By Sarah Thomas
Sarah Thomas’ son Lewis has cerebral palsy, epilepsy, ADHD and is PEG-fed as the result of suffering a major stroke when he was three. Lewis and his twin brother, Cohan, are now 14, and life is still chaotic. But this one piece of advice helps keep things in perspective.
I recently attended an online medical conference. The conference was good and the content kept me interested for the duration of the event – not an easy thing to do online – but if you were to ask me now what was covered, I could only tell you one thing. A simple, yet profoundly impactful philosophy offered up by one of the presenters. “Choose your hard”.
I feel like the world – and especially our medical world – needs to pause and think about how powerful this is.
Choose your hard. Let me explain what this looks like in practice.
Every day, I wake up knowing I have at least five “hards” to tackle. Some days it’s 10 hards, sometimes 15, but it’s never less than five.
My first hard is coaxing my sons to get ready for school. My second is scheduling my day to fit in all the things I need to do. Another hard is getting dinner sorted for everyone in my house, including our pets. Then there’s the never-ending- laundry-pile hard that seems to be my sole responsibility.
Sometimes my daily hards can be challenges with my son’s medical team. Sometimes it’s an issue at school. Most hards I can manage, as I know they’re coming and can generally anticipate what they’ll require of me.
It’s the hards that come out of nowhere that hit like a brick.
The call from the school about a child in sick bay. The dog inexplicably limping, needing to go to the vet. The activity we’ve all be excited about has been cancelled because someone has Covid.
Then there are the really hard hards. The school not budging on what I think is fair and necessary for my disabled child. The surgery date rescheduled for the third time. The support worker calling in sick – or worse still, taking another job.
Choose your hard.
I can choose to battle my kids into getting ready for school, or I can make their lunches and have their uniforms ready so all they need to do is walk out the door. I can accept that there must be someone sicker than my child who needs more urgent surgery. I can hire another support worker.
Hards don’t go away, and as parents to medically complex children, we are faced with many more hards than the average family. We don’t complain about them, we just deal with them. That’s how we roll. But there are only so many hards you can take. When you hit your limit, that’s when you need to choose which hards you are going to tackle, right here and now.
Will I fight with my husband because he forgot the milk? Do I need to go out with my friends when I’m exhausted and just want to stay home? Should I explain to my family for the hundredth time that “no, a child won’t always eat when they’re hungry enough”?
Sometimes we need to take a step back and say, “this is not the hard that’s going to consume me today. My current hard is a big one and that’s taking all of my energy to fight. I don’t have the brain power to deal with any other hards”.
So yes, I still make my teenagers’ lunches and set their uniforms out for them before school, because for me, that’s a hard I don’t need to start my day with.
I try to choose the hards that I can manage at the time. I try not to care if that means I do things other parents don’t agree with. I try to remember that those parents don’t have my hards, or the same number of hards that I’m dealing with. And I take comfort in the fact that there are many other medical parents that can, and do, support me when I need it.
