We all count

This morning I was looking for pants in a pile of clean laundry on my floor. Initially, I had put the clothes on my bed to inspire me to fold before climbing into bed. Fail. I threw those clothes on the floor at 1:30am after replacing the battery in Kaitlyn’s feeding pump. Back to the pants. I found some and tried to put them on but for some reason I didn’t really look at them. Leg avoidance. I don’t want to see them, plus they’re blinding. Ohhh Myyyyy. WHYYYYY ohhhh whyyyy don’t these fit? I totally ate kale last week. Twice. I couldn’t get them over even one knee. Finally I looked down and saw I had Kai’s pants. Erps. “I’m so sorry”, I said to pants. Out loud. That was apparently my last straw today. (Side note- I don’t think I have that saying right- & Kai’s constantly asking me if I have extra straws before he tells me bad news). I just apologized to pants. I am constantly apologizing. But to pants?! Enough. Now that I have my big kid pants on, I have more to say & I will try and delete all apologies.

Sometimes people don’t know what to say when they see us, especially if Kaitlyn’s asleep. I totally get that and I’m not offended in the slightest. I can also relate. I say things out loud that are awkward for everyone. I’ve heard repeatedly;  “I wish I had a stroller like that. I’m so jealous”, “I hope she pushes you when she wakes up”, “WOW”, “oh. Dear. What a great stroller”, “I bet she’s tired”, “she needs a hat and Jesus”, and many more. None of those are offensive, in fact a lot of it is correct; but I don’t always know what to say either. Sometimes when I’m out of responses, I just laugh, cry, walk away, or I make a bad joke about needing beer or coffee. And sometimes, like this past week-after the accumulation of many weeks, and months which have turned into the past few years; what was and is said IS offensive and I can’t find a rational way to absorb it or justify what is in front of me.

Kaitlyn receives home nursing services through a company who employs home nurses (how’s that for politically correct?). One day a week- I get nursing help. The system has always been a challenging one. The company hires nurses, but doesn’t pay them very much. The reason for that can probably be blamed on our system as a whole. However, nurses deserve to be paid an adequate amount. The company goes through nurses very quickly. Many times over again nurses are hired, ‘orient’ here and quit before they even start because they found a better paying job at a hospital or a facility where they would rather work. Some of the nurses they’ve hired have been unsafe choices really. They no longer watch Kaitlyn- but I am very protective and hesitant to start anew with this company when they tell me how great a potential nurse is. The last time I was told the potential nurse had read Kaitlyn’s chart and was excited to meet us, it turned out the ‘chart’ the nurse had read was 2 years old, which was before Kaitlyn had a central line. And the nurse didn’t know that Kaitlyn had a central line when I met her. That’s an important piece of information missing. The one nurse who does come is incredible. She’s compassionate, thorough, skilled, reliable; and Kaitlyn, Kai, & I absolutely adore her. None of my complaints about this company and process are about the one individual nurse who does help with Kaitlyn. The company itself though hasn’t listened to my concerns, continues to be incredibly rude and their story and explanations keep changing.  I want to understand their perspective but I’m running out of ways to convince myself they’re doing things with good intentions and honesty. 

I do understand that they’re a business. They need to make money. In a letter from this company written at the beginning of this year to inform families of changes to the health care system, they wrote specifically, “we make no money at all in taking Medi-Cal”. The letter went on to praise themselves for a job well done and to express frustration with how they have to manage the unfortunate system with Medi-Cal clients. This letter wasn’t sent to just me. It was a letter sent to all families of clients of their agency. I think this is where some of the frustrations sit for all of us. I feel defensive because while Kaitlyn does have Medi-Cal as a supplemental insurance, she has regular Kaiser insurance as well. More importantly, regardless of how a child is insured- the treatment of them as a patient and their families as caregivers should be the best that it can be. As much as I want to think all things in health care relative to children especially- are done with compassion, grace, and enthusiasm for the child’s best interest; that’s not always so. This is not a problem exclusive to this company alone-our county, or even our state. I’ve talked to many parents who have experienced the same frustrations with this company specifically, in other counties in our state, & out of state. I can’t speak for them, but the conversations I’ve had in the last few years have been incredibly validating- but overwhelmingly sad and frustrating.

This is uncomfortable to talk about. So why am I? Partly because I just apologized to a pair of pants, and I feel it’s important to start this conversation. I don’t count less because I make less. Socially, I need to remember that.  Kaitlyn doesn’t count less because she has a Medi-Cal insurance card. Home care is incredibly important. Caregivers sacrifice a lot and work incredibly hard; and yet socially, we aren’t always treated like we count as much as we should. Companies who employ nurses and other medical caregivers to provide support to families like mine should do so without any undertones of being defensive which comes across as dishonesty and without frustrations with us for just merely existing. Not all people who benefit from Medi-Cal are trying to take advantage of systems, taxpayers, and the entire world. In contrast to how I’ve been treated by this company, Kaitlyn’s Kaiser providers never mention Medi-Cal. They mention our names as people. They treat me like I am a part of the team, not apart from it.  After this week especially, I want to go hug everyone at Kaiser and thank them for always treating us so well. I hope I thank them enough.

I see some of the facebook conversations insulting anyone on a ‘system’ and some of them are so disheartening, I just sit there and cry. I always want to apologize. I do apologize. Constantly. And that needs to stop. I am not lazy. I do not take advantage of anyone. I have felt guilty for eating because I didn’t know who to thank when a Safeway card anonymously showed up in my mailbox. We are not on food stamps, but if we were; that would be another thing I would feel horrible about. A friend once told me how frustrated she was because a food stamp recipient ahead of her in line had bought fancy cheese with food stamps. When did we find it okay to judge people for what kind of cheese they buy? That conversation was years ago but it’s stuck in my memory anyway. I know there are people who take advantage of systems. However, there are also many people who don’t.  Friends have told me, “we don’t mean you”. I so want to take comfort in that because it’s incredibly uncomfortable to confront any of this- but it is me. This is my daughter. And this is our Kaitlyn. The words we choose to say out loud to each other count.

Why is this week especially tough? The company wanted us to meet a new potential nurse. Given how that went last time, I was nervous and so I replied with my hesitations. They then said their policy is to send the new nurse out when the current nurse is there- that I wouldn’t be able to meet the nurse beforehand. I was told I could be “in the background”. Uhmmmmmm. No. I am not in the background. And I am not comfortable with a new nurse starting on the one day I have help and had planned to actually leave my house. In previous nursing encounters, I’ve always been able to meet a potential nurse first. I’ve always signed a time card for those meetings, termed; “orientations”. But now that story is changing and I won’t exhaust you with every pesky detail. My stomach has been in knots all week. I can’t sleep well, even when I get the opportunity in between Kaitlyn’s feeding and medication schedule. I’ve cried a lot, written out my concerns and I’ve found my own accountability in speaking up better. I didn’t let what was so unfair take over; I did let it all affect me. Seeee… not apologizing for that.  I made phone calls, wrote letters and researched.

Every day, repeatedly; I review our day in moments and criticize it in parts; wondering what I could have done better to help Kaitlyn and Kai. Was I exactly on time? Did I call the right people if it was warranted? Did I watch Kaitlyn enough? Did I interpret her movements, reactions and pain correctly? Did I give Kai enough attention? Did Kai get to baseball? Did I return phone calls? Emails? Did I contribute enough? Did we enjoy the moments to the best of our ability? Did I thank people for what they do for us?

I can’t fix our system. I can’t fix very much. However, I can use my voice. I can speak up. No matter how much I want to blend in and not make a fuss, I count. I am here, caring for Kaitlyn & Kai to the best of my ability.  It shouldn’t take 6 months for a child to get a wheel chair stroller. Home care should be a priority. Insurances; well before the Affordable Care Act, have been denying coverage for a wide variety of incredibly important aspects of healthcare.  Medications, if they can help; should be able to be prescribed by a doctor. Medications, if prescribed by a doctor should be covered.

Hey pants, I’m not sorry.

So thankful for this sweet, sweet Kai

“Kai. I love you every day. I always think about you and I miss you even when you’re asleep.” –Kaitlyn

We love our Kai. The way he cares for Kaitlyn, hugs us, smiles with that dimple, and informs us of all the facts we need in a day; that’s what often gets us through. The relationship Kaitlyn & Kai have is such a beautiful thing to witness.  I'm constantly amazed by their strength and perspective. There’s a balance I haven’t found because I can’t fix enough- where I want to make sure Kai knows he’s loved & appreciated & where he gets to be a kid-free of any worry. Kai voices his worries so well & he loves so whole-heartedly.

“Do you realize I’m halfway to twenty? I don’t think I can snuggle you when I’m twenty because I will tower over you and my face will be all hairy. And scratchy. And I’ll smell like a man.” – Kai

Kai turned 10, which apparently is very close to a towering grown up. I know every parent has the same thought/question/grrrrrhmph- this goes soo so so so fast. Slow down kids! I feel like I blinked and he went from being my sweet cheeked toddler playing police cars in the mud & picking me flowers to this fourth grader who writes with hashtags, tells me I should listen to city music, & thankfully still picks me flowers. I’m trying not to blink anymore since he’s eying his twenties & the prospect of facial hair.

Kai loves traditions. Being able to count on things going a certain way seems to be a constant goal. I can definitely relate to that goal. We have a birthday tradition of driving to Healdsburg and getting donuts early in the morning- when it’s still dark out. He makes an adventure day plan and he picks every meal. The night before his big day, I couldn’t sleep. Kaitlyn was fine; it was all me, being ridiculously stuck in my head.  I was trying to wrap my head around him getting to 10 so fast. Kaitlyn had been improving every day before his birthday. She was back on IV antibiotics for a site infection & they were working quickly & with no side effects. Everything was improving for her. Beautiful timing for a great day! We made it to Healdsburg early for Kai’s donuts. He is quite the donut king. He brought a bag of donuts & some juice for his class to school. His birthday adventure was to go see the “pill boxes” & bunkers (hoping I have those terms correct) from World War II near SF and then to the zoo. We picked him up early from school and headed to SF. Everything went like a movie; the good kind- with background music and beautiful lighting. He kept thanking me- hugging Kaitlyn & telling us how happy he is. Kaitlyn was awake for a lot of the day. She even walked part of the hike. She loved the flowers, the way the grass moved together in the wind, the smell of the ocean so close & seeing the Golden Gate Bridge behind us. Kai told her all about World War II history that he’s been reading about and collecting stories of with his close friend, more-like-family & mentor, Paul. We walked past a not-very-old man and Kai made a comment about wondering how he’s doing after World War II. Erps. That guy was definitely not around during World War II.

At the zoo, Kaitlyn fell asleep & Kai wanted to push her. He told her everything he saw- by moving her hair away from her ear and whispering so sweetly. He held my hand, ate a bucket of cotton candy & said he was going to stay 10 forever.

Sometimes it seems like time is standing still for Kaitlyn & speeding by for Kai. There’s not a medium in much of our lives, not a whole lot of neutral going on.

After Kai’s birthday & with Kaitlyn still doing better, we’ve made better effort at adventuring more often. Kaitlyn and I were back to going on walks once she’s off TPN & formula. I love our conversations and how she sees the day around us. Sometimes she drifts off to sleep, the quiet sets in, & I feel reflective on what’s right in our days; or a bug lands on my face & there’s nothing graceful or quietly reflective about that.  We had this plan to go walk the “lake park” with Kai a few weekends ago. Kaitlyn was wide awake and talking about all the flowers she wanted to show him and hoping she’d see some dogs (she had met the sweetest dog, Rosie earlier that week). The drive over the hill, she fell asleep. Kai and I took turns pushing her in the stroller and hoping she would wake up. Kai told me about fourth grade happenings and things he’s learning at lunchtime. Holy schmoltzy. I feel like I need to go have lunchtime interventions. We crossed a dried up creek and Kaitlyn’s stroller got stuck on a rock. Kai is more engineerical than I am- but we couldn’t figure it out. He had this idea to move the rock while I held one end of the stroller up. That seemed dangerous & I was worried he’d lose a finger that way. So we stood there debating a plan that wouldn’t risk any fingers. Then we saw this beautiful couple in the distance ahead of us. Their outfits matched; they were running in unison like a Nike commercial. I could practically hear music. Her pony tail was swaying in rhythm with her steps. When I run, I look like I’m having a bad reaction to many things and my body is fighting itself in all directions. Neither one of them had any body fat, anywhere. Not even a fatty mole. I think I just stood there, dumbfounded and trying to hold in my wobbly parts. Kai stood there too- taking in the whole scene. Here we were taking up half the trail because we were stuck. Thankfully Kaitlyn slept through it - I momentarily forgot about the stroller taking over the walkway. They just bounced on past us- I think they flew over the dried up creek we were holding up. Somehow we were invisible- which seemed impossible if I had thought about it before they bounced past us.  After the miracle joggers left us in their wind- we figured out how to get Kaitlyn out of the rocks & carried on. We walked a little slower, talked a little less, & felt slightly defeated although we weren’t sure why or what from. Kai found a shady shortcut through the trees. Exercise was getting overrated. We managed to walk right into a wedding. What the heck? Kai- who is completely grossed out by kissing & thinks people have babies immediately afterwards said something super embarrassing. So then we walked a little faster and made it to the car. I don’t really know why I’m writing this all out. I’m sure there was a point at some point. Isn’t that the truth with most experiences? I start out thinking there’s a reason for the chaos we’re in- and when it turns out there isn’t always; we have to find the funny in it. That’s the beautiful jogging–in-unison-with-flippy-pony-tails point of this whole story; there’s always something to laugh with, in or about with Kai. He sees what’s right in front of him & he processes it all in a way I’m in awe of.  

“Kaitlyn- what does a seizure feel like? Do you know you’re shaking all over and that you’re making a really bad scary sound?” –Kai

Earlier this week we had a pretty tough morning. It started out great- Kai woke up before the sun came up so he could play minecraft with Kaitlyn. They love to play that together & he’s trying to get up earlier on school mornings. Minecraft is good incentive. They were crafting together so peacefully and I went back to my bed and drifted off to sleep which I feel incredibly guilty about. I think near the moment sleep found me, Kai was screaming at my bedside, “Kaitlyn. Seizure. Seizure!!” I scrambled to the livingroom where Kaitlyn was seizing. I put her in a better position, on her side and used the VNS magnet. Still seizing. Kai grabbed the emergency medicine box and I gave her Versed. She still seized for a few minutes- but it finally let her go and her muscles relaxed. Once Kai had tasks, he calmed down and we were a team. Almost a robot team.  It’s hard to explain reacting- I almost feel like I’m outside myself watching the whole scenario separate from being me. I think Kai feels the same- he describes it better. I know what to do- I’m outwardly calm. The emotional part hits later. Once Kaitlyn stopped seizing and she had been sleeping for a while- I made Kai breakfast and we carried on, getting ready for school & the day ahead. Dropping him off, he looked so exhausted. So much intensity during the short 3 hours he had been up that morning. When we picked him up from school, Kaitlyn was wide awake and chatty. She didn’t remember the morning, or the day before. She knew the week before & she was glad it was a Tuesday. Kai had so much to ask her. His questions are tough to answer sometimes, but I’m incredibly thankful for his amazing ability to charge through those tough moments and try to understand them from many angles. This Kai- I can’t imagine how we would navigate through any of this without his wisdom, humor, compassion, curiosity, fearlessness and love.

the better side effects

Hot coffee, music on & the peace of early morning is one of my favorite places to be in our day. Before the day starts for everyone, there’s so much unchartered potential. Then reality sets in and our day changes course over & over. Our reality is different, but it’s not all bad. A positive side effect of being so affected is the absolute enjoyment of a good moment.

“Mama. Can you smell the rain coming yet? Let’s open the window and wait for it.” –Kaitlyn

There are so many beautiful sayings about how to weather a storm, and I don’t know any of them. However; I am honored & humbled to witness the beautiful way Kaitlyn anticipates the rain & how she finds it to be the cure for most things. Just like she embraces daily challenges- she doesn’t view them as a storm at all; they’re a celebration.  Our celebrations aren’t in wrapped presents & candy- but they’re moments that Kaitlyn writes us songs for saying we love her, and Kai writes us notes and hides them so we’re surprised throughout the day. They both pretend they want to listen to Lyle Lovett with me. They make paper crafts together and tape them, everywhere.  One of the best side effects of knowing our day can change in a second; is the way we embrace the moment we’re in better.

I never saw the beauty in a big strand of grass in an overgrown lawn before Kaitlyn showed me. We were on our way to get Kai from school when she noticed this one strand of grass taller than the rest. She thinks it’s the most beautiful, fantastic lawn success story. “Look how TALL that one got! It’s such a great flower.” It’s not a flower.. yet if you listen to Kaitlyn, you’ll be convinced it is too. So now we put strands of grass in jars and celebrate them.

Kaitlyn & Kai love the footbath contraption we got for Christmas. Kaitlyn giggles the whole time and Kai pretends he is at a fancy place that has a footbath. He comes up with a different accent every time he uses it. One morning- Kaitlyn was wide-awake and all smiles. I had this fancy shower gel with a golden lid we also got for Christmas and Kaitlyn loves how it smells. So to upgrade the footbath experience, I came up with the genius plan to add the fancy shower gel. Bubbles. EVERYWHERE. Erps. I should have seen that coming, but I didn’t.  It really was an upgrade after all.  Our floor was cleaner, and Kaitlyn was the happiest I’d seen her. She couldn’t stop laughing. At first she was a little worried something went wrong & then she was ecstatic about all that was right.

Baseball season is finally here again. Watching Kai play baseball is such a refreshingly fun event. He takes it so seriously, and he keeps his eye on so much. I love the moment he sees me & he doesn’t think anyone is looking- I get the best Kai smiles then.  He tolerates all my uniform purchasing fails. Wrong socks, wrong color belt, etc. We seem to get it ironed out eventually. His first year of T-ball I lost the plastic cup in the laundry black hole & tried all the knockoff Tupperware we had. He was a bit square the first game, but we thankfully haven’t had that uniform failure since. Last year, he was really into wearing his pants backwards because he liked having his gum in his front pocket. I also can’t wait for nights watching baseball on TV with Kai, even though we never root for the same team. I always hope the Giants win, and Kai is all Yankees & anyone but the Giants.  Kaitlyn joins in when she’s awake & usually picks the Giants unless Kai did something very sweet while they were minecrafting earlier or he somehow bribed her.  I love how Kaitlyn thinks it’s all so hilarious.

“I think your ultimate day would be firemen singing Lyle Lovett songs and making you coffee.” –Kai

“I just love wishing on stars. Or even planets. Anything that’s so glowy probably can handle a wish or two.” -Kaitlyn

There are all kinds of side effects- ones we have seen with Kaitlyn have been the scariest in our experience. Medicinal side effects can be temporary- we can stop medications when the toll it takes on her outweighs any benefit. The toll this all takes on us as a little family doesn’t seem very temporary and we’re still trying to find our way. Thankfully though, the benefits aren’t temporary at all. This perspective we collectively and individually have; it’s a part of us now. I don’t wish this kind of worry on anyone- but realizing what’s important in a day is instrumental in our appreciation of what’s good and right in our moments. For that, I’m incredibly thankful every day. 

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.