Monday, April 15, 2019
The day before Diagnosis Day
It was a Wednesday. I cannot remember the exact time, but I remember walking around the house while on the phone picking up toys and putting things away. I can tell you what rooms I was walking in and out of and where I was when the neurologist said the words, "we got results back from her genetic testing, but I don't want to tell you what they are over the phone. I don't want you to look it up, and think that will be Sonya". I remember when I hung up the phone I felt relief. I was actually giddy with excitement because we had an answer. We would never have to wonder why she was having seizures.
This was great news.
I quickly learned on this journey that everyone processes things at their own rate and in different ways. When I told Sam that we were meeting the next day because she didn't want to tell us the results over the phone I didn't quite know what he was thinking. It wasn't until a little later that day when he called me from a gas station that I got a glimpse into his mind. "Randi, it isn't good", was what he said when I answered the phone. I was not even sure what he was talking about, but he continued on to say, "I looked up the panel, and there is only one good thing, and she doesn't have it". I said, "Sam, you don't even know what you are looking up, it is going to be fine, we will have our answer tomorrow, stop looking things up."
I honestly was so content with knowing we had an answer it never dawned on me to even look up the panel. Not once during the 3 weeks since that test was sent off did I even consider what was actually being tested. I guess I was not always as neurotic, worried, or as pessimistic as I have become. When I think about that fact, I realize how much I have changed in 4 years. 4 years ago today even though I knew we had an answer, I still had no idea what that answer was going to lead to and what was going to be in store for our family. 4 years ago today, we were a little on edge, but still BLISSFULLY unaware of all the pain, all the surprises, all of everything that the characters CDKL5 was going to bring into our lives, and a lot of the time, I wish I could back.