June is PTSD awareness month and for those living with diagnosed PTSD, every month is equally important to acknowledge Post Traumatic Stress Disorder. While I have never been diagnosed with PTSD, I identify with the feelings and triggers associated with it. My hope is that by sharing my story, we can continue to break down the stigma surrounding mental illness. I would never wish to take away from the experiences of someone suffering from diagnosed PTSD. June is also Dravet Syndrome awareness month and so my goal in sharing my story is to raise awareness always.

I remember trying to explain to somebody what living with our son’s seizure disorder felt like and not being able to put it to words. Try as I might, I could not adequately explain the knot in my stomach all the time, the sleeplessness, the lack of control, the fear and sheer anxiety I felt. Then I was with a group of moms whose children share the same diagnosis and they compared it to PTSD. Many families of children with chronic medical conditions report the same feelings.

There was a time when any time my son would look up at the sky I would experience heart-pounding terror and jerk towards him. Why you may ask? Because that was one of his signs of a seizure starting. His eyes would move upwards to the sky and he would drop to the ground. Protecting his precious head is one of my responsibilities on this earth so I became the kind of parent who would never forego that responsibility. Always at arm’s length, always ready to spring into action and I just got used to the knot in my stomach and the racing heart. I lived with it for so long that it became a part of me. I noticed that I was quicker to respond in anger, easily more irritable, had a harder time sleeping, experienced a lot more stress on a daily basis and had a hard time feeling like myself or relating to many people around me that may not have understood what I was going through.

I cannot pinpoint when it went away. One day my son looked up at something in the sky and I quickly pointed out some clouds I saw that I wanted him to see. And then it hit me. I didn’t have that feeling. I don’t know when it went away or how long it had been gone but I was simply looking at the clouds with my son. I am sure it coincided with a stretch of seizure freedom for him or my own personal decision to start an anti-anxiety medication to help cope with these feelings or maybe it was just the tide and the moon, who knows. But it was a glorious feeling and one I have since learned to identify as resilience.

Resilience is defined as the capacity to recover quickly from difficulties or toughness. However, what if we cannot all recover quickly from difficulties? Many are stuck in an endless cycle of struggle and most would gladly put it down for somebody else to pick up if they could. It does not mean for one second that they are not resilient or cannot learn to be.

Identifying triggers was a game changer for me. I’d always known I was a people pleaser but I never realized how much of myself I was putting on hold to do so. And how much I was comparing myself to others by doing so. A friend once said wisely, comparison is the thief of joy. She is so right. No two battles are the same, no two roads walked, no disabilities, no journeys. We all cope with things differently and what works for one may not work for another.

One thing is the same though. We are all resilient humans. We are surviving the best we can during a pandemic. We have become multitasking masters, technological wizards with our pajama pants on. Now more than ever, we need to teach ourselves how to identify our triggers, how to learn coping skills for the everyday hurdles that are being thrown at us, whether you identify with having a disability or behavioral health diagnosis or not, I think we can all agree that these are trying times and we can all use some tip and tricks in our back pocket.

For me, a positive person by nature, my son’s diagnosis rocked my world because I could not fix it. I could not make it better for him or control anything about it. Some days it was ok and some days it was not and I had to learn how to find the middle ground and know that this was his story and no matter what, it was going to be just fine. Some days I had to tell myself it was ok not to be ok. I started looking harder for ways to find joy in simple pleasures. There was a period of about two years where my son would seize unexpectedly in the morning. I did not feel safe not being right next to his sleeping body. I began having coffee in bed next to him. I turned my morning routine of necessary caffeine to start my day into a leisurely start and to be honest it kind of felt like a lazy Sunday morning.

I encourage you to find joy in simple pleasures right now. Blow bubbles, listen to the rain or the birds and focus on the sounds, drink a hot cup of tea and read a book for five minutes, make your household chores into a game and have your kids help you. Whatever you can do to get through this time or whatever time you are struggling with, know that you are not alone and know there is help available if you need it.