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. 

Updating, disclaimers and a confession

First I’d like to apologize for my misuse and over-use of the word “ironic” the last time I posted. I blame it on the year Alanis Morrissette came out with her song Ironic. I paid more attention to that than English class that whole year.  I feel like Inigo Montoya should follow me around and warn me that the words I use don’t mean what I think they mean.



I was also so sad the last time I posted- I ended so dramatically & then forgot to update after that. (Sorry). We never really figured out what that was all about- Kaitlyn went on antibiotics later that week and she got better. Was that a coincidence? I have absolutely no idea. However, I'm so thankful we haven't called for help since. Kaitlyn decided after that day that she was very fond of that paramedic & she set out to write them cards and made some bracelets. She also worked hard on another letter to the president.

Kaitlyn had a new gastro/jejunal tube placement in June. No emergency, nothing fell out- it went as smoothly as it could. In the waiting room while her tube was being put in, I sat with other families-all there for different things. The TV had some morning show I'm not familiar with and they were talking about bras. It really upset one older woman and she yelled out, "this is ridiculous!". Then an older man next to her hit his chair with his cane and said, "I don't even know what they're talking about". The receptionist then started trying to explain the morning show so we could understand it better. I got all giggly. Here I was, worried about my daughter, imagining the worst possible in the next room and I was listening to the appropriateness of bra talk. It was really the best distraction. Part of me wanted to hug them, but I think they were already wondering why I was laughing in the corner. We stayed 2 nights in SF just to make sure the new tube worked well. It did. She also brought art for her SF doctors & copies of her letter to the president. They embraced Kaitlyn in SF as they always have. Of course home is best, but I felt comfortable and confident in her care there.

Sometimes it bothers me that I can summarize things in a paragraph and it reads like it's all dandelions and candy canes over here. But then it bothers me when I complain the whole time. I'm exhausting.



Now about those disclaimers- I feel like I should post them on my forehead. Or at least invest in some T-shirts. The compliments that have come my way have meant so much to me, but then I overwhelmingly feel like a fraud. I’m not as strong as you may think. I cry at night, am scared in every day, whine to those close to me, feel alone, consider the potential in an impending cat collection in my future, feel deflated and I have let so many things go that I lost count. I’m not always positive. In fact that’s almost the only thing I’m absolutely positive about. This whole process is so unfair. I am not good at letting myself feel mad. As soon as I feel mad, I feel bad for feeling mad and then I’m all sad (hey, I can rhyme though!).



Kai recently attended Police Camp (recently meaning-less than 6 months ago). It was a week-long program. His expression on his first day when he sat down holding his own nametag is thankfully imprinted in my memory (hopefully forever). Kai has this I-am-all-business-and-I-belong-here look. It’s the sweetest look of confidence, inspiration and curiosity mixed together perfectly. I also see it when he’s comfortable in class, with his best friend, and during baseball. That week was so much fun for him. It was a tricky balance getting him there, but it was worth every minute. The day before the last day, “Henry-One”, the sheriff’s helicopter came to visit as a surprise. I brought Kaitlyn and she was struggling a bit-she had been invaded by seizures earlier in the day and she wasn’t feeling very well. We waited in the parking lot near some other kids and I strolled her around, hoping she’d feel better. She didn’t like the light, the grass, the air, anything. She had every reason and right to feel that way. As I pushed her across the grass after all the kids had been ooo’ing and awing around the helicopter- I saw her perfect little nose wrinkle up and heard her growl my way. I assumed that was all because of how she felt from the seizures earlier. But then as we stopped, she pulled my arm towards her and quietly said, “Some kids made fun of me. And, they laughed at me.” Her big brown eyes had tears welling up. I picked her up and asked who it was and she said she couldn’t see right. She was heartbroken though and that ‘mama-bear’ that’s in all of us was there, stirring in me. I couldn’t fix it or teach anyone how amazing Kaitlyn is because I had no idea who to be mad at. I was mostly upset with myself for not noticing it happen. Our experience overall has thankfully been opposite of that moment for her. Kids are amazing with her. They’re often curious, but they’re compassionate, loving, inclusive and embracing of our Kaitlyn. That moment- hearing and seeing her hurt made me want to march somewhere serious and scream at the world for not being nice, not fixing her, not fixing this. We hugged, talked, and she felt better. After Kai was done, Kaitlyn pulled him to her too and she told him, “some kids laughed at me. And I really didn’t like it. But they don’t know me.” Kai’s eyes got intense right away too and he stood up and said, “WHO WAS IT?!?!” I don’t know what he was going to do- but he was immediately ready to stick up for her. He handed her his drawing, held my hand and off we went. It wasn’t anyone in his police camp- it turns out it was some of the siblings who were also there to visit. I can’t prevent every one of those moments- but I so want to. In so many ways, Kaitlyn actually does prevent those moments by smiling big when people look her way. She wraps people up by just being her. I honestly can’t quantify the number of times people have walked up to us and told her how strong she is, how strong I am, what a great brother Kai is, how beautiful Kaitlyn is. Those moments happen more than anything negative or judgmental. Why is it though, that those rare hurtful moments take over my mind space at night? Why can I remember exactly what Kaitlyn said when she felt so heartbroken, but I can’t remember the compliments we received that day? After police camp was over, Kai did write me up a few times for not displaying a winning attitude, but the good news is-his spelling is improving (& his police reports are much more detailed).

Months ago (a month ago? I’m not sure) I had just parked the car for a counseling appointment I was finally making after many cancelations due to our complex & clustered weeks. As I got out, I noticed a woman walking towards me. She was by herself with torn bags hanging off her arm. She was hunched over and her hair was hanging over her face. She kept turning her head and yelling out, “fuck off”. No one was on the sidewalk except us. She looked right at me and said, “and fuck you, too.” I just kept walking. I was trying to decide if I wanted to laugh, thank her, cry or run away. I kept thinking about the “fuck you” woman. I have no idea what she had going on, but the experience had me weirdly envious of her ability to be mad- out loud like that. Not that I need to go saying mean words to people, but being okay with being angry at all this is in fact, okay.

Now for the confession part. I feel like even on my best day, my words don't come out right.  And on a bad day, my words come out even weirder. Recently I was stuck in one of those rough days. Kaitlyn was at week 3 of a cold-turned-sinus-infection and after her appointment,  I called the nurse to tell her I had not picked up dressings for her g/j tube like I meant to, then we talked about how Kaitlyn was doing, & how I was doing. It wasn’t an emergency conversation. I shouldn’t have been on the phone. I really do know better. I even have a blue tooth thing- but didn't charge it. Lights flashing looking awfully police-like behind me. Ohhh. Emmmmm. Geeeee. Crap. Except instead of thinking ‘crap’, I couldn’t stop laughing. I was at a red light so I wasn’t even sure how to pull over. I had to sit there, waiting… and laughing. If I went any more to the right, I’d be uncomfortably sideswiping the stoplight (say that 10 times fast). And there I was, knowing I was in trouble for now multiple offenses since I was unsure how to pull myself over at a light. Then not being serious enough. Am I crazy?! I think he sensed my lameness and turned off his lights. When the light turned green (seemed like 3 years later), I turned right and pulled over. I don’t know why, but I took my seatbelt off when I pulled over. Another offense I’m sure. I also weigh more than my license says I do. By kind of a lot. He looked about 19 but had a really deep voice and called me Ma’am at least 5 times. Then he looked over at Kaitlyn and his voice lightened a bit. “Is she okay?” I said yes, she’s okay. Well, she’s not okay, but she’s never okay so we’re okay. He looked at me like I was a complicated hashtag he couldn’t quite make out. What’swiththoseanyway?? I had been crying most of that day but all of the sudden I couldn’t stop laughing. He asked me who I was on the phone with. I said, Kaiser- but I know better. It wasn’t an emergency. Then he asked about Kaitlyn and he told me I had extenuating circumstances. What-is-wrong-with-me?? I kept trying to convince him how terrible I was and how I know better. I confessed as much as I could think of. Finally, exhausted, he said he wasn’t going to give me a ticket and that he appreciated how upfront I was. I then stupidly said, “are you sure?” I felt like I was getting away with too much. I’m a fraud. I’m sad all the time-and here I am laughing. Without a seatbelt on! That sure snapped me out of my sad though. I couldn’t stop laughing the rest of the afternoon. I’ve kept my cell phone off and away from my grasp in the car since- so I do listen sometimes.

We have been a bit adventurous (besides getting pulled over). I took Kaitlyn to the beach for 2 nights. She was so excited, then slept so much when we first got there. With a hotel chair,  a chain of carabiners, a lunch box and a determination to make things work without packing our entire house I "made" a traveling "IV pole".  We watched the sunset, giggled about nothing and everything and had a break together. I'll never forget many moments of that weekend. Even though seizures and discomfort still took her over sometimes- she did amazing and her attitude to make the best out of everything overrode everything else.

We were able to attend Relay for Life again to honor our Stephanie. Kaitlyn was wide awake for 3 hours and it was great to see friends we've missed so much. Kai had fun walking with his cousins & going through stacks of baseball cards.

And lastly- I attached a tube and a pretend line to one of Kaitlyn's dolls. This felt so weird but it's helped Kaitlyn more than I imagined it would. She named her, "Katie" (for little Kaitlyn) and she sets her up for feedings right before I set her up for them. She explains things to her doll similar to how I explain them to her. She made a journal, makes pretend appointments and most recently she made a list of things Katie "can do" to make her feel better. That's Kaitlyn- Queen of Can-Do.