a little chaotic & all-consuming, but still hanging in here

Why is it so hard to talk on the phone? Or reach out to people? Or remember to wear pants?  I can’t always tell if I’m overreacting by being so consumed in this, or if I can be a better friend and role outside this house. I promise I’m trying to the best of my ability, or inability. Some friends have understandably left the building. How many ignored texts and calls can one person take? There is a limit, and I completely understand that. I also have such a repetitive answer for how I’m doing. It’s exhausting. I’m exhausting. My answer is always: “blaaaagrrrrhmph” or something like that. For those who have stayed, in spite of my disappearing acts and awkwardness, I’m incredibly thankful. I’d be lying if I pretended I’m not nervous sometimes. Say what? That makes no sense. I feel too easy to get rid of sometimes. But then I sit up, smack myself and read notes and messages I’ve received in this. We have support everywhere we turn, and even when I don’t remember to acknowledge it. No matter how sad I get in a moment, it’s overwhelming how much support is here, for us. People care and reach out in a way I never could have imagined, and still can’t-even though it’s right in front of me.  Thank you. The unwavering support for my kids and I is phenomenal.

I’m pretty awful at math as a whole. I’m fairly certain I’ve inspired some math teachers to retire. With Kai’s math homework, sometimes I pretend to get a text and use my phone calculator. However, Kaitlyn’s numbers within her schedule are embedded in my little brain space.  She’s on TPN for 20 hours a day. I take the TPN out of the fridge 4 hours before it starts; which is really the same time it ends from the day before. The pump tapers up for 2 hours to start and tapers down for 4 hours at the end of the cycle to hopefully avoid big dips in her blood sugar levels.  Intermittent beeping means the battery will die in 30 seconds or 2 hours. A series of 5 beeps in a row means it’s finished, and that’s the only time it will tell you that.  I change her cap on her line once a day, at the end of her TPN cycle. I flush her line with saline, then heparin. Once a week I use ethanol locks on her line to try and prevent another infection. The ethanol sits in the line for 4 hours, then I draw it out, flush with saline, etc. You never flush heparin right after ethanol or something explodes. I’m scared to even have those close to each other. Alcohol wipes are my best friend. Better than alcohol being my best friend, yes? I wash my hands in between everything.  I change her dressings, both from her central line and her stomach tube site once a week; but usually more than that. I help her bathe in a reclining bath chair (that took over 6 months to get), brush her hair, her teeth, clean her ears when I remember to, help with home school homework, read to her, etc.  She’s on formula for 18 hours. I set that pump at 30 mls an hour when her motility is good and she’s tolerating it well. I measure and mix the formula to make it 30 calories per ounce- that’s 6 scoops of formula for 9 ounces which is 270 mls each time I mix it. There’s nearly 30 mls in an ounce (29.6, but that’s too much math). According to the can, formula shouldn’t sit out once made for longer than 4 hours. So that’s 120 mls in the feeding bag at a time. Her doctor said I could leave it out for longer, but I’ve still been too nervous to. I know he’s right, but the can sits there with conflicting directions. The formula settles in thicker proportions at the bottom of the bag if it sits too long and clogs the pump anyway with beeps; usually at 2am. She gets a total of 540mls in the 18 hours which is 18 ounces. 540 is also the milligrams in one dose of one seizure med she’s on. She’s currently on 5 medications spread out into 14 doses. One med I crush and add water, then wait until it’s completely dissolved before putting it in the right tube. The rest come in liquid form. Some meds go in the G port of her G/J tube and others in the J port. My phone alarms 10 minutes before anything is due or should be mixed or poured into the feeding bag. This is why I forget to brush my hair, find matching socks or call anyone back. It’s not that any of this is hard or hard to learn. It’s all consuming though. If anything goes differently than it should, I question myself into a stupor. I bug her doctors, nurses and I re read protocols I have typed out. I try and stay away from the internet.

Kai: “I just love that baby. Maybe we could borrow her?”

We have a new family member- sweet baby Lena. My little brother and his wife, Gina had this amazing girl over 3 months ago and we finally met her! She’s beautiful of course (gorgeous mama & a pretty handsome dad she has). We loved her before we met her, and meeting her meant the world to us. She makes the sweetest little sounds and she’s so bright-eyed and all love. Amazing to see resemblances in cousins. We were so lucky to have them come to our house. Kaitlyn slept through it and Kai entertained us with all his observations and facts.  I made pancakes for dinner because it’s less of a hazard that way with cutie-pie distractions and I’m not so good with fire. Gina took the picture (above) of Kaitlyn sleeping next to an alert and beautiful Lena. Kaitlyn LOVED seeing the picture when she woke up late that night.

Kai: “Mama. If there was a coffee patrol situation, you would be realistically in for it. If I could make you an invention, it would be a coffee maker everywhere you go. And some city clothes.”

I feel like I’ve been stuck in this derpy phase since we’ve been back from Kaitlyn’s last hospital stay. Kai uses the word derpy now so I should probably find some real words.  When we make it to the store, or to the park, I feel like I’m this giant dork, navigating more than I am qualified for. Someone can ask me something as simple as, “how’s the weather?” and I have no idea how to answer. How the heck is the weather? Nothing I say in response changes it. We were in a waiting room the other day and a woman walked up to me and asked to see the “baby” in the stroller. She walked around & looked shocked when she saw this tall, sleepy, sweet 12 year old ‘baby’. I had no idea what to say so I just watched her, watching us. Sometimes the best answer is no answer. Yet also; sometimes the toughest answer is no answer.  In shifting from one task to another, I’m so uncomfortable still. Kaitlyn seems too fragile, even though I know she’s the strongest really. Maybe I’m too fragile for all this. Or just too derpy. Enough time has passed, I should be “normal” by now. Even writing here, I feel like I’ve written this all before. Here we are, doing the same thing. I worry. Kaitlyn has seizures. I make a lot of coffee. I make people uncomfortable when I ignore them in public and equally uncomfortable when I won’t stop talking.  Kai keeps track of a lot, loves more than he worries, but he still worries.

Kai: “how many hours is too many for homework? Have we reached maximum capacity yet? I’m at maximum capacity.”

Kaitlyn: “Maybe we could just bring Kai back to 3^rd grade. It was better there and everyone came out to hug us.”

Kaitlyn reminds me sometimes of a girl version of Buddy the Elf. She only sees the good. School is tough for Kai this year. I think part of it is that 4^th grade isn’t meant to be as embracing- kids are older, and responsibility is an important life skill. I know I can’t hover and I have to let Kai learn things his own way. It’s a tricky balance; knowing what to advocate for and when/what to let go. Clearly, I haven’t mastered that anywhere.  I don’t know how to say what I want to say without saying it wrong, so here goes anyway. Of course I feel responsible for many of Kai’s struggles. Our life is so full. Yet, I also recognize how far he’s come, how amazing he’s doing really, and how much he does DO. Kai is incredibly responsible so interpretations that differ from that observation are disheartening. He’s now made a friend in his class, which has helped a lot. He’s caught up in reading & his writing has come so far. He’s still behind in math. Flashcards, games, repetitive skills; none of it is making it stick yet. I fundamentally do not agree with how we’re helping him at this point. I’ve noticed less is more with both my kids. When we slow down formula and don’t overload Kaitlyn; she actually absorbs it better and she’s finally gaining weight. When Kai isn’t overloaded, he remembers more of what we’re giving him. So- with less, they do more, succeed more, and gain more. The details of that aren’t important and I already feel like a derpy gossiper just writing this. As his mom, I recognize that my role is limited in what I know regarding how to teach him math in the most positive, productive way.  I advocate to the best of my ability, I sit with him through the struggles at home, I email, and we have another meeting in a few weeks. What else do I do? What does it mean to fight for your child? Who do we fight? What do we bring? I am the lamest fighter really. The only time I was almost in a real fight, I ran into a broom closet and hid in it until the conflict was over. I was 20. I write things out better than I speak and I always pack a lot of snacks and hand sanitizer. I bake and clean when I’m nervous. So, in my fight; I bring baked goods, clean hands, long-winded emails & a clean kitchen. Not the most brilliant in advocating skills and supplies. I want to speak up to all the right people, type up letters and march to Sacramento and carry on real talks in places that matter; but I think all that would happen is I’d bring a plate of cookies and get side-tracked with how sparkly all the buildings are. How do I effectively throw a grown up tantrum? If I were a better ‘fighter’, would Kai be doing better? Would Kaitlyn be better? This is the crazy that consumes my mind space. If only I could fix something.

Kaitlyn: “I just love how when I can feel my heart beating, I can hear it too. In my own head, it sounds like a drum. Like a head drum. But it’s my heart.”

She sits there with a stethoscope, entertained and giggly. The giggles echo in her stethoscope so she giggles louder. She stops. She puts the metal listeny piece on her forehead.  That all consuming Kaitlyn smile turns serious as she waits. “Well. I guess I can’t hear my thoughts on this thing after all. I just think them. Everything has a limit, doesn’t it?” Ohhhh, this Kaitlyn.

That moment with her is my happy place right now. I hold on to it and repeat in my thoughts; remembering every aspect of it I can. That stethoscope has gone from one med supply drawer, box and room to another. It was given to her in the hospital over 2 years ago. She picks it up and listens to her dolls, her brother, her own heart, and mine.  As many scary moments that have clustered since she received that stethoscope; we’ve really had many more awe-inspiring & loving Kaitlyn moments. Thankfully unlike the scary ones, these positive ones are countless, enduring, beautiful, and they come in unexpectedly but always welcomed waves. Conversations with Kaitlyn are among the best moments this life has to offer and I’m the lucky one in this; I get to be here with her in them.

As lucky as I know I am to see all the good moments, I’ve been so swept away in how vulnerable I am too. I feel like I’m wasting time.  Lately, many times I convinced myself I don’t need to be so scared, something scary happens again & this cycle goes and goes.  I don’t know if that blood infection was as serious as it seemed. Maybe it wasn’t so bad. I don’t know for sure if her seizures since have been as scary as they feel. I just know how it feels still. Maybe this is how caretakers keep on care taking. We forget the intensity in between, like we forget pain. Except that sort of productive denial isn’t working lately. And regardless of the validity or lack thereof; I’ve been so scared of what’s next since we’ve been home. Any sudden movement or dropped thing, I say Kaitlyn’s name to see if she’s okay.  If she doesn’t answer, I run like a floppy tangled mess into the room she’s in. Really, I hardly let her in a room I’m not in. Taking a shower shouldn’t be such a daring experience, but it feels like everything has to be absolutely ok and in place before I dare to take that 5 minutes alone and shower.

At some point in the last few weeks, it was 4am and it sounded like popcorn was popping. I heard Kaitlyn’s little voice, “mommmmmmmmyyyyy!” I ran into the kitchen- she was all set up in the living room (same room as the kitchen really, I divide them with a table and baskets under the table). She was wide-awake with art-in-progress all around her. Markers, paint, and piles of paper were all out of their boxes & jars and being turned into beautiful Kaitlyn picture creations.  In cleaning it, I had accidently set the coffee on automatic for 4am. So it was popping and wondering where the water was. Once we figured it out, we both laughed. We compared coffee makers to popcorn makers and giggled about what I looked like when I ran down the hall.  I sat with her for a bit, checked her tube and line and both feeding pumps, mixed more formula and then I stumbled back to bed. 5:30something-or-other I was debating taking a shower. I heard another noise in the living-room but I ignored it. I tried convincing myself how dramatic I was. Just take a freaking shower. So, I did. I got dressed and came back down the hall to get Kaitlyn’s morning meds ready but she was seizing, the big-giant-awful kind. How long had it been going on? I have absolutely no idea. In the seizure she had bitten her tongue, so blood and drool seemed like it was everywhere, but it was really just close to her face. I got out the emergency medicine- gave it to her in between her cheek and gums. I used the magnet for her VNS device. She stopped convulsing and I started cleaning her up. She was breathing good and things seemed “fine”.  Kai came wearily down the hallway. He had stumbled to my bed after the 4am popcorn making coffee pot incident and once he’s in my bed; he knows when I’m not. Once he saw Kaitlyn all pale, and the med box out, he knew what happened. His tired eyes opened wide and he looked so upset. He said, “we should be ashamed of ourselves for sleeping. What if Kaitlyn dies?” How do I answer that? We can’t be ashamed of ourselves for sleeping. I scooped up Kai and held him. We talked about the things we can control compared to the things we can’t.  Words don’t work when you feel that much worry. I should really listen to my own advice.

Adrenaline, auto-pilot, and being Kaitlyn’s & Kai’s mom took over. I did fine when they needed me, but I melted afterwards. Once Kai was at school and Kaitlyn was asleep next to me, I just curled up and cried. I apologized to a sleeping Kaitlyn. I’m so so sorry I ignored the noise before I took a shower.  I’m so sorry I fell asleep.

I’m updating in reverse order. Two weeks before the 6am seizure and the shameful moment of sleep & shower; we were having an awesome morning. Kai was still recovering from the flu, but it was his first day of being awake before 10am and he was talkative, happy and said it felt like summer.  I remember the music that was on. Keb Mo was singing about one friend. Yay for him. I hadn’t made coffee yet. Laundry was half folded on the kitchen table. I had showered, but I had crazy hair and Holstein cow socks on.  Kaitlyn was talking and she got up to go down the hall. We had her new stroller out in the living room. It had been delivered the day before. Her neurologist had ordered it in July, but there had been one issue after another so late January, it made its debut. Medical equipment for special needs kids and the process, time it takes, etc.. that’s for another blog and protest. In short, we should do better for kids who could benefit from equipment. We don’t get a 6 month warning that our children will need more help, so why does it take so long to get the devices that can help them navigate through a day? Really, I’m incredibly thankful for the stroller. It reclines, it’s bigger so it accommodates a growing Kaitlyn. The only issue I had with it in that moment was that I couldn’t figure out how to fold it up. Even folded up, it’s pretty giant. And clunky. Anyway, Kaitlyn was walking around it and she went into a big tonic clonic seizure and fell into the stroller. I picked her up and laid her on the other side of the room, on her side. She was still seizing. I remember Kai’s eyes and his expression but I couldn’t do anything to fix it or reverse what he was seeing. Tears welled up in his big sweet eyes but they wouldn’t fall. He handed me the phone. We had an agreement from her last big seizure. I was going to call for help quicker if we needed it. I called 911. Kaitlyn was still seizing and I decided that the stroller was in the way. While on the phone, I threw the entire thing out the door. Kai says it flew. Thankfully Kaitlyn stopped seizing on her own. The firemen, EMT and paramedic saw us in all our frazzledness. They were great with Kaitlyn, Kai and I. Once Kaitlyn woke up briefly enough to say hi to the paramedic and tell him she knew where she was; we knew Kaitlyn was ‘okay’ and we could stay home. Then things that don’t matter started taking over. Cow socks. Really, self? Why?? It takes 5 minutes to brush my hair. Why is it so rare that I actually do? Laundry piles everywhere. When they left, I put the laundry away, made coffee and talked to Kai. Kaitlyn slept all day. Kai had so many questions, observations and worries. I listened, answered the questions I could, was honest about ones I didn’t know and snuggled him through the worries. He made a picture for their doctor to tell him what happened. His teleporting idea is pretty genius. And if I hadn’t been so forthcoming about my cluttered laundry-piled house, you really can’t tell in Kai’s picture.

Kaitlyn: “It’s like the sky is telling us it’s here and we’re okay.”

If finally rained. Kaitlyn woke up and felt great when the rain came our way. I don’t know what it is, but she’s been at her best on stormy days. She reaches for the rain; and loves how it feels, smells, sounds, and just how it is. Kai and I played ping pong in the house. We’re awful so far, but hoping to work on our ping ponging skills. I made homemade ding-dongs’s.. almost just so I could say ding-dong’s. They didn’t look anything like the magazine, but they helped inspire extra smiles with the homework blues. No joke, those ding-dongs took all day.

I went to the doctor myself today for the first time in years. Because for the first time in years, I have medical insurance. I was nervous, awkward, and convinced the insurance I had wasn't going to be real. I can't relax and I went on and on about who-knows-what. I tried to convince them my sweatshirt was 20 pounds. It was the ding-dong's?  Sheemeeeny. Before the assistant left to get the doctor she asked me, "what are you doing to take care of you?" Awww shucks. I don't know. I bake. I write. I cry. I go to counseling when I don't flake. I read. I answered in mumbles and cried. I'll get the hang of this, I swear it. I know I don't have the answers for the toughest questions; but I see so much that's right; right in front of me.