temporarily stuck in a broken moment

There are moments in this crazy life that we all remember, both good and bad. The good moments that stay snug in my memory are my comfort & where I go when I feel overwhelmed.  Sometimes those memorable moments that stick are firsts, and other times- they feel like firsts because I somehow blocked out the first ones, the second ones, and so on. Kaitlyn’s seizures this week felt like a nightmare and it felt like the first ones, ever.

I am definitely not the most confident person, nor the most competent. However; I do usually feel like I manage Kaitlyn’s care to the best of my ability.  Except for in this week. I failed her this time, for a moment- a cluster of them really. The overwhelming guilt I feel is ridiculous and I’m annoying the crap out of myself, but I can’t seem to knock it off. Maybe writing it all out, in a confession will help.

The afternoon of her seizures had started off great really. Almost too great. She was wide awake, talkative, poetic even. Moments before the first seizure took her over, she had hugged Kai tight and told him how much she loved him, that he was “the best brother ever”. She sat with me, talking about how great her life is and said she wanted to watch Tinkerbell with me. She got cozy in blankets and I turned away to start her movie. I heard her before I saw her. The seizure growl is the worst noise- it doesn’t sound human. I see how some of us describe these as “seizure monsters”. She had slumped over and was convulsing, making the worst breathing noise. I flipped her over to a better position and started the timer on my phone. Her lips looked blue and I panicked inside and out- dreadfully waiting for the seizure to hit a minute because I knew to get the versed ready if it got to the second minute. When I changed her position, her lips went from blueish to pale, which seemed ‘better’. She kept seizing.  I fumble when I’m nervous so I draw up the versed at 1 minute, 30 seconds so if it takes a while, she’s definitely absorbing versed before minute 5. 1 minute feels like an hour during a seizure and I’m helpless. It’s not about me- but I want to fix these moments, erase them; moreover- I feel responsible in preventing them and I completely failed that. I attached the med dispenser to the syringe after drawing it up and gave her the medicine through her nose and waited more. At minute 4, the seizure stopped. Right when I felt like it was over- I think I took my first deep breath- she slumped over and started seizing again. And the breathing noise took her over again. I kept screaming “Kaitlyn- can you hear me yet?” And begging everyone & everything, real or not; to make this stop. Our sweet Kai was also there. He was running back and forth trying not to see what was happening, but not being able to get away from it either.  He was screaming for me to “call 911 now. Call the ambulance. Make someone get here.”   I heard him, but I was trying to convince him it was okay- the medicine would work any second. Why is it we’re constantly making things okay that aren’t in fact, okay at all?  I pictured the most ridiculous things while debating calling for help. I had beer on the table that I hadn’t put away yet because I spilled cranberry sauce in the fridge and didn’t want sticky beer. Who cares, right? But it bothered me that beer was sitting there, exposed and not put away. I hadn’t taken a shower. Again, who cares? The house was a mess. I didn’t have anyone to watch Kai. The firetruck and ambulance arriving would scare Kai. None of those thoughts are rational when I am in fact, being rational; but I wasn’t being rational at all. I actually had Kai put beer away. WTF, right?? I was not thinking clearly and I failed both my kids in that moment. I did give Kaitlyn the emergency medicine for the second time & the convulsing part of the seizure finally stopped. Her breathing stayed labored sounding for a bit, but I don’t know exactly how long that part lasted. I also videoed (is that even a word??) a tiny segment of the second seizure and some of the breathing. During the actual seizures, I called 911 three times but didn’t press send twice, and hung up the third time before it could really ring. I also called every direct line I have to a real person at Kaiser. Just in that moment, no one answered. Not because they failed, but because they’re human and we aren’t all glued to a phone. When the convulsing parts of the seizures were over and Kaitlyn’s breathing had returned to normal, she was still twitching. Kai understandably couldn’t handle being in the room anymore. I couldn’t relax inside at all. I called my friend Carrie who answered her phone and I crumbled. I have no idea what I said.  Not sure how she understood anything I was saying either, but she helped me find enough capability to carry on to the next moment. Once I calmed down, or thought I had, I called Kaiser again and got a hold of one of the nurses we love and when she asked me if I was okay, I said something ridiculous like, “absolutely not” and I started melting away crying again, like a big giant baby.  I’m not even sure how I talked to her or what I said. A few things she said stuck with me. She wasn’t saying it in judgment at all, but she said, “Kaitlyn has seizures.” Clearly I know this, but I felt like I learned it all over again. She set up a phone appointment with a doctor too and she went over Kaitlyn’s seizure with me. Still, I went to a dark place in my head. I didn’t trust my instincts as a mom or as Kaitlyn’s caretaker. Kai had been so scared and I wasn’t able to comfort him either.

Conversations I’ve had in the last 2 years came back to torture me- or more truthfully; I started torturing myself all over again. We’ve only had one neurologist I didn’t like. With all the doctors we’ve had, to only have one I don’t like is pretty good really. Except her words came back to my memory like a giant hand smacking me, and not the friendly foam kind. She told me seizures don’t cause any damage,  that parents just don’t like them and she always said, “if” in front of my descriptions of Kaitlyn’s seizures. I hold on to her ‘ifs’ like little destructive lifelines because if seizures weren’t really happening, then by definition;  they wouldn’t effing ever happen. If this was my interpretation gone haywire, then Kaitlyn is okay. If I was just being dramatic, then once we fix me, Kaitlyn will be fine. I’m in counseling, trying to fix me. It sounds ridiculous out loud, but if this could be my fault, I’d whole heartedly prefer it because I’d knock it off and then Kaitlyn would be the 12 year old she deserves to be. I remember a giant seizure Kaitlyn had in the hospital 2 February’s ago. I hate Valentines Day anyway, but I remember every part of that awful Valentines Day. When her seizure hit, I hid in a tiny window room crying while the x-ray techs called for help and they all tended to Kaitlyn. I cried in hallways with people I don’t know. I was a mess because there was no denying that what I saw, everyone saw too and because I couldn’t make any of it better. And there illustrates the problem with having video of one small moment of this big mean seizure- I can’t convince myself it didn’t happen. My denial and self-torture weirdly helps me carry on. Some people think I cope well, but I really don’t. I blame myself even though when I say it out loud, I know it sounds crazy.

The days after her seizures have been tough. She’s still affected by that day- her motility issues are even worse- she’s sleepier and she’s so uncomfortable still. She’s not tolerating formula like she had been the day before those seizures hit.  She bit her tongue and wanted a new one the first few days afterwards. She’s been confused- the whole week seems lost to her. Words she recognized in books before that are missing right now, but they’ll come back. She’s also still fighting another (or a continuation of the same one) tube site infection and that discomfort has taken over her little body many sleepless nights in a row.

I do know that we’ll get back to where we were- appreciating every smiling Kaitlyn moment. Kaitlyn will get back to smiling moments and telling us remarkable truths she observes in each day.  Kai is already getting comfortable around her again. He had a hard time being in a room with her after those seizures. I’ll do better next time- I really do know that. None of my self blame has anything to do with anyone being mean now- it’s just me being ridiculous. I know I’ll knock that off too. The kindest words have been spoken to me, in this week especially. I’ll listen to them, even if on a delay. Thankfully these moments that torture are overridden by moments of good, sincerity and love from those around us. I want to feel more Pollyanna about all this- but for this moment, I’m just feeling broken.  

Finding the comfort in uncomfortable

Being uncomfortable in my own skin both inspires change and prevents it; depending on my perspective, the day, how much coffee I’ve had and on the amount of fear involved. I’ve been so uncomfortable lately. I’m uncomfortable with the giant things I can’t fix in a day; like how things are going with Kaitlyn and my inability to figure it out and fix it, Kai’s school this year, if both kids are doing enough ‘normal kid’ things, that we haven’t been to the dentist in way too long, how to pay bills and still have enough money left over for gas & food, and my inability to predict the future. I’m also uncomfortable with little daily things- I don’t have a favorite girly coffee drink, we’re running out of laundry soap, I found the mixing bowl in the freezer yesterday, I need to mop the floor and I’m missing one shoe. The key to balancing this discomfort hasn’t found me yet, but finally in the past few months, I’m facing a lot of it, except I still haven’t found that fracking shoe.

“Mama. How come I can’t see the border? The border patrol must be pretty confused right in between Oregon and California.” -Kai

In late August, we went on our first ‘real’ vacation. We flew to Oregon to see family.  So many ‘firsts’ packed into 4 days. Our first plane ride together (& with TPN & all our medical gear), first time meeting family, first time the kids saw Oregon, Kai’s first airplane snack mix (he was REALLY excited about that), and the first time we all went in a taxi mini-van. Every aspect of our vacation was an adventure. I can honestly say we were never bored. In the midst of luggage falling, Kai questions, dropping Kaitlyn’s stroller by putting too many bags on it (and a pilot catching her), getting lost at the airport, coordinating a taxi mini-van (with a hilarious driver, even though he wasn’t funny on purpose) & adjusting formula/TPN times; we made it to Portland successfully. When we arrived at the Portland airport, the enormity of making it there hit me when we got to baggage claim because I wasn’t sure if all the plans I typed out were going to go as planned. Except then Kai held on to my hand a little tighter and got excited seeing our bag come out of the thingy that pushes bags out- and we carried on, pushing Kaitlyn through the airport with bags stacked up right. We did get stuck in those revolving doors but then a very helpful airport guy stopped the door and guided us in the right direction.  Throughout the trip, calmness overrode all the worry, or laughter did; even when it was the nervous kind.  We were able to meet a sister of mine I’ve never met before, her mom (who I looked up to SO much to me as a kid), see another sister, two aunts, an uncle and a cousin who I haven’t seen since I was younger than both my kids are now. Feeling like I belonged right away with our family, and that we were accepted and loved exactly as we came meant more to me than I have words for. All those cheesy things people say in movies when life feels ‘right’ and sparkly, and everyone’s words come out poetically;  that was the feeling seeing everyone we were able to see. My words didn’t come out right, but it didn’t matter. Sister talk at night in our hotel room with my sister Vanessa was so refreshing. I felt like we were kids again, and we laughed about a lot of the summers we do remember.  It wasn’t for long enough, and Kaitlyn’s medical stuff followed; yet feeling free and capable were experiences that won’t go away thankfully. Kaitlyn’s pumps beeped, seizures came, tubes were sometimes stubborn, but when she was awake; she was so happy, peaceful and in love with every part of the experience. Both kids couldn’t believe we were there. The ability to leave our comfort zone was a great realization for all 3 of us. It’s not easy, but it’s not impossible. We’re incredibly grateful, capable and supported. 

“I miss Kai. I prayed, I wished and I crossed my fingers. I still miss Kai too much. Even if it’s one day or one hour, I need my Kai.” -Kaitlyn

About a month ago (or maybe 2), Kaitlyn was miserable at 2am. Her stomach hurt- her tube site was a rashy, gooy disaster and nothing we tried helped. These cycles are so hard to break. I wish that was the only moment she was miserable and I wish I had magic mom powers. I remember that night specifically though because as she turned in my bed, crying and asking me to call all the right people to ‘fix this’, she threw the pillow, sat up and said, “I want to share a room with Kai. You never gave me an answer.” Finally, she had a problem I understood, and I could fix. She had been asking for months before that really, and even made a ‘room plan’ with their beds mapped out on paper and all the rules she’d follow. Kai had agreed to her plan and he added a spot for his police badges, but I was exhausted and never put their plan into action. I also worried about stupid things; like if they were too old to share a room, if it was weird with boys and girls, if important people would think this was a bad decision, and if this would contribute to our lifelong therapy needs.  However, that middle-of-the-night moment with Kaitlyn I decided to go with it. For an entire day (& night), in between medications, setting up her TPN and formula, taking her off formula when she was screaming, and getting Kai to and from school; I successfully moved their furniture around to have them sharing a room. Even though I had 3 purple toes, bruises all over from being less than graceful and it still hurts to move my right arm higher than my head, it was totally worth it. I dragged dressers, somehow balanced a bed frame over my head and in between doorways, pulled their desk and carried piles of books, toys, and clothes from one room to another without breaking anything except possibly one toe. Our house is small. I love it because I can vacuum the entire house and not have to change plugs and I can’t lose anyone- but it does make it tricky to move furniture. Her IV pole sits at the end of her bed now so we can’t close the door- but we don’t close doors much anyway. This is a lot of rambling for one room change- but the end result was 2 very happy kids. I love how close they are. She was still miserable the following nights, but less so. Kai curls up next to her and reads to her. Kaitlyn stays in her own bed now- that hasn’t happened in a long time. Kai- my little midnight house walker—now stays in his bed more too. This was an excellent lesson in listening to my kids more. Also a good lesson in allowing myself to just do something different without letting all my lame questions get in the way. I know, baby steps really. Next time hopefully my asking-less-questions story is more exciting.

                                       

"Mama. This is the best birthday, ever. I am the luckiest!" - Kaitlyn

Kaitlyn turned 12! I don't know how that's possible. Time is flying way too fast. Every time she was awake on her birthday, she smiled big and said it was the best, ever. Not that there's ever a good time for a seizure, but having them on her birthday seemed so completely wrong and unfair. However, she made the best of every waking minute, celebrating her big day with smiles, snuggles, giggles and appreciating for every little thing. Even though she doesn't actually eat cake, I made one- my best attempt at a guitar cake (with guidance, support and supplies from Lisa!) and Kaitlyn made top secret 12- year old birthday wishes. 

“Doing art makes me feel like I don’t have any worries or seizures and nothing hurts.”

She has a new and sweetly perfect answer every time someone asks her why she likes to do art. Late September, we watched an amazing event come together. Kaitlyn’s art was displayed for our community, friends, family and Kaitlyn’s sweet circle of people she adores and leans on.  The newspaper wrote a sweet article about Kaitlyn, her strength and her contagious optimistic view on life around her. In the headline, she was described as a preteen.  That was her favorite realization and since then she often starts sentences with, “well, since you know… I am a preteen.” We won’t ever forget all the effort, love, support, and the turn out for Kaitlyn’s art show. Kaitlyn slept through most of the art show, but she remembers the moment she woke up like it just happened. She was so excited to see all her favorite people in one room, and right next to her.  All the work people did to make it happen was incredible.

I still haven’t grasped the magnitude of Kaitlyn’s art show. Seeing people I hadn’t seen in so long was incredible. The love and support in that room was immeasurable. The visual of people coming in the door to see Kaitlyn’s art was so comforting and completely inspiring. People who had read the article showed up and shared their stories and why they came. Some had friends or family with seizures or other medical stuff and were inspired by Kaitlyn like they were by their loved ones. We’re all in this together. I realize that over and over and clearly have to keep learning it. I don’t want to accept what’s awful in this for Kaitlyn, but I do accept that she shows us the good over everything else.

Part of why Kaitlyn slept so much at her art show was because she was fighting this tube site infection. Her site was raw and oozy- and it was hard at first to tell if it was infected, or just affected by the tube. The tube itself had a leak- but since it’s a g/j tube and requires a procedure to change it out- we were all hesitant and careful in deciding to change it. Eventually we did get it changed in SF and it was just a night’s stay. On our way to SF, I went through the coffee drive-thru to feel all fancified before hospital time. Coffee really does taste better when someone else makes it. The guy ahead of us paid for me. I was hoping it was because I used a curling iron and brushed my hair and had lipstain from the dollar store, but I read on the internet that this is what coffee line people do. So we paid for the lady behind us, even if she didn’t have dollar store lip stain like me. What fun that is! I think I’d like to spend more time in coffee lines. That random nice thing he did for me made my day a lot better. When we got to SF, Kaitlyn missed her brother like it had been weeks though- and she really didn’t like everyone looking at her tube. This is a long drawn out story- but she’s still fighting this exhausting site infection, and she still doesn’t like anyone looking at it. It started getting a lot better, and now it’s oozy and painfully ick again. I know we’ll figure it out, but I sure wish that was figured and fixed already. She’s on antibiotics, creams, ice packs and lots of snuggles.

Dentist to Kai: “so buddy, how often are you flossing?”

Kai to dentist: “well, my mom flossed my teeth about an hour before we got here.”

We finally made it to the dentist last week- I kept putting that off and it was another thing that I felt terrrrrible about at night when I get stuck in my thoughts and everything feels so big and endlessly bad and the list of things I’m not doing right is very long. At Kai’s well check this summer- I couldn’t check the yes- we routinely-go-to-the-dentist-every-6-months  box, and I’ve felt so bad ever since. It took a while before Kaitlyn finally woke up enough for x-rays but they were all so patient and accommodating. The first 2 tries, we gave up- but Kai was a great patient! Kaitlyn wasn’t a fan, but not because of anything to do with her teeth, she’s just uncomfortable lately. We are flossing better now.  The dentist was so great with her, with Kai, and with their weird mother in the corner. I was trying to explain why she was crying- she’s seen new doctors this week and her tube hurts. Then I said, ‘and she thinks you’re a doctor’. Ooopsies. Dentists ARE doctors. I tried to fix that, but I’m pretty sure I have a very earned flag in their file now. And, for her next cleaning, the plan is I’ll go in another room.

“Can I get some hot chocolate in a paper cup, and pretend it’s a cup-of joe, like at a real police meeting?” Kai

Kai’s 4^th grade parent-teacher conference was such a refreshing glimpse into Kai’s world. I worry so much about how everything we balance affects him. Seizures scare him, he’s so close to Kaitlyn and he worries a lot.  I would do anything to make this better for both of them. Kai often tells me he’s okay, and when he worries, he tells me that too. His writing illustrates how he thinks. He writes sentences every week for homework- they’re usually a compilation of facts, or the way he views things-using his spelling words. Reading those is a favorite part of my week. I worried too, that I’d have to explain some of them at this parent-teacher conference. There’s almost always an embarrassing mom fact he adds. Seeing him in his space at school helped calm my mom nerves. He’s doing an incredible job balancing what he does and he’s a confident, loving and sweetly serious kid. I am so thankful for him, for Kaitlyn and grateful every day that I’m their mom. It’s not always comfortable, but it’s an incredibly comforting experience.