Jenny Beeson

In Our Stories by Kim Eiffert

“So maybe this is how God works in our lives. Maybe God somehow helps lead us to people who bring us light when we have lived in a sea of darkness.”

***

At Story of Hope
By Jenny Beeson

I don’t know how God works, but I do know that I am most at home when I find myself in the company of curious and uncertain seekers.

My first experience at GAUMC was at a Women’s Night where I was invited to attend by my sweet neighbor who thought I would fit in with several of the regular attendees.  It happened to fall on the night before my beloved, profoundly disabled oldest daughter was scheduled to have her first neurosurgery in an effort to treat her refractory epilepsy. You see, we had almost lost our daughter a few months prior due to a particularly severe status epilepticus event where she seized for over 30 minutes, stopped breathing, and had to be resuscitated by paramedics, and then again by a trauma team at the ER. 

This traumatic event changed my life, and may have been what opened my heart to the possibility of joining a church community. “Christianity,” or shall I say “some Christians” haven’t always rubbed me the right way.  When I was a teen, my dad would tell others I was “intolerant of the intolerant.” And now that I have a family that includes two beautiful souls who are part of the most marginalized people on earth (the disabled) I am even more passionate about fighting against inequality and fighting for inclusion and acceptance.

My daughter who nearly died is seventeen and has a rare syndrome causing a profound intellectual disability, too many medical complexities to mention, is non-speaking, incontinent, and does not understand spoken language. She has three younger siblings. The youngest is a nine-year-old boy, who has a different and an even more rare syndrome making him moderately disabled, and with a plethora of medical and developmental needs as well. Between him and his oldest sister, we have spent hundreds of nights in hospitals and thousands of nights sleepless with worry.  Their neurotypical siblings (15 and 13) are well-versed in calling ambulances and witnessing their siblings nearly die while their parents administer lifesaving medications.  We live a very unique life with trauma upon trauma. It is so isolating.

At that first encounter at GAUMC Women’s Night, I was able to share a little bit about my family at my table, and once they learned of my daughter’s neurosurgery the next day, these women who didn’t know me at all, showered me with love, grace, hope, and support.  I will never forget them standing in a circle around me, gifting me with blankets, wooden crosses, and a prayer from Laura Echols-Richter that brought me to tears.  Little did I know, this wasn’t to be a one-time occurrence.  

In the months that followed, I began attending various events at GAUMC, and truly began to feel like I found “my people.” As is the nature of rare disease/profound disability, my family continues to live in a chronic crisis.  We have had more hospitalizations, surgeries, procedures, infusions, and news that would bring you to your knees.  While many people we have known through the years have slowly drifted away, likely due to compassion fatigue, I am both hopeful and inspired by the friends who have become like family in the Grace Avenue community. At one time, after almost losing my daughter, I felt hopeless and alone, because of GAUMC, I now know that we have community, love, hope, and unwavering support.  

So maybe this is how God works in our lives. Maybe God somehow helps lead us to people who bring us light when we have lived in a sea of darkness. Maybe God is the spark in all of us that is brighter when joined together in solidarity.  I don’t know, and I don’t need certainty.  But I do know that even though the last 13 months of my life have been met with more than our fair share of heartache, that burden is significantly lighter due to the loving souls at Grace Avenue United Methodist Church.  If that’s not God, then I don’t know what is.