I came up with the idea for a post about coping strategies during a particularly difficult period in my family’s life. It was the middle of summer—an especially challenging time for special needs families as we struggle to get by without the usual support from school. During that time, one of my worst nightmares came true. JJ started having seizures.
My life felt like a train that had just veered off its tracks. I was logging descriptions of different types of seizure-like episodes into my phone, juggling calls and messages from doctors and therapists, and experimenting with medications for my daughter. All this, while watching JJ suffer. If her little body wasn’t jerking and twitching, she was whimpering, crying, or sleeping. Every time I looked at her, I wanted to cry or whimper too. But JJ needed me to stay strong, organized, and in control. If there was ever a time to draw upon all the ways I had learned to deal with grief and fear, it was then.
I like to think of coping strategies in several different categories. On various occasions we may need to reframe the way we think, distract ourselves, burn off negative emotions, process a traumatic event, or make sense of something happening in our lives. And then, of course, there are the times when none of this seems to work. I’ve often found that these are the moments when I just need to face up to whatever emotions have been brewing inside me. I can’t move past them until I allow myself to feel them.
During that difficult summer it wasn’t as simple as going for a run or finding a new Netflix film whenever I felt stressed. Instead, I had to do some soul-searching each time I felt myself faltering. Did I just have a lousy day I needed to erase with a glass of wine and a good book? Or had my stress built up to a point where I needed to burn it off with some exercise? Was I asking myself difficult questions about JJ’s quality of life and our family’s future that I needed to work through with some deep thinking? Or did I feel so sad and hopeless that I needed to let it all out with a good cry?
When most people talk or write about coping strategies, they make it sound so simple. It seems no more than a matter of finding the time to do some yoga, go on a date with our spouse, or soak in a bubble bath before returning to our lives, rejuvenated. I don’t think it really works that way. Instead, there’s an art to getting it right. It takes a certain amount of experience and self-reflection to recognize what we truly need at any given moment.
If we don’t get it right, then we risk ending up more frustrated than when we started. If we are grappling with big questions and powerful emotions, simple distraction probably isn’t going to cut it. We need to give ourselves the time and space to process new hurdles, deep-seated fears, and uncertain futures. And if we hit a particularly dark, stressful moment that sucks up all our hope and joy, we probably don’t need to process anything right then.
Instead, our time would be better spent searching for reasons to feel optimistic.
As my family waited for JJ’s EEG to be scheduled, experimented with medications, and learned about the various kinds of seizures—who knew there were so many?—I cycled through all the coping strategies I had built up over the past few years. When JJ had a day during which everything seemed to go wrong, I ended it with a Jane Austen film. When I felt like I was going to scream if I had to answer one more doctor’s email, I laced up my running shoes. When I looked at my sleepy, shaky girl and wondered what parts of her life were still worth living, I scheduled a session with my therapist. And when I felt my hope dwindling, I reminded myself about promising gene therapies for Rett Syndrome.
In each situation, I didn’t simply jump straight into the coping strategy itself. First, I took a minute to ask myself what I truly needed in that moment. Then I did my best to make it happen…with lots of help from family and friends.
And this leads us to one of the most valuable components of coping strategies. They don’t simply involve activities. They also include people. It’s just as important to find the right person to help you deal with a stressful situation as it is to select the best way to cope.
Sitting next to me on the couch, watching the newest adaptation of Persuasion on Netflix, was my sister-in-law—the perfect laid-back film viewing companion. On the other side of the screen during my Zoom calls was my therapist, a woman with a knack for asking thought-provoking questions and teasing out helpful answers. As I searched YouTube for videos of mice who had been cured of Rett syndrome, my oldest daughter was by my side, talking excitedly about how she wanted to become a scientific researcher when she grew up. And when I just needed to let out my pent-up grief and pain, I wasn’t doing it alone. I was crying in the arms of my husband.
During that difficult time, JJ herself also played a significant role. Sometimes the most meaningful way to combat the hectic, exhausting, and terrifying parts of special needs parenting is to spend quiet time with the child at the center of the chaos. Otherwise, we can get so caught up in the crisis of the moment that we forget who all the work is for and why it’s so important to keep doing it.
There were moments when I felt horribly sad holding my tired, shaking daughter. But there were just as many times when it was the only thing that could truly calm me. Pressing my child’s head to my chest, feeling her breath warm on my cheek, wrapping my arms around her little body—these were solid, tactile reminders of why my family was fighting our exhausting, terrifying, never-ending battle.
After weeks of experimenting with medications, talking to doctors and nurses, and learning to use the new seizure tracker app on my phone, things finally started to turn around. JJ’s seizures became less frequent, her energy levels improved, and her smile returned. Then, one day, she seemed like herself again. She ate all her meals quickly and happily, squealed her approval of the music we played for her, and zipped around the living room in her gait trainer.
My husband and I spent much of the afternoon just watching her. We didn’t know how long our daughter’s new-found energy would last, when the next seizure would come, or what the next crisis would be. But we pushed all that to the back of our minds for the moment so that we could just savor our youngest daughter enjoying life again.
Sitting on the couch next to my husband, I realized something. When we care for a special needs child, or anyone who is struggling or suffering, making memories can also be a wonderful way to cope. I build my memories up during our family’s lighter moments and store them away for later, when times become dark again. Because if there’s one thing I’ve learned about this kind of life, it’s that nothing ever stays the same. Those happy memories will never go to waste.
Someday, somehow, I know I’m going to need them.
What are your own coping strategies? When do you do them? Who do you do them with?
Let me know in the comments below.