Monday, June 1, 2020

The Casual Exhaustion of Special Needs Parents

I took a nap today.

Wait, let me rephrase that. It's 1:30 in the afternoon, and I've already taken a nap today.

I can't tell you when the last time I slept through the night was. I can't tell you the last time I got more than four hours of sleep at a stretch. Some nights, four hours of sleep is a good night.

It's not that I lay awake at night agonizing over the shitstorm that is currently happening in our world, or in our home. It's not that I can't get comfortable despite still not having full range of motion in the arm that I broke. It's not even that it's too damn hot, although, in the last few weeks, that has definitely been a contributing factor.

It's that anxiety is a rude, thoughtless bitch, and even more so, I think, for special needs parents.

Anxiety is the voice whispering in my ear. While anxiety meds help me to be able to shut that voice up, it's rarely completely silent. Anxiety meds enable me to be able to focus on something else, instead of playing the anxiety mantra over and over in my head. But when you're trying to sleep? That's the one time you need to not be focusing on anything else. And that, dear friends, is when anxiety is the loudest.

I had anxiety before I was a special needs parent. Back then, anxiety said things like "Did you pay the gas bill?" and "Did you lock the door?" and "Hey, remember that time you sat cross-legged in a group project in sixth grade and realized an hour later that you had started your period and bled all over your jeans, which everyone probably saw?"

These days, anxiety whispers shit like "Hey, if Aria's blood clot fully occludes while she's sleeping, you won't know until you try to wake her up the next morning," and "If they switch her medication to Jakafi and you lose your insurance, it costs $13,000 per month."

Let me tell you, dear friends, that's some bullshit right there.

Both of these things are true, mind you. Thankfully, Aria's clot has resolved, but I'm pretty sure the thought about the clot occluding her vein ran through my head seventy-three times a night until she had the MRI that gave us the good news. Because of anxiety meds, I can ignore it when I'm scrolling Facebook or playing a game or watching TV, but when I'm trying to sleep? Good luck with that.

But it's more than the anxiety, for special needs parents.

  • It's the PTSD.
  • It's the worry about money.
  • It's the additions to the day-to-day stuff (remember to give meds, extra therapy appointments, trying to work full time on top of all of that).
  • It's the feeling like you need to devote more time to your healthy kids because you feel like they're getting screwed out of parent time.
  • It's the having to tell the third good-natured stranger today that you're not looking to add essential oils to your kids' medication regimen, thank you very much.
  • It's the seventeen phone calls that you made before work this morning.
  • It's the begging your boss or your clients for some extra time on that deadline or to come in a few hours late because your spouse couldn't get any time off to take the kids to therapy or doctor's appointments.
  • It's about wondering how many hours of overtime you (or your spouse) can realistically work this week.
  • It's about worrying about the long term effects of your spouse staying in a job he fucking hates because it comes with really good insurance and you both know he'll never find another job at that rate of pay with comparable benefits.
  • It's about wanting to move to the city where all of your specialists (and the really good hospital) are but knowing that rent there is triple what you're currently paying and there's no way you can swing that.
  • It's about worrying about who will take care of the kids when you die if they can't take care of themselves.

One of my oldest daughter's best friends is also a special needs mom. We both understand the issues and we both run on caffeine and sarcasm. Our kids are seen at the same hospital, and we've been trying to get together for a coffee date for over a year now. And neither of us have been able to get our shit together enough to make it happen. Because there's so much to do and never enough time to do it and oh my god I am already fucking tired.

But it's not just a physical exhaustion.

It's an exhaustion that resides deep down in my soul. I don't have physical energy, but I'm also pretty low on emotional energy.

Did you know that the divorce rate among special needs parents is higher than among parents without kids with health or neurological or emotional problems? I'm not surprised. At the end of the day, my husband and I barely have the emotional energy left to be nice to each other, much less make any kind of intimate connection. When our kids were younger, I always looked forward to this time, when the older kids would be out of the house and the younger kids would be moody teenagers, often locked in their rooms for days at a time, not wanting to spend any time with us. Then, I thought, the husband and I would be able to hang out together, watching the shows we never got to watch when the kids were little, have inside jokes, and not fall asleep before the good scenes happened.

But that's not the way things happened. For a long time, we were a tag team. I would be home, working when I could, juggling the kids and the house, helping manage therapies and headaches and bleeding episodes, and whatever else. He would come home from work and usually help out for a while, and we would fall asleep in a pile of arms and legs in co-sleeping bliss. But in some ways, it's gotten harder as the kids have gotten older, instead of easier.

Gone are the days where he walks in the door and I feel like I can get a break, or any kind of real help, with the kids. He's given all he's got to get through another day at a job he truly hates, but can't quit, because there's not another job nearby where we would get the type of insurance we need. Some nights, he doesn't even come home. He's the Chief of our local volunteer fire department. That creates, for him, an escape from the realities that having two chronically ill children. He has several trainings a month, and calls keep him busy a few nights a week. I don't fault him for that. God knows I spend enough time gaming to make up for any time he takes away from the house! We just don't have the emotional energy for each other. It's easier for us to take our minds off of our current situation with distractions.

A few months back, the owner of a local restaurant offered us dinner. We spent hours at the restaurant, eating, playing games, and laughing together. It was a much-needed chance to have some fun time together without needing to rush. But those kinds of opportunities are few and far between. We try to take the opportunity to eat out when we go to doctor's appointments, but we're often rushing to and from, so rarely do we have the time to linger over a meal. And because we eat out when we go to doctor's appointments, we don't often do so when we're home.

I know it sounds like I'm just on a big whining binge. Maybe I am.

Maybe I'm just tired.

Monday, July 15, 2019

The Weight of the Words "Seizure Free"

A few weeks ago, Roan had his EEG. At 13, he's had five. More than most people have in a lifetime. Certainly more than 99% of his peers. According to the Mayo Clinic, an EEG is an electroencephalogram. It's a test done to see what's happening with the electrical signals that occur in your brain. Since epilepsy causes the electrical signals in your brain to misfire, the EEG is the perfect test for determining whether or not epilepsy is currently active in your brain.

Roan had his first EEG in 2016, about six weeks after his first tonic-clonic seizure. It was done in a sterile room in the hospital, with bright lights and a technician in an adjacent room. We weren't given the proper instructions for how to prepare for the EEG, and I was afraid that it would be for nothing. But a few minutes into the test, I heard the technician gasp. An hour later, we were in a neurologist's
office with a definitive diagnosis of epilepsy, a prescription for new medications, and a huge, almost paralyzing weight settling in on my shoulders.

At the time, I remember being happy to have an answer. I remember feeling gutted, scared, pissed off at the world. I remember feeling like the medicine would do the trick, and we would never see another seizure. I remember having faith that our doctor would take care of Roan's needs, and everything would go back to normal. Well, normal for us.

That's not at all what happened.

The fine folks over at Wright's Law have written a book titled "From Emotions to Advocacy." It's about the struggle parents face as they deal with a child's diagnosis and have to help them manage school and figure out what special services they will need to thrive in the public school system.

It's also one hell of a figure of speech. Because in the early days after a life-changing diagnosis, emotions rule your world. You have days where you're ready to kick ass for your child, and days when you're lucky you can remember to make sure medications are taken on time. It's a heavy toll. As you're dealing with your own emotions, you're struggling to figure out how to help your kiddo deal with their own feelings regarding their diagnosis.

FYI, the answer here, for both of you, is therapy.

As the days pass by, you gradually start to figure out how to navigate the minefield of a life-altering diagnosis. You realize that while you are nursing some pretty painful hurts, your job, ultimately, is to help your kid figure out how to function as best he can, on his own, with this diagnosis, as an adult. Your job as a parent hasn't changed, you just have a few more obstacles than you did before. This isn't your fight. It's your kids. And your job is to help him fight it.

When your kid is young, that's easier to figure out. You spend time making sure they have help in school and the equipment and medication they need. You read books like "From Emotions to Advocacy" to help you become a better voice for them. You figure out how to navigate the tricky maze that is your insurance.

But as they get older, that shit gets hard. The focus is less on helping them succeed in the now (because hopefully, you've laid the groundwork for that already) and more on helping them succeed in the future. The purpose of occupational therapy switches from "functioning in the day to day" or "success at school" to "learning how to adult."

As our children grow up, we teach them the basics; how to cook, how to clean, how to be a roommate that isn't annoying as hell, how to put together a budget. For some special needs kids, these lessons are a little bit harder. For example, with epilepsy and autism, we have to make it a focus to teach Roan how to interact with police. We have to teach him how to figure out his meals a bit differently because his memory has been damaged by his epilepsy. If he cooks on the stove, he may well burn his house down.

And the entire time, while I've been helping Roan on his journey, the weight of the epilepsy diagnosis sits on my shoulders. While this is his fight, not mine, as his mother, I'm never far away from the reminder that my son has a condition that could, at any time, have him in a dangerous situation. He's at risk of a million different things happening to him that he wouldn't be at risk for if he didn't have epilepsy. And for that, I hate epilepsy.

But at his last EEG, we heard words we had never heard before in regards to his epilepsy. His EEG was "normal." Last year, his EEG did not show any seizure activity, but it was abnormal. So the change from abnormal to normal is huge for him. It means the electrical activity in his brain is no longer out of whack. It means his meds are working.

It also means he's seizure free.

I'd been waiting a long time to hear those words. There were times, as we tried yet another medicine when I thought I never would. When the best I could hope for was less seizure activity (at one point, he was having hundreds of absence seizures per day, so being down to a dozen or so a day was a vast improvement).

Last month, on June 14, we began a clock that I thought we would never start. Being seizure free means that it's safe for us to hit one of those milestones that are important to every teenager in America. We can begin teaching him how to drive. While Roan hasn't really mentioned driving, I
know that by the time I was 13, I was chomping at the bit to get behind the wheel. Now, it's safe for Roan to do that.

But more than that, June 14, 2019, began a two-year countdown that may end with us being able to reduce or even eliminate his medication. For some kids, epilepsy is a temporary thing. They have seizures and/or abnormal brain activity for a while, and then as they grow up, the seizures just stop. There's no real medical explanation for this, but it happens for many kids with epilepsy. In two years, if his doctor thinks it's possible that he's grown out of his epilepsy, the option may exist for us to attempt to wean him off of his medication.

That may not work out for him. And if it doesn't, then we will accept that and move forward, making sure that we're giving Roan the tools to function as an adult with epilepsy and autism.  At the same time, we'll know that we have the right medication combination, and we will move forward, hoping he remains seizure free.

The weight of the words "seizure free" is approximately 100,000 pounds. You can physically feel that weight lifting off of your shoulders the first time you hear your child's doctor say them. It's pretty fucking glorious.

Thursday, June 13, 2019

Confessions of a Craptastic 2016

It’s December 28, and everyone is posting their retrospectives about 2016. Heres mine: Fuck you, 2016. Continue on for the tl;dr version.
Sometime in 2015 I wrote this long essay about how the next year was going to be my year. The kids were getting older and my business was going well and I was going to be able to devote some time to writing and dammit, it was glorious. So glorious, in fact, that I should have known better. Because never in my life is shit that glorious.
And then 2016 actually arrived. The first few weeks puttered by, lulling me with a false sense of security. Decent weather, great clients, all in all a positive start to the year.
The third Sunday in January was a pretty normal Sunday for us. We had gone shopping. I made spaghetti for dinner. The little kids were in the hallway, watching videos on their tablets, sharing the only unused outlet in the house. I was walking into the kitchen to refill my water when I heard the youngest say “Yoda! You just fell over!” This seemed a little odd to me, so I went to go check on them. I found Yoda on his side on the floor, convulsing.
When you have five kids, you’ve spent a little bit of time in the emergency room. Usually, it’s parental over-protectiveness. Once, 24 shut her finger in the car door and I was afraid it was broken. 18 got in a fight and got pushed and hit his head on the gym floor. 24 went to the ER several summers in a row
while working at a Boy Scout camp because she’s clumsy and would hit her head…often. Each time, we were sent home within a few hours, fully recovered.
None of that prepares you for seeing your child laying on the floor having a tonic clonic seizure. It was, without question, the scariest moment in my life. I’ve been in car wrecks, been in fist fights, been in jail, walked in on a college roommate having a “meeting” with a bunch of shady looking guys with guns at their waists, and never was I as scared as I was that Sunday night.
Yoda’s tonic clonic seizure sent us on a long journey that isn’t nearly over yet. He has, at this point, a diagnosis of Childhood Absence Epilepsy, but that may change, as his epileptologist thinks he has some damage to his left temporal lobe. He had an MRI last week. Since January, he’s also gotten a diagnosis of asthma, and a confirmation of our suspicion that he has autism. He’s failed five anti-seizure medications; if he fails this one we will start on combinations. It’s been a year of skill regression, memory loss, side effects that included weight gain, weight loss, hair loss, tremors, and fear. He hasn’t had a tonic clonic seizure since January (he had his second seizure two days after the first) but he has absence seizures every day.
As I was trying to find our new normal, and learn about how our lives would be changed with an epilepsy diagnosis, my middle daughter got an abcessed tooth that required emergency surgery. My stress level was through the roof and I went on medication for high blood pressure. After Pidge began recovering from her surgery, my youngest daughter’s (Batgirl) migraines began to worsen. Trying to find treatment for these led to a diagnosis of Essential Thrombocythemia, a rare blood cancer that usually happens to people over 60. In the middle of all of this, my uterus broke and I needed surgery, and my mother died.
Thankfully we had some good moments to balance out the bad. My oldest son graduated high school, valedictorian of his class of six. Yes, six.We live in a tiny rural town and my kids go to a tiny rural school with an enrollment of less than 200, pre-K through 12. Pidge is growing out of that awkward early teen phase and becoming a smart, creative, opinionated person that I am proud of every day. 24 celebrated her first wedding anniversary.
And the littles? Despite having a craptastic year, they seem to be thriving, most of the time. I watched this morning as Yoda had a cluster of absence seizures, but then he went back to what he was doing as if it hadn’t phased him. Batgirl makes me laugh every day, in her smart, funny, confident way.
Fortunately, I’m able to take my cues from them. While 2016 has sucked big hairy donkey balls, my kids have given me the strength to move forward. Well, my kids and three different types of anxiety medicine. But seriously, if I hadn’t have needed to remain strong for them, I would have long ago dissolved into a raging mass of goo.
So that’s my 2016 retrospective. Just steps away from raging mass of goo status, but working towards solidifying in 2017.

What to do When Your Child gets a Scary Diagnosis

You might be here because you were recently given a diagnosis that scared the shit out of you. You might feel pretty overwhelmed or like you don’t know what to do next.
In 2016, my youngest son was diagnosed with epilepsy (and he had already been diagnosed with asthma and autism). It was scary and overwhelming and I was utterly filled with a mess of emotions that included fear and even rage. What the hell was going on? Why us? Could this be wrong?
Nine months later, my youngest daughter was diagnosed with a rare blood cancer called Essential Thrombocytosis (aka Essential Thrombocythemia). Not only is this a rare condition over all, but it’s what our oncologist called an “old people’s disease.” It was one of the last things she tested my daughter for, because it’s that rare. Batgirl is literally one in ten million.
So I know what you’re feeling right now.
You’re not sure what to do now that you have this shitty diagnosis.
First, you need to give yourself permission to feel however you feel. It doesn’t matter *how* you feel. How ever you feel is the right way to feel, and you should never, ever let anyone tell you that your feelings are invalid. Cry. Rage. Go out into a field and scream. Break something. Just *do not* harm yourself or anyone else. Or break something that you might regret later, like Aunt Jane’s precious vase or, you know, the car. Feel those feelings. It’s okay.
Next, you need to put on your big girl panties (or big boy boxers, whichever you prefer), stand up, and take one step in the right direction. This seems like a small thing. Moving toward acceptance or positivity or action or wherever the right direction is for you seems like it’s pretty easy, once you’ve given yourself a moment to feel your feelings. But I’m going to tell you that the first step is a bitch. You’re going to think you’ve taken it, that you’re moving forward, when all of the sudden you’re knocked on your ass again and you are back at your starting point. The pain, the anger, the fear is real, my love, and the first step is really hard.
At some point, you’re going to need to tell someone that’s not your spouse (or your kiddo’s other parent, no matter your living arrangement). Someone who can be supportive of you. This might be your best friend, or your parent, or your neighbor. Pick carefully. You need support right now, not questioning of your information or motives or choices. Because right now, you may be busy supporting your spouse or your sick kiddo. It’s essential that you tell someone. You need support more than you know. Especially because it’s gonna get a bit tougher for awhile. If you don’t have anyone, start with me.
You will want to lock down your social media. Yoda’s second seizure was at school. People knew what was going on before we made it to the hospital. We left the hospital with our diagnosis and a lot of unanswered questions. Once we were home and had some time to process, I logged into Facebook to tell *my* person and I had a dozen friend requests from people affiliated with our school (either parents or staff). I thought “Wow, these people really care about my kid.” But none of them ever actually said anything. Not even a “Hey, we’re thinking about you.” They just wanted to be nosy.
Be prepared for disappointment. We very quickly learned who our true friends were. We had countless messages in those early days, from people wanting to know how they could help. In the early days, we were too overwhelmed to know how to answer that question. But in the following weeks we began asking for help-and got a lot of silence in return. We were, and remain, grateful for every bit of help we got.
Be prepared for small things to overwhelm you. I went to our local grocery store and the cashier, who we’ve known for ten years or more, said “Oh, hang on, I have something for you.” She walked us out, and grabbed an envelope out of her truck. It was a hand-written note from her elderly mother, letting her know that she was praying for us. I broke down sobbing right there on the sidewalk. In the midst of all of the looky-lous and the crickets resounding from those who had offered to help but backed out when we needed them, the gesture of offering prayer, and taking the time to write me a note, meant everything.
You may want to hide for awhile. For several weeks, we just kind of closed in on ourselves. It gave us time to deal with our feelings, to help the kids deal with theirs, and to find our new definitions of
normal, of ourselves, and of our friends. We made new rituals. Blood draws means ice cream. Emergency room visits mean you get dinner of your choice after release (or when doc clears you for a normal diet). Bone marrow biopsies mean you get a movie of your choice.
Become a dedicated student of your child’s condition. I know more about epilepsy and essential thrombocythemia than I know about Star Wars, and that’s saying something. I’ve read medical journals (Google is your friend when you’re trying to figure out the definition of polycythemia vera or hypotonia), watched YouTube videos, and found parent support groups where I learned even more. While you have to trust your specialist, it’s important that you have basic knowledge. No one will be a better advocate for your child than you will, and for that to happen, you have to know as much as you can.
Find a support group. For epilepsy, it was easy for us to locate our state support group. The only problem is that the closest meeting is about three hours away. So I found some online groups (Facebook is a great source) that gave me the opportunity to ask questions about meds, how to find a great doctor (we’re on our third neurologist), and see if a side effect was a normal expected reaction or something I should be concerned about. For Batgirl’s blood cancer, the condition is so rare that online was my only option for finding support. Thank goodness we have the internet to allow us to have that kind of support.
Tell other people *as you’re ready* to. People will come up to you and ask, and you only have to answer questions to your level of comfort. Let me say that again: you are under no obligation to tell anyone anything about your child’s medical condition if you don’t want to. Some folks ask about one of the kids, and I know they are actually showing support. I share more info with them. Those looky-lous and nosy folks get the bare minimum. I tell them the kids are doing well today and thank them for asking.
Be prepared for everyone to become an expert. I’ve had people tell me about remedies they were certain would work, second-guess our decision to medicate (or not), ask the kids’ vaccination status, and ask if we had considered the possibility that one or both kids were possessed.
Learn your rights. When it comes to your child’s education, your insurance coverage, your ability to have a service animal in your rental, and your ability to medicate your child how you see fit. There are various groups on Facebook that can help with many of these issues. Learn your insurance company’s appeal process in case they turn down a medication or treatment. If your child will need help accessing their education, you may need an IEP (Individualized Education Plan). Work with your school nurse to develop a health plan.
Realize that even after you get past the initial shock, outrage, fear, and whatever else you may be feeling, that you will still have bad days. A health setback, curious questions, or even absolutely nothing can cause you to have an emotional day. And that is totally okay. This is where your support person is important. You will need them way more than you realize in the beginning. I can send my person a message that simply says “fuck epilepsy” and she will not judge or even ask what’s up, because she knows if I need to tell her more, I will. Maybe I just needed to get that little bit off my chest. She has been the one to listen when I cried or yelled or just needed to vent. She was always there. She even came and picked us up once when we got released from the hospital a day earlier than we planned on. But also realize that your person may not be enough. My therapist says that many special needs parents suffer from PTSD. I also have anxiety, and take medication for it. That’s okay, too.
Finally, you need to remember that you are stronger than you realize. I’m not going to give you that bullshit about how God only gives special children to special parents. I heard that so many times in the early days and I just wanted to throw up every time I heard it. It’s an empty platitude to someone who is scared, mad, and second-guessing everything. But you are stronger than you realize. You’re going to feel tested, bent, beaten and bruised many times in the next six to twelve months. But one day you’re going to wake up and realize you’re a little less pissed than you were yesterday. Or you’re going to be able to find joy in something small. Or you’re going to realize that you only cried in the shower once this week. Any of these are victories. Your backbone will strengthen and you will come to realize, at some point, that everything you dread may happen tomorrow, and that you’re going to have to live through that, just as you lived through the diagnosis and the days that followed.
And you will live through these early days. They may feel dark and cold and lonely and so fucking painful. But you will live. Because you must. Because you are who your kiddo has to guide them through this thing that is also scary and confusing to them. You are that light shining through the darkness to them, even if you do have to go hide in your closet to sob for three minutes every afternoon.

What is Essential Thrombocythemia (Thrombocytosis)

I’ve mentioned a few times that my daughter suffers from Essential Thrombocythemia, also known was Essential Thrombocytosis. Every time I say or write those words, people look at me as if I’m speaking a foreign language. Even my spell check doesn’t recognize either of those words.
The short version is that Essential Thrombocythemia, or Essential Thrombocytosis, is a condition in which your bone marrow produces too many platelets. Platelets are the components of your blood that make your blood clot when you cut yourself. They’re the reason we don’t bleed to death when we do something stupid like hold the bagel wrong while we’re slicing it, or cut off the tip of our finger when we’re using a meat slicer. Clots are good!
However, clots can also be bad. Red Blood CellsClots are what cause strokes, because blood clots form inside of veins and cut off oxygen to the brain. Clots can cause pulmonary embolus or can lodge in the heart or lungs.
My daughter, forever known here as Batgirl, was given a diagnosis Essential Thrombocythemia when she was nine. We suspect she may have had it for longer. Here’s her story:
Batgirl started having headaches that I thought were migraines when she was six. We have a family history of pediatric-onset migraines, so it really didn’t strike me as strange, although there’s no doubt that it sucked. We took her to the doctor, and we had an eye exam that showed no problems. Doc suggested that dehydration was probably contributing, and we moved on. They eased quite a bit once we started making sure that Batgirl got plenty of water every day.
When she was eight, they came back with a vengeance. We again took her to see a doctor who said she was probably deficient in magnesium. On her orders, we started treating her with a daily magnesium supplement and giving her Milk of Magnesia when she got a headache. While the MoM helped her headaches, the magnesium supplement did little to change the amount of headaches. We went back to the doctor and she suggested more magnesium and a B vitamin. By this time, I was a little pissed that we hadn’t been referred to a neurologist and she hasn’t done blood work; in short, she was guessing about the magnesium deficiency. Some weeks, Batgirl was having three headaches a week. We decided it was time to switch pediatricians.
While we were waiting for our new patient appointment, she got a headache so bad that we took her to the ER. The ER doc suggested caffeine in the mornings and daily ibuprofen until we could get in to see a neurologist. He put in a call to our new pediatrician, and was able to expedite our appointment. Our new pediatrician immediately ordered an MRI, did a blood draw, and gave us a referral to a neurologist. He called the next day and told us to stop the magnesium and B vitamin. Her levels of mag were high, and her levels of B were stable. His nurse called a few days later and told us that her platelet levels were high, and that they were referring us to another doctor. She gave me the number and told me to call to set up an appointment.
I was a little nervous. The nurse, who I’ve known since she was in junior high school, wanted us to be sure to call the new doc today. Said it was urgent that we get her seen as soon as possible, even though it meant driving over four hours to the specialist. I called the doctor’s office and they answered the phone “Rocky Mountain Pediatric Hematology/Oncology Clinic.” I almost dropped the phone. I scheduled the appointment. I remember thinking that my voice sounded funny. I debated calling my husband, and then decided that this was “in person” news, not phone news.
I can tell you, I’ve had some moments as a parent when I’ve been knocked for a loop. My oldest kid routinely ended up in the ER because she inherited my inherent gracefulness and managed to fall down or bump her head hard enough to knock herself out or some other goofiness several times during her late teen years. Seeing her in an ambulance was scary. Seeing my son having a convulsive seizure in my hallway was scary. But those are fear in the moment kind of things. You’re scared and then things calm down and the fear eases somewhat.
But knowing that your child has an appointment with an oncologist? That shit doesn’t ease. It sits there, marinating in the dark recesses of your brain, where every single ugly, negative scenario that you can imagine plays out in high definition slow motion agony. I called my BFF and confided in her, then tried to get my shit together to go pick up the kids from school. Once, when I was in high school, a cute boy said hi to me and I felt all of my marbles fall out of my brain. I couldn’t think of a single reply. I just stood there, smiling, trying to remember what I was supposed to say to reply to him. Now, as an adult, I spent much of the afternoon of that phone call trying to find my marbles, but every time I found a few, they would scatter all over again.
I didn’t actually recover all of my marbles until a few days later. I had to wait to tell my husband, because I wasn’t yet emotionally able to offer the support I knew he would need. I barely had all of *my* marbles together; there was no way I could help him pick up his when they fell.
Essential thrombocythemia is generally diagnosed through elimination. First, we had to have another blood draw at the oncologists office. Often, high platelets are caused by something going on inside the body. This is known as reactive thrombocythemia or reactive thrombocytosis. Our doctor noticed that Batgirl had a low ferretin level, which both could cause the high platelets, and could cause her headaches. She immediately put us on an iron supplement, and scheduled us for another blood draw (we did most of our follow up blood draws locally, thank goodness).
In the meantime, she had an MRI, which came back clear. When we saw the neurologist, we gave him the CD of the MRI, and he said that she was young for pediatric onset migraines, but that it wasn’t unheard of. He prescribed Maxalt and anti-nausea med, and told me to call him if anything changed. He told us we could stop the caffeine and the ibuprofen, but the oncologist had told us to keep taking the ibuprofen, because it makes platelets less sticky, so they are less likely to form a clot.
This continued on for several months. Batgirl’s platelet levels continued to climb. After four months, our doctor had us come back up to Denver where she did another exam and then did a blood draw for a genetic test. If Batgirl had indeed had reactive thrombocythemia, her platelet level should have returned to normal either with time, or with the iron supplement. Instead, her platelets had continued to go up. She told us it would take six weeks for the tests to come back. It took almost eight.
Finally, we had our diagnosis. Essential thrombocytosis, positive for JAK2 mutation. Our oncologist switched Batgirl from ibuprofen to aspirin, because aspirin does a better job of preventing clots than ibuprofen. Of course, we were hesitant about that choice, because aspirin causes Reye’s Syndrome. So not only did I need to read about her new diagnosis, I needed to read about this as a possibility. Most people diagnosed with Essential Thrombocytosis are over 50; taking aspirin is no big deal for them.
We were about to learn just how rare Batgirl’s cancer is. I joined a Facebook group for Essential Thrombocythemia, and found only a handful of parents there. The vast majority of members in this group were in their 50s or older. The few parents in the group started chatting, and before long we formed a group for pediatric onset essential thrombocythemia. I learned that Batgirl is one in ten million, and most of the treatments available to her weren’t proven; there were hardly any studies on life expectancy of children who developed this form of blood cancer, because there have been so few cases. Of the few parents in our Facebook group who are active, only a couple are from the United States. The rest are spread out throughout the rest of the world.
For the worries about Reye’s Syndrome, we were cautioned that Batgirl should not get the flu or chicken pox. For the first time, we all got the flu shot in 2016. Chicken pox is no problem, since she’s vaccinated for it. We put together a health plan with the nurse that explained to teachers that they needed to watch for signs of deep vein thrombosis or stroke. It’s odd that I have a ten year old child who is at a much higher risk of stroke than most elderly people I know. Because of her aspirin therapy, we also have to make sure she doesn’t get cut badly.
In November, Batgirl had a bone marrow biopsy and an ultrasound of her spleen. This was a relatively easy procedure (the bone marrow biopsy was done under general anesthesia) done at Rocky Mountain Hospital for Children. Everything went well. No scarring of her bone marrow and her spleen isn’t enlarged. Her platelets continue to climb (as of this writing her platelets are 1,453,000; normal is around 350,000). We are considering obtaining a second opinion; it’s not that we don’t trust our oncologist, it’s that this is so rare that we’re concerned we may be missing a treatment option.
Mostly, we just keep going. Some days, she’s really tired. She has random bone pain that is probably due to the Essential Thrombocythemia. We met with our local first responders to make sure they understand how critical her situation is; that way we don’t worry about them thinking we’re overreacting if we call 911 because she’s having stroke symptoms. Because yes, our ten year old could actually have a stroke. We’ve changed our diet to be more healthy; less gluten, more whole grains, more raw vegetables, etc.
Whether you’re the parent of a child who has a diagnosis of Essential Thrombocythemia (or Essential Thrombocytosis) or an adult who has that diagnosis, I’ve put together some links you may find helpful.
First, read my post about what to do if your child is given a shitty diagnosis.
This .pdf, from the Leukemia and Lymphoma Society, is a great starter information sheet for caregivers including school nurses and teachers.
This site gives a broad overview of ET.
This site has a pretty comprehensive FAQ about ET.
Voices of MPN is a great site put together by Incyte Corporation. They send you brochures, bracelets, and ribbons to help you build awareness.
National Cancer Institute has some good resources, too.

Medication is Risk vs. Reward

At some point many special needs parents have to make the decision about whether or not to medicate their child for their condition.
This is never an easy decision.
I mean, there’a s lot of shit to take into consideration. Immediate side effects. Long term side effects (Thalidomide was a wonder drug for women suffering extreme morning sickness, until the babies started being born with phocomelia). Stigma. Costs (at one point, the cash cost of Yoda’s meds was $1000 per month). Other treatment options.
Recently, someone in an epilepsy parent support group on Facebook asked about the choice to medicate (or not). This is my answer:
Medication is risk vs. reward. 
Medication has been a positive experience for us. We went from hundreds of seizures per day to 2-3 per day now. Before we found a better med combination, he would be so disoriented after an absence seizure that he once almost walked into traffic. But our meds aren’t perfect. They don’t give us 100% control, and his current side effects include a tiny appetite (but better than the tremor and hair loss he experienced from previous meds). But it’s better than him never being able to be more than a few feet from someone else because of worry that he would get hurt as a result of the disorientation. It’s better
than us trying to find a way to make pool noodles stick to the corners of the walls because he would often run into them just walking to the bathroom. It’s better than him missing 40-90% of what his teachers were saying. It’s better than him starting the same sentence ten times because he’s clustering so quickly he doesn’t realize he’s already said those words. It’s better than him spending hours on my lap or laying with me on the couch because his brain is rebooting every 6-10 minutes from a seizure and it’s scary to him to lose time like that. Today he’s sitting in the living room while I’m in my bedroom, watching a show he loves on Netflix, after doing some typing exercises for Occupational Therapy, and his chores, which include putting away dishes. He’ll make his own lunch soon (he’s 11), which he couldn’t do for awhile because he would forget what he was doing (the microwave died when he forgot to put his food in it before turning it on). After lunch, we’ll do some reading/recall, again for Occupational Therapy, and if it cools off enough we’ll go outside and play (which we still have to do together because he does still have some seizures and we don’t have a fenced yard). He may need services for the rest of his life, but what we have today is 1000 times better than what we had a year ago, and that wouldn’t be possible without meds.
I can promise you that I am most definitely a hippie mama. My house is fully stocked with medicinal teas, herbs, and essential oils. Just like you, I want the best for my children. When that means caring for a cold or muscle sprain, I most definitely go for the crunchy methods. But epilepsy? I’m not willing to risk the long term effects that could happen by playing with herbal remedies for that. No. 
There is a time and a place for crunchy cures, and there’s a time and a place for medications. You’ll have to make that decision for yourself. But for us, it was a no-brainer.

Bruised, Bent, but Not Broken

It’s been awhile since I’ve updated here. Life has been stupid busy, and to be honest, blogging hasn’t been a priority.
Which is really stupid, because realistically, writing is the only therapy that works for me.
I’m feeling bruised today. Like there is this point where, as a special needs mom, you have to reach within yourself to find that little bit of strength that was left at the bottom of your soul. You aren’t sure it will be there when you reach, but you find it, and that gets you through one more day, one more hour, one more minute.
I’m to the point in my life where I’m continually surprised that the last little bit is there. I fully expect to reach into that well and scrape the bottom, my fingers grasping, but finding nothing. Maybe I even have, a few times. Those were the times when I sobbed in the shower, hoping the kids didn’t hear me over the sound of the running water. Or when I left the room as soon as the husband got home, because I needed just five minutes of quiet.
It’s times like these that remind me of the necessity of self-care. I know, that seems so stupid to so many special needs parents. I mean, how in the fuck am I gonna find time to care for myself, when I’m so damn wrapped up in taking care of these kids.
And man, I get that. On the deepest, darkest levels of pain and fear and sleep deprivation, I get what you’re saying. There are not enough hours in the day for me to take care of the kids, work, cook, keep house and spend any amount of time to take care of myself.
And sleep? Oh, yeah, that’s a laugh. My therapist notes that special needs parents often have PTSD, and that causes a severe lack of sleep, because we’re afraid something may happen while we’re sleeping. I have sat up countless hours watching Yoda sleep, because Mother caring for her sick girlhe jerked or moaned in his sleep and I was afraid that might be a lead up to a seizure. Sleep in and of itself becomes a form of self-care, simply because it’s something we can grab in short spurts when a partner gets home or a friend offers to sit with the kids. I’ve napped in the truck (with Larry driving) on the way to doctor’s appointments, and in the waiting room while Yoda was having Occupational Therapy.
A few weeks ago, we were at Batgirl’s oncology appointment, and there was a mom and kiddo there in the waiting room, with sleeping bags, pillows, everything they would need to be comfy while they waited. I thought “Oh, man. I get you, mama. Hope you get some good snoozing in.”
But the reality is, special needs parents don’t get enough self-care. Often, it’s because there’s a lack of resources. I feel guilty going to get a manicure when I know I will be getting a bill from Children’s for $550 any day now, from Yoda’s latest inpatient EEG. Date night with the husband is almost impossible, simply because there’s a lack of people willing to take on Yoda’s care. It’s not that he requires much in the way of ongoing care while we’re gone, it’s that, on the off chance that he does have a seizure become status epilepticus, his life is completely in the other person’s hands. There’s not a lot of people willing to take on that level of responsibility. We could hire a nurse, or even a nursing student, but then we go back to that $550 hospital bill, and weigh it against what we would need to pay for a skilled caretaker, and we’re back to the reason I don’t get manicures.
Truthfully, it pisses me off. I know that in an emergency, where one or both of my chronically ill children needed care and neither me nor Larry is unable to provide it, there are three people I could call.
Three who would be willing to drop everything and come down here and care for my kids. And of those, two risk losing their jobs or an entire season’s income to do so. Most likely, they would do it anyway, but it would still have a long term impact that I wouldn’t wish on anyone.
So when I see those memes that talk about how special needs parents must take self-care seriously, I usually just blow them off. Sometimes, I get downright pissy about it though. Yes, it’s important. Yes, we must prioritize it, or we will be scraping the bottom of that well of strength.
But there’s no one else to do what needs to be done, so we can’t. So I will continue to feel bruised until there’s some point where I can get some extra sleep, or lock myself in my room to watch Handmaid’s Tale while I fold the laundry, or something else that can take my mind away from the every day struggles.
In the meantime, recognize that the special needs mom you know may need some extra patience because she hasn’t slept well. Or that the special needs dad had to break plans with you because he’s picking up extra shifts at work to pay that hospital bill. Grant them your patience, and maybe cook dinner for the family one night so they can spend more time together.