It's a clusterful update

The wheels of something or other run really slow, a watched pot never boils, the definition of crazy has something to do with repeating the same thing and expecting different results, blah, blah, blah. I should change the subject and maybe switch to decaf. Besides the fact that I don’t run unless being chased or there’s a spider in the room; lately I feel like one of those hamsters (or are those rats??) in the wheels that go and go and go, but never end up anywhere except where the little shit started. But then people say to be the squeaky wheel. That didn’t really work out for any of my hamsters. WTF am I talking about? I don’t know if I believe in jinxing things. If I do believe in jinxing things, I’ve been an accidental jinxer forever and I’m really hoping that turns around soon. In all the chain letters I’ve received since 1992- with promises of 12 dishtowels and friendship bread starter that never dies; I’ve never once sent dishtowels, or recipes, or pot holders; and my friendship bread starter did in fact die without ever becoming glossy braided bread, or even bread at all. I’m responsible for all those broken chain letters. Good intentions, but no follow through. Why does any of this matter? I’m constantly trying to make sense out of nonsense. Maybe I should start handing out pot holders.

Kai: "I feel like I just witnessed a national tragedy and I can't escape it. But no one knows how scary this is except right in here. And we can't fix it. And that sucks."

I took this picture right before Kaitlyn had a seizure. I had no idea she was about to have a seizure in that moment. We literally went from smelling roses and giggling to her dropping the vase, her seizing, me dropping my phone to catch her, Kai running to find the phone & set the timer;  chaos just taking over our beautiful morning. That seizure was actually a few months ago. She has had more since, some bigger, some shorter, some less intense. No seizure is a welcome event; yet no seizure ever asks first before taking over our sweet girl. After that seizure, I wrote the following (paragraph below)- I felt better writing it out I guess. I don't write all of them down anymore. I used to track her seizures on forms I made, log them in the computer; trying to track patterns so we could prevent them better. All that effort, energy, time; it didn't prevent anything except living our day in spite of it all. While there is nothing wrong with tracking each one at all, it got to the point where I felt that even the logging of it all made things too predominantly seizure-mode and that's not helping any of us. That balance I can't find but keep working towards- where I'm not quite in denial because we do face the toughness in our day, but we also live each day to its fullest.

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Kaitlyn was sitting on the couch, with her headphones on to listen to her music before baseball started. Kai had just finished cleaning his room and was going to take the garbage cans out to the street.  And then everything normal stopped and chaos took over. That seizure sound- all described and heard before- never gets less shocking. The way the couch was reclined and her headphone cord was wrapping around her wrist and across her neck was making reacting in memorized steps a little more challenging.  Initially, I didn’t notice the convulsing itself. Her arms reach up and her breathing changes to make that sound.  Her whole body was also stiff at first, and then started going into convulsions.  She became this super power in a different form than we’re used to- all moving muscles with no ability to control them. I got the headphone cord off her, which felt like too long, and then tried to reposition her. But repositioning a 13 year old in a big seizure is no small thing. Somehow we got that figured out and her coloring around her mouth went from pale to purple. As the convulsions changed, her breathing sounds got louder, slower, deeper, and gargled sounding.  As soon as it seemed like it would stop, she’d start again. There should be a big long fucked up word for all that. I have her emergency meds in a little bag on the table so grabbed the versed bottle-flipped the cap off that, opened the med syringe- measured the med out- put it in between her gums and her cheek.  Still convulsing. I repositioned her again into the recovery position but her lack of any muscle control all while using all her muscles made that really tricky. Started the timer on my phone and then took some video of it in case that helps her doctors. Those moments, I’m out of anything to do to help. How literally 2-5 minutes can feel like hours is hard to describe. I told Kai it was ok which felt like a big fat lie. He had started to take the cans out and came in to ask me something, walking into all the above. He started counting- it helps him know that it’s less seconds than it seems to count them out loud. The med started to work, convulsions stopped, her breathing sounds changed (for the better) and her face looked more relaxed. Her color slowly but very surely improved. And then she started all over again. At least the second round started in a better position and was a lot shorter in time. Right when I was going to call for help, she stopped. She took a bit to breathe as well as I like, but she really, overall recovered incredibly well. I checked her blood sugar (which was fine) since she was on TPN, checked her all over for any obvious bumps from the seizure, snuggled her up, listened to her breathe, and cleaned up.

The aftermath is a wide-eyed Kai full of questions and observations, a room of misplaced things I moved or threw to get them out of her way, med supplies strewn about, and then my own adrenaline.  I can clean up the stuff but our hearts stay affected.
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Those moments take up all this room here; physically, emotionally, all of it. There is nothing routine about a seizure or emergency in your own kid. The things that are semi-routine are the tasks I know how to do in a seizure or some emergent things with her. Even those tasks, while I can do them, are done with shaky hands and that feeling that I want to cry stuck in my throat somewhere thankfully unreachable in those moments. I also reach out to others who know what to do- her doctor is stuck with my questions, and so are my small circle moms in a similar boat. And the support in the aftermath is huge. I think as the days, weeks, months and now years pass and we have a different circle than we started, it’s helpful- hopeful even; to remember that these scary moments don’t outweigh the good ones and we really aren’t alone. And it helps to scream here and there. Kai’s right, sometimes this sucks.

I want to advocate for Kaitlyn more productively and we're still trying to figure that out. Caring for Kaitlyn is complex, but also straightforward.  I appreciate some of the straightforward things in our lives. The cluster of tasks, meds, TPN, formula, line care protocols; they all come with tangible to-do’s. I know how to do them and am honored to care for her every day.  Of course I wish we weren’t doing any of this- I would do anything for Kaitlyn to not struggle or feel pain or endure another seizure; and at the same time, the tasks in her care to give her the best day possible help me to not fall over with the unfairness and sad in this. Care taking is all consuming but it is also a very tangible way to make it through a day when you can’t fix what’s going on with someone you love. Advocating is this confusing dance- I don’t always know who to keep calling, who to stop calling, what to say, or if anything I’m doing is working.

When I make calls advocating for Kaitlyn, it is rare anyone who answers the phone asks me why I’m calling anymore because they already know.  It's like Cheers, but different, and no one is drinking. When I first started writing letters about what was going on with home nursing care and our experience, I would receive calls and it felt both motivated on its own, and motivating to keep going. Now it sometimes feels frozen, and I'm not sure if that means it's slowly moving forward or if I should try harder. All of these experiences advocating for Kaitlyn combined make for the most inspiring yet standstill process to be in. Right before I dial any call asking for an update for things in limbo with Kaitlyn; I feel like I revert back to my awkward self from 8^th grade (sans the metabolism and thick hair) calling someone. I get all nervous- practice what I am going to say, and hope they don't decide I am unworthy and hang up on me. Seriously, just like 8th grade.  I hate starting a phone conversation now just as much as I did then, but I keep doing it. Explaining who I am, why I’m calling, why this is important, relevant, blah. The positive difference between me now and my awkward self in 8th grade; I don't give up like I did then. I think it’s good people know I’m still here, still asking for an accountable, safe, productive system that helps kids like Kaitlyn.  It’s also flattening that home care has this many holes still.

Kaitlyn isn’t the only medically complex child in our county who has no home care. Not always because it’s not covered by insurance (it is covered, although that is complex in itself); but because there is none available, or because what is available is unethically selective. One waiting list she’s been on for a year- there are many kids who need home nursing care on that list. This month marks a year since I started reporting what was going on with a lack of training, how unsafe it was, how I was being treated, how protocols weren’t being followed (or even addressed) by the agency. We are at a year since Kaitlyn lost any home nursing care when the owner of the agency wrote that letter to me. It has been a year since I made copies of that letter and sent them to legislators with letters of my own. A year since I told Public Dept of Health I didn’t need to be anonymous anymore.  I’m scared every day that if I stop advocating for answers, home nursing care, fairness, and moving forward, all this will be pointless. Some days I get caught up in thinking it’s a little insane we try and find productiveness in suffering and everything that’s shitty- but I whole heartedly think that’s a way to do more than survive a day. In a recent conversation that I was starting to think I was advocating the heck out of, I lost sight of finding the right words. Being exhausted found its way to take over. My mind drifted to ironing pants for some reason and I said out loud, “I’ll wear pants.” I probably ruined my credibility but at least it’s well ensured that I will in fact wear pants.

Like any other mom, I’d do anything for my kids. The trick seems to be in figuring out what the hell ‘anything’ means. Is it the right task, process, person to talk to, learning how to wait? If I could trade places with her, or take this away; of course I would. I just don’t know how. I strive to find a tangible way to do the ‘anything’ for both my kids.

It’s hard sometimes to see which direction we’re going because all I can see is right here. Right here, the air feels too heavy some days. I’ve noticed if I don’t get us outside, visit with friends, go on adventures; then emotionally all 3 of us are too droopy. Getting out means measuring and packing meds, formula, etc.  The backpacks for formula and TPN tangle up with the tubing that connects them to Kaitlyn and it feels like I’m constantly rearranging them around her arms, my arms, the stroller, people we walk past, and the car door sometimes. If I were better with metaphors, that would mean something.  Carrying Kaitlyn in and out of the car depending on the day, and paying attention to her schedule are constant reminders that there is a lot of effort in relaxing and attaining this ‘normalcy’ we’re shooting for. Sometimes I’d rather shoot vodka. I really need to stop making those jokes in public. In all seriousness, it’s always worth it when we find normal in this- our quality of life is better all around when we get out to the beach, hiking, having coffee with friends, etc. Changing the scene literally changes my perspective, and I’ve needed that even more lately. Kaitlyn says something dynamically sweet and poetically big picture and the day is okay again. Recently, we made it to the coast after parking the stroller in the sand- Kaitlyn was bright eyed, wide awake and in awe of the entire experience.

Kai played baseball for a different league this year. Really it was my fault, but it ended up being an incredible thing. I saw our league’s signups but I didn’t have the money. There’s a rule with getting financial assistance that you have to volunteer for a set amount of hours- which is a great rule, but I wasn’t sure how to do that with Kaitlyn. And instead of telling someone my dilemma, I stubbornly wanted to figure it out on my own. So I was trying to save up money. Between expenses, rent, keeping the lights on, groceries, gas, life; I didn’t save up enough on time. Every time we had an extra $5 we were out of milk or something. Then finally, I sent an email although it was past the deadline. I didn’t get a reply back.  Again, my fault. Kai has played since he was 5 and I messed up. I was the late one. Once I started admitting my parenting fail, every part of not getting Kai in baseball felt sinking.  Saying it out loud in conversations also helped though. We started brainstorming, I tried emailing again. Then my sister suggested the town north of us. They play little league, and our town is Cal-Ripken. So the benefit of that is that even though it’s not our town, Kai would still be able to play baseball because that’s his zone for Little League. Anyway, they embraced us quickly, even late. When they provide financial assistance, they call it a scholarship. It's still financial assistance, but it feels better. I am embarrassed constantly about our situation. I want to better provide for my kids and give them experiences I have not been able to. With the baseball ‘scholarship’, I cried at the positive way that was all communicated, done, and given.  No words of criticism or frustration at all. Kai was placed on a team quickly. The whole experience was so positive. He came so far so quickly and his confidence grew. I wish I had a picture of his face when he scanned the line of parents and found our faces when he made a play or was up to bat. His dimple showed, big smile, and then he’d be back in the game. That’s pretty illustrative of Kai- he’s so focused, but he always takes a minute to check in and smile too.

While I’ve failed at sending the letters out so far, Kai wrote out a thank you letter to Healdsburg Little League. 

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from Kai:

The best thing I like about baseball is playing it. I also like relaxing and watching the game with my mom and sister. It’s something we all do together. But I always cheer for whoever is playing the Giants. I like watching the Dodgers on YouTube because it’s really fun and it makes my mom and sister freak out. I’ve liked the Yankees since I was 2 or 3. Sometimes people say that doesn’t make sense but it does to me. Healdsburg Little League was really fun and I am very thankful I got to play this year. My team was really nice to me and the coaches all helped me and never made me feel bad if I didn’t know where to go. When I messed up I would learn what to do different.  I have favorite positions for baseball but any position can be really awesome. I got to try pitching this year. Wherever they say to go it’s fun.  When I’m playing baseball I get to focus on what I’m doing and not worry.  When my mom and sister came to my games, I felt like I had some spectators. Playing baseball makes me feel focused and when I’m playing catch, I have fun. Baseball is the only sport that I really know how to play. I like figuring out what pitches are coming when I’m batting. I like knowing the rules and talking about it to my mom.  At first I was super nervous I would get hit by pitches, but then I stopped worrying because when I did get hit by the ball actually it wasn’t so bad. My coaches this year were funny and Brad inspired me to play baseball more and play catch with my family more. We can’t play in the house unless it’s a nerf ball. I also really like baseball parties. We had 2. My mom worries about Kaitlyn but she tries to look like she’s not. And she worries about me. And she worries about other people, like my cousins. But in baseball, she smiles and is happy and doesn’t look worried. I think she was most happy I was on the Giants this year. And I saw her laughing with some moms. Giants fans.. I know, they can be hard sometimes.

Each time when I go with my team, I always think to myself a song I saw on the Dodgers YouTube; “it’s a good day for a home run or maybe a triple is ok, we’re gonna cheer” I never actually hit a home run but it was always still a good day. Thank you for the chance to play. Hey, that rhymes.

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This is kind of all over the place. I came here to update and then I wrote for 6 miles, shared Kai’s letter, and I don’t think I’ve updated anything. See...hamster wheel.  Kaitlyn’s still on TPN 20 hours a day, but formula is going better (for 18 hours a day). We spread her meds into smaller doses and she tolerates the volume better that way. That also means meds every 2 hours from 6am to 10pm, but it's helping her. If I'm being super honest, I do think her seizures are worse in that they’re almost all convulsive now and end in that scary after-seizure breathing.  They’re more frequent than they once were, but definitely less than other cycles of this too. The good really honestly outweighs and out numbers the bad. Most importantly, she still has incredible days and even weeks in between them. She has a new central line for TPN which is working really well now. The details are foggy now because I try to forget them so that I don't get hung up on it, but the process in getting this line was not our best collectively. I know I could have done better- I was frustrated, exhausted, and deflated and it took me a while to speak up to the right people. Initially, she had her line replaced because it was leaking, bleeding, and not flushing very well intermittently. She had that line for 3 years and the day it was replaced was not a good communication day for the surgery team and the SF ER doctor. After that was resolved, we went home with a new line, but it ended up needing to be replaced again 7 weeks later. Those details don’t really matter- she’s doing better. And she's definitely cared for by every doctor and nurse she's seen, and probably even more she hasn't seen.  Those were very tricky weeks though, and ones I don’t really want to revisit for all kinds of reasons; even here. Moving on, we're celebrating the improvements and better days. At night especially when I’m going through papers, emails, and trying to figure things out; she always says, “have hope, mama”.  I promise I do, Kaitlyn.