is proof God is answering our prayers.
Today is the first anniversary of our diagnosis day.
And you know what?
…Today is a good day.
