Thursday, November 1, 2018

I'm Angry Today

It seems like I think about grief a lot this time of year.

It starts in late August, the lead up to my mom's birthday, which is in early September. It continues through until about mid November, which is the anniversary of my dad's death. I'm not sure if it dissipates after that, or if I just get so caught up in the holiday prep that I'm able to push it far enough back that it doesn't bother me quite so much.

As usual, there's a lot on my mind. I've been thinking about things with my mom a lot lately. I remember when I went to college, and she moved without telling me where. I remember being told that she had moved, and that she had left all of my stuff in the old house. I borrowed money from my mother in law to get a U-haul and go get my stuff. I drove around for hours with my grandfather, trying to find the new house. I remember the thought process I had at the time.

'I know she would have told me eventually. She just forgot.'

'Surely there's been some mistake.'

In the few years before her death, my mom and I didn't talk a lot. She had been pushing me to make some decisions, and I wasn't ready. The outcome wasn't what she wanted, and she stopped talking to me. As life happens when you have a houseful of kids, I really didn't notice it much.

In 2015, I texted to wish her a happy Thanksgiving. I didn't get a reply, but I didn't think much of it. Maybe she was spending the day with friends, or was resting on an extra day off.

On Christmas, I texted again. This time, I got a reply. In Spanish. Someone else had my mom's number.

I pushed it out of my head until three weeks later, when my son had his first tonic clonic seizure. Suddenly, I really needed my mom. Not only did I need support, but I needed some pretty detailed family medical history. I called the number, and reached someone who didn't speak English. In my stumbling, halting Spanish, the gist of what I got from them was that they had had that number for months.

As I sat there on the edge of my bed, the room spinning around me, I finally realized the enormity of it.

My mom had changed her phone number and not told me.

I hadn't really thought much of it, at the time. When I didn't get an answer on Thanksgiving, or even on Christmas, when the answer was in Spanish. My life was it's normal level of crazy busy, made worse by the rush of the holidays. It wasn't until that moment of extreme need that I had forced myself to think about it, and accept it.

Truthfully, it wasn't the first or even second time my mom had moved or changed her number and not
told me. It was at least the third, and probably the fifth.

It's only in the last month or so that I've really taken the time to think deeply about this. To process the fact that my mom deliberately cut herself off from me. That she just decided she was done being my mother.

As a mom of grown children myself, I don't get it.

As a daughter I want to try to make excuses for her. I want to say for years that my dad and I suspected she was bipolar. That whenever we suggested that she needed help with her mental health she would accuse us of trying to gaslight her. That we had discussed trying to have her involuntarily committed, but were pretty sure that we would be unsuccessful, and that the result would be disastrous for my younger brother. I want to say that she made the effort, a few times, to reach out to me after months of not taking to me.

But as a person who is nursing the hurt of realization, I think I'm done making excuses. I just want to be mad about it. I don't want to spend my whole live dwelling on it, but I think that being honest in your emotions is part of the healing process.

It's okay to be angry. This is something I've always told my kids. It's okay to be angry, even at me. What you need to be aware of is how you express it. You can tell me you're angry, but if you're yelling at me, I may not listen. If you slam your door, that's not okay.

So I'm angry today.

Maybe I'll be less angry tomorrow.

Tuesday, October 16, 2018

What to Do When Your Child Gets a Shitty 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.

Saturday, October 13, 2018

Book Blitz: The Opal Blade Release Day by Kristy Nicolle

Title: The Opal Blade
Author: Kristy Nicolle
Genre: Dark Fantasy Romance
Editor: Jaimie Cordall Hosted by: Lady Amber’s PR
Blurb: When Sephy Sinclair is forced to sign a contract taking over her father’s business empire, she’s not happy. What she doesn’t know though, is that in having her Father’s legacy thrust upon her, she’s about to discover the secret lives of her parents, and most importantly that her lineage is steeped far deeper in ancient myth and magic than she ever anticipated.
Journey, with Sephy, through The Hollow and find yourself among the sinners of Mortaria, The Underworldian City ruled by a council of Gods made mortal. Here, she will seek sanctuary beneath a purple sun and vermillion sky, ruled by Haedes, a man broken beyond repair by an incident far too close to home.
Unfortunately for Sephy, it is Haedes alone who can teach her how to wield her newfound powers. Will he overcome his personal loss in time to save Sephy as she is hunted by the Demon Lords of Ancient, or will Sephy be used as a bargaining chip to bring Mortaria to its knees?
Facebook Showcase: 
Kristy Nicolle is a 23 year old writer living in the historically beautiful English city of Norwich. She is a full time writer and a graduate of The University of Lincoln in English literature & language, as well as an avid collector of first editions.
Having penned her first novel length piece at age thirteen, Kristy has been writing daily ever since and is particularly drawn to Paranormal Romance, Fantasy Romance and Science fiction. Kristy Nicolle's Queens of Fantasy Saga is a collection of 3 trilogies, following the lives of three extraordinary women and their journeys, both personal and fantastical, into three unique but interconnected fantasy worlds. The first trilogy in the saga, 'The Tidal Kiss Trilogy', captures the fantastical underwater world of the Occulta Mirum and its scaly tailed residents as their world, which seemed stable for so long, begins to shift. The Second and Third Trilogies names- The Ashen Touch Trilogy and The Aetherial Embrace Trilogy are currently a work in progress.
Kristy is also an animal lover and has a cat, Mitsy, who she has lovingly dubbed Doctor Moo after harboring the belief that all cats are secretly Time Lords. Kristy's reading preferences are wide, spreading from William Gibson to William Golding and encapsulating multiple genres, though her favorites include Science fiction, Adventure stories and Postmodern narratives such as Salman Rushdie's 'Midnight's Children', and numerous Angela Carter titles.
Author Links:
Buy Links:
The scene would shock most people.
A nun on her knees, giving head to the god of The Underworld.
Haedes’ face is contorted with anger and pleasure melded into one, and Annie’s eyes are wide and tear filled, staring up at him as he continues to thrust himself into her mouth.
At the intrusion, they both turn from where they are positioned. Her at the foot of the super king size mattress, and him towering over her, both hands grasping the black wood of the bed post with white knuckles.
I cough, clearing my throat as Annie’s gaze becomes slightly terrified. She’s bound at the wrists and ankles with black silk, unable to move, but clearly mortified. Her blonde hair falls from beneath the ceremonial wimple he always makes her wear, for a reason I can’t understand, as her jaw slackens and he turns to me, fully naked.
“Your daughter, and yes, she is your daughter –  is under attack from the Demon Lords. She’s coming to stay with us. Thought you’d like to know,” I announce, keeping my chin tilted high and spinning on one heel.

Friday, October 12, 2018

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. Clots 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 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.

Facebook Essential Thrombocythemia Group

Facebook Pediatric Onset Essential Thrombocythemia Group

Thursday, October 11, 2018

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.

Monday, October 1, 2018

Bruised and 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 he 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.

Tuesday, September 18, 2018

Reflections on Grief

It's been almost 13 years since my dad died. I've been thinking a lot about grief lately.

I'm not sure why my dad has been so heavy on my mind lately. Maybe it's the ongoing stream of bad news we've been getting about the kids. Or the constant feeling like I need to cry, but being unable to. Or the butterflies that I keep seeing that have what he always called "screaming yellow" on their
wings. It was his least favorite color, and I have zero doubt that if he were sending messages from the great beyond, screaming yellow butterflies would definitely fit his sense of irony.

I've needed my dad more in the last three years than I did in the previous ten combined. I feel like when your child is given a diagnosis of a chronic illness that will probably kill them eventually, you have this miasma of emotions. There's an underlying current of unending rage, somedays so palpable you could stab it with a knife. There's fear, and angst, and the ever-growing anxiety. Anxiety about doctors, about prescriptions, about the never-ending need for money to pay for the co-pays and the gas to and from occupational therapy and specialists visits and what are we going to have for dinner tonight and OHMYGOD did I finish that piece of work that was due?

The last few months have been some of the roughest, for some reason. A's chemotherapy dosage was raised, and she's often tired. This morning she told me that she had a hard time waking up, so she should stop playing outside after school because that makes her too tired. What kind of bullshit is that for an eleven year old to say? No, my love. You should do all of the playing with your friends outside. Nap, if you must. Go straight to bed after dinner. But in that precious time between when you come home and time for dinner? Please, for the love of all that is holy, go outside AND BE A KID. God knows you are busy with needle sticks and bone marrow biopsies and debilitating headaches. You deserve every second you get to be outside, playing with your friends and being a kid.

I also feel pretty alone, many days. I have a husband and I have a best friend and they are there, listening to me, walking with me, holding me up some days. But in the middle of the night, when my inner voice tells me to go check on the kids or that things are getting worse again or that it's just all going to shit, it would be nice to have my dad around. Somehow, he always knew what to say. He always knew how to make me laugh. He pushed me to broaden my comfort zone and take risks and to get back up when I fell.

And I fall a lot these days.

It's not that getting up is any harder to do than it was when I was younger. It's that some days there are so many goddamn things knocking me down, and I know that if my dad were here he would help me slay some of those demons.

What I have instead are screaming yellow butterflies. A backbone patiently installed, grown, and strengthened by a man who somehow knew that I would always need to be the strong one. The memory of man who loved me when I was terribly unloveable, which gave me the knowledge to know that I am worth every thing I think I am.

Some days, that's enough.

Some days, I just need my dad.

Sunday, September 2, 2018

Why Family Dinner is a Priority

Over here at Embrace the Chaos, family dinner is a big thing. Like most families, we're crazy busy. At this point in our lives, we aren't a sports family, although we have been. But N. is taking college classes during her senior year, which means that she comes home later than her siblings do. The husband misses dinner several times a month due to volunteer fire department training nights. Plus we have dinner on the run often because of doctor's appointments. So making it a priority to sit down to dinner together a few evenings a week is a big deal to me.

When the kids were younger, I felt like all of my daily activities were just building up to family dinner. Finishing the breakfast dishes meant that there would be no mad dash to wash Yoda's favorite plate, and that we wouldn't run out of forks. I could chop some veggies while I cooked lunch, but I couldn't put the salad ingredients together or else the lettuce might wilt.

I have the world's smallest kitchen. We call it a "two-butt" kitchen because once you get three butts in there, someone is getting ran over or dropping something or banging a knee on a cabinet door. You walk into the kitchen and on the right side there is a cabinet, the stove, a single row of drawers, the refrigerator, then another cabinet. Then you're at the wall. On the left hand side, there's a set of double cabinets, the sink, another set of double cabinets, and a big empty space. In that big empty space goes your clothes washer, in theory.

When the kids were younger, I broke down sobbing one day as I was trying to wash all the dishes, and we had two in bottles and if you've ever had that issue, mama, let me fix you a cup of tea because it sucks, doesn't it? You have eleventy billion bottle lids, nipples, bottoms, and whatnot to keep track of. You can also guarantee that as you're washing the bottles, at least one bottle is in the possession of a little, full of milk or water. I would also lay down good money that says there's at least a bottle behind a crib, stuck between the mattress and a wall, or wedged down under couch cushions. Yeah, mama, I remember those days.

Anyway, after some sobbing, and some hysterical yelling at the husband, he decided he was fed up and went to our local rental place and picked up a portable dishwasher. You may have seen one. It's on wheels so you have to slide it over to the sink and then hook the hoses up to the faucet and you have freshly washed dishes.

But for some reason, because we had the portable dishwasher, we also had a portable clothes washer. It's been so long now that I can't remember, but there we were, fighting every day to get the dishes and the laundry done so that we could finish all of the prep that went into fixing family dinner for seven. While some of those days were frustrating, many of them were silly and filled with laughter.

As the kids got older, I had less helping hands in the kitchen. My two oldest kids played all of the sports. Even though N. doesn't play sports, she's been in that isolated teen phase since she was eight. And the littles do surely love to help in the kitchen, but now there's homework and playing outside and other priorities.

So family dinner it is. At least two nights a week, we all come together. Our tiny apartment doesn't have a real dining room, so we eat together in the living room. We may be watching Football, or a movie, or nothing at all. But it is a chance for us all to hang out together to laugh a little bit, and to make sure that we all have at least a bit of time together.

Since N. has just started her senior year, at some point in the upcoming year, we will have our last family dinner as a group of five. Just as it did with her siblings, this will make me feel bittersweet. I can't tell you how proud I am of the adults my three oldest have grown into. There just aren't enough words. But man, I hated it when they moved out of the house. With each of them, it came rushing to me way faster than I was ready for it, and I cherished all of our family dinners together.