This past Friday, my son’s school had a virtual mass that streamed live on Facebook. As I sat watching on my phone, I hadn’t realized how much I missed church.  I realized I hadn’t taken a moment to pause and reflect in a meaningful way in a while. It reminded me how much I appreciate that time once a week or however often I can attend church.

The priest gave a beautiful homily about Christmas and giving to others. He discussed how we show love by shouldering others’ burdens and called that act a privilege and a joy. He concluded by giving us an exercise: “What is the joy that you’ve experienced in giving?” he asked. I couldn’t help but think of June Jessee Memorial Foundation and the joy I receive from shouldering some of the burden of the families the foundation serves.

When we started June Jessee Memorial Foundation, June had just died, and I poured myself into creating it. The first year included planning and meetings with doctors, social workers, and hospital administrators. I focused on a logo, website content, and creating. I needed this to go on. Looking back, I can see the sorrow, pain, love, and grief drip out of me as we built JJMF. In some ways, if I am frank, it was also a way to temporarily postpone my grief. If I just keep moving, I do not have to feel the immense void in my heart. The point is, I needed JJMF as much as I knew families like ours needed an organization like the one we were creating. The work is how I put one foot in front of the other. That’s how I kept from crumbling.

That slowly changed when I met the first family we were lucky enough to support in 2017. The joy this family brought me is impossible to put into words. The mom has become a dear friend of mine, and I assure you I get more from knowing their daughter and being close to their family than the amount of support JJMF provided them. I feel June whenever I have been with their daughter, and the similarities are remarkable. Since meeting this sweet family, we have had the pleasure of meeting more and more families, and I get this same joy and closeness to June each time.

In May 2019, at our first annual JJMF Lectureship during Pediatric Grand Rounds at Washington University School of Medicine, we featured Dr. Julie Hauer of Boston’s Children’s Hospital. She (literally) wrote the book on caring for children with severe neurological impairments. I sat in the auditorium’s front row, noticing June’s picture on the screen above the Harvard Medical School logo.  I listened to Dr. Julie Hauer talk about a patient population whose outcome is uncertain. She addressed their unique needs and how providers can help caregivers along the journey by getting very clear with a family’s goals for their child. It was emotional as the topic represented many similar themes of our time with June. Before the lecture ended, I took a moment to look behind me and take in the audience. All these smart doctors were in this room, learning how to better care for families with children with complex diagnoses because of June. At the time, I remember thinking, June would be finishing up first grade right about now. Is this what it’s like to watch your child perform in a school play, tennis match, or spelling bee?  I really couldn’t take the credit, but I felt so proud. The emotion brought tears to my eyes, and I was in awe of her magic.

Similarly, last month, our team worked on videos for our Comfort + Joy virtual auction and end-of-year appeal. We asked a handful of families in our community, providers, and supporters to share why they support the JJMF. I sat on my couch in my office (or June’s room as we lovingly refer to it) reviewing the videos all at once, and I paused as that same awe washed over me. We are really making a difference, I thought. What started out as something for me and my grief has become so much more. And as I think back at where we are and how we started, I feel joy in creating something I could only fathom and watch it beautifully take on a life of its own.

I suppose through all of this, for me, at least, the joy I feel when giving back is connection. Connection to June, to other families, and to God. What if life’s lesson is to realize that we are at our best and at our happiest when we lift someone else up or are “shouldering a burden”, as the priest said? And if that is the case, of course, giving to others is a privilege.

Another comment the priest made that stuck out to me was, “God descended into my brokenness because he loves me.” When June died, I was broken. Heck, I think I was broken even before June came to my life, and if God came to me through June in that brokenness, then perhaps, she is the greatest gift of all. God doesn’t come to the perfect (newsflash: none of us are). God comes to us in our weakest and most vulnerable state. I once told a family friend that I never felt closer to God than when I was with June. I have not felt that close since, except when I have the privilege to shoulder some of the burden with the families I meet through JJMF. That is where the joy lies.