On May 31, 2016, just three and a half months after my daughter, June, died, I wrote on Facebook, “I love that there is an entire month named after our angel 💗👼🤗. Looking forward to June.” Even though I made this comment in jest, I did love saying and writing her name all month long that first June after she died, and I still do. Like me, most grieving parents love to talk about their child and say their child’s name.

In 2017, the following year, we decided to make the month of June a celebration of sorts. We gathered donations from local shops, purchased items, and put together June Care Packages for families on the Neuro and PICU floors at St. Louis Children’s Hospital. The next year we added meals for families staying at the hospital in addition to the care packages. In 2020, with the pandemic and fewer kids inpatient at the hospital, we decided to also deliver packages to families’ doorsteps – locally and all over the country. I love that it has become a tradition to celebrate the month of June each year by spreading our love for our June to families of children with medically complex, neurological conditions.

This year, our care packages took on a theme and focused on self-care – from the inside out. When I was caring for June, I used to hear all the time from well-meaning family members and friends to make sure I was “taking care of” myself. I know it’s a lot easier said than done, and sometimes it would stress me out just to think about finding ways to do so. If the pandemic taught me anything, self-care isn’t just about getting a massage or going out to coffee with a friend. Self-care can be as simple as noticing how you talk to yourself and treating yourself the way you treat others. Each care package included items I’ve found helpful: a copy of the Self-Love Workbook for Women, a one-month membership for online workouts that are quick and easy to do no matter where you are, an insulated beverage tumbler, the JJMF’s signature “Junebug cookie,” and more. In addition to delivering care packages, we also held in-person caregiver and family events and some virtual events for our families out of town and those who are more comfortable attending remotely. Each year, our Month of June celebration has changed a bit, but it’s always one of my most favorite times.

When I started writing this blog post, I intended it to be about why we celebrate the month of June, how it began, and how the celebration has evolved. I sat down at my computer and pulled out my journal from May/June 2016. I thought there might be some insight in there on what I was thinking at the time. Keeping journals for years and years has taught me that my memory can play tricks on me.

What I read was not what I expected because I had forgotten the depths of my grief in the months following June’s death. I remembered being sad after June died, but I thought it was the most overwhelming when June was in hospice and as she was dying. I was misremembering; I think it was all-consuming at both times. In June 2016, as the first month of June approached after my June died, I was not in a good place, even though it may have appeared that way to others and on social media. I felt numb and empty, and like I couldn’t connect with anyone. I wrote about going to lunches and dinners with friends and not knowing how to talk to them. Everyone was just trying to help me, but seeing people was a lot of work. Even though I had to be there for George, who was about to turn one, my life felt meaningless. After June died, I experienced such a drastic shift from being a medically complex mom to being a regular mom. And while I was thankful June’s suffering was over, and I didn’t have to give her meds throughout the day, adjust her to keep her comfortable, and take her to a ton of appointments she didn’t like…I was restless. I also felt insignificant. Doctors and nurses weren’t calling me to get my opinion on June, and therapists weren’t making visits asking for my feedback and my insight. There was so much – too much even, and then… nothing.

Now reading the journal entries I wrote five years ago, I recognize a hurting mom. I don’t feel pep and excitement jumping out of the pages or someone who is trying to help others. I emphasize that because it is exactly what people tell me about myself. When I describe my work with the June Jessee Memorial Foundation, I usually hear something along the lines of, “I don’t know how you did it. During your grief, you took care of other people.”

The truth is, starting and running the June Jessee Memorial Foundation is one of the most personally fulfilling things I’ve done. It was a way to keep me going when I did not know how to live without my daughter. And throwing myself into it right after June died carried me through; it kept me connected with a big part of what had come to be my identity. Most importantly, it gave me a place to express my eternal love for the most beautiful girl I’ve ever known.

There is a quote I love, “Just because someone’s carrying it well, doesn’t mean it isn’t heavy.” Every person handles grief differently, and all of it is normal and okay. There is no right way to carry it, even though our society puts judgment on it. There is just your way in this moment, and if something isn’t working, you can change what you do and find something that feels better. The important thing is to keep getting up, keep moving forward, and find ways to incorporate your loved one into your everyday life.