… 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.