Author: katyleask

Music Therapy, The Words We Choose, Tips

Manageable

Posted on by katyleask

… Intangible (ah y’all), bet you didn’t think
So I command you to, panoramic view (you)
Look, I’ll make it all manageable

Gorillaz – Clint Eastwood

I’m not sure I’ve ever really wrapped my head around this lyric, but it’s currently stuck on a loop in my head.

I have a wee quirk that makes my brain play clips (e.g., song lyrics, short scenes from movies) when a particular word is mentioned or when a certain situation arises. I have to work hard not to react aloud when this little play button gets pressed in my head. It’s harmless, but it’s a thing.  

For example, I can’t hear the phrase “Think it’ll work?” (Or some variant of it), without responding in my head “It would take a miracle.” in Billy Crystal’s voice from The Princess Bride. I’ve been supressing the urge to say it out loud since the late 80s.

Similarly, I can’t hear “one time…” without hearing Wyclef Jean from the Fugees in Killing Me Softly. I’ve only been supressing the urge to say that aloud since the late 90s. 

In 2023, it’s Gorillaz and Clint Eastwood. I’ve known the song for years. It’s a jam. I sincerely love it. But this year a particular word started to tweak my sound bite syndrome.

It’s “manageable.”

Manageable is, for the most part, perceived to be a good thing. In our world, in our medical world specifically, it generally comes with news that is not necessarily what you want to hear, but with the hope that you’re going to be able to do something about it.

Food allergies = manageable. Pack safe food. Carry an Epi pen.

Non-malignant brain tumour = manageable. Surgery and chemo…prognosis is good.

Monocular vision = manageable. In time she’ll adapt and likely even be able to drive.

“Manageable” is also how some minor deficiencies and shortfalls may be described.

The ongoing chemo and dairy allergy combined mean that bone health needs to be watched and monitored. Your kid fractures a few things over a couple of years, and you manage that. Her bones aren’t bad, but they may need a boost in the long run. Add supplements and get exercise in where you can. Totally manageable.

The term can also apply to complicated, scarier things that you just get used to and learn to manage over time.  

Hemiparesis from my daughter’s stroke has been a big one to figure out, but we have teams of occupational therapists, physical therapists, and orthotists who’ve been helping us with this for years. As the person with the condition grows, they also problem-solve and figure out their own solutions. This condition was actually starting to feel like we could handle it. Plenty of setbacks, a pretty steep learning curve, and a shit tonne of work for a wee little kid, but life still happened around it. “Manageable.”

But there comes a point when layers of “manageable” start to compound. The pandemic didn’t help for sure. New protocols and stressors. New additional challenges to learning and socializing. Again, “manageable”, but not insignificant for anyone.

Continual tumour growth (though slow and steady thanks to the chemo) definitely added a few new layers too. At the beginning of this year our daughter was back for another round of brain surgery. They removed another massive amount of the tumour, which was awesome, but there have been consequences with her endocrine system**, which has not been awesome. Several new conditions requiring several new treatments. All of it ongoing and evolving. Some of it is life threatening in a whole new and exciting way.

**NOTE: The endocrine system, if you don’t know, is a big deal. It kind of runs a lot of the show behind the scenes. All those hormones that regulate growth and development, hunger and thirst, urine output, stress responses, and sleep…the hormones we take for granted long before puberty even enters the picture, and we get slapped in the face with an awareness of how wild our body can be.** 

Our daughter’s endocrine system took a hit with this surgery. Five years ago, it was a stroke, and we didn’t know if we’d get to bring the same kid home with us. This time, our daughter woke up her bubbly, chatty self, but it quickly became apparent that some of the systems running in the background were not online. 

These new developments have been a lot to manage. 

The trigger for this most recent surgery has itself become another few layers of things to manage. Our daughter has had vision in just one eye since she was three. Other than protecting the good eye with super stylish kid glasses (she has better taste than I do), vision was not something we really followed closely. She only had one eye, but it was a good one. Until of course, it wasn’t. Changes to her vision prompted her second major surgery. It took the pressure off her optic nerve, but she didn’t regain what was lost. 

Now, in addition to managing food allergies, accessibility, and learning deficits from illness and absence, in addition to life saving precautions and treatments for an endocrine system that’s barely phoning it in, this 8-year-old is also managing significant vision loss. And for the most part, she just fucking does it. It’s absolutely wild how much she just rolls along and lives her day-to-day through all manner of madness. 

But it’s another layer, on top of many other layers, that are being managed…and for all of us, our daughter the rockstar included, it’s starting to feel a lot less manageable. 

We’re good at this. We’ve been doing this most of her life now. We have teams of supporters in and out of the hospital that dab our brows with a towel and push us back into the ring every time we take a hit. But you can only take so many hits before you can’t get back up.

As parents, we’re also “managing” all those basic parent things, like trying to make sure both children get to school, that our daughter gets the opportunity to make friends with real live kids, that she learns to read (despite an embarrassing number of absences and a total lack of educational assistants for students with exceptionalities), that she gets to be an actual kid before she has to learn to manage all these extra shitty things herself. 

I’m an organized, resourceful person and my partner is a smart, driven, dedicated parent. We work well together, and we have more resources and flexibility than many. But no tracking table or “ToDo” list can effectively capture all this. There aren’t enough hours in the day to manage all the 5–15-minute tasks and therapies and treatments we’re trying to implement and no app that can synchronize the choreography and timing of it all.

Each of these things takes time and brain power and a little bit of soul. As a caregiver and a parent, some days I feel crushed by the weight of the (literal and figurative) binder we carry to hold all this information. I feel guilty that I’m not doing her exercises enough, or getting her to drink enough, or playing with her enough because I’m always trying to get something DONE. It’s the time as parent and kid that gets cut for the time as caregiver and patient.

This is why I bristle at the word “manageable.” It’s not a bad word. It’s a good word. It carries hope and a plan of action. It also carries responsibility and weight that cannot be shifted to someone else. As much as we would like to lighten our load, focus on the positive, and affect some fucking self care, families like ours, with kids like ours, must accept that we cannot step out of the ring. The hits will keep coming and we will have to find a way to get up. (Cue Captain America sound bite: “I can do this all day.” I don’t feel it, but I hear it.)

So, I have a few requests.

To those who engage with us professionally and personally:

Please remember that we’re trying. We’re trying so hard. We are never not trying, even when it seems like we’re not. There are no breaks, no vacations, and no off switch. All of that requires planning and training and protocols as well. There is only prioritization, and we can only carry so much up front.

When we’re told that a condition, treatment, or situation is “manageable” please understand that a delicate balance is about to be disrupted and we’re trying not to explode. 

15 minutes of therapy or tracking doesn’t sound like much but every day it has to work along with home reading, administration of meds and treatments, meal planning and prep, extra admin work and communication, insurance forms, emails advocating for or requesting services, extra calls with school staff, searching for shoes that fit over bulky orthotics, searching for or driving to activities that may or may not cater to your child’s particular needs, pharmacy runs, spontaneous specialist appointments and calls, midnight ER visits, and somewhere in there…we have two children that need us to pay attention to who they are actually becoming and what they need amongst the noise to be real live people.

Oh, and we also have to find a way to be employed. Maybe maintain a relationship or two. Maybe work on being human ourselves, instead of just the sum of our functions.

“Management” is the right word to use. Caregiving a job. It requires focus and expertise and an understanding of overarching goals and how it all fits together. It takes time to build the skills and the systems to integrate new tasks and procedures and we, as parents of medically complicated kids, don’t generally get a lot of time to do that. You are not likely the only one throwing a wrench in the system this week. We appreciate that it’s all important, but It’s. All. Important. 

So please…

  1. Be patient.
  2. Be flexible. Your time is at a premium, but so is ours.
  3. Tell us the good news (when you can).
  4. Acknowledge the things we’re already doing and highlight what we’re doing right. This can change the course of our day completely.
  5. Remember that our (brain) storage space is limited, and our processing power is taxed. Speak plainly and write terms, next steps, and drug names down. Give us something to Google and a reliable source to consult when we have time to process what you’re asking us to do for/with/to our kid.
  6. Support caregiver leave, pay, home care, and respite. There are so many ways to do this.

Every day, parents of medically complicated kids are doing things we didn’t sign up for and for which we have received no training. It’s a job on top of a job on top of a job.

To those who already do this…Thank you!

To those who do not…

Take a panoramic view. See who we are as a family in the context of our child’s condition. For good or for ill, it frames everything for us.

Make it tangible, digestible.

And you’re going to use the word, please use your skill set and expertise to help make it genuinely manageable. 

Ok…I get the sound bite connection now. Thanks brain.

Enjoy some Gorillaz.

0
Music Therapy, The Words We Choose, Tips

Manageable

Posted on by katyleask

… Intangible (ah y’all), bet you didn’t think
So I command you to, panoramic view (you)
Look, I’ll make it all manageable

Gorillaz – Clint Eastwood

I’m not sure I’ve ever really wrapped my head around this lyric, but it’s currently stuck on a loop in my head.

I have a wee quirk that makes my brain play clips (e.g., song lyrics, short scenes from movies) when a particular word is mentioned or when a certain situation arises. I have to work hard not to react aloud when this little play button gets pressed in my head. It’s harmless, but it’s a thing.  

For example, I can’t hear the phrase “Think it’ll work?” (Or some variant of it), without responding in my head “It would take a miracle.” in Billy Crystal’s voice from The Princess Bride. I’ve been supressing the urge to say it out loud since the late 80s.

Similarly, I can’t hear “one time…” without hearing Wyclef Jean from the Fugees in Killing Me Softly. I’ve only been supressing the urge to say that aloud since the late 90s. 

In 2023, it’s Gorillaz and Clint Eastwood. I’ve known the song for years. It’s a jam. I sincerely love it. But this year a particular word started to tweak my sound bite syndrome.

It’s “manageable.”

Manageable is, for the most part, perceived to be a good thing. In our world, in our medical world specifically, it generally comes with news that is not necessarily what you want to hear, but with the hope that you’re going to be able to do something about it.

Food allergies = manageable. Pack safe food. Carry an Epi pen.

Non-malignant brain tumour = manageable. Surgery and chemo…prognosis is good.

Monocular vision = manageable. In time she’ll adapt and likely even be able to drive.

“Manageable” is also how some minor deficiencies and shortfalls may be described.

The ongoing chemo and dairy allergy combined mean that bone health needs to be watched and monitored. Your kid fractures a few things over a couple of years, and you manage that. Her bones aren’t bad, but they may need a boost in the long run. Add supplements and get exercise in where you can. Totally manageable.

The term can also apply to complicated, scarier things that you just get used to and learn to manage over time.  

Hemiparesis from my daughter’s stroke has been a big one to figure out, but we have teams of occupational therapists, physical therapists, and orthotists who’ve been helping us with this for years. As the person with the condition grows, they also problem-solve and figure out their own solutions. This condition was actually starting to feel like we could handle it. Plenty of setbacks, a pretty steep learning curve, and a shit tonne of work for a wee little kid, but life still happened around it. “Manageable.”

But there comes a point when layers of “manageable” start to compound. The pandemic didn’t help for sure. New protocols and stressors. New additional challenges to learning and socializing. Again, “manageable”, but not insignificant for anyone.

Continual tumour growth (though slow and steady thanks to the chemo) definitely added a few new layers too. At the beginning of this year our daughter was back for another round of brain surgery. They removed another massive amount of the tumour, which was awesome, but there have been consequences with her endocrine system**, which has not been awesome. Several new conditions requiring several new treatments. All of it ongoing and evolving. Some of it is life threatening in a whole new and exciting way.

**NOTE: The endocrine system, if you don’t know, is a big deal. It kind of runs a lot of the show behind the scenes. All those hormones that regulate growth and development, hunger and thirst, urine output, stress responses, and sleep…the hormones we take for granted long before puberty even enters the picture, and we get slapped in the face with an awareness of how wild our body can be.** 

Our daughter’s endocrine system took a hit with this surgery. Five years ago, it was a stroke, and we didn’t know if we’d get to bring the same kid home with us. This time, our daughter woke up her bubbly, chatty self, but it quickly became apparent that some of the systems running in the background were not online. 

These new developments have been a lot to manage. 

The trigger for this most recent surgery has itself become another few layers of things to manage. Our daughter has had vision in just one eye since she was three. Other than protecting the good eye with super stylish kid glasses (she has better taste than I do), vision was not something we really followed closely. She only had one eye, but it was a good one. Until of course, it wasn’t. Changes to her vision prompted her second major surgery. It took the pressure off her optic nerve, but she didn’t regain what was lost. 

Now, in addition to managing food allergies, accessibility, and learning deficits from illness and absence, in addition to life saving precautions and treatments for an endocrine system that’s barely phoning it in, this 8-year-old is also managing significant vision loss. And for the most part, she just fucking does it. It’s absolutely wild how much she just rolls along and lives her day-to-day through all manner of madness. 

But it’s another layer, on top of many other layers, that are being managed…and for all of us, our daughter the rockstar included, it’s starting to feel a lot less manageable. 

We’re good at this. We’ve been doing this most of her life now. We have teams of supporters in and out of the hospital that dab our brows with a towel and push us back into the ring every time we take a hit. But you can only take so many hits before you can’t get back up.

As parents, we’re also “managing” all those basic parent things, like trying to make sure both children get to school, that our daughter gets the opportunity to make friends with real live kids, that she learns to read (despite an embarrassing number of absences and a total lack of educational assistants for students with exceptionalities), that she gets to be an actual kid before she has to learn to manage all these extra shitty things herself. 

I’m an organized, resourceful person and my partner is a smart, driven, dedicated parent. We work well together, and we have more resources and flexibility than many. But no tracking table or “ToDo” list can effectively capture all this. There aren’t enough hours in the day to manage all the 5–15-minute tasks and therapies and treatments we’re trying to implement and no app that can synchronize the choreography and timing of it all.

Each of these things takes time and brain power and a little bit of soul. As a caregiver and a parent, some days I feel crushed by the weight of the (literal and figurative) binder we carry to hold all this information. I feel guilty that I’m not doing her exercises enough, or getting her to drink enough, or playing with her enough because I’m always trying to get something DONE. It’s the time as parent and kid that gets cut for the time as caregiver and patient.

This is why I bristle at the word “manageable.” It’s not a bad word. It’s a good word. It carries hope and a plan of action. It also carries responsibility and weight that cannot be shifted to someone else. As much as we would like to lighten our load, focus on the positive, and affect some fucking self care, families like ours, with kids like ours, must accept that we cannot step out of the ring. The hits will keep coming and we will have to find a way to get up. (Cue Captain America sound bite: “I can do this all day.” I don’t feel it, but I hear it.)

So, I have a few requests.

To those who engage with us professionally and personally:

Please remember that we’re trying. We’re trying so hard. We are never not trying, even when it seems like we’re not. There are no breaks, no vacations, and no off switch. All of that requires planning and training and protocols as well. There is only prioritization, and we can only carry so much up front.

When we’re told that a condition, treatment, or situation is “manageable” please understand that a delicate balance is about to be disrupted and we’re trying not to explode. 

15 minutes of therapy or tracking doesn’t sound like much but every day it has to work along with home reading, administration of meds and treatments, meal planning and prep, extra admin work and communication, insurance forms, emails advocating for or requesting services, extra calls with school staff, searching for shoes that fit over bulky orthotics, searching for or driving to activities that may or may not cater to your child’s particular needs, pharmacy runs, spontaneous specialist appointments and calls, midnight ER visits, and somewhere in there…we have two children that need us to pay attention to who they are actually becoming and what they need amongst the noise to be real live people.

Oh, and we also have to find a way to be employed. Maybe maintain a relationship or two. Maybe work on being human ourselves, instead of just the sum of our functions.

“Management” is the right word to use. Caregiving a job. It requires focus and expertise and an understanding of overarching goals and how it all fits together. It takes time to build the skills and the systems to integrate new tasks and procedures and we, as parents of medically complicated kids, don’t generally get a lot of time to do that. You are not likely the only one throwing a wrench in the system this week. We appreciate that it’s all important, but It’s. All. Important. 

So please…

  1. Be patient.
  2. Be flexible. Your time is at a premium, but so is ours.
  3. Tell us the good news (when you can).
  4. Acknowledge the things we’re already doing and highlight what we’re doing right. This can change the course of our day completely.
  5. Remember that our (brain) storage space is limited, and our processing power is taxed. Speak plainly and write terms, next steps, and drug names down. Give us something to Google and a reliable source to consult when we have time to process what you’re asking us to do for/with/to our kid.
  6. Support caregiver leave, pay, home care, and respite. There are so many ways to do this.

Every day, parents of medically complicated kids are doing things we didn’t sign up for and for which we have received no training. It’s a job on top of a job on top of a job.

To those who already do this…Thank you!

To those who do not…

Take a panoramic view. See who we are as a family in the context of our child’s condition. For good or for ill, it frames everything for us.

Make it tangible, digestible.

And you’re going to use the word, please use your skill set and expertise to help make it genuinely manageable. 

Ok…I get the sound bite connection now. Thanks brain.

Enjoy some Gorillaz.

0
Tips

Making the Most of the Cards You’ve Got

Posted on by katyleask

Lifetimes ago, when I first started this blog, I wanted to be helpful. Back then, I was overwhelmed with the idea that my kid would go through life with a collection of food allergies that exceeded the capacity of her medic alert bracelet. I figured others must be out there, feeling the same way.  

I was new to a world with specialists and protocols, and I was neck-deep in a lake of frustration and logistics that most other families and a lot of other kids didn’t have to deal with.   

I wanted to connect with other parents who were trying to figure stuff out.  I wanted to make them laugh and roll their eyes and stomp their feet in empathetic fury when an ignorant dink (who could have been me in another parenting life) sent their four-year-old onto the playground climber, covered in a thick schmear of peanut butter. Observation: The same kids always seem to have cheese-powdered Doritos in hand. (Just clean their fucking hands first, is that so hard!?!)

Clearly, if you’ve read anything on this blog before, you know that was just the tip of the iceberg with the list of conditions and obstacles my daughter has had to overcome. The food allergies, at this point, feel like a foot note.

It’s a pretty common scenario to be half an hour into her medical and therapeutic run down, when I add “Oh…I forgot to mention…she’s ALSO allergic to everything in that other kid’s lunch box, so don’t let her touch it.”

We have become members of many “exclusive” clubs and my daughter seems to dance between a number of them at any given time. Some of her conditions are uncommon, but the deck of membership cards seems to grow rather than shrink as the years go by. One club tends to lead to another.

Not everyone carries the pediatric brain tumour card. Even fewer carry the pediatric stroke card. The combo of those two is another slice (of a slice) of the statistical pie and together they lead her, by pure shitty luck, into different undesirable categories of rare and scary scenarios for growth and development.

Some of her conditions, resulting from her major medical stuff, exclude her from things that are typical for kids her age (like riding a standard two-wheel bike). Society excludes her from a few more (like front-door access to her school or playing tag with peers at the park). Food allergies were just the first level of all that. Her conditions are varied, overlapping, and like every kid…unique.

As a result of all this, we are “frequent flyers” at the local children’s hospital.  It’s a good one. It has all the departments.

 And over the last three years, we’ve been trying to hit as many as we can. I’m pushing for a set of collector cards!

We’ve run into so many magical people in so many different roles, all nestled within the different levels and departments of the local medical community. I can totally picture what their ability stats and “hit power” would be. We’ve all got our weaknesses and weapons and armour. There are so many characters in our medical world that would absolutely blow up in manga-illustrated glory.  

At our level, we’d have cards for something along the lines of 20 different specialists and/or departments; everything from cardiology to ophthalmology, endocrinology to intensive care, gastroenterology to (of course) oncology. 

We’d have all three neurosurgeons from our hospital’s collection. A complete set!

There are definitely families that would leave our collection in the dust. They have enough cards in their decks to earn VIP status — with lounge access, fresh fruit, and foot massages.

We’re probably closer to free coffee and an extra blanket with every overnight stay. We’re there a lot, but others are there much more. 

Players who’ve been collecting a long time, with all their cards in hand, can tell you which bathrooms are still clean at 5pm and which bathrooms will be out of toilet paper by 10am. They can tell you which hallways are empty after rounds (if you need a place to sit on the floor and cry) and tell you which cafeteria worker will smile and call you “honey” when you need a nonclinical face to be kind and hand you hot french fries with cheese and gravy. 

They offer sympathy and laughs and hand you the remote for the waiting room TV (if you’re allowed to change the channel). They understand that look on your face, when the doctor has left the room, and give you a nod. 

Knock on wood, our collection has recently been focused on the outpatient edition. We’re still collecting new cards from around the hospital, but we’re mostly there for touch points, and check ups, and bloodwork.  We’re in maintenance mode right now, but you never know when a new and exciting card is going to make its way into your deck. 

For players who are new to this game, whose decks are small but growing, I’m sorry.  It’s not a fun hobby, but there are skills you can acquire and steps you take to make the most of the cards you’ve got in your hand.   

Tip 1: Assume everyone is having a shit day.

Be nice. Not sugary sweet, but respectful, compassionate. Give someone an energy boost if you can.

This applies to pretty much everyone you encounter that works in a hospital. People are at their worst in a hospital and staff often take the hit for that. Some people who work there will be turds because health care workers are human beings. But I’ve lost track of the number of occasions where a custodian, porter, volunteer, nurse, or friendly doctor in the elevator have completely changed the tone of our experience for the better with a small and simple gesture. Hold a door, smile, be patient, be polite, let someone know when they’ve helped you, show appreciation, and take a breath before you take someone’s head off.

For the love of God, treat the parking staff like human beings. People are rude to them all day and their office is likely in a windowless sub-basement. Like most human beings, they deserve a little empathy. Even if they seem grumpy at first, they’ll remember you were kind and they’ll be kind too. You will lose your parking passes. The gate will get stuck. You will leave your lights on and need some help when your battery dies…on top of everything else you’re dealing with that day. 

Pay the good stuff forward and try to internalize an assumption that everyone in that building is going through something you don’t know about and could use a pick-me-up. 

Tip 2: Back your car into hospital parking spots. 

This sounds like a small thing, but it is important. Underground parking spots are teeny and the rows are tight. Everyone there is parking under some kind of duress. If you drive forwards into a spot, someone will absolutely park too close for you to effectively extract your vehicle when it’s time to leave.  You’ll end up doing an 87-point turn when you’re emotional and overtired and the parking attendant will have to come over to redirect traffic the wrong way so you can wiggle your way out like a chump. Back in. Trust me.

Tip 3: Keep a “hospital bag”

If you’ve got a kid, you’ve probably had that backpack or suitcase in your closet in the weeks before your due date. If you’ve got a person in your life who is medically vulnerable in some way, pack that bag and keep it handy. At 2am, when shit goes down, you’ll be glad you did. 

Things to keep in the bag:

  • A change of clothes (PJs work for almost all occasions) and underwear for the patient
  • Slippers or flip flops for the patient
  • A spare stuffy or comfort item (as age appropriate…a bottle of gin to calm mom’s nerves will generally be frowned upon)
  • A notebook and pens, crayons, markers (good for entertainment or blurry-eyed note taking of terms or follow up steps), tiny toys, or cards
  • A printout of medical conditions, medications, surgeries, medical history (there are a lot of forms to fill out and questions to answer in an ER situation and sometimes it’s hard to recall dates and doses on the spot)
  • A towel. Douglas Adams was right. A towel is always useful. (It’s a blanket, a pillow, a wrap for belongings, a barf catcher, or you know…a towel.)
  • A spare charger for your phone
  • A set of ear buds or headphones
  • Snacks (granola bars, raisins, instant oatmeal packets to make breakfast in a Styrofoam cup with nothing but hot water)
  • Wet wipes and deodorant. A comb. A toothbrush. Hair elastics if you or the patient use them.
  • Tylenol/Advil. Fatigue often comes with a headache. You will be tired and your head will hurt or your back will seize up from those terrible chairs. The pain meds the hospital provides are not for you. They’re for the patient, so bring your own. 

Something to keep on the bag:

  • Tape a piece of paper to the bag with a list of things you’ll need to add to the bag before running out the door
    • Health card
    • Current meds
    • Cell phone or device to entertain the patient
      • Note: If you have a tablet of some kind, it’s good to keep a download of shows or movies the patient likes on there all the time. This is a good job for siblings to help with. They’ll pick better stuff than you. Maybe apps or games they like. Drawing apps are always fun. Makes long waits around the hospital a little less cranky and you won’t have to worry about patchy (or expensive) Wifi access.

Tip 4: Keep a set of hospital clothes to throw on at a moment’s notice.

The first time you do a 2am ER run, you’ll go in your pajamas. The next time, you’ll be ready to settle in for a longer stay. Keep a little bundle of the following on a shelf somewhere in your closet.

  • Sweatpants (You’re not trying to impress anyone here. You can sleep in these and you can wear them around.)
  • T-shirt and hoody (Hoods are good to pull over your head to grab a nap under fluorescent lights. You’ll want layers because hospitals are either freezing or raging hot. There is no connection to the weather outside.)
  • Socks and slip-on shoes.
  • A comfy low impact sports bra (or equivalent). I cannot stress this enough. Find a bra that is comfortable enough to sleep in (no underwires!), but hides your nipples (if you have an issue with your nipples being seen). Residents will barge into a room at 8am, fully dressed and full of coffee and expect you to bounce up off your reclining chair/pull out bed beside the patient to answer questions or get an update. If you wear a bra, make sure you have one you can sleep in. 

Tip 5: Keep a “book”.

Every game has a guide. When we first got into this whole business, we had daily notes to keep. There was a tsunami of information to be processed on very little sleep. You’d be surprised what the average caregiver has to track and recall. There are a lot of questions about what goes into and out of your kid. Not just meds and tests. At some point, you’ll find yourself trying to figure out how to convert three sips of apple juice into milliliters. At some point you’ll have seven different descriptors for poop you’ll have to choose from. There will also be a lot of jargon and terminology you don’t understand.

Make notes. Don’t be afraid to ask the specialist or nurse to repeat themselves or to write the name of that drug they’re adding to the IV. Stick test results and discharge papers in the book. Get one with pockets or add a clip to attach prescriptions or requisition forms you need to hold onto. You’ll get the paper requisition for the blood series in hand and an appointment for that specialist several months later. They’ll expect you to have the paper requisition…even though it’s all in the same building…on the same computer system. I have no idea how hospitals work.  Just hold onto the papers.  

We’ve gone through several iterations of “the book” and over the years I’ve printed different templates and customized calendars to our tracking needs. Most of it I’ve abandoned for a simple duotang with some print outs and some loose-leaf lined paper. Find a system that works for you and one that any other caregivers or partners can understand and follow.

  • Keep notes after appointments. Note the date, which specialist you saw, and the general gist of what they said.
  • It’s a good idea to have a section for “ToDos” where you can list the calls you need to make, insurance claims you need to file, and specialists with whom you need to follow up. There are apps for all this stuff, and I find reminders are good, but it’s easier to hand a notebook to another caregiver, and there are so many pieces of paper you’ll have to file somewhere anyway. Might as well go analog. Also…it’s highly likely your kid will be watching something on your phone, or your battery will die, just when you need it. 
  • You can dedicate a page to each specialist if you’re particularly organized. When something comes up that needs to be passed down to the next specialist in the chain, you can note it on their page and check that specialist’s page when you have that appointment. It’s easy to forget what you wanted to ask when you’re on the spot. 
  • Note questions you have on the way home (because you always forget to ask something).
  • Keep a master calendar of key “events” that have happened over the last 6 months or so. This can be consulted “at-a-glance” when you need to answer questions about dates for things like changes in dosage, weight and height notations, scans and results, medication cycles, ER visits, or past specialist appointment dates.  

If that all feels like a lot…it is. Shuffling the deck and keeping track of the cards you collect is overwhelming. Most of the time, it’ll feel like you haven’t got a clue what you’re doing and often it’ll feel like you’re doing everything wrong. You know…it’ll feel like parenthood.

We didn’t know that we were signing up for all these clubs. We didn’t read the fine print and we don’t have a binder big enough to hold all the cards we’ve collected over the last three years, let alone the cards we’ll collect over the next, like 20, as our daughter grows and her condition changes. 

But the experience points we’re gaining are off the charts. We can handle a hit without taking too much damage. Our kids have both earned battle scars that hurt but we know those experiences will make them stronger and more empathetic in the future. 

Whatever deck you’re collecting, I hope it’s a limited edition. I hope you get some shiney special edition cards that power you up and I hope you make smart trades and assemble the best line up you can to get through it all.   

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My “big-ass” Tattoo

Posted on by katyleask

I have a tattoo that stretches the length of my forearm, from wrist to elbow. It is, according to some (including my mother and many of her peers), a “big-ass” tattoo. It is not subtle or hidden. It is intentionally out front and on display. My tattoo has purpose and it is, in my opinion, sized appropriately to its task.

My mother has pointed out that it is actually three tattoos. She’s not wrong, but she’s also not right. 

There are three parts, but it tells one story. Each of its three circles represents an aspect of our family’s experience with a devastating and transformative diagnosis that will forever colour the way we see and engage with the world. There are also three levels. The first level sticks out below my sleeve and the third level sits up near my elbow. Moving through these levels helps me manifest the parts of myself that I’ve built up over the last three years to become the parent and the person I need to be in order to navigate the day-to-day in which we find ourselves. It can be joyful and it is full of love, but it is not carefree. That is simply our reality. The shit will hit the fan, again and again, and each time it does, I have three reminders very much at hand to help me put on my game face and get through it.   

It sounds a bit fluffy when I say it out loud, and for some people, it would be bullshit. But there is power in imagery and if there’s anything I’ve learned, it’s how individually we all deal with trauma and fear and stress. My “big-ass” tattoo, for what it’s worth, helps me. And considering where we are in the world and what we’ve all been working through in the last year of upheaval and adjustment to extreme circumstances, I figured it wouldn’t hurt to share. I am not endorsing body modification as a solution to life’s troubles, but I am endorsing doing what you need to do in order to ground yourself when things are spinning out of control. That’s going to look different for everyone. For me, it looks like this.

black line tattoo of an owl, a treehouse and a toy rabbit
Tattoo by Sherlane White of Sleepy Bones Tattoo

I got my tattoo a little over a year ago, a couple of years after my two-year-old daughter’s diagnosis with a massive brain tumour. It was (and remains) nonmalignant, but the devastation it wrought on her and our family can’t be underestimated. What started as a lazy eye turned into a lazy eye, fatigue, and eventually a bit of a wobble. Then it evolved to include a slight hand tremor, which lead to a proper diagnosis and admission for major brain surgery. The surgery was generally successful in terms of tumour reduction but it came with a side order of stroke and resulting hemiplegia (paralysis on one side of the body). Issues with intercranial pressure meant the installation of a shunt to drain CSF fluid, and that came with its own lifelong risks. She lost vision in one eye. Then came rehab and chemotherapy and shunt failures. Every step along the way has felt too extreme to be real, like someone else’s story. But it’s all been very real and it has, for good or for ill, become the dominant narrative in the story of our family.

Over the past year, this whole sci-fi existence of ours, where up is down, left is right, and the world is scary and uncertain, has become a lot more relatable. It’s taken a global pandemic, but there has been an exponential increase in the number of people who understand that the highly unlikely is still very much possible. We’ve all had to find a way to wrap our heads around historical levels of disruption and fear.

It’s not, unfortunately, our first rodeo. We are used to safety protocols, isolation, and big, scary questions. We don’t like the conditions or constraints and we’ve had to follow all of it more strictly than most, but we’ve found ways to just fucking do it. We cope. We get through stuff. We’ve learned to effectively hold it together (more or less), for as long as necessary, when things get hard. They’ve been hard for a while.

I find it helps to take control of the narrative and to break it into pieces you can stomach. It helps me put our experience into perspective when I get lost in a thought spiral. I tell myself a story about the battles we have won. I acknowledge the mistakes we have made. I try to balance guilt and regret with the insight and power and skills we’ve earned along the way. I don’t think storytelling is a revolutionary technique, but lessons learned through experience can be hard to remember in a fog of fear and anxiety, so I paid someone a few hundred bucks to stab me in the arm with them for a couple hours…y’know…to make them stick.

I can tell my kids the story as well, so they don’t forget what we have, what we’ve gained by living through it, and the part they play in writing future chapters.  This story isn’t wrapping up any time soon, so we all have to learn its lessons. 

My “big-ass” tattoo (or three moderate-ass tattoos) shows three views of the same tree. No surprise…the tree represents our family. It’s a family tree. I didn’t play coy with the symbolism there.   

At its base, nestled in its roots, sits a floppy, well-worn stuffed bunny with exceptionally high pants. It’s the bunny my daughter held as she sucked her thumb in toddlerhood, before we knew about the tumour. It’s the companion she quietly cradled in the ICU, head shaved and swollen and raw before her speech came back. We dug it out of hospital sheets and cuddled both of them in a mess of wires and tubes as we stared into the face of a thousand unknowns. It’s the bunny she sleeps with now, three years later, tucked into a Frozen 2 duvet.

The bunny at the base of the tree is there to say (get ready to groan) that somebunny loves you. Somebunny will always love you, and will be there for you, from the roots up. This kind of love is a grounded thing, a practical thing. We can hold onto it when gravity reverses itself and just grow. Being there and loving deeply can bring a kid back from the dark.  Being there and loving each other can keep your roots in place when you want to run away because it’s all too much. And also remember that your roots tangle with the roots of others. They help to make the ground more stable for everyone.  When you hold on, others can hold on as well.  Be there and be somebunny for somebody.  Start with that.  Lesson #1.

Moving up a level on the tree, you’ll find a scene from my childhood. I was pretty fortunate to have a legit playhouse in actual trees that my dad built from scraps of wood and miscellaneous leftovers from home renos and repairs. The tree house on my arm, snugged into the crook of the tree, is where Lesson #2 lives.

In the beginning, it felt like our daughter was lost. We didn’t know for a while if she would come back to herself. We  were lost too; living in hospitals, divided from each other and the world. The way home felt epic and elusive. We didn’t know when we’d get back, what it would be like, or how we’d get there. We’d spent the first two years of her life navigating the logistics of severe food allergies but managing the practicalities of medical vulnerability and physical disability was completely new and overwhelming.

Our house needed to change. Our daughter’s hemiparesis after her stroke made stairs impassible mountains. Getting in or out of the house required a team. Everyday trips around the community required equipment (walkers and wheelchairs) and planning. Being almost anywhere we’d always been, took work. It was a ladder we had to climb every day and everything involved a lot of problem-solving. It was hard to get back to a sense of “being home” after four and a half months in a highly medicalized world and it was hard to incorporate all the new challenges we were facing into the way we lived. But we did it. 

Our home, hard-fought to regain, became the safest, easiest place to be…even if it was a struggle to get there.

On my tattoo, our home is the treehouse, atop a cobbled together ladder of rough hammered planks, in the shelter of leafy branches. It’s a good place. It’s a climb, but there will always be love and strength there, along with a healthy dose of problem-solving. That’s Lesson #2.

At the top of my tattoo and close to my heart, there’s an owl. My son, who never asked to play second fiddle to the demands and damage of a mass of errant cells in his sister’s brain, likes owls. His reasons are his own to describe, but for me, there’s a connection with wisdom, an awareness of life in the dark, and a little ferocity. He was only five when he sat in the ER next to his sister. He had to grow up quickly as we all grew into new roles and the stress level in our lives was cranked up to eleven. He copes with change and uncertainty on a daily basis and generally tolerates the fact that there are times when her immediate needs might trump his own. He appreciates the cautions and protocols better than many adults and worries for her, even though we try to help him understand that’s not his job. He is an eight-year-old who puts on his game face at 2am, when his sister has a shunt failure, to gather the iPad and help get her wheelchair out to the car while we clean up vomit and grab the emergency bag from the front hall closet.

He is not a parent, but he has chosen his role on the team and he plays it well. In addition to his alternating roles of entertainer and brotherly tormentor, he’s a therapeutic cheerleader and amateur physiotherapist. He learned to swallow pills so he can take his vitamin D the same way she takes her thyroid medication. He gathered his own friends on the playground to play a version of tag that accommodated her speed when kids her age left her alone in the dust.

Our son is not perfect and he is justifiably angry and frustrated when attention is divided or a fuss is being made about his sister and he’s being pushed to the background. But he’s as wise and understanding and expressive about his feelings and needs as we have any right to expect from an eight-year-old. He doesn’t take it out on her and he doesn’t hold it against her. Generally, his frustration is directed at the grown ups that should know better (including us) or at the people who need a reminder that he is vulnerable and important too. That’s a hard thing to do. That is badass. Owls are badass. We all need a wise, thoughtfully fierce creature in our lives. The owl lives in the tree of my tattoo to remind me to nurture that strength in him, to nurture him in general, to nurture those traits in my daughter as well, and to be thoughtfully fierce myself when I need to be. We are all going to have to look out for each other and advocate for each other because a mass of errant cells are working to ensure our paths in life will not be straightforward.  That’s the third lesson. 

As I said, it doesn’t take a genius to figure this stuff out. Some of it should be pretty common sense, but the universe is a wild place. We can’t always predict where we’ll end up or the parts we’ll be called upon to play. It’s important to know who you are and how you want to exist as the plot unfolds around you. There’s only so much you can actually control. 

  • Be there with real, practical love that others can hold onto. 
  • Make your home a place of love and safety, in a form that makes sense for you. 
  • Be wise and fierce in the dark. Watch out for each other. 

These are the lessons of the story I have written in literal blood and ink on my forearm. I’ve written them to remind me who I need to be; for myself, for my partner, and particularly for my kids. My big-ass tattoo exists to remind me of the part I play in moving our story forward and it reminds me that I am uniquely qualified to play it. I have helped to love a child back from the dark, I have helped to build a family that can weather some serious fucking storms, and I have allowed myself to break down and reassemble in a thousand different ways to do it. I wouldn’t choose our story and I wouldn’t wish a lot of it on my worst enemy, but I’m proud of what we’ve all accomplished and I’m proud to wear our victories on my arm. When I see those little bunny feet sticking out the bottom of my sleeve, I can breathe for a moment and remember that we can do great things in little, tiny steps. I can trace my fingers around the outline of our home to remember the innovation and creative thinking it has taken to adapt. And I can bring my wrist to my shoulder to protect and shield those I watch over. 

It’s just a tattoo and I’m just another former 90s teen with some “ink.” But we all need something to make the hard stuff make sense. Whoever you are, and wherever you are in your narrative, I wish you valuable lessons and a way to make them stick. 

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HGTV and Me

Posted on by katyleask

Today I woke up thinking about brain surgery. It’s not a normal thing to contemplate when you first wake up on a grey, February morning (unless you’re a neurosurgeon), but today I did.  I actually woke up to the sound of grinding, revving engines and sewer work in the street outside my bedroom window. It was close to 6am, definitely before 7am, and the sound had worked its way into my dream. Something about waiting and being in a waiting room. We’re really familiar with waiting rooms. We spend a lot of time in them. The sound had worked its way into the dream as an annoyance within the dream itself. Something was supposed to be happening in that waiting room and there was this irritating whirring in the background. Even in the dream I was like “What the hell is that? Shut that thing off. We’ve got things to stress about here.” When I opened my eyes, pissed off in the dark, the feeling of the waiting room lingered…the pale yellow walls, the harsh fluorescent lights, the smell of worn chairs with a decade of old spilled coffee worked into their fibres, mixed with the smell of industrial strength floor cleaner. I thought about calculating the number of hours we’ve spent in this particular waiting room, which led me to think about the longest “session” we’ve had in this particular waiting room. I thought about my daughter’s brain surgery. The first one. It was special.

Not surprisingly, brain surgery takes a long time. Recovery takes a long time. Everything takes a long time. And that means waiting. Lots of waiting.  As a parent, it can be difficult (to say the least) to figure out what to do while you are waiting. It’s not like you’re killing time at swimming lessons. You clearly have a lot on your mind, and need distraction, but it’s also difficult to focus on anything. You’re obviously in a pretty delicate state, so what you focus on is also important. Because we had a few days notice that our wait time was approaching, friends and family gifted us with books and magazines and crossword puzzles and snacks. We had our daughter’s bag packed for the hospital and we had our own bag of tricks for the wait. It was, after all, a full workday (predicted 8-10 hours) of fear and rage and helplessness. I wish that was hyperbole.

So, what do you do while a team of 10(ish) very qualified professionals open up and tinker with your kids’ control system?

You sit in a waiting room with other parents and family members of kids who are also under the knife. Everyone is anxious, but not everyone shows it.

Some of the people beside you are tense and tearful because their very little ones are in for a five-minute surgery to put in ear tubes. This fear is valid. Anesthetic is always kind of scary and surgery is surgery, despite the calm and breezy manner of the medical professionals involved in same day procedures. We’d been these parents twice already. In fact, the day our daughter’s more serious symptoms started to manifest, her father had been sat in this same waiting room for her older brother’s second set of ear tubes. That day, I’d stayed home with our daughter, because she’d vomited in the early hours of the morning and couldn’t go to daycare.

Some parents are there for their teenage child’s appendix removal. Or maybe their budding jock is getting a torn ligament repaired after a sports injury.

Some people, like us, are there because their kid could die and this surgery is the thing that will hopefully save them. Everyone is in the same waiting room. We didn’t realize this when we were in for our son’s ear tubes. You assume that the “big stuff” gets its own waiting room. Incorrect.

It’s another one of life’s lessons in empathy. Look around the room, any room, and someone there is likely to be going through a field of shit.

Whatever their reason for being there, most people are on their phones. My husband and I, for example, were trying to read on ours.

I was in a book club (that would prove to be an unbelievably supportive and important presence in my life throughout this period, and in all the days since). We were reading, for the first time in a cohort of contemporary and historical fiction fans, a dystopian sci-fi novel. This is generally my escapist bread and butter. It was gloomy and slow, and I didn’t really like it, but I’d suggested it to the group and it was something to focus on that had nothing to do with our situation. Reading kept us from crying. Word puzzles and Sudoko didn’t work so well. They didn’t divert enough thought power to really phase out of our situation.

When I wasn’t reading, I was drawing. Nothing concrete, nothing focused. I was doodling lines. Lots and lots of long, fluid lines, in different colours that flowed and overlapped and merged together. I drew until my hand cramped, took a break to read a bit or stretch my legs, then I’d draw some more. I kept the same drawing in progress over the next week or so as well, as time allowed. It’s not a good or interesting drawing. I’m self-taught so I’ve got no technique whatsoever and my skill set is limited, but drawing is the closest I get to a meditative state. I know I passed a few hours that day marking the page, thinking that each line drawn was a connection being made, being saved in my daughter’s brain.  I’m no neurologist (I use this line more frequently than you’d think), but I know that the brain is capable of rebuilding and rerouting, even when it has been devastated. As the pen tip scraped across the paper, as I retraced those lines to darken or thicken them or to change their direction, I thought of the pathways sending signals back and forth in her little brain and counted each line drawn as a new highway constructed. It makes no logical sense whatsoever, but it made me feel like I was part of that team, trying to save as much as they could of who she was and what she would be capable of after the surgery. It made me think less and gave me something to do. The other part of my brain, that needed more diversion, listened to and watched the TV screens mounted in the waiting room.

There’s something consistent about TV screens in hospital waiting rooms that you don’t notice until you spend a lot of time in them. There is always at least one screen playing the Home and Garden channel.  It is an ever-present and innocuous feature of these kinds of waiting areas.

Don’t get me wrong, I’ve always loved HGTV. It started in the early 2000s with shows where neighbours redecorated each other’s homes. In the years that followed, it became a source of inspiration and heated debate, made more interesting because my partner and friends had our own homes with updates and repairs and renovations to be dealt with. Watching the shows fueled my homeowner dreams and desires and admittedly, from time-to-time, indulged the less savoury, more judgey and envious aspects of my personality. On business trips, I’d arrive at my hotel after a long conference day, kick off my shoes and binge watch house flipping renovation shows, tsking and shaking my head at obnoxious colours and sighing over luxury tubs I felt I deserved more than the home owners I saw on the screen.

HGTV is still a land I’m happy to visit, but it means something different now.  HGTV, like certain hues of green, or blue, or peach (the studied, soothing colours of medical institutions) lets me know that I’ll be settling into a stiff vinyl chair with a paper cup coffee for at least an hour. It tells me I’ve got some time to kill while my kid sleeps on industrial cotton-poly sheets, before Peppa Pig or the Wiggles go back on. It says we’re back in hospital and that we’re going to be there for a while.

I’ve given more thought than a reasonable individual should, to why HGTV is so popular among the demographics that frequent medical institutions.  Here’s what I’ve come up with.

  1. It’s not Treehouse, or Nickelodeon, or any other kid-focused cable channel that runs the same 8-10 syndicated shows on repeat, day or night. In a children’s hospital, you WILL be watching day and night and your kid WILL want the t.v. on all the time and with all the other shit they’re going through, it’s not a battle you’re willing to fight. As soon as the opportunity presents itself NOT to watch another episode of Paw Patrol, you need something you can rely on. Hospital television set-ups do not lend themselves to channel surfing, and in your depleted state, almost any decision, even what to watch, can be hard to make. In short, it’s not a kid’s show, and it’s a decision made for you that you don’t hate.
  2. It’s nice to think of homes. Not necessarily YOUR home, because you may be a long way from it (geographically or metaphorically), but home, as a concept, is comforting and aspirational. It’s nice to think, “Maybe I’ll repaint the trim when we get home. You know, freshen things up after all this shit.” It’s nice to think of home as a place you will get back to and that you have some control over. Homesickness is a thing during long stays in an institution. Home is, at once, an idea, a destination, and a solution.
  3. Home and garden shows are relatively “safe.” They are good shows for conversation or diversion, without lighting any emotional or political fires. While presenters and participants are occasionally obnoxious, home shows don’t generally present anything controversial. The visuals distract from the hosts’ inane banter and the topics can usually be judged subjectively from a point of “personal taste” over political leaning.  House hunting and sales shows aren’t as rowdy or riveting as sporting events, though sports highlights are probably next in line for acceptable hospital programming. The News is the last thing you want to watch when your life is already scary and depressing and overwhelming, and sitcoms piss you off because, who gives an actual fuck if whichever “Ross and Rachel”-type couple ever get together…your child is lying there full of drugs and tubes and needles.

In HGTV land, that walnut-stained chevron pattern looks stunning in that kitchen. That cream sofa looks great, but it’ll last a few months, tops, with a great Dane in the house. Holy crap, that ridiculous square footage is cheap in Austin, Texas. Anywhere parents assemble in a pediatric hospital will have a home improvement, or flipping, or house-hunting show on. Strangers will strike up conversation about DIY home improvement, or sit quietly on their phones, eating greasy hospital muffins while it plays in the background.  Everything else in your head is heavy and hard, but on the Home and Garden channel, none of it really matters and you know exactly what you’re going to get. Comfort in a paint can. Diversion with shrubbery. As good as it gets, given the situation.

 

 

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Scans are the worst.

Posted on by katyleask

Scans are the worst. This is not surprising. It’s pretty common knowledge to people in the brain tumour world, and I’m sure its pretty familiar in other medical circles as well. There’s even a catchy little term for it: scanxiety. It sounds cute and clever, and it ties a complicated set of emotions and triggers and reactions up in a sweet little bow.

It’s shorthand that those “in-the-know” can drop into conversation and that others “in-the-know” can recognize as a need for a nod and a sigh and hug or a “fuck you universe” as fits the speaker and their relationship.

But it’s not really the scan that’s bad. When done regularly, say every three months, the mechanics of the scan become routine. This comes from the perspective of a caregiver and parent, but I’m sure I can’t be alone in the way I feel about it.

The routine goes like this:

Our daughter’s scans, are booked months in advance and several at once. We seem to get notifications in a bundle of three or four individual letters received in the mail, all within a week or so of each other. Each form letter includes the date, the nature of the scan (an MRI, requiring contrast and full sedation), the time, and the procedure to prepare (aka: starve and clean) the patient. There are instructions to call a week ahead to confirm you’ll be showing up, which we always do, and a prompt not to miss the call or you’ll lose your place and have to rebook, which we never do. We put three dates in our calendars: the date and time of the scan, the date a week before to call and confirm, and the date that marks the Wednesday after the scan, when we’ll make sure both parents are clear to attend our weekly chemo session. This is where the neurooncologist will review the team’s interpretation of the results.

The week before the scan, we call the MRI department or they call us and we review the preparation necessary to put our four-year-old under sedation. I’m sure a lot of grownups would freak the fuck out in an MRI machine too, but for a little one, a knockout is a must if you’re going to get a clear picture. It’s loud and it looks like an alien spaceship in there. The scan takes 45 minutes to an hour or more and you have to hold perfectly still.

Sidenote: We’ve had a few 5-minute “short” MRIs where she hasn’t been sedated; two where she writhed and screamed and kicked in restraints as I held her hands, my own body hanging half out of the machine, and one where she merely whimpered and watched the Minions movie on very 1970s sci-fi looking goggles. None of them felt “short.”

On the day of the scan, we show up in the imaging department and are greeted warmly by the desk clerk. She knows us and knows our daughter’s name without looking at the card I hand her. We have a photocopy of the medical history form most people have to fill out. It’s easier and faster to just white out and change the date, and her height and weight. There’s a lot of history.

When we’re moved through to the prep room, our daughter changes into the hospital-standard flannel pyjama top (puppies or stripes) and settles in with her iPad to wait. Usually, her port (semi-permanent main line access to her blood system) has already been accessed because we’ve arrived early and done her chemo treatment before the scan. The nurse comes in and confirms her history, her allergies, and has us check the labels on all the forms. Our daughter gets her vitals done. “Leg hug please. She doesn’t like her blood pressure taken on her arm.” We catch up with the Child Life specialist, who comments on how our daughter has grown and finds out which sparkly toy she wants to look at while the sleepy medicine gets to work. We see the MRI tech, who explains the procedure for the images to be taken (which we know, but they have to review anyway) and the anesthesiologist, who explains the medical procedure and recovery process (which we also know, but they have to review anyway).

One parent empties their pockets of change and removes any jewelry and the other parent makes small talk with the nurse or the Child Life specialist. There’s the constant “eurm eurm eurm” of the MRI machine in the background through every conversation as the previous patient wraps up their imaging. They’ll be resting and recovering from sedation behind a canvas divider panel as we go in.

The empty pocket parent carries the patient into the alien-looking room where several Avengers have assembled to put our daughter to sleep and run her through the scan. The Child Life specialist swizzles sparkly sticks and our daughter pushes the button on a wand with an LED display that flashes colours and illuminates her face before her eyes roll back and she’s settled onto the bed. Empty pocket parent gives her a kiss and we meet in the antechamber of the spaceship to collect our things.

We hold hands or one of us pats the other on the shoulder as we walk through the hospital for the least romantic lunch date ever in a cafeteria filled with students and hospital staff. I get poutine. My partner gets a burrito. We plan the week and chit chat as we eat, then head upstairs to the Ronald McDonald room for free coffee (the “perks” of being a hospital regular) and some HGTV.

When we return, our daughter will be the one behind the canvas divider and we’ll wait another half hour or so for her to wake up cranky and starving. She’ll be kind of drunk for the next 24 hours. Loopy and unsteady without realizing it.

This is the routine; the easy part. It’s steps to follow, forms to fill out, a procedure to complete. Tick one box, then the next, and you’ll get through it and go home.

The hard part is the wait for the results. It’s a week or two of supressing fearful, invasive thoughts about what the scan might have to say. You’re mostly ok, but the poison bubbles up when you’re tired or when someone cuts you off in the grocery line and suddenly you’re ready to go to fisticuffs.

In the time between the scan and results, you scrutinize every wobble and stumble, every misplaced word, every mood swing and stand off (of which there are many with a four-year-old), looking for signs of what might come from the data collected. Your gut wrenches itself into knots, you don’t sleep so you drink too much coffee, you yell at both kids more than you should and you make mountains of molehills that leave you crying in the pantry. You just have this feeling that things aren’t ok.

And sometimes they are…ok. But sometimes they aren’t, and you’ve been through this so many times in the last year and a half that there is no firm ground to walk on. You know, quite legitimately, that a sinkhole sits below the playground, you just don’t know where. You also, rationally, know that worrying about it changes nothing. It doesn’t prepare you for anything. If the ground is going to fall out from under you, worrying now is not going to give you anything to hold onto. If things are going to be shitty, well, they’re going to be shitty. There’s no glory in this kind of “I told you so.” but you worry anyway, because you cannot help yourself. You have been conditioned by experience to expect the worst.

And it IS the worst, even when it isn’t, because you have to do it again. And again. And again. Every three months. It’s Ground Hog Day without Bill Murray. It’s the Day after Tomorrow without Emily Blunt and Tom Cruise. In those movies, they developed skills, there was a way out. The loop, eventually, was completed. But we don’t get Andy McDowell in the end. We’re not developing killer biceps and learning to exploit the alien’s weakness. We’re learning lots of lessons, oodles of lessons, whole heaps of personal growth, but it doesn’t break the cycle. And for our daughter, the cycle will last her entire life. It may stretch out to every six months, or every year, or maybe every few years, but the tick tock of the scanxiety clock will set the pace of her metronome unless science finds a way to silence it.

We are thankful that the technology exists to monitor her in this way, and that we have access and funding to support it. We hope desperately that the chemicals and procedures used to track and control her tumour’s growth don’t cause her additional harm in the long run. I don’t know how we learn to manage the fear and stress that it causes us and I don’t know how to teach her to manage it as she grows and becomes aware of the constant “eurm eurm eurm” in the background.

On the night before results, after a cry in the pantry, and a half dozen of my son’s Halloween treats, the best I can do is curse. Fuck this. Scans are the worst.

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The Words We Choose, Uncategorized

At least…

Posted on by katyleask

“At least…” is a slippery little sentence starter. It’s not so devious in the middle of a sentence when it’s used to talk about a tangible quantity of something, such as: “I’ve eaten at least half of that Costco-sized bag of potato chips.” But it’s also one of those qualitative expressions that, when worked in right at the beginning, can come across a few different ways.

It’s often used conversationally with the intention of expressing a degree of gratitude or to acknowledge some degree of good fortune. In this usage, it’s often delivered with a sigh and a shrug: “At least you’ve got your health.”

It can also be used with a smirk and a raised eyebrow to throw some ruthless shade. “At least I’VE got a job. At least SHE can get her ass out of bed to walk the dog in the morning.”

We’ve often heard it used to compare our situation with those of other kids and families in the medical world.  In general, people are trying to make us feel better.  “At least it’s not malignant. At least you’re out of the hospital. At least she’ll be able to go to school.” It’s all definitely on the gratitude side of things. We have, objectively, been in some pretty dark places since diagnosis.  It is good to not always be there. We are grateful for progress and healing and all the love and support that has gotten us where we are.  We like to acknowledge this.

But (talk about a loaded sentence starter…) I have chosen to omit “at least…” from my vocabulary. (As a sentence starter…I can still brag about eating at least a half a bag of chips.)

As a next step and in specific reference to situations like ours, I’m going to go ahead and ask others to maybe consider doing the same.  Here’s why.  It’s not nice or helpful to shit on someone else’s situation to make yourself or even someone you love, feel better.

Here’s the thing I’ve learned while existing in some pretty dark places. When you’re in one of those dark places, you feel alone. You feel like the world is falling apart and unfair and you are angry and sad almost all of the time.  You inevitably run into other people who are in their own dark places.  Sometimes their dark places overlap with yours and sometimes they look and feel very different, but the common thread is that none of them are good. They are all dark.  No one wants to be there. No one chooses to be there.

Over the last couple years, we’ve met and gotten to know people and situations in several different hospital wards, from the Pediatric Intensive Care Unit (PICU) to oncology, to brain injury and rehabilitation. I can say, with absolute confidence, that no two experiences have been alike, but they are all shitty. I call them (not originally) “shit sandwiches.”  It’s what they serve in the dark places. Exclusively.

I can only speak to our personal experience in a children’s hospital and dealing with our own child’s condition, but I feel this applies to a lot of different situations. Bear with me.

At some point, everyone gets a “shit sandwich” to eat. Some people get several and some people are forced to eat them on and off throughout their whole lives. Our shit sandwich came with a pediatric brain tumour and a stroke and severe food allergies to work into the mix. It’s a meaty patty for a shit sandwich and it’s hard to swallow. However, I have to acknowledge that our shit sandwich also came with some fancy toppings. It came with financial stability and accessible health care. It came with family and community support and compassionate places of employment. It came with a side of friendly and communicative health care practitioners, and we got to add our own special sauces of education and past life experience that helped us wrap our heads around our situation as it was happening. Our shit sandwich is BIG, but there a lot of toppings on there that make it digestible.

In the dark places we sometimes frequent, we meet people who might have subjectively less meat on their sandwich; a smaller tumour, a concussion, or a single, less complex diagnosis. But not everyone has the fancy fixings to help each bite go down.

They might live hours from family or friends for treatment, or their child’s losses may be more likely to be permanent. Their condition might be more treatable, but more likely to return. Missing work might mean losing a job, with the resulting financial turmoil, as a side to the terror and anguish of watching their child fight to live and function.

It’s tempting to try and compare shit sandwiches…since we’re all eating them at the same table.  “At least…” is an easy way to do that. “At least our daughter got her speech back. At least she has vision in one eye. At least she can go to school. At least she’s happy and doesn’t remember life before all this.”

It’s a good thing to be thankful and it’s even better to celebrate the wins, but “at least…” pities and sneers at the misfortunes of someone else because it is always a comparison with something that “could be worse.” My life sucks, but yours sucks more. It casts shade on someone else who is already sitting in the dark place, eating a shit sandwich. I don’t want anyone using my daughter as their shitty baseline for comparison (“At least my child can use both their arms. At least my kid doesn’t have a brain tumour.”), so why would I use someone else as that baseline for comparison myself?

There is no sympathy, no love, and no support in “At least…” as a sentence starter. It is inherently judgemental and comparative, and there are certain things in life that you just cannot compare, and that you should not judge.  If your goal IS to be judgey…then have at ‘er, but the people chowing down in the dark place already feel all manner of judged.

You may find yourself with an unpleasant meal in the dark place at some point in your life, and you will feel empathy for those around you, because you can feel their pain and their fear, even if it isn’t the same as your own.

Your “At least…” may be some else’s reality, or it may be their reality in the future. They don’t need to be reminded how bad it tastes. Even if they can’t hear you say it, it becomes an undercurrent in the culture around them. It’s pretty obvious when something in your life is someone else’s worst-case scenario, and you never know when you might be served the same dish, or one that’s even more unpalatable.

The day before my daughter’s diagnosis, I stood in my parents’ kitchen, spewing off my own “at least…” about her food allergies. “At least it’s a manageable condition. At least schools and other parents acknowledge it and make accommodations. At least it isn’t cancer…it could be worse.”

“At least…” tempts fate in the most terrible way. If you’re the type to knock on wood or covertly toss salt over your shoulder, stay the fuck away from “At least…” Statistically speaking, we all end up sick, or hurt, or with some kind of disability at some point in our lives. Don’t unnecessarily put yourself (or those you love) in the pocket of hubris. You are not above or beyond any of it.

If you want to say something positive to someone who is dining on shit sandwiches in a dark place, just say it. Be real. Be genuine. Be in the present.

“You have a strong family.”

“She is doing well.”

“I can see his progress.”

“I’m proud of you.”

“It’s so good to see you.”

“This fucking sucks, but you’re doing everything you can.”

That’s the hot sauce and the fizzy drink to help it all go down. People in the dark place are taking things moment by moment, day by day. Don’t bring the past or the possible future to the table, because diners in the dark place know that there are no guarantees and no gains that can’t, potentially, be lost. It’s exhausting to always try to be positive and looking back or too far ahead can be overwhelming. We’ve got our hands and plates full already. Just help us get the current serving down.

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Uncategorized

Perks of the Job

Posted on by katyleask

There are a lot of shit moments in my new world as a caregiver. My career, as it was, is on hold. There are trying times doing emotional, psychological battle with a three-and-a-half-year-old. There are long, boring waits in medical centres and rehab facilities and drawn out, anxiety-inducing waits for test results at home while we’re trying to just get on with our lives. There is always an undercurrent of fear and frustration and anger at our family’s situation and what we all have to give up and work around in the reality in which we now, and forever, find ourselves.

But, and it’s a big but (cue the immature giggles at me saying “big butt”…I spend a lot of time with kids), there is also a new pace of life and a flavour of love that we would not have if our world had not been completely shaken up this time last year.

I’m going to be self-centred and zoom into my caregiver role in particular here. If this role had not been forced on me, I would be spending this afternoon fretting over a deadline, bitching about the client that was pushing for twice what they paid for, and then frantically packing my laptop into my bag, forgetting the critical power cord in the office as I crammed myself into my car to fight highway traffic to collect the kids from daycare and school. We’d jam food in their faces before rushing them to extra-curriculars, snipping at everyone along the way, sandwiching homework and home reading in just before bed to do it all again the next day.

While that is all relatively normal, and it’s not bad, it’s also a life that feels less relevant than it used to. Because someone needs to be here, and available, managing appointments, and therapy and chemo, someone is. That someone is me and after a year, that old life feels pretty distant. I’m home and the days have to be flexible with wiggle room and room to rest, so the rat race pace is less intense. Mornings and afterschool routines are more relaxed. We schedule less and roll with it more.

My work as a caregiver, and it is work, expands to fill all the time I can give it, but there are also moments and tasks that just have to be quiet and filled with something else. I may be on call all night, but I have an hour here and there, when my daughter is with a grandparent, or watching a movie waiting for chemo, when I can just sit and read. My day-to-day life is not spent at the computer, or on conference calls, so I enjoy sitting and writing and I relish actually talking to people again.

I’m always stressed and anxious, but I also have a therapist prescribing gym time and painting to preserve my mental health. Self care is no longer a luxury, but a requirement. If my body fails, I can’t do my job, so I’ve made getting in shape a priority for the first time in my life and am sticking to it. I can’t wrap my head around an actual piece of art, but I’m picking away at painting an old doll house because I need something, anything, to do that is not involved with my daughter’s care and medical needs or family administration.

I am not going to deny that our situation, while challenging, is a hell of a lot easier in all this than it could be. Another day, I’ll dig myself into the layers of privilege we have in dealing with this whole mess that make it possible for me to not work at anything but the care of my daughter right now. (Short version: Holy shit, we are lucky we live where we do and were born into a place of comfort and education.)

I’ve spent more time with my daughter in the last year than I spent with her in her first two years of life. My relationship with my partner and my son are deeper and more grounded than I ever thought possible, because we’ve had to build different connections and ways of communicating. We spend our weekends and time together so much differently than we did before because that’s the way it has to be. We don’t try to pack too much into that time. Our situation has slowed us down, and there are definite benefits to that.

As a caregiver, as any caregiver can attest, your time is not really your own. You’re never really off duty. You never really relax. You are the day shift, the night shift and the emergency room shift. You are the repository for all the important information and the shield that the shit hits on its way to the fan. I don’t drink any more because I don’t want to be half in the bag in the ER trying to coax my daughter through a CAT scan. My partner is absolutely willing and capable of doing this, but it’s my job and I’m stubborn and I’ve got the front-line experience. I don’t want to drop the ball.

This is not a “poor me” situation (though of course I wouldn’t choose it). What I am trying to accept and fight for (with myself), now that we are out of crisis mode (hopefully for a while, ideally forever), is to still be myself in amongst all the other things. I’m trying to maintain the parts of me that I like and that I have control over.

I don’t know if my career will ever be what it was. It certainly won’t be what it could have been. My family life, another aspect of myself, will never be what a lot of other people have or what we thought it would be. I can’t control what has driven those changes.

What I can control, and am learning to relish, is the time and space between the caregiver tasks. I don’t feel so guilty about time to read, or to doodle, or to write escapist garbage, or to savour a coffee and the odd cigarette on a sunny day. I’m learning, slowly, to not ask for or apologise for that time. I’m trying to just take it. There aren’t a lot of perks to this job and unpaid interns bring home more bacon. Might as well make the most of it.

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Uncategorized

Game Face

Posted on by katyleask

In my youth…

Ugh, it pains me to say that: “In my youth…”

While still technically in my late thirties (very late thirties), the last year has aged me physically and emotionally well into late middle age.

When my daughter got sick, I chopped all my hair off into a pretty severe mom pixie. At the time, I was sleeping in vinyl pull-out chairs and washing it in restroom sinks. It’s a little longer these days, but I’ve added two significant grey patches that are now growing into full-on streaks. I’m doing this, in part because I’m lazy, but also because I feel I’ve earned the right to not give a fuck about dying my hair. One advantage of being a full time caregiver is that literally nobody cares what you look like, including, most of the time, me.

I am, however, trying really hard to be healthy…not fit, not sexy, just healthy. I’m terrified of not being well enough or strong enough to care for my daughter or to keep my family running. My partner is busting his ass keeping us afloat financially through all this. My job is to stay standing, and at this age basic maintenance requires a significant effort. I can’t go down…not for a cold, or a sprained ankle (which I generally do a couple times a year), or (God-forbid), anything more serious.

The long and short of it all is that I feel old. Older than I am. Wiser than I was. More cynical than ever, but also, in dark and serious ways, more capable than ever. And this brings me back to what I originally intended to talk about here.

In my youth, I played a lot of sports. I was never particularly good at any of them, but I was, generally speaking, athletic enough to make a team, committed enough to feel I should pull my weight, and cool-headed enough to get the job done in a pinch. I wasn’t particularly competitive (which is good, because I wasn’t particularly gifted) but I was consistent. I was a solid, second (sometimes third) string volleyball player who could reliably serve the ball over the net when the pressure was on, or at least get the ball to the setter so someone else could hammer it. Not a lot of power or glory in that, but I could pull it together if people were counting on me to stay level-headed. In life, I’ve not always been so level-headed. I’ve always had a temper and sometimes my anxiety and imagination get the best of me. But, I think I can say that when it has really mattered, I’ve generally been able to put on my Game Face and get shit done.

The last 10 months have involved a lot of Game Face; ludicrous amounts of it. With all the ups and downs of diagnosis, treatment, surprises and setbacks, I have developed Olympic-level Game Face. This isn’t to say I don’t fall apart. I do. A lot. With swears and tears and gnashing of teeth. But there are points everyday where that reaction simply will…not…do.

With the best of intentions and love, friends and family praise and wonder at “how you do it” or “how you’re holding it together.” But there really isn’t a choice.  (At least no one’s given me a choice. Is there a choice? Somebody better fucking tell me if there’s a choice.)

As parents in our kind of situation can attest, big kid pants are frequently the only option in the closet.

I remember, about a month into all this mess, a late night wander through the hospital halls. There was a hand written sign on the wall that read: “You never know how strong you are, until being strong is your only choice.” The internet tells me this is a Bob Marley quote. It was a literal sign, written by one of the teens in the hospital’s mental health program. (Want to talk about strength? Look there.)

Throughout our extended stay at the hospital, I’d see pencil crayon-coloured signs like this go up and down. One or two of them, including a rainbow “Never give up.” sign, posted by the elevator near the pediatric intensive care unit (PICU), is still roughly taped up nearly a year later.

Sometimes this kind of thing feels like a platitude and other times it feels like a giant pile of relevant shit. At that point, we were the ones on the ward that the nursing staff was, to quote one individual, “praying for.” It’s a secular hospital, so that wasn’t as encouraging as that individual probably meant it to be. It reinforced the feeling that our situation, from the perspective of someone who had seen a lot of bad, was definitely not good. There were a lot of questions. Things were as hard as they could be.

To me, that night, that sign (“You never know how strong you are, until being strong is your only choice.”) felt like at least one other person, beside my partner and I, had been in it, good and deep, and had waded through it simply because it was the thing to do. At least one other person (though I’d go on to meet many, many other families who were in shit situations like ours) had been in a place where Game Face was the only option. We were not warriors, or soldiers, or amazing parents…just people who had to get through because our kids needed us to.

The sign reminded me of the evening my partner called from the hospital to tell me about our daughter’s stroke. The brain surgery had gone as planned. Her brain, however, had reacted poorly to the shuffle. She’d lost all movement on her right side. She wasn’t talking. I’d just arrived home from a sleepless night in the PICU. It was my turn to recover a bit and connect with our six-year-old son. My phone rang and I stepped away from dinner with my in-laws to take the call in my office. My partner was understandably a mess. The medical team had walked in shortly after I left. The doctor hadn’t been particularly delicate about it. We didn’t know why it had happened or if she would recover any speech or functionality. There was nothing to do but wait. It was fucked, but there was nothing to be gained from going back to the hospital to stew and wait. My partner and I needed each other, but our son (at home) needed me too. We were trying to support him as much as we could. He’d already been passed around quite a bit.

I got off the phone, told my in-laws I needed to clean up and didn’t mention the call. My partner would fill them in later. In the shower, I shook. I didn’t cry because I couldn’t. If I’d started there would not have been an end to it. I got dressed, finished dinner, hung out with my son and put him to bed. Four straight hours of the most intense Game Face I’ve ever worn, followed by another two hours of silent ugly crying into a pillow.

A week later I took my son to baseball practice. I gave him a thumbs-up and a smile as he played. I watched the preschoolers playing soccer on the grass two fields over. Three weeks prior, our daughter had been running with that exact group. She’d shouted “Watch me coach!” with a hilarious Boston-y accent every time she kicked the ball. As far as I knew, she wouldn’t do that again. I ground my teeth and compulsively checked messages on my phone to hold it together. Game Face.

Countless times we’ve held our daughter writhing in our arms, doing anything to distract her as she’s poked and prodded, scanned and swabbed, knocked out and injected. Game Face. Game Face. Game Face.

Game Face is a skill. It has been learned terribly and traumatically, but I am proud of it. I am proud of what my partner and I have managed to endure. I wish I could put it on my resume. I also wish we could have learned it, as a couple, without all this.

It does not mean that we are not shaken.

It does not mean that we do not fall apart.

Those things have to happen, because the solid truth of Game Face is that you cannot wear it all the time. It can’t just become your face. Nobody wants that face.

You have to feel and to move through it at some point or the nasty manifests in an outburst, or a breakdown, or a break up, or an illness of your own. Game Face is not sustainable without consequence.

This means we have to tag team.

This means we have to find a balance between Game Face and allowing ourselves to actually feel things. You need a team for this kind of game; one person to hold it together until the other one has unloaded and recovered.

Game Face can be hard to shake and it’s important to notice when your partner is reaching their limit so you can put yours on. How do we do it? We talk a lot. We talk pretty candidly. We also shut the hell up sometimes. That’s important too. Especially when we’re deep into a procedure or when the demands of life outside our family’s medical experience need to be managed.

Strength, as a parent, is not something you just have. It’s not instinctual and it doesn’t come naturally. You learn it in the early days when your infant is screaming and you don’t know why. You learn it when your kid scrapes their knee and you manage to calm them down. You learn it when they go off to daycare or school and you discover that they are actual human beings that make mistakes and cause drama and you need to figure out how to help them navigate it. This year, we have learned strength in dark rooms with beeping monitors. We have learned strength in cold hallways and crowded exam rooms. We have learned strength in hospitals, rehab centres, and at home.

In my youth, I was proud of my Game Face. I still am, though the shift in context from high school volleyball to the extensive world of modern medicine and treatment is more than a little overwhelming. Truth be told, Game Face often teeters on the border of being a pretty unhealthy smoke and mirrors trick. But desperate times call for desperate measures, and I’ll use every tool I’ve got to get by, one week to the next. We haven’t had more than a couple months of calm between any particular upheaval, so for now, I’ll buy into the illusion that we can handle this. My expectation is that in time, it’ll translate into genuine, enduring resilience, because our particular situation isn’t getting any lighter. My hope, is that somehow, someone, somewhere, will give us a way to opt out of the need for Game Face altogether.

 

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Music Therapy

Music Therapy 2: A Better Son/Daughter by Rilo Kiley

Posted on by katyleask

So the beast in the background has been growing. Fuck you tumour!

The last month has been peppered with amazing and devastating moments that I’m too tired to go into right now, so I’m turning again to the music that seems to capture the great swings in motivation and insight that come with medical trauma and treatment and caregiving. To sum up…my daughter continues to flourish and laugh and improve on that great wave of rehab from her stroke, like only a three-year-old can.

However, the big bad in her brain has been growing and now we’re into 70 weeks (that’s right, 70 weeks of low dose, but still scary) chemo treatments to keep it at bay. This is the first round of this kind of treatment, and on the day-to-day, it’s not supposed to be terrible. But, it won’t be the last. The goal is to “only” do this three or four times over the next fifteen years, until her body, and hopefully the tumour stop growing. It sucks.

While I can’t say that this whole experience has made me any more optimistic than I’ve ever been (I don’t think anyone has ever described me this way.), it has hammered home, again and again, the need and benefits of channelling whatever I’m feeling into conscious empathy, and striving to not be a turd, even when I’m angry…which I am…a lot of the time. You never know what someone is going through, or has been through, or might have to face in the next 24 hours. Friends, family, professionals who work with you and your friends and family, people you don’t know, but cross your path, or get in your way, or treat you poorly, or plain old screw things up.

Shitting on someone, even when you have every right to feel miserable and angry and bitter, rarely, if ever, improves any situation. Even truly crap situations are a lot more bearable (for everyone) if you can rally to find the humour, or the love in it, or if you can simply put yourself in the position of your fellow great stinking pile dwellers. Some of them are also just trying to make it through the day, or have had a lot of “days” to get through.

Mindfulness is a term that gets bandied about, and I will disclose fully that I’m no expert and I don’t always achieve it. I may even be misunderstanding it (I’ve done no research on this.), but here is what it means to me now, and how it applies to a few things I’ve learned in the last 9 months.

I am mindful that everyone has their own situation they are dealing with. Everyone. The doctors, the janitorial staff, the nurses, the admin person who sounds irritated that I haven’t brought the right forms. The teacher, the daycare worker, that family member who always says the wrong thing at the wrong time. Everyone is trying to get through their day or life and has moments that are hard or easy and those moments may be interpreted differently than I would, but they’re still experiencing them. I’ve frequently been on the edge this year, and sometimes it’s the simplest caring, supportive, or even just civil gesture that has helped me step back.

So, I’m trying to be better. Trying to be aware. Trying to smile and be warm, even when I can’t be positive or nice.

I am mindful that I need to identify and express that sometimes I’m angry at everything. If I can say to my partner or child, “I’m having a really hard time right now. This isn’t about you. I’m trying to calm down and work it out.”, they usually get it and the snowball of emotion and snippiness can be stopped. This goes both ways. As a family, it’s not something we’ve consciously started doing, but it’s become an essential communication pattern for getting through some really hard times.

I am mindful of the ripple effect I have on those who deal with me, interactions big and small. I believe we receive better care because we try to treat the people in our medical world like they’re people. I believe my family is still standing because we’re all trying really hard to understand what each other is going through.

The trying part is key. It doesn’t always happen, but trying is the thing. Here’s where I loop back to the song. Give it a good listen.

A Better Son/Daughter by Rilo Kiley

It’s a bit of a confessional at times:

Sometimes in the morning
I am petrified and can’t move
Awake but cannot open my eyes

And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time

an anthem at times:

And sometimes when you’re on
You’re really fucking on
And your friends, they sing along
And they love you

but it’s the aspirational rally cry that really gets me:

But you’ll fight and you’ll make it through
You’ll fake it if you have to
And you’ll show up for work with a smile

And you’ll be better and you’ll be smarter
And more grown up and a better daughter
Or son, and a real good friend

And you’ll be awake, you’ll be alert
You’ll be positive, though it hurts
And you’ll laugh and embrace all your friends

You’ll be a real good listener
You’ll be honest, you’ll be brave
You’ll be handsome and you’ll be beautiful
You’ll be happy

Out of all the muck and the fear and the shake ups, I am trying to be a better person. I’m trying to learn and grow and do all the things you’re supposed to do so you can still walk and live and love in the face of life shattering events.

Cheers to Rilo Kiley for giving me a sing-along to help me.

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