Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
— from Oceans (Where Feet May Fail) © Hillsong Music Publishing Australia
I used to stand enthusiastically in church and sing these lyrics without fully realizing what a tremendously radical surrender I was declaring. Then one weekend, while presenting at a women’s retreat, those words hit my mind and heart differently. They hit me rather like a two-by-four, actually. The song changed me and many others in the room.
These women came to the retreat in hopes of finding insight about their personal calling or life purpose. Many were feeling stuck in the mundane routines of parenting or concerns about limitations as they aged. Like any of us, they were finding life and relationships hard. They also felt life was frequently less exciting than they had imagined in their youth that it would be. Some suspected they were doing something wrong because life wasn’t more fulfilling or feeling sufficiently productive.
Jesus, the enemy steals my joy and feeds me lies. I confess to believing that adversity and boredom equate to a lack of purpose or a failure in faith.
Do we really mean it when we ask God to give us a life that matters? When we ask God to show us how strong He is, do we realize that He might use us as His canvas? When we wrestle with the parts of this parenting journey that feel impossible and wonder how long we will be able to hold on to our faith, are we willing to choose trust that we are part of God’s vast and creative Kingdom scheme of things?
Jesus, take me deeper than my feet could ever wander. Wherever you would call me.
Parenting a child with disabilities changes the trajectory of our lives. Followers of Jesus find themselves on a different path of adventure than they would have imagined or even hoped for. We may have aspired to see the power of God and experience growing intimacy with Him. But seldom do we have any idea about what might actually be involved in getting us there.
After the worship set was finished that evening at the retreat, I stepped back to the podium and shared a personal story about how God changed my perspective about the very unexpected and challenging life I was leading as a special needs parent.
My daughter Carly used to struggle with strabismus, an eye focusing and teaming issue. She needed therapies to stimulate her macular vision and prevent her from fixating in her peripheral field which interfered with her depth perception and affected her balance (among many other things). One of her therapies involved wearing “pinhole glasses” and watching high-interest entertainment on television from a specific distance.
Carly’s therapies aimed to bolster the eye-brain connection because doctors understood the problem to be more about her neurology than her anatomy. You might say, the way her eyes functioned were dependent on changing the messages that her mind was giving her body (ocular muscles).
As I watched her wearing those fancy glasses one day, I recognized a metaphor about faith and perspective. Carly’s glasses gave me new perspective about our struggles.
Those glasses limited some aspects of Carly’s vision in order to stretch and strengthen other aspects of her vision. Her brain was learning how to search out and learn new information, perceive differently, and function more effectively. Carly’s life was stretching me to see God’s Kingdom purposes differently. I was developing a Kingdom perspective about our circumstances. I was growing new vision that our situation was God-purposed, God-authored and imperfect, but holy.
Oh my, raising a child with disabilities is so very holy! Jesus, help me let go of needing to see the whole picture and grow a new perspective. I need Your vision and mindset to carry me through circumstances that feel impossible sometimes!
Those song lyrics suggest we are willing to give up absolutely everything—hopes, dreams, comfort, clarity— for the benefit of experiencing a rich and deeply purposed life with God.
My family—much like your own, I hope—has experienced many new opportunities from our experience with disability. While our family experiences chronic medical issues, mental health difficulties and developmental disabilities, each of us has been drawn into relationships we would not have known otherwise. We may have fewer friends than we had before, but many of our existing relationships are richer than they were before. We have different values now. We have unique perspectives on life, love, and priorities than we had before. We appreciate or cherish many things differently than others around us. Our faith is stronger. Our intimacy with Jesus is a life-giving experience instead of a cozy or intellectual concept.
As 2022 approached, my husband and I were feeling the grip and stings of disability on our life. We had been wondering again about some areas of our lives that feel stuck or senseless. We have had moments of ferocious anger with God and/or Carly’s circumstances. We have felt at our wits end with some of her medical issues and behaviors.
Thankfully, God meets us at the end of our wits. He reminds us of this one key fact:
Life is richer for us because disability has turned our world upside down.
Jesus, with each new day give me a fresh vision of the faith adventure that comes with disability!
“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.”
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. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.
