The time warp that is disability caregiving is a concept that came to me in the middle of the night. Before you categorize me as a crack pot, be assured of this:
The thought was not caused by alien abduction.
No zombies came into the bedroom and made a midnight snack of my brains.
Ditto for vampires turning my blood into an iron-rich smoothie.
Rather, the thought was the direct outcome of speaking at a trauma-informed conference yesterday. The conference was aimed at educators and mental health professionals. The percentage of educators to the mental health professionals was at least 60/40. Maybe more. As a former teacher, I enjoyed spending the day talking with "my people."
One of them, a sweet young teacher, asked, "How long did you teach?"
"Twenty-five years," I said.
"When did you leave the field?" she wanted to know.
"In 2003," I replied.
"Wow!" Her eyes widened. "That's twenty years ago.
"What?" I thought. "Twenty years ago? Why does it feel like yesterday?
The answer to that question came in the middle of the night. I sat bolt upright in bed, awakened by a wholly formed thought.
Because of the time warp that is disability caregiving.
And where did that thought come from?
After setting aside my theories about alien travel guides, zombie foodies, and nutritionally-minded vampires, I pinpointed the real source: my personal experience with caregiving.
The first twenty years of my life, when our family cared for my disabled father in our home and watched him slowly fade away, still feel like a hundred.
The first four years of our son's life, a litany of ambulance rides and surgeries and medical procedures and doctor's appointments and medication and sleepless nights and wondering if he was getting enough nutrition, still feel like fifty.
My two intense caregiving periods in the past twenty years—our son's diagnosis and treatment for post-traumatic stress disorder, and walking my mother through the last two years of her life—feel like they occupied the lion's share of the past two decades. Far more the the time spent celebrating at our children's weddings, welcoming and getting to know our four grandchildren, writing and promoting ten books, as well as downsizing, moving, and renovating a new home—in the middle of a pandemic.
Personal experience taught me that disability caregiving is a time intensive and worthy endeavor. It is emotionally intensive as well, filled with grief, fear, uncertainty, frustration, overwhelming love, and guilt. It pervades every aspect of our lives—our faith, our relationships, our careers, our finances, our ability to exercise, eat right, and get enough sleep.
The time warp that is disability caregiving is the hardest thing you will ever do.
It also the best thing you'll ever experience, the holiest act you will ever perform, the purest love you will ever demonstrate, the most Christ-like sacrifice you may ever make.
Photo credit: Aron Visuals on Unsplash.com
Even so, it is the hardest thing you will ever do.
Do you know what? It's okay to admit that.
Jesus himself said as much in the Garden of Gethsemane the night before he died. “Father," he said in Luke 22:42, "if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done.” He then prayed some more, sweating blood in the process. He knew what was coming was hard.
Now, I am not equating Christ's death on the cross to disability caregiving. What I am saying is that caregiving is a sacrifice, a sacrifice that warps our perception of time.
However the time warp that is disability parenting like all earthly things, is under the control of our risen Lord. No matter how long our stint of caregiving feels, it is temporary. When compared to the eternal life won by Jesus for those who believe in him, it is a breath, a whisper, a passing shadow.
Feelings, and time, are fickle. Truth is forever, and I hope this truth from the Apostle Paul speaks to your heart:
in a moment, in the twinkling of an eye...we shall be changed...the perishable puts on the imperishable, and the mortal puts on immortality...Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain. 1 Corinthians 15: 52, 54, 58
This is hope you can cling to when the time warp that is disability caregiving distorts your perception of reality. However long your caregiving season is, it is not in vain. One day—in the twinkling of an eye—you, the loved one in your care, and your present situation will change. Time will vanish, you will be with your Savior, the best will begin, and it will never end.
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.
