For me, things are suddenly coming in to focus in random spurts. I don't know how else to describe it, but it's like most of the days spent in the hospital are a blur. I couldn't tell you what happened any day, other than that it started and ended. I haven't gone back to read what we wrote on those days- I just can't yet. But now at times, the blurred days came strikingly into focus. It's almost like a scene in a movie I'm watching, and I can see myself and James and the doctors and whoever else was in the room with such precision.
For example, I was driving the other day and for some reason the moment that the Neurosurgery PA came into our room and told us that it was possible that James had a brain tumor popped into my head. At the time, I had no idea who this woman was or why she was in the room. I had no idea that she was with the neurosurgery team, or that was a PA, or what her role was at all in the hospital. I had no idea that she didn't belong on B6 which is the first floor we started on. She had really belonged on C9, and that her being in our room signaled a drastic change in why we were in the hospital.
I had no idea about the relationship I was about to develop with her. I had no idea that she and I would at times disagree on James' treatment, or what procedures he was going to have. But watching this scene play out, it was like I knew all of this information in the moment. So watching it again, knowing the full effects of what was going to happen, somehow makes it so much more tragic.
I guess maybe in some ways it's like the part in Harry Potter where the old wizard (Dumbledore? Is that his name? Can't remember.) pulls the memory out with a stick and places it into the water-like substance that collects all the memories.
And then all of a sudden, the memory fades. Logically I know that very quickly after our conversation we were moved to the neuro floor. I know that they began monitoring Jamesie's heartrate and since it was so irregular that we moved up to the PICU even faster. And then later I remember our nurse, Simon, who took care of James almost every night in the PICU. I remember that the lights were turned all the way on, and even though it was so late at night. They were so bright.
Yesterday I went back up to Children's. I wanted to donate some basic toiletry items that I had collected to give to the social worker who was so wonderful to us. (FYI- those tiny bottles of shampoo and things that you get in hotels are amazing for hospital stays. They are small enough that they last for a few days and you can toss so you don't have to tote them around forever during your stay. I've begun collecting them whenever I'm in a hotel to donate back to the hospital. Little things like that make a HUGE difference when you come with literally just the clothes on your back and don't really anticipate making the hospital your home for the next month).
I also went to the child-life department to see if they could help me understand how to get my baby's footprints out of this mold. They helped, so that was good. It was so surreal being back there. People asked if I needed help finding my out. It was almost funny because that hospital was my home for a month. It's amazing how quickly it all comes back. Of course I can find my way around.
Our sweet social worker, Kelly, offered to page my favorite PICU doctor. I heard that he was doing research, so I didn't get to see him, but maybe next time. For some reason I have my favorites- which is terrible I know- but I just truly loved the doctors and nurses in the PICU. I definitely had my fair share of little battles with them, but I know that they have to desperately love what they do. They make such a difference. Maybe I'll become a PICU doctor one day. Who knows.
I also went by the hospice office yesterday to pick up a hand and foot mold they had done for James. I don't know why, but yesterday I got a little obsessed about having those molds. I know they are a little weird, but for some reason I just had to have them yesterday. In some ways I have stopped questioning my random spurts of energy. I think they are little moments when I am trying to gain some sort of control over my life. Or maybe they aren't. Maybe I psychoanalyze myself a little too much! :)
Oh- and I donated all the baby bottles yesterday too. Whew, I guess it was a weirdly productive day. I took them to a woman's shelter. I have no idea if they will use them or not. I had no idea where else to take them. They aren't technically "new" because each of them had been tried a grand total of once in my efforts to get James to take a bottle. I think I owned about 3 bottles of every type on the market. It was a huge bag.
I never have any idea what to label these posts. For some odd reason, the tune "Just keep swimming" that Dori sings to Nemo in Finding Nemo just came into my head. Maybe that's what the days are right now...Just keep swimming. Just keep swimming, swimming, swimming.
Forward momentum is always good, right?!