Life on the run

Ian has been moving non stop all day.

We went to the hobby store to pick up a train and look around. And then we went to the playground. Then we stopped for a cheeseburger on the way home. He told me he wasn't tired and I actually believed him. So we went back out again to Target to buy some socks for Rich (apparently every pair of his socks has disappeared the last few weeks).

I worried a bit that things may start to fall apart after 4pm, but he kept it together. Things got a little touch and go at dinner time because he was so exhausted, but after a brief meltdown and talking it out, he agreed to sit at the table and watch Scooby Doo while we ate dinner (he wasn't hungry).

15 minutes later he was passed out and drooling on his place mat.

He woke up again around 9pm but after a brief potty trip and some snuggles he is back asleep on the couch. I'll move him to the bed when we go upstairs.

Honestly, I'm not sure how I'm still upright. Even when he's awesome, and he was awesome all day today, he is exhausting. I may pass out at the dining room table myself. But damn, he's just so cute!

Just out of reach

All of our bathroom hand soap is perched on top of the cabinet over the toilet.

This is because our son cannot be trusted to be judicious in his use of hand soap. Everything is extremes with him. He will fight you to not wash his hands as if that bathroom sink is his Waterloo only to discover the water is amazing and attempt to spend 30 minutes scrubbing up as if prepping for surgery.

I started to lose my temper with Ian several times today. Mostly it was when he was getting all punchy and I was trying to restrain him and my elbows felt like they were going to explode. There were several discussions through gritted teeth today.

But it also broke my heart to hear him calling out in his sleep at 5am "No, Mommy! Leave me alone!" in the same plaintive way he does when I'm carrying him up to bed. Poor kid was having bad dreams about going to bed while in bed.

Emotions are raw in the house these days. Rich has a significantly lower patience threshold for shenanigans and the daily life of a three-year-old is rife with shenanigans. So I feel as though I'm holding the entire container of patience for the household in my arms over the course of the day and I'm trying to share it with Rich and even Ian while still leaving some for myself. Sometimes, supplies get low.

We went on a short trip to the pharmacy, all three of us, so that Rich could buy a cane and we could shop for a blood pressure monitor. It was already a dodgy expedition as Ian was tired and getting punchy. There may have been some gritted teeth conversations to get him in his car seat. We drove in silence for a mile or two. And then Ian started chatting about Christmas lights, how people shouldn't have them up every day but just sometimes or else they're not special. And then as he noticed more houses with decorations he got more and more excited, explaining in detail how each house was lit up differently.

All of a sudden, he gasped, "Hey! Look at the stars! Stars are like polka dots in the sky. They're beautiful!"

And all was forgiven. We made it home, snuggled on the couch until he fell asleep and I dragged myself out from under him to try staying awake at least an hour past his bedtime. And when I went to the bathroom tonight and couldn't find the soap to wash my hands, I smiled.

The state of things after the hospital

I don't even know where to start today. The last two weeks have been all about this surgery that was supposed to fix everything and then when it didn't fix everything, it was all about just breaking free of the hospital. But now we're home and all the worry that sat like a dark cloud over Rich has settled right back where it left off. I occasionally look over and see him wincing, expecting that he's in pain from his staples and it's just that he's worried or sad. He is so worried that it makes him wince.

One of the things I was told was that the patient is the person least able to assess their condition. You have no way of seeing how far you've progressed. So I knew that would be the case with Rich. I just didn't realize to what degree.

He has said repeatedly that he trusts me completely. So if I tell him that he's okay or that I'm okay, he believes me, but it takes constant reinforcement. Rich walked around our block this afternoon, which I just measured as 0.57 miles. That's pretty good if you ask me. He does ask me.

I remind him that we didn't get the simple outcome we were hoping for but that everyone is very positive about his prognosis. Worst case scenario is that down the road they would have to remove some organs we'd rather he keep but that he could still live without them. The better scenario is that he has to have chemo which is a drag, but would greatly reduce the stuff in his abdomen and make things easier to clean out via a second Mother of All Surgeries. (The support group actually calls it MOAS for shorthand.) The best scenario is that he doesn't even need chemo but could take some magic pill to eat away all the slime, but I'm not sure that exists in anything other than Star Trek right now. We'll know more when we meet with the team back in Maryland in two weeks.

In all these scenarios, he is still here for Thanksgiving 2013. He's even here for Thanksgiving 2023. It's just very hard to see that when he is feeling so weak. Rich isn't used to being weak and it's playing havoc with his everything.

As for me, I'm hanging in there. Our son got on my nerves today because we missed the magic nap window when he fell asleep in the car and I had to wake him up and take him in a store. After that he was awake but over-tired and literally stood in the middle of the living room sobbing. Hard on him and hard on me. We tried the smother/hug strategy to wear him down but he's more stubborn than I am, if there is such a thing. I took him for a drive and he fell straight asleep only to wake up screaming as soon as I turned off the ignition in the driveway. So he didn't really nap today. But that also means he fell asleep on the couch at 7pm so I don't even know what to do with myself with all this free time.

We had a nice quiet dinner here with my folks. Turkey, dressing, cranberry sauce, the usual. We forgot to make a dessert, but I'll worry about that tomorrow. I'm actually pleased that in the last two weeks I neither gained or lost any weight. I was first worried I would lose 10 pounds from not eating and then after devouring Wendy's quiche I worried I would come home 10 pounds heavier.

I haven't run at all since the diagnosis. I haven't felt like there's been time. But I'm going to try to fix that soon.

I know the theme for today has been what we're thankful for, but I've been thankful for so much all month and all year and all decade. I just wanted to ramble a bit about my day. I'm thankful for you all listening.