Happy-Sad

 
My little brother Seth, used to have this "happy-sad face" when he was a toddler. He could look both happy and sad in one expression and he'd make the happy-sad face on command. He could cheer us all up by doing that. One of the many great things about little brothers with 5 older sisters, they did things we said to. Seth also once let me make him paper "Indian shoes" but after I nearly cut off his toe during the "measurement phase", he was less willing to do what I said. Life lately feels like a giant happy-sad face. We appreciate every great moment, we laugh and make the best out of everything else- even though the sad in all of this still feels incredibly raw, helpless and difficult.



August started out with a lot of new beginnings. Kai started 3rd grade. Even though every Monday he started the countdown to the weekend, he was getting into the routine of school, homework, reading on a schedule, and eating breakfast early. The "police do paperwork" speech actually worked, probably because I'm not the one who told him that. He loves his teacher. He was really worried about his best friend not being in his class- but then he said he had "back up friends". Kaitlyn started a home school program again- with the goal of things getting better. It got off to a rocky start, but then we advocated for and were given better goals with a productive routine & she loves her assignments when she's awake. She loves learning, loves writing, and is starting to recognize sight words, patterns and sounds letters make again.
 
 

Kaitlyn turned 11! Her birthday was one of her hardest days and one of our best days all at once.  Seizures came in clusters and it all felt worse because I wanted to give her the best day. We stayed at the coast overnight and hoped the seizures and their aftermath would leave her alone. They did in moments, which became the most important aspects of her day. Watching Kaitlyn & Kai both embrace each moment made that day unforgettable. When she was awake, she was all smiles and Kai was so excited to tell her each time he saw her eyes open, that it was her birthday. Even though she didn't have energy to stand up, she was beaming. That night- she woke up and said it was the best birthday ever. It took a few days, but eventually she was able to blow out candles and the days got better after that.



 
I enrolled in an EMT course and have never been so excited about school. I was intimidated at first- but then in love with the idea of having a challenge that had a tangible solution. If I didn't understand how something worked, I could ask, read about it, study until the words blurred together & practiced with my kids until I got it.  I wasn't sure I could handle it- but as it turned out- having school to focus on helped me balance all that I was already balancing. Kai handed me his hot wheel EMT truck my first day. I kept that in my bag. He started including "EMT moms" in his police scenarios, & he asked me almost every day if I had class and how I did. My moments with Kaitlyn at 3am were different. I'd study while she laid next to me. We're up so much at night and in between her feeding machines beeping, helping her find a comfortable position and singing the sunshine song 800 times, it was weirdly refreshing to study and stress about school. I spent less time aimlessly worrying-and more time productively preventing school stress-the one stress I could prevent. The more I studied, the better I did. It's not always that way with Kaitlyn's care. No matter how perfectly I do or how on time I give her formula & TPN, administer meds the right way or document it all in search for a pattern- I can't fix this. I can't make this stop & the reality of that is a giant suck hole.  Sometimes I fool myself into thinking I can fix this-which is a kind of productive ignorance that helps us stay afloat. I won't ever give up trying & I'll always have hope- but I do realize that while I do get to care for Kaitlyn the best I know how to and I get to raise my kids to the best of my ability, I'm not in control of what this is that takes her over.



In the midst of our days going the best we could make them- Kaitlyn has had some scary nights still, uncontrolled seizures, feeding tube issues, & a few hospitalizations. One of the happy-sad things about all of this is that we manage it better. Not that she's doing exceptionally better all the time- but we know what to do and avoid the hospital more. It's good I'm more capable and less freaked out, but it's awful that we can get used to this too.

Kaitlyn's first hospitalization since school had started was after a skin infection near her central line. After a day on antibiotics, she developed a fever. The second night she had the fever, she got more shaky and harder to get a response from.  Kai started crying, and it was time to take Kaitlyn in to be seen.  Off we went to our friends house to drop off Kai. He wanted to go with us & tried to convince me that the SWAT team could help and that if we called an ambulance instead of dropping him off, they would let him sit on the bench. After lots of hugs and packing his bag for our friends house, he did agree it was better to go there. They embraced him while I drove Kaitlyn to the emergency room where she was admitted later that night. Everyone was so great with her, and Kai was feeling better the next morning too. The family who watches him cares for him like part of their family. They've become family to all 3 of us.  We are incredibly lucky to have people like them in our lives. All tests came back clear, her fever went away the next day and we stayed an extra day to make sure the blood cultures came back clear. They did. PHEW, crisis averted. I studied at the hospital, and the nurses there who already know us where so supportive. I missed class due to her being in the hospital but since we're allotted a certain amount of absences, I was still ok. We got home, back to Kaitlyn's routine of meds, formula, TPN, appointments, weight gains, weight losses, seizures, ideas, solutions, all of it.



The night before my midterm skills exam was a rough night for Kaitlyn. I studied in between her seizures, her discomfort and multiple formula breaks. The nurse scheduled to watch her in the morning didn't show up though. Life happens- and we didn't have care.  I had been up almost the whole night with Kaitlyn and then not having care for her- I wasn't sure what to do. I felt guilty being mad that she didn't have care because I love watching her and it's my responsibility, not anyone else's. Missing the skills exam would have eliminated me as a student though. I packed her up and off to school we went, together. I didn't know what my instructor would say- or my class- or anyone I saw there. I sat in the parking lot for a bit just crying like a giant wimp.  The police academy ran past me which was awkward for all of us. Not sure why- but wheeling Kaitlyn in made me so nervous. I did it though- I put her in her stroller. She was all cutely bundled up in pink pajamas and her snow hat that she loves wearing. She slept through all of it, but I walked into class still crying. I didn't know many people in my class, and they didn't know about Kaitlyn- but they hugged me and offered to help watch her while I took my exam. They all had the same exam, but they were so compassionate & understanding. When the instructor walked in, he too said it was okay to have her there. During the exam, I started crying again but after 5 minutes into it, I got it together and finished, and passed. After class, Kaitlyn had her weekly appointment at Kaiser. I've held it together for many days, but that day I couldn't seem to. I cried everywhere. The women at the front desk and everyone there was so nice, embracing; and as they always do- they all helped make a rough day much better.

 

Kaitlyn's next hospitalization was another scary night- not sure why we have such terrible night luck. Her g/j tube had been sticking for a few weeks and we had tried different things to un-stick it and get it working again. She had missed nights of formula feedings because the tube wouldn't work.  That night though, what we tried actually worked- and she was back on formula. I was singing her the "sunshine song" like I do every night, and laid her on to her bed- the night seemed perfect. Kai had read to us after we listened to baseball on the radio together and I had just tucked him into bed too. Then Kaitlyn's g/j tube just slipped out-onto her abdomen. I quickly pushed it back in, but couldn't all the way. That is a gross description, sorry. Off to the ER we went- after dropping Kai off with our friends again. We ended up in SF the next day because that's where they can replace the g/j tube. Everything went smoothly-no emergencies or fevers this time. We stayed an extra night because we needed to make sure the tube worked and that she tolerated the feedings again. In school, I missed a mandatory training and classes- which put me over on absences- & the training I missed had a no debate-no make up policy. It became my project though- to try and debate and make that up.
 

I emailed the instructor from the hospital. I was so bummed about even the prospect of having to drop because of absences. He was understanding and nice about it- but the rules were rules. Kaitlyn's neurologist even wrote a letter on my behalf.  I kept writing emails (annoyingly so) and continued to stay in class even knowing it may not result in my staying in the class. It didn't work though- & when Kaitlyn & I both got sick, I surrendered the debate-the-attendance-rules plan. I have flaked on a lot in my life- and missed more this past year than ever before. It was ridiculously hard for me to accept quitting class when I felt like it was so unfair. I was failing the one thing I was good at and it was harder for me to accept than I realized it would be going into that class. I knew my life was more than complicated and our days are filled with unknowns. I knew it was a risk to enroll in something that required me being there because I always have to be there for Kaitlyn. I accept that and wouldn't change my role for anything. That didn't make it easy though. I cried & I felt worse about myself than I have since Kaitlyn's Oakland hospitalization. I was embarrassed too. I also thought Kaitlyn & Kai  would be disappointed in me. I want to be someone my kids are proud of and I ignorantly thought that one class was all I had going for that right now. I couldn't have been more wrong. They're the sweetest kids- and I know I am luckiest mother there is. Also, I'm enrolled for next semester- and will get more semesters of Kai scenes, studying at night with Kaitlyn next to me and more. There's no guarantee that I won't miss another mandatory training or go over on absences due to hospitalizations or caring for Kaitlyn. Yet if I only make decisions based on guarantees, I won't get us any further.