Today marks 4 weeks since I last held Sonzee, since I last gave her a kiss on her soft little cheek, since I last picked her up for the last time, since I last walked her outside the house for the last time, since I placed her on a stretcher, made sure she was buckled for the car ride and made sure she had two blankets because it was cold that Monday afternoon. As soon as I made sure she was safe, I turned back around and walked quickly back into the house but didn't know what to do. I couldn't look at anyone, I couldn't talk, I knew either would result in me breaking down, so I think I just walked around the kitchen putting things away and keeping my mind and myself busy.
It was only 9 days prior that we had formally admitted Sonzee onto hospice, which was after 4 days of uncertainty between Sam and me. It was 18 days after her very first symptom began, and 15 days after I realized what was really going on. No matter how much time passes I think every moment leading up to her final breath will be replayed in my mind. No matter how much I know there was nothing we could do for her, no matter that I honestly have no regrets over how we spent her last weeks, it is still really hard to accept there really was nothing we could do to change her outcome. Sam and I both have spoken to numerous medical professionals and we know that she was not sick with an infection. We know there were no antibiotics to give. We know there was no way to stop or reverse that her organs were shutting down just because.
Now 4 weeks later, while I accept that her body was exhausted and that it was her time, and she put up one hell of a battle for 4 years 11 months and 22 days, I still wonder what if we could have somehow known or prevented the domino effect that occurred in her body, as each organ started to malfunction? What if we had been more or less aggressive with seizure control? What if we had chosen different formulas or diets over her life. What if we had made one small or seemingly insignificant decision that would have changed the outcome? I know the what-if game does no good to play. I do know we did make the best choices for her based on the information we were presented with each and every time. But it will always come back to what if something could have been done to prevent her CDKL5 mutation in the first place, what if we never even knew such a game of life even existed. What if we had from the start had a perfectly healthy, smiley, and happy Sonzee....what if?