As our Homecare Advocate readers know, Joni & Friends is near and dear to our heart at Lambert’s. We participate in Joni & Friends activities and mission trips, and we recently sent our ATP Wheelchair Specialist to Guatemala to assist in distributing appropriately fit wheelchairs to those in need via their Wheels for the World program.
When we came across this moving letter written by Joni’s husband, Ken, on the secrets of being a good caregiver, we knew we had to share it with you. He titles this open letter, “Caregiving: A Cause for Christ“:
Lots of people agree: I have a beautiful wife. With her ready smile and engaging personality, most people hardly notice her wheelchair. And when they learn that she writes books, travels extensively, and leads a dynamic ministry to people with disabilities around the globe, they’re amazed. To most of the world, Joni Eareckson Tada doesn’t seem disabled at all.
After almost forty-five years of quadriplegia, Joni makes having hands and feet that don’t work look easy. I love that about my wife. I like that she doesn’t make a big deal about her spinal cord injury but simply moves forward into life, leaning hard on the grace of God. Everybody says the same: Joni seems “normal,” someone who is not defined by her disability.
I wish it were that simple. Actually, Joni does, too. Most people have no idea what it takes for my wife to simply get up in the morning. It’s nearly a two-hour routine that includes giving her extensive range-of-motion exercises and a bed bath, going through toileting routines, putting on her leg bag, strapping on a corset and getting her dressed, sitting her up in her wheelchair, brushing her teeth, and fixing her hair and face. And I’ve just described the abridged version. Plus, don’t assume that at night Joni simply jumps out of her wheelchair and into bed — it’s virtually the same routine as in the morning, except in reverse. Day in and day out, 365 days a year, it never varies—unless Joni becomes ill; then it’s more intensive.
Caring for Joni is something I gladly signed up to do almost thirty years ago when we took our vows on our wedding day. In sickness and in health, for better or for worse, I promised to cherish my wife and take care of her to the best of my ability. Since then, never once have I regretted my decision to marry Joni with her quadriplegia—even in the midst of the many nightmarish ordeals related to her health and the dreary day-to-day routines. I love my wife with a love that is anchored in Jesus Christ. But that doesn’t make it easy.
All relationships have their challenges, but when you add a chronic disability, the challenges can seem overwhelming. You could be a son caring for your father with Alzheimer’s or a single mother coping with your teenage son with autism. You could be the father of a little boy with muscular dystrophy or the wife of a husband who has suffered a stroke. Disability has a way of testing even the best of relationships with daily routines that never vary, social isolation, financial pressures, unmet expectations, and a life that is extremely atypical from most people. Without Christ firmly in the center of the suffering, a caretaker can crack under the pressure of loneliness, guilt, and despair. It is little wonder that the divorce rate in families affected by disability is nearly 80 percent.
I have witnessed the heartbreaking reality of that statistic. Every summer, Joni and I participate in our Joni and Friends Family Retreats. At these events, we have the chance to meet hundreds of families affected by disability; they come for the fun, fellowship, networking, times of prayer, and Bible study. (Next summer Joni and Friends will hold twenty-five retreats across the United States and fifteen in developing nations.) But at each Family Retreat, I’m always amazed at the number of single mothers who attend with disabled children. Where are the fathers? Again, statistics show it’s usually dads who bail out, even in the face of Isaiah 58:7, which says never to “hide yourself from your own flesh.” Ironically, almost none of these single mothers blame their disabled children for their misfortune. Instead, they describe those children as their “biggest blessing.”
After years of caring for my wife, I would say the same about Joni. She is my biggest blessing — especially as I was helping her through her recent battle against stage III breast cancer. The prospect of losing my wife to such a dreaded disease made all the “baggage” related to her disability seem minor. The major thing was rescuing her life. Thankfully, God gave me the grace to put my caregiving skills into overdrive as I stood by my wife through her mammogram, biopsy, mastectomy, recovery, and chemotherapy. I was the companion at her side for countless hospital visits and oncology appointments, as well as her counselor as we sought out second and third opinions.
Lots of people thought God was “laying too much” on Joni, a quadriplegic in her sixties who also deals with chronic pain. Privately, I sometimes wondered if it all might crush me. But once again, by the grace of God, Joni was able to make even cancer look easy. And for me? If anything, the long battle against her cancer strengthened my faith in Jesus Christ as well as deepened my love for my wife. Together, through every PET scan and chemo infusion, Joni and I were living examples of Psalm 79:8: “Let your compassion come speedily to meet us, for we are brought very low.”
Perhaps that’s the secret to good caregiving: a constant awareness of one’s desperate need of Jesus Christ and a steady reliance on Him day in and day out, like breathing in and breathing out. The fact is that when I’m serving Joni, I’m serving Christ, for Colossians 3:23 reminds every caregiver, no matter how difficult or demanding the routines: “Whatever you do, work heartily, as for the Lord and not for men.” When my focus is on Jesus Christ, caregiving may feel extremely tiring, but the work doesn’t have to be tiresome. It’s for Him. I may get weary, but life doesn’t have to be wearisome— again, it’s all for Him and His glory. When I minister to Joni’s needs, I am serving the Savior. That fact is echoed in Matthew 25:33–42, where Jesus says that if we feed the hungry, give drink to the thirsty, and clothe those in need, we are doing it for Him.
Other secrets to being a good caregiver? The enemy is not my wife’s disability (or even my wife when we disagree on things). The enemy is Satan. I’m constantly aware that Joni and I are in the midst of a spiritual battle. The Devil already hates Christian marriage, and if a wife or a husband has a disability, Satan no doubt feels he’s got the edge. But he’s wrong. Second Corinthians 12:9 assures us that God’s power has the edge when we are weak. Weak and needy people are usually more aware of how much they need the Lord. We also need each other — I’m not too proud to ask for help. Thank God for the girls who chip in to help Joni, whether at home or at the office. We couldn’t make it without them. Besides, to ask for help keeps me humble (and humility keeps the Devil at bay).
Another secret to good caregiving is taking breaks and getting exercise. While Joni was going through chemotherapy last year, I was so grateful that her sister flew out to help us. Kathy was able to give me little breaks in the routine so I could go work out — exercise really gets the endorphins flowing, clears the head, and cultivates discipline. Even a walk around the block brightened my spirits.
A key secret to enjoying my role as a caregiver involves friends. Throughout our marriage, Joni has always been supportive of my friendships with several key Christian men who hold me accountable. One friend lives in Oregon, but we pray and study Christian books together over the phone. Another friend lives nearby, and he’s always ready to get together for lunch, play a game of gin rummy, or invite me to the high desert for an afternoon in the fields with his bird dogs. Always, we’re mindful to keep Christ in our conversation, for my friends and I know that the King (as we call the Lord) is the key to genuinely close friendships between men.
One more thing: I have learned the secret of “praying without ceasing.” Caregiving can push you and your loved one into some pretty tight and uncomfortable places. That should be the signal to pray. Whenever nerves are frazzled or we’re ready to throw in the towel, one of us will invariably say, “Stop everything. We both know we’re in trouble. Let’s pray.” Before long, our spirits feel brighter. The air seems clearer and the atmosphere lighter. The burden has lifted, and whatever was harassing us just doesn’t feel as important.
Caring for someone like my wife epitomizes the heart of Jesus, who said, “For even the Son of Man did not come to be served, but to serve, and to give his life as a ransom for many” (Mark 10:45, NKJV). It is my joy to give my life in service to Christ by caring for Joni. For no greater love does a man have for another than when he lays his life down for that person. Sometimes that person may be your disabled wife.
What a lesson for us all.