Epilepsy Awareness Month

I remember years ago a friend told me, “epilepsy is a manageable disease. Is that all Kaitlyn has?” She wasn’t being rude or insensitive. She was genuinely perplexed. How were we struggling so much with this perceivably manageable problem? The truth is, as much as we know about epilepsy; there’s so much more we don’t. Epilepsy is more prevalent than most of us realize. Among many epilepsy facts posted in the CURE’s (Citizen’s United for Research in Epilepsy) website, one stood out to me today, “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined – yet receives fewer federal dollars per patient than each of these”. And another statistic posted on many epilepsy awareness forums, but written out well in, Talk About It’s website- that breast cancer is as prevalent as epilepsy and takes as many lives but receives a lot more funding, and awareness campaigns. Why do we compare one awful disease to another like this? Epilepsy sucks all on its own and in its own way. And just like many other diseases & disorders; it comes in many forms, attacks different people in different degrees and levels. From my perception, manageable isn’t the word I’d chose to encompass it at all. It is not easy to deal with. It is life-changing. It’s an unrelenting asshole. It also doesn’t define whoever has it. I hate epilepsy. I wish I could take it away. I have to teach my children tolerance for so much; but I wish tolerance for our days being invaded by seizures wasn’t one of those things we’ve learned.

I have mixed feelings about awareness months and days. I could wear purple every day, and it wouldn’t change anything. Yet at the same time, if I wear purple and that strikes a conversation with someone who is then more aware of epilepsy, that’s a great thing. Because with awareness comes knowledge, community, and a collective fight to find better treatments.

In early 2011, I worked with a few friends and mothers whose children also have epilepsy. Amazing women, and we shared this awful experience that we worked so hard to turn into something positive. We went to Mike McGuire to advocate for our county’s first epilepsy awareness day. He was a county supervisor and this week, he just got elected to the senate. We went to a county supervisor meeting and spoke on our children’s behalf. I remember shaking so much and just wishing I was at home, in yoga pants that had never experienced yoga, with chocolate. We went to fire departments, schools, police departments, friends, family, and our communities. We advocated, wrote letters, hugged strangers, and learned a lot together. Our local paper wrote about epilepsy and it felt like we were fighting epilepsy so effectively that it was tangible. I remember speaking in Kai’s classroom and the 1st graders had the sweetest, rawest (is that a word? Most raw? Rawerest?) questions and statements. Kids are our best selves. I hold those moments with me still, for strength on the days I feel like I’m getting nowhere. At the same time, I feel like if I knew then how much our life would still change & flip upside down; I would have fought even harder.

Here we are, 3 ½ years later from that awareness day we advocated so hard for. Kaitlyn now has a feeding tube, a central line, isn’t physically in school, has a stroller for tough days. W.T.F. How is this manageable? She’s re-learned how to read more times than I can count. That’s such a great (fucked up) example of how her tenacity outweighs every hardship, but doesn’t negate it. Seizures take a lot away. They just do. And then she fights hard to get it back. Research didn’t used to support what parents already saw. Now research shows that seizures DO affect so much. By affect, they can also take skills away. It’s beyond heartbreaking when research, studies, or a doctor’s word validates that. But then, I’ve also never in my life, before all this with Kaitlyn; appreciated life’s moments like I do now. So basically; efff YOU, epilepsy. And thank you.

Is epilepsy all Kaitlyn has? I have no idea. Because epilepsy just means a recurrence of seizures- or a likelihood of recurring seizures. It doesn’t encompass the numerous disorders, syndromes, or multiple systems affected by having epilepsy.

What’s in a day? I’ve written about this before- I think 2 years ago. Or maybe it was yesterday? Let’s go with a day with no appointments to maneuver TPN or tube feedings around or adventures. Just a regular at-home kind of day; the manageable kind of day. The kind of day when people ask me what I do and I say, “I’m just a mom.”

5:00am- get up, start coffee, check on Kaitlyn. Lay next to Kaitlyn because I had a dream about the pump beeping.

6:00am- wash hands. Find tube extension. Wash it. Shake med bottle 30 times. Measure meds. Give 2 meds through the G tube. Pause J tube feedings, one med through J tube. Wash extension. Find the coffee cup I lost an hour ago.

7:00am- wake up Kai. Make breakfast for Kai since he still won’t wake up. Snuggle Kai. Ask about homework, where’s his lunch box? Did he brush his teeth? Clean lunchbox. Find food that would qualify as a ‘balanced enough’ lunch. Make Kai a lunch. He’s old enough to do this on his own, but I love this part of my day still.

8:00am- Wash hands. Hand sanitizer bath. Gloves on. Take Kaitlyn off TPN- change the cap. Take the battery out- find the charging thing. Charge the battery for 4 hours. Take next bag of TPN out of the fridge. Wash hands. One med through the G tube.

OHCRAP. We’re almost late for school every day. Rush Kai to school. Which reminds me I haven’t changed the turn signal light –I’m really angering people when I turn right--and we still need gas.

8:45am- take Kaitlyn off jtube feedings- flush tubing. Homework with Kaitlyn if she’s awake- clean bedding with formula spilled/leaking if she’s asleep. Measure meds for the rest of the day, make formula for the day, prepare TPN bag.

11:30am- Wash hands, hang TPN bag, get all supplies lined out after cleaning the table with Clorox wipes. Wipe down anything that touches Kaitlyn or has the potential to.

12:oopm- Wash hands. Hand sanitizer bath. Gloves on. Start TPN- (2 alcohol wipes, 15 seconds to clean with each one) take battery off charging thing. Wash hands- noon meds through G tube port (shake bottle 30 times).

2:00pm- start formula- clean tube extensions, 2pm meds through G tube and J tube.

3pm- pick up Kai from school- Pack Kaitlyn’s pumps into bags- carry her (& all gear) to the car if she’s asleep- walk with her carefully & holding tubing + bags if she’s awake.

6pm- figure dinner out for Kai. + wash hands, 6pm meds through g tube, pause J tube feedings for meds through J tube. Wash hands. Homework with Kai- reading, etc (normal evening kiddo routine stuff)

8pm- meds through both G and J tube ports. Kai in bed. Kai’s bed routine differs daily really. We LOVE to ‘dance it out’ by turning ridiculous music very loud- lights out and dancing like goofballs until he laughs himself into a tired stupor.

10pm- wash hands- last of the days meds through G and J port. Check pumps- get Kaitlyn settled in. She’s usually awake- doing homework, trying to read, talking to me about everything she loved in the day (seriously, she does this every day and it’s the BEST reminder to stop and appreciate what’s right & good)

Then, find some sleep- in between the battery dying in the CADD pump, exchanging it, filling the formula bag back up- making more formula, etc.

That’s a long list of harsh little realities, and yet it doesn’t encompass much really. The great news- the BEST news, is that this routine is working. Kaitlyn is awake more often than not- she’s accomplishing more- her seizures are so much LESS. She’s gaining weight consistently! We fit in adventures and ‘living’ in our days so much better than we used to. We’ve gone to the beach, to the city, the park, walks, adventures with friends. We’ve also lost touch with many friends. That understandably happens. Our lives are so full and our routine is ridiculously tricky sometimes, but it’s where we are & what we’re in. That stupid line about, ‘it is what it is’- I hate it, and I definitely get it. There are days I want to curl up and cry, get lost in a bag of chocolate and Netflix. And there are days when I’m writing to the governor about home health care, calling our legislators, and speaking up. No matter what kind of day it is, epilepsy affects us. Can I blame it for everything? No. I have to own my situation just like anyone else does.

Epilepsy awareness for me means acknowledging where we are in this craziness, fighting for better, and appreciating the moments we’re in no matter what. When seizures attack Kaitlyn- I am a mix of auto-pilot and frazzled fear. The fear makes me move quicker to respond but it feels like it freezes me too. The sounds are horrible and indescribable. The color she turns isn’t right. I wish I could wipe Kai’s memory clear of our scariest days. Waking up to Kai’s scream in a bad dream- where he’s dreamt his sister died is awful. The way we both jump up when Kaitlyn’s in another room and makes a sound we don’t recognize is tough. Trying to answer Kai’s valid, raw, and heart-wrenching questions is a process I haven’t mastered. The videos on my phone of moments of Kaitlyn’s seizures make me want to throw up. I hate having them, but they sometimes help providers realize what we see. The guilt in this is indescribable as well. It’s so heavy and consuming if I let it sit too long. I have to keep remembering what’s good and right. It’s a constant choice to choose to make a day better by living it to its fullest. I don’t always succeed in doing that, but the days we do are absolutely the best.

Accountability

Kaitlyn: "The best things come out of us in the worst times to make our life better. And sometimes the best things just come even if you didn't decide or know- you just feel it in your heart.”

Conversations with Kaitlyn anytime are among the sweetest experiences in a given day. And with that, conversations with Kaitlyn at 2am are among the most dynamic. Her clear perspective is so refreshingly sweet, honest, brilliant, and loving. She leaves me speechless. In all this, I’m supposed to be the adult; the responsible one who teaches my children daily, cares for them, provides for them, guides them, and loves them. I’ve said this before about parenting these two- the lessons and impact in listening are far more educational than the ones I’ve ever spoken.

I’ve written a lot since June- but I’ve stumbled with pressing the ‘send’ button. Why is that little button so intimidating? It’s that tricky balance I’m trying for again/still- in making sure I appreciate each day- and also in fighting for better days ahead. I’ve written about home nursing care before, but I’ve also struggled with how much to write here. By being silent, I worry that can be an implied acceptance to a home care system that isn’t doing what it says it is. That’s not okay. I’ve researched, written letters to state officials, emailed candidates for state office positions, and more. It’s not enough. I’ve talked to many parents, family members, nurses, Kaitlyn’s providers, other care-takers, many friends, and family. My advocacy for Kaitlyn isn’t new; however, my validation of it keeps growing. And still, this isn’t enough. The lack of accountability in home care is more than just heartbreaking; it’s completely infuriating. Families deserve better. Kids who need home nursing care deserve better. Our communities deserve better.

Kaitlyn: “People shouldn’t waste their life with pride.”

Why should this matter to you? At any point, if your child needs long term care- these issues would affect you. I didn’t plan for this. I didn’t think this was the life I would be in with my kids. I did not plan at all to be in this process- or to even know about it. I can’t sit and feel how sad and helpless this is sometimes because that’s more consuming than I have time for. If your elderly loved ones need home care, this affects you too. This affects all of us.

Who is responsible for home nursing care? This is part of the problem. Kaitlyn’s insurance covers home care financially- but they don’t oversee it. The accountability in home care is so vague. Companies can make up their own training protocols, which in actuality are incredibly lacking. There is no physician oversight to their training at all. Additionally, there is no process in place that lets parents or caregivers, or even patients themselves know what hours these companies are charging.

Entitlement. That concept is a huge part of the problem. Companies are more entitled than they are dependable or accountable. Health care for children should not be about entitlement or money. Politicians aren’t rushing to fix this, or even address this. Yet. I’m hanging on to hope with the ‘yet’ in that. This isn’t an attractive issue for some reason. Clearly there isn’t a lot of money in home care- and fixing it would take a lot of money. Are patients entitled to home care? Is that question part of what holds us back from making this system better? As a mother, I have asked this question countless times. Do we deserve home care? How do I justify needing a break? And if we do have home care- do I accept that it’s not going to be accountable because the system is overextended? Just because there is less money in home care does not make the patient less important. Hospital care is incredibly accountable, skilled, and the system in place is much more clear. However, being in a hospital is not the quality of life we strive for. Better home care all around would equate to less hospitalizations for many. Protocols are in place to prevent infections, provide for the safest route in care, and for the best health possible for the patient. So if protocols aren’t being followed, or updated; the risk is great.

I am not putting the nursing company’s name in this that we derived our experience from. This isn’t about them. This is about needing a better system as a whole. In talking with other families, this isn’t exclusive to just this company. This is a county-wide, state-wide, and national problem. This is our experience- and it’s been heartbreakingly validated through other’s stories as well.

In August, our one home nurse resigned. She gained employment with a hospital. They gained an incredible nurse. We were selfishly bummed because we miss her of course; but we are incredibly happy for her.

Blame doesn’t help anyone. What an incredible thing it would be if we all took responsibility for our own words and actions. That concept is thoroughly missing with the management in home care, which isn’t fair to the nurses who do incredible work and who are humble, skilled, compassionate, and thorough. Not all home nurses are inexperienced. The process in which they gain that experience is varied. The home nursing company will tell you that they ‘train’ their nurses to gain that experience yet sadly, that is overwhelmingly untrue.

Kai: “I think the government has a lot of policies but they need more voices.”

In advocating for Kaitlyn, one politician did email me back and agreed to meet with me. I completely appreciated his time. He listened reflectively, which made me feel heard. He didn’t make any giant promises, which I actually respect- because this isn’t something one person can fix. In the days leading up to that meeting, conversations with Kaitlyn and Kai were the most motivating. Kai wants to talk directly to the president & Kaitlyn thinks we should talk to her doctor more- that he can fix anything.  Kaitlyn wrote a letter and also drew a flower for my meeting. In it she wrote, “my mommy is very special” and, “I just hope you listen to what she has to say”. She told everyone we saw about it, and was so excited. The first thing Kai said when we picked him up from school that day was, “did your meeting go good? Did he say he would talk right to the president?” The love and support from Kaitlyn & Kai is intangible, yet is what gives me the strength to keep speaking up. I hope for more meetings in the future. I look forward to productive conversations.

Late August, I met with a social worker from Kaiser, Kaitlyn’s caseworker from the regional center, the owner of the nursing agency, two new nursing supervisors and their nursing scheduler. I had no nursing care- so I wheeled Kaitlyn with me. She had been up the entire night before. She knew I was going to that meeting, and she whispered to me in the morning, “Mama. I’m so proud of you. I’ll be right next to you and we can stand up for what’s right.” Stand up for what’s right. That statement in her sweet voice stayed in my mind and gave me strength through the entire day, and in all the days following really. The car ride, and exhaustion finally taking hold- Kaitlyn slept through that meeting. I could hear the humming of her TPN pump, which was a constant reminder of why she deserves accountable, compassionate, skilled, and adequate care. During the meeting, the owner seemed to listen. She offered to have 8 hours of training for the next nurse. This was huge and had never happened before; but the process was still vague. The nursing supervisor said she would provide the training. Not any other time had a nursing supervisor been a part of any home training for Kaitlyn, so that seemed hopeful. Although notable; before that meeting, she had met Kaitlyn twice. Twice. Conflict usually makes me itchy. It’s so uncomfortable it feels like my body revolts against itself and I want to just curl up and cry. I would make a terrible politician. But that day, I didn’t curl up or cry. I kept speaking. I spoke on Kaitlyn’s behalf and I asked the questions I’ve been asking for the past 3 years of this company. I appreciated the input from the social worker and the regional center worker. I really appreciated their time as well. They didn’t have to do that. There’s no system in place that holds nursing care companies accountable to them either. The next week, I received this letter; which is dated one day after we met. The company decided to stop any future care because of a “lack of trust” that she felt I would never give them. So none of that extra training was really true. The result of advocating for training, asking about the process with new nurses, and wanting to meet with nurses before they care for Kaitlyn is that we were ‘let go’. And this is in knowing that they were the only current company with home nursing care for pediatrics in our county. How is that okay? It’s not.




This letter made me feel manipulated and so small initially. I wanted to defend myself with what she wrote because it’s not at all representative of me, or what was said, or even what she had said. And then, I let that go. I felt empowered to advocate more. This letter is a great illustration of why we do need more accountability in home nursing care.

Kaitlyn is on multiple medications, spread out into 14 doses a day. She’s on TPN for 20 hours a day and formula through a jejunal tube for 18 hours a day. Accessing her central line has to be done so with experience and a clear understanding of protocols for her safety. It doesn’t just make me feel better to know that anyone accessing her line knows what they’re doing, it’s genuinely so important that her life could depend on it. Accessing her tube requires training as well, although thankfully less serious as her line. Her formula has to be mixed right, with the right ratio and time; or the tube clogs and that causes the machine to not function properly. When that happens, she’s not getting the calories she needs. From my perspective, this requires training and accountable care.

Let’s say I had $100 and I put it in the bank. I would know how much is there immediately. I can look online right away and monthly; the bank provides statements with any deposit and withdrawal. Relative to healthcare, when Kaitlyn has been transported by ambulance (a private company), they send a statement which lists what they did, how much they’re charging, and what the insurance is being billed, along with what they paid. There are systems in place for accountability. Yet with home care- there are no such statements or verification of hours allotted vs. hours charged. This could all be going super smoothly behind the scenes but without any accountability seen or quantified, there’s no way to know. Accountability keeps us on the same page. With Kai- he’s incredibly honest and hard working. I still check his school agenda and look over his homework. I sign his reading note, as his teacher has a system in place. It’s not to insult the kids or to make them feel dishonest. Accountability is a positive thing for everyone. From my experience, when the accountability is clear, I see better quality all around.

In home care- I see a need for fiscal accountability & training accountability. While I realize it’s not illegal to be rude, being treated respectfully would have been a great thing. When I spoke to the owner during the meeting, she spoke to the valid frustrations with Medi-Cal not paying the company very well. This in turn means they cannot pay their nurses very well. That’s a big part of this too. I whole-heartedly believe that if the companies work with parents, treat them well, are open and honest, and at least acknowledge a need for a better system; we can be better advocates for them as well. Because the reality of a poor paying job often results in nurses who have no experience and are starting out, or who can’t get a job where they would prefer. That doesn’t make them bad people, but the results of this paired with a foggy accountability system have been inexperienced care to those who need and deserve qualified care. If our experience with that company had been more positive, I would have been more inclined to not only trust them more, but to advocate with them as well. By being treated the way I was, disregarded, and then let go; it’s even clearer how much this needs to be better addressed.

Kai: “18-17-4. Phhhhsssshhh. Over. 10-4.”

Every once in a while- Kai still makes up radio codes and relays them over the broken kid radio that used to make beeps at 3am, but now collects dust.  I love his imaginative play- even though it often means I’ve been written up for something- or that my foot lands on a metal airplane scene. One thing he’s started doing lately is “navigating”. He draws maps and puts numbers all over it- and uses a microscope over a real map, gets his ruler and draws points and directions for who-knows-what. The numbers seem so random- but maybe they’re not. So many times in this with Kaitlyn- I’m memorizing numbers that I have no idea what their significance really is or how we got to these numbers. I’m just a mom- navigating in craziness I don’t always understand, but hoping and trusting that these numbers are how we’re all doing everything we can to make sure Kaitlyn has the best day possible & is always moving forward.  I’m incredibly thankful for the numbers as they are now because Kaitlyn is gaining weight. Her numbers, which may not be so random-, are inching upwards; and that’s an incredibly good thing.

Kai: “How do we know if the day is going to be mostly good? Because sometimes, BOOM. It’s bad. And then you say it will be good. And I am still waiting.”

We’ve really had mostly good days, so part of me doesn’t want to write out some of our trickiest. But maybe we appreciate the good because of the tricky? I really hope it’s not that messed up. Kai was talking about being nervous about a really good day he had with friends at Great America, because he was worried something bad would happen next. Maybe that constant bated breath we seem to be consumed in is because we have seen seizures take our Kaitlyn over at moments that were soooooo great before the seizure hit. The last big seizure that took her over came out of nowhere with no warning. We were having a great morning & start to the afternoon- she was standing by the kitchen counter and reached through the dish drainer to get a lid. I had just given Kai his lunch and I walked to the other side of the room to change the music. I’ve regretted that moment since. And replayed it too many times.  Really though, if I give myself a break, these are all normal happenings that a moment should be able to entail without clusters of chaos ensuing.  Yet instead of the cluttered fun chaos our moments can have (& truly mostly have)- this one was invaded by a big mean seizure. And just like seizures before- I heard it before I saw it. This awful sound I can’t describe right. I couldn’t get to her fast enough- she fell hard, seizing. The metal dish drainer was tangled in her arm & had fallen with her. She fell so hard- getting the drainer and its contents off her and away from her and then her in a better position were my first priority- then I got the emergency medicine out. Kaitlyn’s neurologist had changed/increased the dose & I had that number memorized, but I hadn’t ever given her that much before. I sent Kai to find the phone- gave Kaitlyn the medicine and waited. The waiting is the hardest part. I don’t remember timing anything- she turned purple in the seizure, then pale when the convulsing finally stopped. I can’t get the image out of my head and yet I can’t really describe it either. Kai had called 911 and was going over all the details we just watched, and were still watching. I got Kaitlyn moved to the couch after the convulsing had stopped. Her eye was swollen right away and the bruise on her arm from the drainer, or a dish formed pretty quickly too.  Kai was calmly reciting everything to the dispatcher. I didn’t hear any shaking in his sweet voice. I feel like a witness to chaos in these moments. We just function like we do- waiting through each passing second until either help is there or the seizure stops. I hate that Kai knows how to do that too. The firemen came in- somehow I talked, or rambled. I’m not really sure.  Kai stayed so calm. Really the emergency was over by the time they got there- it’s the after emergency chaos that can be the trickiest to navigate in sometimes because auto-pilot leaves and emotions come in. As she does so amazingly- Kaitlyn was fine. She recovered incredibly well. So did Kai- he wrote it all out that night- and then again the next day. Writing helps all three of us really. Kai wrote it & spoke it really well- describing the feeling that things can get scary too quickly and he feels like a seizure can happen any second. Every time Kaitlyn moved the next few days, we both jumped up. The next day, I went to take a shower- everything seemed calm. Right when I got shampoo in my hair, Kai came running in screaming, “seizure! Kaitlyn!”. I think I flew down the hallway- my feet landing on all Kai’s airplanes somehow. Ouch. Thankfully that seizure was much smaller and the VNS magnet worked. Thankfully also- we didn’t need to call for help that time. That would have been a bit more than any emergency crew should have to walk into. Half showered- all frazzled mom- and metal airplanes all over the floor. Even more thankfully- that cluster of chaos is over and we’ve had much, much better days since. This fight for normal is ridiculous sometimes. We find it, in our own way eventually.

Kai: “when you’re mad or you cried, you bake a lot. I kind of like that, but I don’t like that you’re sad. I just really like cookies.”

In light of, or in spite of (I’m not so sure) the chaos with the nursing company and the totality that is our life; I have been baking a lot. Kai is right. A few weeks ago after the umpteenth batch of cookies, cupcakes, and muffins; Kai joined me in my baking frenzy. We made cinnamon rolls. His favorite part was punching the dough. We talked a lot, measured a plenty, and flour was everywhere. He said waiting was not his favorite part. I agree.

Kaitlyn: “if you believe it will happen, it either will, or won’t. But it’s much more fun to believe.”

Earlier this week, we went to the Marin Headlands to explore.  We hiked, laughed, talked; I ran from a raccoon, which I’m fairly certain sounded like a chicken (maybe both of us did, but mostly the raccoon). It was very action-packed. As we maneuvered from one trail to the next, Kaitlyn was more and more alert. She was all hooked up to both TPN & formula- we made it out & about with everything attached to a backpack, attached to the stroller. We didn’t really have a plan, which was more than half the fun. We made it to the end of one trail. Not the end of the trail really, but the end of the capability of the stroller to keep going. Sand and strollers aren’t really friends. The ocean felt oh-soooo-close. So, we unhooked the backpack from the stroller and Kaitlyn walked some. I remember the point we couldn’t see the stroller. So freeing. Kai even said, “TA-DA!”. We went really slow. We stopped a lot. I carried her some. But, we kept going. We made it down steps- lots of them. This trek doesn’t seem like a big deal, but for us- it was a huge deal. If Kaitlyn fell back asleep like she had been on and off throughout the day, we had no back up plan. Kai’s eyes were wide open the whole time- Kaitlyn kept saying, “we can do this. We’re right here.” And we did. It literally took 2 hours all together. Not a single minute was boring or wasted. Kai held the tubing- Kaitlyn’s hand and my hand.  He would walk ahead when I sat with Kaitlyn, and see if it looked like we could keep going. When we made it to the beach- Kai was holding the tubing- I had the backpack- and Kaitlyn got a new surge of energy. Feet in the sand- just the 3 of us standing there. And like the big dork that I am- tears started streaming down my face- and I was laugh-crying, which is a very awkward sound. I felt like I should apologize to that beautiful beach for making that sound. Kaitlyn whispered that this was the best day ever, the most beautiful beach, the best family ever. Everything was the ‘best, ever’. That’s so Kaitlyn. All she sees is what’s best. Getting us back up to the top of the trail was just as exciting as making it to the beach.  I’m still overwhelmed in the best way from that entire day. She slept a lot the next 2 days, but the adventures were well worth it, we all agree.

Kaitlyn: “It’s like the days that aren’t good get erased because we have right now.”

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.