Well, 2024 is in full swing. As I sit to write this, it is the fourth week of January, and in some ways it feels like the fortieth; January can feel like the month that never ends. Nevertheless, I always appreciate this time even though it reminds me of one of my hardest moments – June dying. This is the time of year where we lead into June’s death anniversary on February 4, and it is always a time of much reflection for me.

What I like most about January, though, is that it brings a welcome opportunity to focus on and realign my goals for the year overall, and for myself personally. I don’t like resolutions because I think they are more negative in nature, so I focus on what I want to bring into my life instead. This year, I want to put more of my ideas into action. I can get caught up in wanting to do things perfectly that I don’t act unless I absolutely know that I can do it the way I envision it. As a result, I end up not doing what I want to do the most out of fear of failure.

If you have been reading my blog for awhile, then you know I have been saying for quite some time that I want to write a book. And, believe it or not, I am still working on it. It has been so slow, and I think some of that is due to my perfectionist mentality. If I can’t write a perfect first draft, I don’t even write. But I’ve learned – and come to accept – that there are only “shitty first drafts”, in the words of author Ann Lammot. I also think there’s a huge emotional blockage that is halting my writing process, which isn’t surprising given the nature of the topic. But I want to work through it, so I am accepting that it will be an imperfect journey, and I just need to keep moving forward.

In the past, this personal goal also led to my goals for JJMF. This year, however, I feel like my goals are almost polar opposites. For JJMF, I don’t want to just keep moving forward; in fact, I want to slow down. Over the last eight years, JJMF has grown into an organization that is beyond anything I ever could have imagined. If you would have told me back in January 2016 – as I was holding June during her final weeks of life – that JJMF would grow into an organization that families, doctors, therapists and social workers rely on for support, I wouldn’t have believed you. And not because I didn’t think it was needed, but because it all seemed too overwhelming. The issues families face felt all too complex for any one organization to tackle. Yet year after year, JJMF has grown beyond our original plans, and I am amazed by the opportunities we have had to make life a little better for families like ours.

In the first days of the New Year, during a yoga class, I was reminded of the ever-common phrase, “root down to rise up.” A lightbulb went off in my head as I shifted into my reverse warrior. I love when this sporadically happens: something I am doing in yoga just all of a sudden aligns with my life off the mat. As the instructor talked about how it is important to have a firm holding, strong foundation and core before we can rise up, I couldn’t help but think about JJMF and my vision for its future. For the last few years, we have focused on the growth of the organization as a whole, including our community, programs and fundraising efforts, which are all so important. While continual growth is still a longstanding goal, it occurred to me that there is incredible value in spending this year grounding ourselves and establishing roots in our standards and practices, so that we can continue to be a strong organization not only for families now, but in the future. I want JJMF to have strength from the inside out, just like the families we serve, and we can’t do that if we are only focused on growing bigger and faster.

I was thinking about this phrase, “root down to rise up” and how it could be a mantra or phrase for families in the thick of their medical journey, too. The families we serve deal with a lot each day. They wake up and don’t know which direction the wind is going to blow. None of us do, really, but it is more obvious for these families. A virus could turn into a two week ICU stay or a trip to the pharmacy could result in a $1,000 bill. An ice storm could cause a pipe to burst that damages your child’s power chair–resulting in hours on the phone with insurance and waiting months for a replacement (yes, this is a real experience that one of the families in our community is currently enduring!). The bad case scenarios can seem endless for the families we serve, yet they continue to stand firmly and courageously in facing all of the challenges they encounter.

I certainly don’t have all the answers on how best to cope when bad situations inevitably strike, although I wish I did. I do know that, for me, sometimes it’s as small as coming back to myself and finding a slither of peace that can get me to the next step. When I am able to remember to take a moment to pause, find my footing, and breathe – then I can return to my true essence of who I am and how I can best support my family in these difficult moments. From there, I am able to move forward and grow stronger in the direction that I want.

While I keep pushing myself forward to finish writing the first draft of my book this year, I’m going to keep this “root down to rise up” perspective as a leading mindset throughout 2024, for both JJMF as an organization and in my intentions to best support families. With this mantra as our leading force, I am confident that we can build strong foundations that will empower us now and into the future.

 

By Genny Jessee, JJMF Executive Director and Co-founder