Imagine if an unwanted guest showed up on your front door step and refused to leave, changing the very fabric of your life and your loved ones. Imagine this guest could not be controlled despite your best efforts and this guest could be silent for periods of time and then crash into your day demanding your attention immediately, unexpectedly, threatening your safety and well-being and leaving in its wake confusion, exhaustion, possibly injury or death. This is life with uncontrolled epilepsy. 1 in 26 people suffer from this illness, and it can manifest in many forms.
10 years ago, this guest arrived in my youngest sons’ life a byproduct of viral meningitis and encephalitis. Standing outside his pediatric intensive care room I asked God if he was going to take my son, the doctors seemed to think so. I heard a deep and clear voice that spoke “No, this is just something he has to go through.” I was relieved and grateful and hopeful and very, very naïve.
Recently we applied for SSD for him, because at some point in time I will no longer be able to be his primary caregiver. There needs to be a backup plan for him. In doing so we collected some of the medical records from the past 10 years, it was heart breaking to review them, to relive somethings that were best left in the past as we move forward each day in hope and optimism that his life is better, he heals and finds peace in a body he cannot control.
I know in so many ways we are lucky, I know people whose loved ones have died, or they are 100% dependent, so I am grateful that we are where we are. Epilepsy changed my son’s life, my life, my family’s life.
So ultimately the reason I share this is not to garner pity, no. I am a hospice nurse by trade and a mother of a disabled child by karma. I share this because it is good to remember that everyone has challenges, visible and invisible that colors their world. Everyone has an unwanted guest in their life that challenges the fabric of their character, forcing them to grow and make choices, often hard ones. When I look at other people’s lives, I try to remember this and open my heart through kindness because I only know my own story, I cannot not know theirs. But I can offer love, and non-judgement and a hug, because no matter the challenges we are here together now and it is a Divine thing to care for each other with kindness, always.