Many people have offered words of support and condolence, saying that they don't know what we are going through. I thought I might try to describe a little of what we are feeling, for empathy's sake.
The whole situation is still very surreal for us. We have been conditioned since October 6th, 2013 to spend each day and night at the hospital where Roscoe is staying nearby. Since that day, there hasn't been a single day that passed when Alisha or I didn't go spend time with him. As he got more interactive and matured, Alisha would spend 8-10 hours each day at the hospital and I'd spend 4-5 hours after work. Most recently at UCSF, we spent an average of 10 hours a day with him at the hospital. After this quick series of events, now Roscoe is no longer with us and we won't visit a hospital today for the first time in almost a year.
Coming back has been a bit of a shock. For over a month we've lived in a foreign location, in weather that felt like late fall, around people we don't know, and at a hospital we're not familiar with. Within 24 hours, that has all changed. We're now back at home, we don't have a son, we don't visit the hospital, and the weather is hot. It feels like we've been living in an alternate universe where we had a son in the hospital for the past year, and now we've returned to "real" life in mid 2013. It will take us time to come to terms with everything that has happened.
In our conversations with each other, Alisha and I alternate between talking about mundane things like what to eat for dinner and reliving special memories we had with Roscoe. We might be in the middle of a conversation and one of us will instantly break down saying something about our little boy. Often we speak of him with a smile. Sometimes the words don't make it out of our mouths because they are blocked by hurt and blurred by tears.
We still feel like this isn't real. Roscoe was so resilient that each time a problem occurred there was an alternate path we took toward stability. Alisha and I keep waiting to get a phone call that tells us to come back to the hospital, that they've come up with a new plan, and things may possibly work out.
Alisha and I watched Roscoe "die" many times before it actually happened. We were prepared for him to be stillborn or not survive his birth. Another time we were in the room when his lung collapsed. The Saturday after his trach surgery we were convinced he wouldn't make it. This past Saturday he had several very scary drops that mirrored these prior events. When he finally passed earlier this morning, it eerily felt like a road we'd walked down many times before, only this time there was no recovery.
We feel like we are returning to a life we once had, with memories of a life nearly forgotten. We are having to re-learn what it feels like to sit at home at night, to not be scared whether our son can breathe, and to not have to constantly flinch when we hear a beeping sound that sounds like a monitor reading a bad value. We hope that by describing this, we can share in the mutual feeling of shock that you are all feeling, and that we can help you better understand our road so that you can walk it with us.