"Crying, grieving and wondering ‘what if’ are all inevitable; it’s time we stopped feeling guilty about it."
The sun was bright that July day, the lake was still, and the air was thick. I stood with my son in the long check-in line of junior high campers and parents. It was then that the thing hit me. My face grew hot. I was thankful for the sunglasses that hid my tears. I swallowed hard and took a deep breath, trying to shake free of it, but there was no escape. Choking back tears, I forced a smile and whispered to my son, “You realize, if things were different, I would be checking Annie and Audrey in to camp now too.”
His eyes widened. “You would?”
I stifled my cry with laughter and gave him a quick hug. “Annie and Audrey are going into junior high this year too.” And there it was, this thing called “chronic sorrow.”
Susan Roos defines chronic sorrow as:
“A set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of crucial aspects of oneself (self-loss) or another living person (other-loss) to whom there is a deep attachment. The way in which loss is perceived determines the existence of chronic sorrow. The essence of chronic sorrow is a painful discrepancy between what is perceived as reality and what continues to be dreamed of. The loss is ongoing since the source of the loss continues to be present. The loss is a living loss.”
Chronic sorrow is heavy. It shows up boldly and uninvited. My husband, Kirk, and I are parents of medically fragile children, so we can identify with parents of children who have physical and intellectual disabilities, children who will always be dependent for care. But chronic sorrow can also affect the person caring for a loved one with Alzheimer’s or any condition that is chronic, debilitating and incurable. Circumstances vary, but the moments of inexplicable grief that suddenly grip us are a common bond.
Ever since those sleepless nights over a decade ago when I shook my fist at God and screamed, “This is all I can handle!” the Lord has challenged me to do specific things to keep me from drowning in self-pity. Sometimes, perhaps for fear of being judged pretentious or boastful, we resist sharing the positive and proactive things we do that help us walk a difficult path well. But we’ve learned that it takes more than just being positive. So here are a few things we strive to do which are helping us navigate the uncharted waters of “living loss.”
- Trust and obey God. My pursuing academic degrees has cost us, but has also given us clear direction.
- Discuss the new things Annie and Audrey are doing, remember the hard things, and laugh about the messy things.
- Speak of God’s goodness, and admit our mistakes and failures. We treat our girls with dignity and respect, as if they understand our intentions (even if we think they don’t), placing them in the position of “special honour” (1 Corinthians 12:23).
- Apologize to our kids and to each other, in front of them if necessary.
- Encourage each other’s need for hobbies, exercise and time with friends.
- Say thank you to each other for doing everyday mundane tasks.
- Spend time in the Word of God, and pray for others.
- Facilitate Annie and Audrey’s need to worship, to be part of the body of Christ.
- Exercise our spiritual gift of hospitality.
- Tithe regularly and give intentionally.
Endless responsibilities deplete us, and moments of chronic sorrow surprise us. Like many caregivers, our daily responsibilities include troubleshooting symptoms, assisting with personal care, keeping prescriptions updated, and scheduling respite workers. Crying, grieving and wondering “what if” are all inevitable; it’s time we stopped feeling guilty about it. We love Annie and Audrey just as they are. We believe we are better for having them in our lives. But we also wish that tuberous sclerosis would be cured, and that the seizures would stop. Imagining a different life is natural because humanity was created for eternity. As followers of Jesus, we know there is more. We, like others who have this hope, revel in the idea that our loved ones will not be disabled, confused or in pain forever. We look forward to the day when we will know them fully. This is the hope we have in Christ.
In spite of this living loss I walk on, following the Good Shepherd, “casting all my cares on Him because He cares for me” (1 Peter 5:7), practising kindness and begging forgiveness. I don’t have it all together, but I have peace, knowing that I am exactly where God wants me to be and that He knows where I am headed. I lack nothing, and I am continually guided along the right path. He is here. Amid the storm of living loss, pastures are green, the waters are still, my soul is refreshed, and I am not afraid.
When a moment of chronic sorrow washes over me like a heavy wave, the supernatural peace of God follows in its wake. I catch my breath and cry for help. As always, the Holy Spirit is there, throwing me a lifeline—a friend who will listen, a hand to lend me help, a verse of Scripture to ponder, or a child to hug.
. Susan Roos, Chronic Sorrow: A Living Loss (New York: Routledge, Taylor and Francis Group, 2002), 26.
Andrea Foster lives in Brampton, Ont., with her husband, Kirk, and their four kids. She is pursuing her MEd in Disability Studies and is passionate about disability ministry.
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This article appeared in the November/December 2016 issue of testimony, the bimonthly publication of The Pentecostal Assemblies of Canada.