Uncertainty and Lack of Control: What’s a Caregiver to Do?
“I can’t.” I sat in my office one morning a few weeks ago and sobbed as my daughter rubbed my back. “I just can’t.”
Only one of the vehicles needed for our family of 4 adults and 2 kids was in working order.
The washing machine quit.
The drywall crew working on our 5-months-behind-schedule home addition had delivered more bad news.
“I just can’t.” I sobbed.
“You don’t have to do a thing,” my daughter reassured me.
Which was good. Because really and truly, I couldn’t. 12 months of pandemic life combined with 12 months of the addition construction encroaching further into our limited living space had reduced me to a blithering puddle of snot and tears.
“Are you feeling better?” my daughter asked an hour or so after my breakdown.
“No,” I said, “and I may never feel better again.”
“That’s okay,” she replied. “You don’t have to.”
It took me the better part of the morning to regain my equilibrium and the better part the day before I could reflect on the despair that had engulfed me. The last time I had felt so hopeless, I realized, had been almost 39 years ago when our son had been 2 months old. Though the circumstances were completely different and separated by almost 4 decades, the reasons for my despair were the same: uncertainty and lack of control.
39 years ago, my 2-month-old son and I were being flown to a hospital over 700 miles by Life Flight. He needed life-saving surgery to correct complications caused by the life-saving surgery he’d had at birth. Tears streamed down my face as I peppered the doctor on board with questions. “Why did this happen? How will they fix it? What more could go wrong?”
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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. 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 at Amazon.
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