Tracking the Struggles and the Joys

I am an inveterate note-taker. Back in high school, I carried around a spiral-bound planner/calendar with the school’s name on it. We each got one, but I seemed glued to mine. I wrote to-do lists, assignment deadlines, notes to myself, and details about social activities such as parties and dances. You know, things I wanted to remember to do. I liked the way having that planner let me look back at my very recent past and flip forward in anticipation of what came next, especially when I was bored in class and needed something to do that looked like work.

I continued this habit into adulthood. Before we married, my husband noticed my note-taking and daily planning, my to-do-lists-turned-personal journals. He teased me about the fact that I keep these old journals, calling me a “hoarder of notebooks.” (I still have the journal with all my wedding planning to-do lists.)

When I was pregnant for the first time, I figured that I’d be journaling for two, so I went out and bought extra-long Moleskine notebooks, in various shades of pink. Today, I’m glad I have those books about that time. Looking at them helps jog my memory about what was going on in my life before June was born, the very ordinary things on my to-do list: the thank you notes to write, the friend’s call I needed to return. They remind me of the person I was before June.

I’m also glad I’m a hoarder-of-notebooks because these journals are a document of June’s life. They’re a record of her birth, of the first indication of problems, of the progression of events, and the many diagnoses that characterized her short life. They also record the real joys we had with her.

From Journal to Medical Log

The day we came home with June from the hospital, on the inside cover of the first book, I wrote June’s name, date of birth, time born, the day of the week (Sunday), and her weight and height. Not much was happening those first few weeks, looking back on it now. I wrote, “Baby June’s Feeding/Sleeping Schedule Log.” I tracked every time I fed her, and for how long, and what side I started on since I was nursing. I also wrote down the number of wet and dirty diapers. On May 2, 2012, I noted that one diaper was “very wet.” One day, I even described the color of her poop. (“Yellow.” And, “yellowish-green.”)

But then, pretty quickly, my notes began to change. That pink book became a place where I wrote down questions to ask the doctor. Why did she seem to lack hearing? Two weeks after her birth, I noted driving directions to the ENT’s office where we were going to check her hearing. I then wrote the doctor’s description of the type of hearing loss she thought she had, and “next steps” for me, including calling the two specialized schools/education centers in St. Louis for children with hearing loss.

In July 2012, when she was three months old, I started to record her sleeping and waking times. She wasn’t sleeping for more than an hour at a time, and not in any regular pattern. I was desperate to get her on a schedule.

By the end of July, we had learned that June was having infantile spasms. (I later learned that many children with neurological disorders, especially seizures, have trouble sleeping.) My baby book basically became a seizure log. I also began tracking her medications. I hadn’t even been a mother for four months, but already, my experience as a new parent had become one of serious worry. My notebook reflected this growing anxiety.

By August, I had my medical logging system down. I tracked what she ate and the amount in the upper left quadrant of the page. I wrote the meds I’d given her that day in the upper right, and tracked her seizures along the bottom.

Transforming Journaling

By the fall, my love of journaling was seriously waning. Keeping a journal had always given me a sense of order and control. It had been a positive force in my life. But seven months into having June, I felt a sense of defeat wash over me every time I went to pick up my playfully pink notebook. This was something that had never happened in all my years of obsessive journal-keeping.

Of course, I was using this journal differently than the others. It had become all negative, a diary of devastating discoveries, an illness log. In the past, I might have complained in my personal diaries about little things, like family squabbles, but they weren’t so overwhelming, and they were never all that I wrote. I’d also list particularly fun things I’d done, high points, and, when I was down, ways to make myself feel better or improve a relationship. In one of my pre-parenting journals, I’d written the reminder: “Use ‘I’ statements in conflict.” Journaling had always left me feeling better, in part because I used the writing practice to remind myself that there was something I could do to improve my life or a situation.

But with June, the need to keep track of the doctors and the seizures somehow squeezed out this other piece. I’d forgotten to do what I’d always naturally done as a regular diarist — use the pages to bounce myself out of a funk, to remember all the good that was in my life, and to remind myself of the elements over which I do have some control.

So later that fall, I realized I had to do this, too, with Baby June, and with our lives more broadly. My life was not all doctors and seizures, and neither was hers. It’s harder to remember the blessings when caring for a seriously sick child, but they are there.

On November 12, I added a new section at the bottom of each page, called, “Blessings.”

The blessings I wrote down that day included:

• June snuggled with me this morning
• She sat supported and smiled at herself in a mirror
• I was able to comfort June and rock her to sleep for her nap
• She smiled at her peacock toy
• She wanted to be held

What I’d realized, by reflecting on my journaling practice, was that I needed to look up and see the blessings even more so now, when life involved daily challenges that seemed too hard to manage. I needed to remind myself to record what went right, and to do so more regularly than I had back in my old, ordinary days. I recorded small things that made all three of us happy. Some that stand out to me now are the day June almost rolled over, the time she squealed in a stroller out of delight during a walk, when she fell asleep in my arms, and when she took a three-hour nap!

Recording the Blessings

Finding things to be joyful about in seriously difficult times is not easy. (Anyone can be joyful when opening birthday presents at a party with cake and cocktails on the beach.) But this practice was so important during those early years, and it has helped me become a more optimistic person in general. Finding positives doesn’t mean forcing yourself to think about how things could be worse, that comparison-style of happiness (which we often tell kids to do): “Be grateful! At least you have food on the table!”

Rather, recording my blessings during real struggle taught me to look harder to see the beauty around me, to build that “muscle” of noticing and appreciating what I do have. It also helped me see the beauty that arises as part of the hardship itself. I would note my gratitude for the professional helpers around us I would not have met otherwise, the friends and family who offered support and became closer for it, and the opportunity I had to meet June, herself, such an innocent, loving, sweet soul.

I love this quote from Fred Rogers (of Mr. Rogers Neighborhood): “When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’” Today, nearly three years since June died, I sometimes forget this lesson about looking for joy that I learned while caring for her. It’s easy to get caught up in the day-to-day, and to fixate on troubles. Going back through those pink journals this winter has brought a new benefit; it reminds me to put a “blessings column” on ordinary days, to take the time to focus on the positive, whether I write it in a new journal or just do it in my head.

Could you use a journal practice to help you with your parenting? I am a believer in the power of journaling to help organize, memorize, and give you a sense of meaning and control. I want to share my process with you because it helped me so much — both documenting what had to be done for June and the blessings in my own life. 

Genny Jessee is the executive director of the June Jessee Memorial Foundation (JJMF), a nonprofit organization dedicated to supporting children with devastating medically complex, neurological conditions and their families, aiding their physical, emotional and financial needs. She and her husband, Matt Jessee, founded the JJMF in 2016 in honor of their brave daughter June Jessee, who lost her fight with medically complex, neurological conditions at age three. 

Genny leads all of the JJMF’s fundraising and programming to support children with medically complex, neurological conditions and their families. She also is the lead editor and blogger for the JJMF’s website, www.junejessee.org, which has become the leading online resource to help St. Louis-area parents and caregivers navigate a medically complex, neurological diagnosis and complicated healthcare landscape.