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.

Here We Are

Eeeek, I did it again. I wait until our update is 18 miles long before I sit here and write it out. We’ve been a busy crew, and thankfully not the hospital kind of busy.

The most important update: Kaitlyn is GAINING weight! She’s still on both TPN and formula, and while it’s not the most comfortable experience, she’s consistently tolerating everything better than she had been before. Her seizures come less often. When they do come, her stomach issues become worse, but it’s a ‘temporary worse’, and in a day or sometimes two or three, she recovers. We go to Kaiser weekly for labs and weight checks. Her blood-work is showing improvement too. The lipids in the TPN were making her especially itchy and once they took the lipids out, her blood tests improved and her itching went away.  She lost weight though, so after a few weeks, they've added the lipids back, but only for 3 days a week. She's most uncomfortable on the lipid days, but she's also improving.

Kaitlyn's Sleeping Beauty kind of sleepiness comes in waves. After an awful seizure, she’ll be sleepy for a few days sometimes. By ‘sleepy’, she can literally sleep nearly 20 hours each 24 hour period during that phase. Those days, I feel lost and we miss her more than I can put into words. There are moments on especially rough days, where my perspective won’t let me see past the raw heartache in missing her and seeing her hurt. I feel helpless and it can be hard to find the hopeful or to be insightful. I don’t’ think I’ll ever get ‘used’ to seeing her have seizures. Then when she feels good, is awake and talking to me- I forget instantly how awful things were before, and we soak up every minute of a happy Kaitlyn. Most days are good, and I have to remind myself of that on the hardest ones.  If ever there’s a lesson on how to appreciate the good and be thankful in and for each moment, Kaitlyn is it.

“Could you call EMS or maybe the SWAT team, just in case; so they can protect you and Kaitlyn while the EMT’s fix her? They could fix her if we call them.” says our sweet, wide-eyed Kai after watching Kaitlyn endure a seizure this morning.  Sometimes I don’t know what’s worse- watching Kaitlyn have a seizure-or seeing Kai, watch Kaitlyn have a seizure. 

No matter how unreasonable it may seem, there’s a feeling of guilt that sits in each day. Its relevance in the day changes.  Some days it takes over, some days thankfully-it doesn’t.   It’s a kind of self torture I don’t know how to stop.  As Kaitlyn’s mom, I should be able to do more. Feeling helpless is hard all on its own. Feeling guilty can sound or seem fruitless, but it can take over regardless. I feel guilty when I miss a seizure, guilty when I call for help, guilty when I don’t call for help. Guilty I don’t write everything down anymore. Guilty I haven’t figured out enough.  I’ve felt guilty that I didn’t react soon enough with emergency medicine, and sometimes feel guilty that I’m overreacting. Maybe I don’t see what I see, or I don’t see enough- there’s no way to know if I’m ‘doing’ this right.  This is one of the reasons the experience with the doctor in Oakland took over. She seemed to validate all the things I felt were my fault.  In these last few months, I’ve still struggled with what she said, even though I’d love to say I’m over what she said.  We can’t go back to any of the conversations we’ve had in the past. So why I sat (okay fine, still sit) for so many hours on so many different days wishing I could, I’m not sure.  I’m embarrassed that it’s taking me so long to recover from that.  I’ve also felt ashamed in how I’ve focused on what went wrong, when a lot went right after that experience. There’s a balance somewhere in this, where I’m incredibly thankful, grateful, inspired; and yet also completely offended, insulted and run over. Being bulldozed isn’t comforting at all, yet being comforted doesn’t always inspire us enough to change.  There have been many moments in my life when something awful inspired me to grow. Oakland is among that list now. I grew, I’m a better mother because of that experience, and I never want to go through an experience like Oakland ever again.  Knowing what we don’t have to tolerate has helped me as a person, not just exclusively as a mother.

During one of Kaitlyn’s first cluster of seizures after coming home from Oakland, I took too long to respond or even recognize it as a seizure at first. I doubted myself too much. I doubted what I saw right in front of me. I wasn’t going to be a good advocate for Kaitlyn if I stayed in that mode for long.

One thing I’ve learned repeatedly is that we don’t have to wait for Kaitlyn to get better to start living our lives.  That applies to so many things, for me personally and in how I plan our days as a family. We can do better and live each day to its fullest, with where we are at, exactly as we are, right now. Realizing that has helped me venture out of my comfort zone, both independently and with my kids. Clearly, I have a long ways to go, but I’ve finally made significant steps in that direction.  

 We were able to attend part of Windsor’s Relay for Life to honor our amazing cousin, Stephanie.  Stephanie is fighting and surviving stage 4 liver cancer. She fights daily for what so many of us take for granted. She inspires me as a mom, she’s incredibly uplifting and has a positive attitude like no one else I know. For the past 3 summers, Relay for Life has been an event we get to honor Stephanie, come together and feel like we are fighting with her. This year was different for us, but I didn't want to miss it. Even though we didn't get to participate like in the past, it still meant a lot to me to at least show up.  We waited until the weather cooled down and went in the evening. Then I attached the TPN bag, pump, and tubing to Kaitlyn’s stroller and it worked. I adjusted her formula time at home so she had a formula break while we were there.  Kaitlyn slept through the time we were there, but it felt so good to be surrounded by the group of friends I’ve missed so much in this past year. While Kaitlyn did sleep during relay, her active awake time in the weeks before the event was a HUGE part of us getting ready. Kaitlyn made purple pictures one night, one after another. Kaitlyn's love for Stephanie is evident just in saying Stephanie in front of Kaitlyn. She smiles big right away. Stephanie’s circle is an amazing group to sit with. I know I'm a giant cheese ball trying describing it all, but Relay for Life meant sooooo much to me seeing the group of friends I've missed so much.

I also started going to Search and Rescue meetings and events again. Finding my place in everything I used to be isn't easy, but it's re-definable and that's entirely hopeful.  We are lucky to have nursing care available for Kaitlyn so I can have breaks. Initially, it felt selfish- and now it feels refreshing and less selfish.  I registered for a class (EMT), which starts in two weeks. It’s full, and I’m on the waiting list so while there’s a chance I won’t get in, there’s a bigger chance I will. I'm nervous, excited, worried and can't wait-all at once. Kai was so excited; he gave me his hot wheel EMT truck, which I now carry with me. I got my hair cut- not sure how that’s an accomplishment, but it is somehow. I started baking again-which is like therapy, but a lot more fun. We’ve left our house more, not just during the limited hours Kaitlyn gets tube-free, but even with feedings on. It took a while to figure out doing that, but we did.  Not much can stop us now, and that’s what I want both my children to know to be true.  

I've spent time with friends, out in public more than once in the past 3 months. (I'm not short, they're just exceptionally tall). A good friend also came to see me, and we laughed about life, had girl talk which I thought I had forgotten how to, and ate junk food.

The kids and I started going on evening walks. Kai loves to push Kaitlyn in the stroller, and is constantly asking to help. I love our walks, and the conversations we are able to have. Kaitlyn is usually asleep, but when she’s up, she loves our walks too (and sometimes she growls at us, not happy with the walks).  Kai walked right through a pair of shoes. Exercise isn’t something I’ve mastered in this, but am slowly finding my way. I started running which sounds a lot cooler than it is in real life. I run in circles, not just metaphorically. In fact, we are now challenging that metaphor. Running in circles CAN get us somewhere. I set my timer for 5 minutes to begin with, and ran in my house. I have Kaitlyn on the video monitor so I felt like it was a safe, effective thing to do. Granted, I look ridiculous. Now I go for 45 minutes, and feel a lot better. Kai “trains” me in the back yard. He says he’d like a flare gun, but I’m thankful he doesn’t have one.  I attempted yoga, but upon Kai’s public imitation of me doing that, I’ve realized I’m no yogi. 

Last week, we went to the beach for two nights. While on Expedia making up pretend vacations (a weird hobby, I admit), I found where we could stay and we made it happen. Our beach trip wasn’t perfect, seizures and their effects followed, our schedule was off. Yet we made it, we had non-medical time away from home. We walked along a paved ‘Coast Trail’. Kai and I took turns pushing Kaitlyn. Kaitlyn slept most of it, but when she woke up, she loved the fresh air, the hotel and the sound of the ocean. At 2 am the first night, she woke up and said she was so “happy and lucky to be here at the real beach”. She drew a beautiful picture of the ocean. She makes a lot of pictures of the beach, and now that we saw it, the detail in her art has grown. The mini vacation was great for Kai too. We got to talk more, with no home distractions. He told me as many police scenarios as he could think up and I learned that ‘phone a friend’  and ‘eat chocolate’ weren’t  good enough answers to any scenario. 

The day we drove home, Kaitlyn was really off. It was the beginning of a rough cycle she just came out of.  We made it through though, and I’m so grateful for the break we took. I handled/managed the week better because we took time away together.  Creating good memories turns out to be incredibly good medicine, and the best way to fight for relatively normal.