“The work or practice of looking after those unable to care for themselves.”
I was recently asked to share my caregiving experience in greater detail for a national caregiving contest. I didn’t win any prizes (oh, well!), but I was grateful to have had the opportunity to really evaluate what my eighteen-year journey had been. I hope my words respectfully mirror the impact of caregiving on my life and encourage you on your journey.
The work … the practice. It takes work and practice to care and to be a caregiver.
My caregiving story began on September 6, 1996 and ended on February 6, 2015. It was an eighteen-year journey filled with joy and crisis as I cared for our precious son, Robert Christopher, along with my husband and our four other children. I learned through his excellent medical teams how to care for him medically, but the daily work and practice was something that I had to experience and take to heart one step at a time. Before giving birth to Robert (and his twin sister, Victoria) I knew nothing about caregiving. But I learned and grew in my understanding of Robert’s medical complexities. First, I must tell you who Robert was before I can possibly explain my caregiving journey and how it changed me.
Robert had a very rare CHD2 variant and mitochondrial disorder that involved a variety of body systems including the brain and muscles (causing all types of seizures, poor stamina, muscle weakness, lack of muscle tone), and the nervous system (heat intolerance, excessive sweating). Over the years, Robert’s symptoms became especially severe during ordinary infections, often with ordinary exercise, and with excessive heat or humidity. As his disease was progressive, he was eventually diagnosed with cerebral palsy, autism, and intellectual disabilities. He would sometimes spend days in the hospital to control his hundreds of seizures.
His treatments included every avenue possible to lessen his seizures and regression. He was prescribed almost every new epileptic medicine available, many years combining 3-5 anticonvulsants at a time just to keep him seizure free for a few hours. Robert had a g-tube, corpus callosotomy (brain surgery), VNS (vagal nerve stimulator), and remained on the Ketogenic diet for several months at a time throughout his lifetime. His language was very sparse, but he found ways to communicate through gestures.
His CHD2 diagnosis and mitochondrial disorder had no apparent lasting therapies because energy cannot be therapeutically applied in a direct way. Robert was treated with vitamin therapy, nutritional support, and developmental/educational stimulation. We worked hard to prevent infections, and monitored him constantly for potential, treatable complications.
I do not really recognize myself sometimes now because I am very different from who I was before Robert. I was pretty satisfied with living a life free of much difficulty or pain. I went where I wanted to go, and I thought everyone was “included” everywhere. I was very naive about the inequities for individuals with disabilities and their struggle for inclusion. But there are a few additional things I have learned along the way.
I have reconciled that there were some medical “brick walls” that I could not kick down, even though I tried in every way possible. (I am just not that good!)
I have learned that as a parent who cared for my child with disabilities, my time, energy, focus and finances were sometimes just spent.
I have accepted that my privacy was compromised as other caregivers came and went in our home, sometimes finding me still in Robert’s bed with him following a night of seizures.
I am grateful that as we embraced with our arms the caring of Robert in our home that decision caused our entire family to become less selfish and more effective advocates in our community. Characteristics that I could not have adequately taught or mirrored for our children without the privilege of caring for Robert.
Caring work is hard, and practice is constant. I tried not to fool myself into thinking I could always do it correctly. Robert’s caregivers did not always do it correctly, either. We all grew and changed because it is just the nature of caregiving. You will be changed!
I don’t think the world revolves around me any longer. I believe Robert and caring for him taught me that. The life I now live hopefully reflects one of advocacy rooted in the joys and challenges on my caregiving journey. God redeems everything. My life of caregiving was very unexpected, but worth every minute to become the Juli I am today … an unapologetic advocate.
Listening Library: “Edens: Song Session” (Amanda Cook)
“The Lord will surely comfort Zion and will look with compassion on all her ruins; he will make her deserts like Eden, her wastelands like the garden of the Lord. Joy and gladness will be found in her, thanksgiving and the sound of singing.” (Isaiah 51:3 NIV)
Edens: Song Session
When I doubt what I used to believe And I drown in my anxiety You are here in these waters with me As always My despair doesn't scare You away Nor my demons, my questions, my pain Your compassion outlives all my shame As always, always You are here Closer than the heart in my chest Truer than the thoughts in my head Even in the shadow of death, I know You're with me Here Catching my tears in Your hands Lifting my head when I can't Redeeming in seconds the life I thought was wasted You make Edens out of wastelands When the others have left, You remain Through the highs and the lows just the same 'Cause your kindness outlasts and outweighs As always, always You are here Closer than the heart in my chest Truer than the thoughts in my head Even in the shadow of death, I know You're with me Here Catching my tears in Your hands Lifting my head when I can't Redeeming in seconds the life I thought was wasted You make Edens out of wastelands, oh And you're redeeming everything Everything, everything You're redeeming everything Everything, everything You're redeeming everything Everything, everything You're redeeming everything Everything, everything, oh You make Edens out of wastelands You make Edens out of wastelands You are here Closer than the heart in my chest Truer than the thoughts in my head Even in the shadow of death, I know You're with me Right here Catching my tears in Your hands Lifting my head when I can't Redeeming in seconds the years I thought I wasted You make Edens out of wastelands
Writer(s): Amanda Lindsey Cook, Hunter Thompson, Jacob Sooter, Emmy Rose