How to Keep your Spark in the Darker Days: When Motivational Quotes Sound Meaningless
written by Esra Tasdelen
“Frodo: I wish the Ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.”
JRR Tolkien, Lord of the Rings
As a full-time caregiver to my medically complex son, some of the hardest times in my life were days of crisis. Weeks spent in the hospital on very little sleep, and none of the comforts of home. Days spent in a haze. Days in which motivational quotes, or any advice, sounded, at the very least, meaningless, shallow, tone deaf, and completely unrelated to my reality. I am talking about quotes such as “Stress is mostly caused by imagined scenarios, if you realize it is caused by your mind, you can be more present in the moment and feel calmer.”
As all parents of children with complex medical needs know, we are not imagining nightmare scenarios out of the blue. We are not lost in hypothetical situations that were conjured by our minds. We are living with the day-to-day reality of having to make choices constantly, almost every hour of the day, that could have potential impact on the health and well-being of our child.
Most of us have past medical/hospital-related trauma, and we live with the effects of PTSD and constantly being on fight-or-flight mode. The choices we have to make on a daily basis are brutal and relentless, life-or-death type of choices. A cough can lead to aspiration. An aspiration can lead to hospitalization. A decision to enter a crowded room may lead to a respiratory virus, which can lead to hospitalization. A single mistake in using the wrong syringe or medication can lead to side effects. We have to be constantly on alert. This is what the minds of parents of medically complex kids look like. A swirl of anxiety and worries.
The mental health quotes that I see on the internet are of little to no help. Once I saw an image of someone resting in bed, with little quote bubbles around them urging the reader to “Take a rest day!”, “Self-care is important”, “Take a day off, the world will wait!”, “Take time to make your soul happy”, “Relax & Recharge”, and even, “Buy that plane ticket” or “Go on that trip”!
I have no doubt that these quotes were written with well intentions. But they simply do not encompass the reality of being a full-time caregiver.
For us, the world cannot, and will not, wait. We simply cannot afford to step away from our caregiving duties and reality, which is the equivalent of three full-time (8 hours long) nursing shifts in a single day, seven days a week. We cannot take a whole day off to rest in bed or relax at a spa. Some of us have given up our full-time jobs to care for our children. Some of us have nursing help, some of us do not. Some of us have partners/spouses who work outside the home. Some of us are single mothers. Most of us have to navigate several different realities (home, school, doctor appointments, therapies, medical bills, pharmacy and medical supplies calls, IEP Meetings…etc.) in a single day.
The job is more than full-time, relentless, and unless you are a paid caregiver, it is a job with no pay, raise, bonus, benefits, or time off. So how do we take care of ourselves in this reality? How do we breathe?
The answer: A few minutes at a time. That is truly all we can afford, and a little does go a long way. When I feel like the constant worry and anxiety starts spiraling inside me, I step outside for a few moments, take off my shoes, and step on the ground for a few minutes. I look at the clouds, the sky and the trees, and am never disappointed by them, even on the coldest winter days.
When I am having my morning coffee, I put on a favorite song. I simply do not have the time for a gym membership, but when my son is at school or is sleeping, I roll out my yoga mat and squeeze in a quick flow, or even a few minutes of breathing and sitting on my own, in between the daily chores.
Movies, being two to three hours long, are completely out of the question, but reading is my friend. I squeeze in a chapter before bed or upon waking up, and you would be surprised by how far even fifteen minutes a day of reading can get you. I hug someone I love (usually my husband, my daughter, or son). When you literally touch your heart to someone else’s, magic happens.
The key is to not adopt an “all or nothing” mindset, and to grab any lull or pause in your daily routine, whenever you can. To set aside a total of fifteen to twenty minutes where you do something just for yourself, every day. None of these are magic pills or remedies that will make the worries and anxieties go away completely. But they will, cumulatively, make you a more resilient person, much more well equipped to face the volatile everyday reality of parenting a child with special needs.
As all moms of children with complex medical needs know in times of crisis, sometimes the days get so dark that we wish we were not chosen for this role, a role that we did not sign up for. But now that we have been given this charge, loving ourselves and being kind to ourselves does help immensely in carrying it out with grace, with strength, with resilience.
Esra Tasdelen is an academic, writer, and mother of two, living in Naperville, Illinois. As the parent of a child with complex medical needs, she navigates a world of caregiving with resilience, love, and advocacy.
Passionate about disability rights, Esra channels her experiences into raising awareness and fostering inclusion. She is currently working on her memoir, a heartfelt exploration of her journey as a mother, capturing the challenges, growth, and insights gained while caring for a child with complex medical needs.
