If I've learned anything since January, it is things aren't absorbed in real time regarding such events. We're now almost 2 weeks since Scott's discharge, and Sunday will be 5 weeks since we took off to the hospital due to fever.
5 weeks. Over a month now. 22 days past learning he had a problem in his head. And all the things that happened just now seem to be truly processing in my mind. It is as if you wake every now and again from a nightmare and try to sort it all out in your head. Some parts make sense, but it never all seems to be a puzzle which all the pieces are found.
Since January, I sit at times and just feel the realization - Scott has cancer. Same way tonight with the latest issue - Scott had a stroke. It doesn't come at a given time. Doesn't come when you're trying to sort it all out mentally. It comes when it wants.
When the things actually happen, they seem surreal at that time. Until your brain seems to fit the puzzle together and let's your body actually work somewhat normally - that's when it all hits you like a truck full of bricks. The whole ordeal is an unimaginable pain deep somewhere inside. You can't pinpoint it to your stomach, heart or head. It is just a biting, non-stop pain. You read about kids with cancer. You read about people having strokes. You think "that must be awful".
The reality is far more awful than any of those things you can imagine. The pain doesn't disappear with a couple of Tylenol and a glass of water.
We're supposed to be able to protect our kids, and at least help them deal with the unfortunate things that happen in life. This leaves you feeling like a bumbling oaf, helpless to fight something you can't even see. Helpless to really 'make it better' for the little kid looking to you as the savior or the one that can 'fix it'.
But it is no dream. It is very, very real. Stephanie has somehow done very well in dealing with the shots at home. It's horrible for a mom to have to stick her son with a cold needle square in the stomach twice daily. We're supposed to be the one's that come when the bad things happen. Ward off the dangers. Now she has to be in the role of "person with needle". Scott really is a champ with the shots most of the time. But sometimes, like tonight, he's just a wreck before it even happens. It's terrible and you want to just say 'ok, we're not doing this tonight'. But that is not an option. Diligence is mandatory, and can never be slack.
Scott and I went to clinic this morning, and he was full of beans as Stephanie says. Very good mood and even wanted to visit the inpatient floor (something he rarely has a desire to do). The nurses on today were pleasantly shocked to see "Scott". The last time most of them saw him, he was far from himself. The last time some of them saw him, "Scott" wasn't home. He happily showed them his poor tummy, which looks like a battle zone of some type, which is also something he certainly would do nowhere else outside of home.
He's come back from this horrifying event in an amazing (to us, doctors and nurses) manner. I'm very hesitant to say he's like it never happened - but that is the way he's acting. I'm hesitant because the fear this beast puts inside you. Fear of too many things to count. More fear than the brain can process at times.
I think that is the worst thing about Scott's disease - it makes your brain work in a way that nothing seems certain. Like the doctors seem to always say - there are no guarantees.
I'm not writing all this to be a downer for folks. I just trying to give some insight into something that doesn't work in logical terms or adhere to any given schedule. His protocol is a schedule, but a schedule that is quite fluid with any bump in the road. This was no bump. It was a mountain. I'll never forget Stephanie saying the words to me - "David, what if he doesn't come back?"
I can't recall the exact thoughts I had when she said that, and I probably don't want to recall them. But I do remember at that instant, with all that is happened to Scott, I felt more helpless than I've ever felt in life. I had no idea what to do for her. No clue what to do for Scott. How do you explain to Derry what has happened? No clue how to deal with it myself.
We do have our Scott back, and we have him back much quicker than I think either I or Stephanie or any nurse or doctor would have ever guessed. And we are ecstatic about that fact. But we remain wary. Remain on guard. There is no rest with this enemy. It is an absolute bastard that must have a glaring eye trained on it nonstop.