This blog post is part of a series that I began for telling our story. You can read the first post here.
On Good Friday, my sister started a CaringBridge page for our sweet daughter. It was easier for her to update than it was for us to set it up from our phones. Remember back to the days when smart phones weren’t super smart? And internet access was sometimes spotty? And you had to pay a million dollars for data if you didn’t have wifi? Yeah, this was that time.
So starting very soon, I will be sharing the posts from that site directly here, the stuff each of us wrote in the moment. Early stuff was written by my sister, but soon we had our laptop with us and began posting our own updates.
Meanwhile, here is what I remember from that Good Friday. My parents arrived at some point, I don’t remember when. Maybe the middle of the night? I just remember sitting in the waiting room next to my dad and telling him how tired I was of feeling like Mary on Good Friday. I wanted to feel like she did on Easter! We were sitting in the waiting room because testing was happening. That day they did an EEG and an MRI. It was also the day they confirmed that the bacteria causing the infection was Group B strep.
The EEG confirmed that Samantha was having seizures in her brain, which, given that the bacteria was attacking her brain wasn’t really surprising. The MRI showed significant bilateral brain damage. The bilateral, meaning both sides, was an important piece to understand, because if only one side of the brain is affected, the other side often takes over those functions. Our brains are pretty remarkable in that way. The doctors prepared us to consider what the future might hold for us, that our daughter would most likely be severely disabled.
Given that just hours before, she was at death’s door, we were grateful for this news. What we didn’t know was just how extensive the damage would be before the end, and how long the journey would take. We also didn’t know how much we would eventually learn about this “Group B strep” bacteria and how much is still unknown about it.
Next post coming tomorrow.