Updating & redefining

Kai: “Mama… can I say a bad word out loud, right now?”

Yes.. ok.

“Stuppppppid. Seizures are stupid. I hate them. I wish they never happened.”

He’s right. & I hate them too. How can I help him, help Kaitlyn, help at all? I feel like I’m running low on answers. This balance of being okay with where we are at, while moving forward, advocating, caring, loving, living.. it’s not an easy one.  Seeing Kaitlyn awake makes every rough moment disappear temporarily. Listening to her sweet voice, seeing her art, watching her re-learn written words, and sound books out  on her own again- it’s the most inspiring experience. I’m lucky enough to see this every day. Except this is all so painfully, completely unfair. She’s absolutely the strongest soul I know, & yet she seems so fragile too.  We are affected by what seizures and their aftermath have created, done, left and do still. We don’t let that guide our lives completely, yet we are all affected, every single day. I don’t want to apologize for how this has shaped me because if I really think about it, being affected by this is part of what keeps me fighting for Kaitlyn. The worry I constantly feel is painful, but it drives me to keep moving forward for her. I don’t always appreciate being affected. The way my eyes well up with tears if someone says hello at the wrong moment when I’m feeling the most isolated; it’s embarrassing and some days I want to have a normal reaction that makes me blend in.  Sometimes I wish I had a filter for the things I hear myself say out loud. This mix of daily chaos I run around is at least partly to blame for my inability to just be normal. I don’t have this balance yet, but while I recognize that being affected is a positive thing, I also crave the experience of feeling like I belong just like everyone else. I don’t want to be thought of as sad, lost, or broken.  More than that, I don’t want to feel sad, lost or broken.

 

Kai had a school play a few months ago.  It was so important for us to go. Kaitlyn was having a rough seizure clustered day, but we were determined to be there. As the seizures continued,  Kai’s eyes got bigger and he kept asking me, “are you sure this is a good idea? That was a big one, Mama.” Yes… we’re here, Kai. It’s okay. It must be confusing to keep hearing that this is okay, when it clearly isn’t okay. I don’t see the parents of Kai’s class very often because I’m usually wrapped up in all of this. I’ve missed so much of his year and I started feeling bad about that too.  A few of the moms came up to me and asked how Kaitlyn was doing. That was the one thing I couldn’t answer because it felt too raw that day. I couldn’t lie and pretend it was fine, but I didn’t want to admit how hard this is either. I’d be a terrible poker player. I cried instead of answered which opened the wimpy side of me, melting away. And while I felt defeated, I learned again how much people care-and that’s an incredibly great thing. I didn’t remember my camera, I didn’t video tape any of it. But we were there. I saw the moment Kai looked around for us while he was up on stage. He gets this smile that shows up in his eyes, his dimple shows and the corner of his mouth smiles even though he’s trying hard not to show it. I love that smile. I love all his smiles, but the I-see-my-mom-and-I’m-in front- of –a-lot-of-people smile is one of my favorites. He was an adorable moon. He looked so grown up yet so tiny all at once. After the play, he loaded up on cookies, we said good-bye to his friends and their parents, and back to the parking lot we went. Our sweet Kaitlyn’s unrelenting seizures came back. It always feels unfair, but that night it felt even more unfair than ever. I ended up checking in with her doctor again on what to do- gave Kaitlyn emergency medicine, and the seizures stopped. And even in all of that, we made it. Kaitlyn’s seizures stopped, Kai was so happy that night; and those things mattered more than anything. Not all days are bad, and even exceptionally hard days have more good in them than not.

We are finding more effective ways to function within the chaos. Kai started baseball and baseball season started all around. The way Kai lives in baseball mode is so cute. Except I have to come up with a different word- he says it’s not cute. He takes it so seriously. He came up with this idea to wear his baseball pants backwards. He likes the pocket right in front, where he stores his very serious stash of gum. Kai's had his best friend over for a sleepover- which was so much fun. We've gone to the beach a few times. Kaitlyn's good moments have included her playing the guitar outside, making a sweet book for her doctor, singing to us, reading books, homework and more art than I can count. Every moment is appreciated.

One of the things we do now is to go to the school Kaitlyn would attend if she were stable enough to- on Wednesdays just for lunch. We meet with a small group of girls in a classroom. They’ve colored together, talked, giggled, and carried on like 11 year olds do. It feels like a glimpse of life the way it should be. We look forward to it every week, although it doesn’t always work the way we plan. Many days have been rough seizure days and we’ve missed it. Some days, even when we make it, she’s slept through the entire period. However, the days that she’s been alert for that time has meant the world to her. The girls are all so sweet. They love Kaitlyn and for that sliver of time, life feels like the normal we are grasping for. The girls told Kaitlyn what a great artist she is; Kaitlyn still talks about that.

Kai: “Do you have a lot of rules at your school? Does your teacher know you have kids? Does your school know about Kaitlyn?”      

These last months of balancing Kaitlyn’s care, Kai’s needs, going to class, and trying to figure out how to foresee what’s next;  all intensified at once this past week. Kaitlyn developed a fever-which didn’t make sense because she didn’t seem sick initially. Then her seizures clustered.  Then her motility and stomach issues worsened. The first night of this cycle was the night before an exam in class. With no sleep- I came to class and took the exam but then I left to care for Kaitlyn and bring her in. That was the first time I missed a question on an exam-and I was so bummed out. I had this 100 percent thing going for me which was a very goofy goal I had been maintaining. In the days that followed that exam, I spent our nights staying up watching her every twitch and muscle jerk hoping it wasn’t leading to anything else. I spent all day trying to figure out how to get the adequate amount of nutrition in her without hurting her because she didn’t want anything in any tube or anywhere near her. In class, we were preparing for the final but my head was preparing for how to help Kaitlyn. I’d make lists next to my notes in class of who I should call, what I should ask, and how I can help her. If I lower the rate of the pedialtye- or add half formula to start, do meds slower-or more spread out.  I’d compare what we learned in class to anything that may help me understand what’s going on with Kaitlyn or how I can better take care of her. I had 12 skills sheets to memorize for class. I knew how to functionally do the tasks they were asking, but I had a hard time memorizing all the words.

Then thankfully, her fever went away slowly. Seizures stopped clustering as much, and her stomach was slowly allowing formula with out as much resistance. It wasn’t great yet, but the unmanageable felt closer to manageable. We made it to Kai’s Open House night, but Kaitlyn’s seizures took over that day too. We were on our 4^th day of no fever- I went to class and then stayed after to study with some of my classmates. In that study group, I was starting to feel off. I can’t describe it, but I wanted to get home and I couldn’t bring myself to repeat a skill sheet anymore that afternoon. I came home 2 hours early. The nurse watching Kaitlyn said she had remained sleepy, but fever free. All sounded good- and exactly as I left her really. I wasn’t sure if I was just feeling the worry about the upcoming final or just tired, but I felt so uneasy. I kept checking Kaitlyn- she was cool to the touch, but getting pale. I checked her blood sugar; it was fine. Then she started shivering and moaning. It wasn’t a seizure at all, it woke her up and she said she said she was “freezing”. I checked her again and she had a slight fever, 100.1. She was on TPN, so I checked her blood sugar again. It was still fine. I called her neurologists office to see what the nurse there thought. I kept apologizing for calling- thinking I was being paranoid. Just in the time we talked Kaitlyn got so much worse. The shaking intensified and she looked awful- color shouldn’t be so hard to describe, but the tone of her skin and lips wasn’t right. She looked grey. I checked her fever again and it was 101. In talking to the nurse, we decided I should call EMS because this came out of no where and Kaitlyn didn’t look stable. I hung up with the nurse and then felt more worry. Kaitlyn’s shaking was so bad and none of her symptoms made any sense. I questioned myself on if this was really a 911 moment. That was the start of my emotions overriding my ability to think straight. I dialed 911 and was calm for maybe 7 seconds at most. They transferred me to the medical dispatch & as I was describing Kaitlyn and why I was calling, she said, “Is this for Kaitlyn?”. That’s when I melted. She knew us, and a familiar voice helped me let my pretending-to-be-strong guard down. I cried the rest our conversation and still cried when the paramedic and emt arrived. I’m so thankful for her, I know I didn’t sound like it, but in talking to her, I felt better. I don’t know if ironic is the right word. No word covers this day correctly. The emt was the same emt I went on my ride-a-long with for school. Ironic because I’m trying to stay the course in school to better prepare for emergencies, yet handling real emergencies is hindering that goal.  The paramedic was great with Kaitlyn, and very tolerant of me. I remember some of the ridiculous things I said out loud, but fortunately, I don’t remember them all or I’d probably move to France immediately. I remember asking him to promise me she’d be okay. So he did, carefully. Then I told him I needed 3 people to tell me that. WHY 3? I have no idea. So he did that too. By the time we got to the ER, Kaitlyn’s fever was 103. And then almost as quickly as it started, she returned to ‘normal’. She talked, laughed, told her favorite embarrassing “mama stories”, DRANK OUT OF A JUICE BOX!, stabilized right there in front of us. I couldn’t believe it. I don’t understand how a high fever enabled Kaitlyn to feel thirsty, and she actually asked for  a drink, but for the most part, it’s a very tricky process to convince her to take a sip. Because nothing makes sense about any of this. It’s not fair, right, reasonable or okay. Feeling helpless leads to feeling guilty for me.  Have I not offered enough juice boxes? How can I help her better? I don’t know.  As they have every time, the ER took great care of Kaitlyn. The pediatrician who came down to see us was thoughtful, calm, thorough and great. I, for some reason, was not great, thoughtful or calm. I wanted to be so excited that she was okay, but I was so worried she wasn’t going to be okay again. That uneasy feeling wouldn’t go away. We went home and her temperature went up. I stayed up the entire night with her, making sure we kept the Advil/Tylenol routine going. Seizures came, but nothing scary enough to call for help. We made it to morning and went back to see her doctor. Kaitlyn had a fever of 101 there, but her color was great. She wasn’t comfortable, but she was responsive and sweet which helped each moment feel more manageable. Then seizures intensified, although never enough to be an emergency. Somehow ‘emergency’ is completely re-definable. In my tiny brain, this would have been an emergency 2 years ago. How is ‘not okay’, in fact; okay? I made myself sleep for a few hours, but I basically stayed up that night as well. She had more seizures, stomach issues, that lingering fever.

The next morning, I had my skills final for EMT class. Oh, crap. I had studied them, but I hadn’t been able to study them much right before the final. My heart felt like it was in a million pieces and places. There are a lot of rules for EMT class. Most of them make sense- and even the ones that don’t individually make any sense seem to serve a purpose overall in keeping students accountable, humble, prepared and motivated, or scared which seems to be a prerequisite to motivation lately. Although that day, it seemed like they served the purpose to scare everyone without the motivation aftermath. Sometimes it’s not the skill we need to prove, it’s the ability to play the game. This is why I don’t date.  I don’t like games as a means to moving forward. Except that this class, the game is worth it because the end result is completely worth it. The class as a whole isn’t a game at all, just certain aspects of process felt game-ish in the sense that the skill or task at hand wasn’t the focus, but how to approach it, was. It’s worth it because finishing this class would mean so much to me. It would feel like I accomplished something that helps me as an individual and as a mother. Staying up all hours of the night with a book to study and absorb helped lessen the hurt in not understanding what’s going on with Kaitlyn. Going on ride-alongs as an observer helped me replace memories of being in that seat as a mom. I feel stronger in my life as a result of being a part of this class. The whole semester rode on that one day though- the process of the skills final. If we had skills memorized the way the sheet says, even though ‘real’ life goes differently, then we make it to the final round of a multiple choice test. We’re not allowed to have our phones, for obvious reasons during the testing day. I had the hardest time with that rule because Kaitlyn’s impending instability was so hard to balance even with the ability to communicate with the nurse watching her, but felt impossible without that ability. We sat in one room and waited to be called to sit in another room where we waited to be called again. No study materials, phones, or anything other than our uniform and frazzled-but-hopefully-prepared minds. I tried to blend in and pretend that this test was all I was thinking about. Everyone in that room was stressed. You could see the tension. We moved from one testing station to another hoping that our fate at the end of the day was a good one. The great unspoken, unplanned event was seeing how all of us from different EMT classes clapped for everyone who ‘passed’ as they exited the room. People I didn’t know told me, “You got this. Keep smiling.” Lots of hugging, cheering, and support from strangers-which is what’s gotten me through this entire process with Kaitlyn as well. The support I have now is not the one I started out with. And while I’ve struggled with that along way, the process has helped me establish friendships that I may not have noticed or appreciated without the rawness of all of this. There’s strength in admitting weakness and there’s a lot more progress in standing still than I first realized (except in EMT class).

I went through the skills stations hesitant and vulnerable, yet hopeful. As I waited for the last skill station, I could feel the end in sight and couldn’t wait to get to my phone to make sure Kaitlyn was okay. I also suddenly felt the weight of my potential to fail the exam. I felt so many things at once, and I wanted to just cry, be weak, fall apart, fall down, anything besides sit there any more.. Then she called my name to go to the final skills station. Ironically, the last skill was the easiest skill- the one I had memorized without effort. Again, ironic isn’t the right word, but I can’t think of another one.. it was the one skill station I felt I good about before opening the door. I knew that one before I had confidence in the other skills. Once I was performing my skills sheet though, I was nervous, fumbling, shaking, and crumbling inside; all while trying to be a good skills sheet parrot. I hit my low as I lingered there and even worse as I walked out of that room. I failed the station. Eventually I passed because they let me fall apart and repeat that part of the exam (not because I’m special, they let anyone remediate a skill once). My failing made me feel so inadequate and so wrapped up in the process there that my real-life perspective was temporarily MIA. Once I hit the crying phase of falling apart, I have a really hard time finding my strength or confidence. I cried even as my instructor told me I passed. It was then that I tried to explain why I failed initially, but none of my words made sense or even came out in the right order. Way too much crying in front of people for one week. I cried until I couldn’t see right. I walked into a pole and tripped over a tiny plant. That actually takes talent. I called my friend once my phone and I were reunited and I had checked on Kaitlyn. As the best of friends do, my friend listened to me cry, wale, bawl, say incredibly stupid things and made me feel like I belonged, was important, smart, and most importantly; that I was okay. I came home to a sleeping, beautiful, strong, amazing Kaitlyn. She is improving really, albeit slowly. I cried last night until sleep found me, and even though I now look like a night gone wrong in a big way, I’m okay which is thankfully re-definable. I don’t know what this next week will look like or what’s going on with her, but I’m hopeful we’ll figure it out.