“Incredible change happens in your life when you decide to take control of what you do have power over instead of craving control over what you don’t.” ~Steve Maraboli
On December 31, 2011 I experienced something I will never be able to blink away. I watched as my twelve-year-old daughter convulsed, turned blue, and stopped breathing on the floor of our living room.
Time stood still. I heard my blood whoosh through my ears. I became a helpless observer. This simply couldn’t be happening to us; she was fine only a moment ago.
I remember the exact moment when I realized that I was thinking that my daughter was dead.
I will never forget that choking fear that everything in my life had just changed forever. Nothing mattered in that moment other than her. I begged her to breathe for me. I needed her to breathe. Fear dug in hard and wouldn’t let me go.
After several moments of stillness, she took a very slow breath and then another. Her eyes were vacant and staring beyond me. Her arms and hands still twisted beneath her chin, against her chest. It would be hours before she would know who I was.
Little did I know this was the beginning of an unimaginable journey.
While I would lose her to a neurological conditional and medication side effects over the next four years, we would also learn and grow together, find happiness in the little things, and learn how to deal with the things we couldn’t control.
She was diagnosed with Epilepsy within a few weeks. I was hopeful we could manage this and get on with life. We followed her doctor’s orders diligently, and I was meticulous with her medications.
She had more seizures. We increased her medications. We changed her diet. I sought out alternative health practitioners and healers.
Time had a way of slipping by, first in days, then months, and soon years had drifted by without me noticing. We went to the best hospital in the United States and we were told there was nothing more we could do. This was not what I could accept. Instead, I continued to hope.
Her seizures increased. She couldn’t learn. She slept all the time. Depression and anxiety followed.
Her medication side effects were brutal, and I didn’t even recognize my daughter anymore. Her beautiful spirit had retreated, held hostage there by the thirty anti-seizure pills she took each day. I knew I couldn’t give up on her.
As her primary caregiver, I was sleep-deprived, anxious, terrified, and living in fear of the next seizure. She got worse, and I was drowning because I couldn’t control any of it. She required care, supervision and support that I felt I had no idea how to provide.
One evening, I woke to find her having a Grand Mal seizure in her bed. I sat alone in the dark with her, crying, because I had nothing left to give. I had no way to help her. I had done everything I could and it still was not enough. I couldn’t change things.
I crawled into bed with her so I could watch her breathe. Exhaustion settled over me, but I awoke with a shot of adrenalin when she began to seize violently against me. Again, I begged her to breathe.
I crumbled in the fatigue and the stress and knew that something had to change or we were going to be totally destroyed by this.
Surrender your desire to control.
In that moment, I knew that I had to surrender my desire to control the uncontrollable. I had tried for four years to manage the things beyond my control. This choice got me nowhere and stole my energy faster than I could refuel. I was now absolutely depleted.
I had to come to terms that I couldn’t control how long this beautiful child would have on earth. I could not breathe for her. I couldn’t watch her every single moment. This was not for me to determine.
This was the hardest thing I have ever had to do, but it made the greatest impact on my well-being, and ultimately hers, because I was able to show up differently for her.
In fact, while focusing on my daughter’s health, my son was hit by a car while riding his bike. This was a wake-up call to me that trying to control the uncontrollable was nothing but an enormous energy leak.
I couldn’t control the seizures, the side effects, or the memory loss. But I could control where I allowed my energy to flow.
Shift your focus.
I decided instead to shift my focus. I could control her schedule. I could make certain she got her medications.
I could get her to doctor’s appointments and scans. I could be supportive and give her my time. I could help her see moments of joy. I could help her with school work. I could be her advocate at school. I could give her more of what she needed between seizures.
As I began to focus my energy on the things I could control, I regained some purpose.
I felt more energized. My hope returned. I was less depleted and more strategic. I began to see new options and opportunities where before my fatigue saw nothing but closed doors. I felt a significant shift. I was spending my limited energy stores in a different way.
The other thing I did was I began to practice gratitude.
When you have something so massive pressing down on you, it becomes very hard to not be focused on that. We had been focused on her being sick. We fed the fears. We lived in anticipation of the next catastrophe. We forgot that we still had much to be grateful for.
I began to look for things every day that brought me joy: the sun on my face, a warm cup of creamy coffee, or hearing my kids laughing in the other room. The more I looked for these lovely slivers of joy and hope, the more I saw them.
Soon, I was focused on how blessed I felt and the joy that had always been around me but that I failed to see when I was looking the other way. Even in times of struggle, I continued to look for these simple things, and they were always there for me. I just had to decide to see them.
What this personal struggle ultimately taught me is that letting go of what you cannot control is hard, but holding on to these uncontrollable things and trying to manage them is much harder. My energy was best spent on things that could bring me desirable outcomes, not on trying to hold the wind in an open hand.
Our journey has taught me that I am in control of my thoughts, and when I pick my thoughts carefully, I can still flourish in challenging circumstances.
Over four years has passed since this journey begun, and I am pleased to say that my daughter has recently enjoyed a couple months virtually seizure-free.
We have begun to reduce her medications and introduced homeopathic medicine into her daily care. I am hopeful, energized and optimistic about her future.
There is no doubt in my mind that had I not surrendered and let go of the things I could not control, I would never have had the energy and focus to continue our fight for a seizure free life.
I know it is hard, but letting go of things you cannot control does not mean you do not care. It means you understand that letting go can lead you to a happier, less stressful life.