As college classes resume, we are losing a full-time caregiver this fall. Emily is a young woman who intimately knows my daughter, Carly, and has more than five years of experience interpreting the nuances of her moods and behavior. Anyone parenting a child with disabilities understands this transition will alter life for Carly and for us.
Carly is non-verbal. So each of her valued caregivers, our family and some extended family have become extremely intuitive about how to care for her. In fact, sometimes I worry that we’ve become so good at it that Carly doesn’t have to work hard enough to communicate. It’s not just an affectionate nickname when we refer to her as “princess.” Using her dimples and charms to get out of responsibilities is one of her “super powers.”
So here we are needing to add help again and I’m praying God will send us someone incredible. Carly needs friends and helpers who can anticipate and discern unspoken needs. But they also need to know when to challenge her. I will train new staff about diet, medications, toileting, behaviors and other needs. And I’ll pray they aren’t intimidated by the learning process. Carly’s training manual would look like a complex maze of decision-tree diagrams. I’ll admit, my expectations are high. I am always hoping each person will learn to recognize Carly’s signals with attentiveness, compassion and timely response. Realistically, though, no one can fully know what is in her heart and mind.
But God does.
Back in the days when Carly was still bussing to school, she wasn’t always eager to leave the house. On those days, my heart would break a little. I longed to know what was causing her hesitation and I wanted to ease her anxiety. Instead, all I could do was walk her to the bus with comforting words like, “I will miss you. I will see you when school is done. Jesus is with you. You are never alone.”
The first six verses of Psalm 139 say:
O Lord, you have searched me and known me! You know when I sit down and when I rise up; You discern my thoughts from afar. You search out my path and my lying down and are acquainted with all my ways. Even before a word is on my tongue, Behold, O Lord, you know it altogether. You hem me in, behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; It is high; I cannot attain it.
Carly loves music so we frequently enjoy dance parties at our house. One afternoon I paused from work to join Carly and her friend Claire in a dance break. Claire had been working with Carly for a few months and had caught on to her rhythms and communication style extremely well. While trying to coax Carly into a variety of dance movements, I appreciated how artfully Claire was using verbal prompts, physical cues and encouragement to motivate and guide her.
I confess, we often feel like we are tricking Carly into cooperation. A certain genius is required when enticing her to put her head back in the shower to rinse hair, color with a marker, hold open her mouth to brush teeth, walk the direction we need her to go, pedal forward (not backward) on her bike, poke food with her fork or cooperate in dance class.
Actually, all of it is quite like a dance. The leader maintains a firm frame to give clear and confident signals about what is expected from the follower. Both leader and follower pay close attention to the movements of their partner as spontaneous and creative decisions are made to interpret the music as a team. The most gorgeous interpretations don’t just come from good leading and good following. A beautiful performance emerges when the pair finds the ideal complement of individuality and unity.
As caregivers, we’re looking for that sweet spot in the dance of life where the team and the individual are both given space and respect. It’s a place where the nuances of movement between the two and as one are honored. It’s a place where an intimate knowing and connection is made.
Jesus knows my sweet spots and yours. He also knows our vulnerabilities. He knows when we’re falling off balance even before we do. When I serve my daughter and my family most beautifully, it’s because I’ve been attentive to His lead and followed Him well. It’s also because I’ve celebrated my own strengths while leaning into God’s perfection. I can’t just technically follow His directions like a robot. To live, love and care well, we need to rest in the relationship—in God’s confident and comforting gaze. He doesn’t take His eyes off of us. It’s reassuring when we keep our own eyes fixed on Him.
God knows perfectly how to lead us in this complex and demanding “foxtrot” because He created everything about each one of us.
God knows our children’s unique and complex needs, too.
Our frames (body, mind and spirit) are intricately and wonderfully woven by God for Kingdom purpose even before we were aware that a dance was about to begin.
For you formed my inward parts; You knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; My soul knows it very well. My frame was not hidden from you when I was being made in secret…In your book were written, everyone one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16
I pray that you are hearing the music today. May Jesus sweep you into an increasingly exciting and elegant experience of caregiving.
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.
