Lessons Learned from Lifelong Caregiving
When someone becomes a parent, you’re instantly a caregiver. But the 24/7 demands of caregiving decrease as our children grow up—except in the case of children with disabilities. When I got my daughter’s diagnosis during the fourth month of pregnancy, I knew I was looking at a lifetime of around-the-clock caregiving. Sarah is 19 years old now. She requires constant supervision and assistance with daily living tasks. And I have the honor of being her primary caregiver.
When I reflect on my journey as a caregiver, there are some lessons I wish I would have known from the outset.
Years ago, long-term caregiving was presented as a burden rather than a privilege. Over time I have embraced the fact that being Sarah’s caregiver is my highest call and most meaningful purpose in life. As a young mother looking ahead to decades of 24/7 caregiving, I wish I would have understood that caregiving is a joyful, fulfilling role. It’s rewarding like no other calling.
Caregiving also reveals your character. I’ve discovered that I’m stronger than I ever expected myself to be. The demands of caring for an adult child with intellectual disabilities require a tremendous amount of patience, emotional resiliency, and physical endurance. Sarah has given me those gifts and I am extremely grateful to her and to God for developing those characteristics in me. Not to say that I never get it wrong….
But I’ve learned over the years that when I do get it wrong, I can find God’s grace. Every day brings with it opportunities to do better—to apologize for mistakes made and to analyze future decisions. When I feel like I’ve failed, I bring those regrets to God in prayer, and I make intentional plans for moving forward in ways that best serve my daughter. That might mean making changes in Sarah’s routines or making changes in my own so that I can be a better caregiver. Either way, moving forward is critical so that both Sarah and I can thrive.
When you’re the parent of a child with a disability, thriving requires developing healthy habits—spiritually, physically, and socially—to renew your resolve and strengthen your spirit.
Being part of a faith community, spending time with God in prayer and in the Bible, getting regular exercise, and sticking to a regular bedtime (for both Sarah and myself) have all been important habits that help us stay happy and healthy.
There are times when we go out with friends and I’d like to stay out past Sarah’s bedtime, which is early, but I know that if I do, it will throw her whole routine off balance and result in negative behaviors. So, we say no to some good things—like visiting with friends past a certain time—so that we can say yes to better things—like a positive outlook on the next day.
Sarah and I are part of a wonderful ladies’ Bible study that meets weekly. Every woman in the group loves Sarah, and she thoroughly enjoys the fellowship. Being part of such an encouraging group of women helps both Sarah and me find joy and feel supported regardless of our circumstances.
There will be moments when you need encouragement, because the daily demands of disability often require dying to self.
I recall a moment when I had a decision to make: accept a ministry opportunity that I had been hoping for, or keep Sarah as my priority and decline the opportunity so I could do the best thing for her. It sparked selfishness in my heart, and working through it ultimately molded my character a little more into that which is Christ-like.
It was a chance that only comes along once. And yet I knew I would have to decline. As the single mother of a significantly disabled daughter, saying yes to once-in-a-lifetime opportunities is close to impossible.
I worked through my short list of people I trust with Sarah’s caregiving routines and came up short. No one was available. Someone else would end up receiving the blessing I longed for.
That’s when I felt that old, familiar sin creeping into my heart.
If Sarah didn’t have Down syndrome and a slew of other genetic abnormalities, I’d have more options. Other mothers my age are beginning to enjoy their empty nest; my nest will never be empty. I’m stuck on the sidelines—watching other moms enjoying their new-found freedom while I spend another day, week, month, and year at home.
It’s not that I’d change anything about Sarah. Not at all. Sarah is who she is because she has Down syndrome—fearfully, wonderfully, even miraculously made in God’s image—and I wouldn’t have it any other way. My biggest struggle isn’t the endless medical appointments, frustrating school meetings, or inhospitable stares from strangers. No… what eats me up is that nasty spirit of comparison, taunting me with “if onlys” that try to trick me into believing my life would somehow be better if I wasn’t Sarah’s primary caregiver.
The reality is that while other women are out there climbing mountains, taking classes, and going on trips, I stay home and orbit around Sarah’s highly structured routine so my daughter doesn’t end up hurting herself or others.
My assumptions about how great other moms’ lives are can get the best of me. That’s what jealousy does. It lies to us—and we end up marinating in our own disappointment and missing out on the joy set before us.
When I feel myself spiraling down into that ugly pit of comparison, that’s when I remember Psalm 16, especially verses 5 and 6.
“Lord, you alone are my portion and my cup; you make my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.”
That’s right! The boundary lines of my life aren’t necessarily better or worse than those who don’t live with disability, they’re just different. Sure, there are things I don’t get to do because I can’t always find anyone to help me with Sarah, but there are so many things I experience because of her. Like the beauty and sanctity of human life, the daily depiction of true equality in the body of Christ, and the fulfillment of my God-given calling. Because here’s the thing… Jesus himself decided that I’m the perfect person to be Sarah’s primary caregiver. And as I embrace his call on my life, he fills me with joy in his presence.
“Therefore my heart is glad and my tongue rejoices,” as it says in Psalm 16:9. Sarah and I are flourishing within these boundary lines that God drew around us. And you can flourish, too. Do your boundary lines include disability, disease, or depression? Keep your eyes always on the Lord. With him at your right hand, you will not be shaken. And “fight for your joy,” as Joni Eareckson Tada likes to say. That’s when you’ll find that the Lord—and that loved one he’s entrusted to your care—are your greatest blessings of all.
-Written by Shauna Amick
Care for Caregivers
After years of caring for her mother with multiple sclerosis (MS) Rebekah founded the Caregiving Support Network to provide caregivers with Christ-centered respite, community, and encouragement. She joins the podcast to offer help and hope to caregivers, and the communities called to support them.
