I like having a word to focus on each year to inspire and guide me. For 2023, I have chosen ‘trust’ as my word. I realized this past fall that I am on a journey to trust myself again after the traumatic events of caring for my daughter June, who had many medical complexities, and then, of course, her death.
I have been living pretty steadily in survival mode since April 30, 2012, the morning that June failed the newborn hearing screening at the hospital. I went from feeling elated to vigilant in a matter of hours. And that drastic shift was unnerving. Being on guard served me well back then. It forced us into action to get June the treatment she needed and allowed me to sense the genuine danger that required swift action. There is so much talk about taming anxiety that we forget it can be a good thing. There is a reason why we, as a human race, have it. The feeling of unease lets us know when we are in danger and when to respond to the situation.
The problem arises when it becomes our baseline. And that’s what happened with me and many people who experience traumatic events, even ones not as intense as parenting a medically complex child or the death of a child. It is nearly impossible not to live with an underlying sense of alarm when you have a child as severely ill as June.
June died almost seven years ago, though, and I am no longer living with the threat of danger around the corner. The crisis happened; I couldn’t save her. She is gone. I am no longer being chased by the tiger, yet I am still running and hiding like I am. I worry it is still out there and ready to come back for us.
When June died, my fears didn’t just go away; they transferred to my son George, who was 8 months old at the time, and then to Peter, who was born a year and a half later. The worst part about my worries - one of my children could die - is that I can’t justify it away. Most people think they can, but as a grieving mom, I definitely can’t. Statistics do not calm me; medicine doesn’t dull the anxiety, and pushing it away makes it grow louder.
Over the past few years, I have worked on healing the alarm I feel around George and Peter and other uncertainties around loss. I’ve read books, gone to therapy, journaled, prayed, and meditated. I’ve done EMDR, practiced yoga, changed my diet to support brain health, and limited things that increase anxiety, such as alcohol and excessive screen time. I’ve tried to sit and listen to my anxious parts like I would my kids. And all of this has worked, and I have grown so much along the way. I can feel the alarm easing and notice myself responding to situations differently than I would a few years ago.
The struggle for me has been deciphering real threats we all need to be aware of from imagined ones. Knowing that I was sometimes being overprotective, I have become someone who second-guesses my intuition and seeks outside validation. As a result, I lost faith in my ability to assess the environment, and I really didn’t like that.
This is where trust comes in. Since June died, I have come a long way to face my fears and have the tools I need. I spent so much time focused on avoiding future storms, which stopped me from living in the moments that I was afraid of losing. I understand why this part of me was scared, but I’m ready to loosen my grip on controlling situations out of my hands. I know what a real threat is and what isn’t, and if I miscalculate and overreact or underreact here and there, it’s okay. I’ll recalibrate.
As I’ve taken on this new philosophy of self-trust, it has also got me thinking about other areas of my life I can trust a bit more. For example, I have big plans for the June Jessee Memorial Foundation. I want to build a respite program here in St. Louis to support families with children with severe neurological conditions. It will be a lot of work, and there are a lot of challenges to navigate, but I trust the process and that our hard work will pay off. I also have a dream of writing a book about my time with June. Last year was the year that I really believed I could do it and started it. This year, I trust that I will finish it.
Like all things, change starts within ourselves. To trust life again, I have to start trusting myself more. I am capable, but letting go of control is hard. It won’t happen all at once, and I will go easy on myself when needed - deciding when to push myself out of my comfort zone and when to stay in my bubble. I will make mistakes, but I will learn and grow from them. Sometimes, knowing that I can count on my strength, lessons learned, and that I can give myself grace is all I need to be less afraid.
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