Kai: “18-17-4. Phhhhsssshhh. Over. 10-4.”

Every once in a while- Kai still makes up radio codes and relays them over the broken kid radio that used to make beeps at 3am, but now collects dust.  I love his imaginative play- even though it often means I’ve been written up for something- or that my foot lands on a metal airplane scene. One thing he’s started doing lately is “navigating”. He draws maps and puts numbers all over it- and uses a microscope over a real map, gets his ruler and draws points and directions for who-knows-what. The numbers seem so random- but maybe they’re not. So many times in this with Kaitlyn- I’m memorizing numbers that I have no idea what their significance really is or how we got to these numbers. I’m just a mom- navigating in craziness I don’t always understand, but hoping and trusting that these numbers are how we’re all doing everything we can to make sure Kaitlyn has the best day possible & is always moving forward.  I’m incredibly thankful for the numbers as they are now because Kaitlyn is gaining weight. Her numbers, which may not be so random-, are inching upwards; and that’s an incredibly good thing.

Kai: “How do we know if the day is going to be mostly good? Because sometimes, BOOM. It’s bad. And then you say it will be good. And I am still waiting.”

We’ve really had mostly good days, so part of me doesn’t want to write out some of our trickiest. But maybe we appreciate the good because of the tricky? I really hope it’s not that messed up. Kai was talking about being nervous about a really good day he had with friends at Great America, because he was worried something bad would happen next. Maybe that constant bated breath we seem to be consumed in is because we have seen seizures take our Kaitlyn over at moments that were soooooo great before the seizure hit. The last big seizure that took her over came out of nowhere with no warning. We were having a great morning & start to the afternoon- she was standing by the kitchen counter and reached through the dish drainer to get a lid. I had just given Kai his lunch and I walked to the other side of the room to change the music. I’ve regretted that moment since. And replayed it too many times.  Really though, if I give myself a break, these are all normal happenings that a moment should be able to entail without clusters of chaos ensuing.  Yet instead of the cluttered fun chaos our moments can have (& truly mostly have)- this one was invaded by a big mean seizure. And just like seizures before- I heard it before I saw it. This awful sound I can’t describe right. I couldn’t get to her fast enough- she fell hard, seizing. The metal dish drainer was tangled in her arm & had fallen with her. She fell so hard- getting the drainer and its contents off her and away from her and then her in a better position were my first priority- then I got the emergency medicine out. Kaitlyn’s neurologist had changed/increased the dose & I had that number memorized, but I hadn’t ever given her that much before. I sent Kai to find the phone- gave Kaitlyn the medicine and waited. The waiting is the hardest part. I don’t remember timing anything- she turned purple in the seizure, then pale when the convulsing finally stopped. I can’t get the image out of my head and yet I can’t really describe it either. Kai had called 911 and was going over all the details we just watched, and were still watching. I got Kaitlyn moved to the couch after the convulsing had stopped. Her eye was swollen right away and the bruise on her arm from the drainer, or a dish formed pretty quickly too.  Kai was calmly reciting everything to the dispatcher. I didn’t hear any shaking in his sweet voice. I feel like a witness to chaos in these moments. We just function like we do- waiting through each passing second until either help is there or the seizure stops. I hate that Kai knows how to do that too. The firemen came in- somehow I talked, or rambled. I’m not really sure.  Kai stayed so calm. Really the emergency was over by the time they got there- it’s the after emergency chaos that can be the trickiest to navigate in sometimes because auto-pilot leaves and emotions come in. As she does so amazingly- Kaitlyn was fine. She recovered incredibly well. So did Kai- he wrote it all out that night- and then again the next day. Writing helps all three of us really. Kai wrote it & spoke it really well- describing the feeling that things can get scary too quickly and he feels like a seizure can happen any second. Every time Kaitlyn moved the next few days, we both jumped up. The next day, I went to take a shower- everything seemed calm. Right when I got shampoo in my hair, Kai came running in screaming, “seizure! Kaitlyn!”. I think I flew down the hallway- my feet landing on all Kai’s airplanes somehow. Ouch. Thankfully that seizure was much smaller and the VNS magnet worked. Thankfully also- we didn’t need to call for help that time. That would have been a bit more than any emergency crew should have to walk into. Half showered- all frazzled mom- and metal airplanes all over the floor. Even more thankfully- that cluster of chaos is over and we’ve had much, much better days since. This fight for normal is ridiculous sometimes. We find it, in our own way eventually.

Kai: “when you’re mad or you cried, you bake a lot. I kind of like that, but I don’t like that you’re sad. I just really like cookies.”

In light of, or in spite of (I’m not so sure) the chaos with the nursing company and the totality that is our life; I have been baking a lot. Kai is right. A few weeks ago after the umpteenth batch of cookies, cupcakes, and muffins; Kai joined me in my baking frenzy. We made cinnamon rolls. His favorite part was punching the dough. We talked a lot, measured a plenty, and flour was everywhere. He said waiting was not his favorite part. I agree.

Kaitlyn: “if you believe it will happen, it either will, or won’t. But it’s much more fun to believe.”

Earlier this week, we went to the Marin Headlands to explore.  We hiked, laughed, talked; I ran from a raccoon, which I’m fairly certain sounded like a chicken (maybe both of us did, but mostly the raccoon). It was very action-packed. As we maneuvered from one trail to the next, Kaitlyn was more and more alert. She was all hooked up to both TPN & formula- we made it out & about with everything attached to a backpack, attached to the stroller. We didn’t really have a plan, which was more than half the fun. We made it to the end of one trail. Not the end of the trail really, but the end of the capability of the stroller to keep going. Sand and strollers aren’t really friends. The ocean felt oh-soooo-close. So, we unhooked the backpack from the stroller and Kaitlyn walked some. I remember the point we couldn’t see the stroller. So freeing. Kai even said, “TA-DA!”. We went really slow. We stopped a lot. I carried her some. But, we kept going. We made it down steps- lots of them. This trek doesn’t seem like a big deal, but for us- it was a huge deal. If Kaitlyn fell back asleep like she had been on and off throughout the day, we had no back up plan. Kai’s eyes were wide open the whole time- Kaitlyn kept saying, “we can do this. We’re right here.” And we did. It literally took 2 hours all together. Not a single minute was boring or wasted. Kai held the tubing- Kaitlyn’s hand and my hand.  He would walk ahead when I sat with Kaitlyn, and see if it looked like we could keep going. When we made it to the beach- Kai was holding the tubing- I had the backpack- and Kaitlyn got a new surge of energy. Feet in the sand- just the 3 of us standing there. And like the big dork that I am- tears started streaming down my face- and I was laugh-crying, which is a very awkward sound. I felt like I should apologize to that beautiful beach for making that sound. Kaitlyn whispered that this was the best day ever, the most beautiful beach, the best family ever. Everything was the ‘best, ever’. That’s so Kaitlyn. All she sees is what’s best. Getting us back up to the top of the trail was just as exciting as making it to the beach.  I’m still overwhelmed in the best way from that entire day. She slept a lot the next 2 days, but the adventures were well worth it, we all agree.

Kaitlyn: “It’s like the days that aren’t good get erased because we have right now.”