Today was supposed to be the most “back to normal” day we’ve had since before I can even remember. We had arranged for my Mom to come over in the morning to spend the day occupying the girls. I was going to work…yeah you read that right…work, you know like a normal human being. Chris was going to work on getting the backyard finished. Ahhh. Normal. Productive. Peaceful even. And then the phone rang. The nurse practitioner was calling to say that they are concerned about the rash on Riley’s face and that dermatology would like to see her today. Shit. Also, the transplant doctor would like to see her as well since the viral panel for RSV & Flu came back negative but her raspy voice hasn’t gone away so they still feel something viral is still going on. Virus. Infection. So much for that “back to normal” day we had planned. THIS is our normal…no matter how hard I try to fit our lives back into the molds they once were it just doesn’t work. I can plan, I can have the best of intentions for getting work done and hey maybe even making a little money to pay this mortgage (yup still hasn’t gone away) but one phone call and the day stops. Everything with her is significant. Everything has to be watched, any little change could me a sign of a big change. The tone of her voice. The amount she drinks, sleeps, poops…it all matters. It all means something. We are constantly looking her over, photographing rashes, documenting symptoms and discussing with the team her current state. It’s exhausting. Just keeping my state of mind in a place of being thorough and managing expectations without becoming a paranoid pessimist is draining to say the least.
Reality check of the day, this is your normal. Deal with it. I said so many times in the blog throughout our journey that even when we went home it didn’t mean it was over. I don’t think I ever really realized how true that was. I should have read my own words a little better. It’s hard. This is hard. But, it could be harder, could be so much worse. We are so lucky. She may sound like an 80 year old smoker and look like a rashy pubescent teen but she is here and surprise surprise…still smiling.
Thank you to everyone who has continued to support us through my silence. Finding the time to blog has been well…nonexistent…clearly. I will do my best to update after our appointments, please send out all the positivity you’ve got to little miss today.
For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com
Thank you, thank you, thank you
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