I’ve recently been going back through the entries in my journal from when June was alive. With some encouragement, I’ve started sharing excerpts, along with my reflections on those days, in a series of blog posts. There’s a sense of vulnerability in exposing your deepest pain to others, especially after time and experience have given you greater perspective on some of the emotions,
questions and even mistakes you made when feelings were raw and unprocessed. At the same time, there is healing in revisiting your darkest days through a new lens. But the reason I share the journey Matt and I have had is so that other moms and dads, brothers and sisters, and
extended families will know they are not alone.

This is what we set out to do with the June Jessee Memorial Foundation – create a community providing courage, comfort and clarity for families navigating a similarly strange, scary and exhausting path. The world of caring for a medically complex child with special needs can be a lonely place, but the reality is there are many of us inhabiting the same space. With your support, we can continue to strengthen our commitment to this mission and to spreading awareness of the challenges these families face.

When I look back on 2018, I’m extremely happy with all that we accomplished. During the year, we provided financial assistance to 13 families through the June Jessee Memorial Foundation Fund administered by St. Louis Children’s Hospital. Funds help offset costs related to the many specialized services, equipment, medications, and so on, parents constantly are discovering they need.

In the spirit of June, we sought to bring a little sunshine by delivering goodie bags and lunch to patients and families on the neurology floor of Children’s during the month of June. Our June Goodie Bags, filled with toiletries and other comforts of home, not only help to make a hospital stay more bearable but remind parents there are those that understand and care. We plan to continue these trips throughout the year.

The emotional roller coaster you’re on, with seemingly no stop button, can take an enormous toll and what we’ve found to be the greatest area of need for parents. I’ve spent many nights on the phone with moms who open their wounds and innermost thoughts to me; because they know I can listen without judgment, speak from experience and simply appreciate all that they’re feeling. I feel grateful that I can now be that person for another. In an effort to connect moms and their shared experiences, we hosted our first Moms’ Night Out on October 1. That evening, about 30 mothers of children with neurological and medically complex conditions showed up, and among the serious conversations there was also a great deal of laughter! These moments of feeling normal, of finding kindred spirits – of exhaling – are what we hope to build on in 2019 with quarterly events and other opportunities to bring families together.

The human spirit is what links us and having someone to talk to when the world feels upside down and all mixed up can be a lifeline. We are thrilled to launch a new Behavioral Health Program for neurology parents and caregivers at St. Louis Children’s Hospital to help identify and address the many psychological disorders that are common in caring for a child with complex needs. Through a $45,000/year investment, JJMF will fund a part-time behavioral health specialist to assess, treat and/or refer parents on to the appropriate professionals.

None of these efforts would be possible without our generous, loving volunteers and donors. Most have no personal experience with children like June, but they all know loss, grief and have a heart for the greatest pain a parent can endure. Please consider a continued or first-time gift to the June Jessee Memorial Foundation, knowing that you are helping to build a community that is touching hearts and changing lives.

There was not a foundation like JJMF when Matt and I were caring for June, and the support that we desperately needed now exists because of her…and each of you. I like to imagine June in heaven today, nudging me in the right direction, towards the right people; playing with other children like her and each of them shining their rays of light on all of us. She has all of the answers now and knows exactly what it was all for. I believe I do, too.

Thank you for sharing this journey with us.