So thankful for this sweet, sweet Kai

“Kai. I love you every day. I always think about you and I miss you even when you’re asleep.” –Kaitlyn

We love our Kai. The way he cares for Kaitlyn, hugs us, smiles with that dimple, and informs us of all the facts we need in a day; that’s what often gets us through. The relationship Kaitlyn & Kai have is such a beautiful thing to witness.  I'm constantly amazed by their strength and perspective. There’s a balance I haven’t found because I can’t fix enough- where I want to make sure Kai knows he’s loved & appreciated & where he gets to be a kid-free of any worry. Kai voices his worries so well & he loves so whole-heartedly.

“Do you realize I’m halfway to twenty? I don’t think I can snuggle you when I’m twenty because I will tower over you and my face will be all hairy. And scratchy. And I’ll smell like a man.” – Kai

Kai turned 10, which apparently is very close to a towering grown up. I know every parent has the same thought/question/grrrrrhmph- this goes soo so so so fast. Slow down kids! I feel like I blinked and he went from being my sweet cheeked toddler playing police cars in the mud & picking me flowers to this fourth grader who writes with hashtags, tells me I should listen to city music, & thankfully still picks me flowers. I’m trying not to blink anymore since he’s eying his twenties & the prospect of facial hair.

Kai loves traditions. Being able to count on things going a certain way seems to be a constant goal. I can definitely relate to that goal. We have a birthday tradition of driving to Healdsburg and getting donuts early in the morning- when it’s still dark out. He makes an adventure day plan and he picks every meal. The night before his big day, I couldn’t sleep. Kaitlyn was fine; it was all me, being ridiculously stuck in my head.  I was trying to wrap my head around him getting to 10 so fast. Kaitlyn had been improving every day before his birthday. She was back on IV antibiotics for a site infection & they were working quickly & with no side effects. Everything was improving for her. Beautiful timing for a great day! We made it to Healdsburg early for Kai’s donuts. He is quite the donut king. He brought a bag of donuts & some juice for his class to school. His birthday adventure was to go see the “pill boxes” & bunkers (hoping I have those terms correct) from World War II near SF and then to the zoo. We picked him up early from school and headed to SF. Everything went like a movie; the good kind- with background music and beautiful lighting. He kept thanking me- hugging Kaitlyn & telling us how happy he is. Kaitlyn was awake for a lot of the day. She even walked part of the hike. She loved the flowers, the way the grass moved together in the wind, the smell of the ocean so close & seeing the Golden Gate Bridge behind us. Kai told her all about World War II history that he’s been reading about and collecting stories of with his close friend, more-like-family & mentor, Paul. We walked past a not-very-old man and Kai made a comment about wondering how he’s doing after World War II. Erps. That guy was definitely not around during World War II.

At the zoo, Kaitlyn fell asleep & Kai wanted to push her. He told her everything he saw- by moving her hair away from her ear and whispering so sweetly. He held my hand, ate a bucket of cotton candy & said he was going to stay 10 forever.

Sometimes it seems like time is standing still for Kaitlyn & speeding by for Kai. There’s not a medium in much of our lives, not a whole lot of neutral going on.

After Kai’s birthday & with Kaitlyn still doing better, we’ve made better effort at adventuring more often. Kaitlyn and I were back to going on walks once she’s off TPN & formula. I love our conversations and how she sees the day around us. Sometimes she drifts off to sleep, the quiet sets in, & I feel reflective on what’s right in our days; or a bug lands on my face & there’s nothing graceful or quietly reflective about that.  We had this plan to go walk the “lake park” with Kai a few weekends ago. Kaitlyn was wide awake and talking about all the flowers she wanted to show him and hoping she’d see some dogs (she had met the sweetest dog, Rosie earlier that week). The drive over the hill, she fell asleep. Kai and I took turns pushing her in the stroller and hoping she would wake up. Kai told me about fourth grade happenings and things he’s learning at lunchtime. Holy schmoltzy. I feel like I need to go have lunchtime interventions. We crossed a dried up creek and Kaitlyn’s stroller got stuck on a rock. Kai is more engineerical than I am- but we couldn’t figure it out. He had this idea to move the rock while I held one end of the stroller up. That seemed dangerous & I was worried he’d lose a finger that way. So we stood there debating a plan that wouldn’t risk any fingers. Then we saw this beautiful couple in the distance ahead of us. Their outfits matched; they were running in unison like a Nike commercial. I could practically hear music. Her pony tail was swaying in rhythm with her steps. When I run, I look like I’m having a bad reaction to many things and my body is fighting itself in all directions. Neither one of them had any body fat, anywhere. Not even a fatty mole. I think I just stood there, dumbfounded and trying to hold in my wobbly parts. Kai stood there too- taking in the whole scene. Here we were taking up half the trail because we were stuck. Thankfully Kaitlyn slept through it - I momentarily forgot about the stroller taking over the walkway. They just bounced on past us- I think they flew over the dried up creek we were holding up. Somehow we were invisible- which seemed impossible if I had thought about it before they bounced past us.  After the miracle joggers left us in their wind- we figured out how to get Kaitlyn out of the rocks & carried on. We walked a little slower, talked a little less, & felt slightly defeated although we weren’t sure why or what from. Kai found a shady shortcut through the trees. Exercise was getting overrated. We managed to walk right into a wedding. What the heck? Kai- who is completely grossed out by kissing & thinks people have babies immediately afterwards said something super embarrassing. So then we walked a little faster and made it to the car. I don’t really know why I’m writing this all out. I’m sure there was a point at some point. Isn’t that the truth with most experiences? I start out thinking there’s a reason for the chaos we’re in- and when it turns out there isn’t always; we have to find the funny in it. That’s the beautiful jogging–in-unison-with-flippy-pony-tails point of this whole story; there’s always something to laugh with, in or about with Kai. He sees what’s right in front of him & he processes it all in a way I’m in awe of.  

“Kaitlyn- what does a seizure feel like? Do you know you’re shaking all over and that you’re making a really bad scary sound?” –Kai

Earlier this week we had a pretty tough morning. It started out great- Kai woke up before the sun came up so he could play minecraft with Kaitlyn. They love to play that together & he’s trying to get up earlier on school mornings. Minecraft is good incentive. They were crafting together so peacefully and I went back to my bed and drifted off to sleep which I feel incredibly guilty about. I think near the moment sleep found me, Kai was screaming at my bedside, “Kaitlyn. Seizure. Seizure!!” I scrambled to the livingroom where Kaitlyn was seizing. I put her in a better position, on her side and used the VNS magnet. Still seizing. Kai grabbed the emergency medicine box and I gave her Versed. She still seized for a few minutes- but it finally let her go and her muscles relaxed. Once Kai had tasks, he calmed down and we were a team. Almost a robot team.  It’s hard to explain reacting- I almost feel like I’m outside myself watching the whole scenario separate from being me. I think Kai feels the same- he describes it better. I know what to do- I’m outwardly calm. The emotional part hits later. Once Kaitlyn stopped seizing and she had been sleeping for a while- I made Kai breakfast and we carried on, getting ready for school & the day ahead. Dropping him off, he looked so exhausted. So much intensity during the short 3 hours he had been up that morning. When we picked him up from school, Kaitlyn was wide awake and chatty. She didn’t remember the morning, or the day before. She knew the week before & she was glad it was a Tuesday. Kai had so much to ask her. His questions are tough to answer sometimes, but I’m incredibly thankful for his amazing ability to charge through those tough moments and try to understand them from many angles. This Kai- I can’t imagine how we would navigate through any of this without his wisdom, humor, compassion, curiosity, fearlessness and love.