If you are in any way connected with people with special needs, and especially if you are a parent of someone with special needs, I highly recommend a book that was recently published called The Life We Never Expected. This is written by a pastor and his wife, Andrew and Rachel Wilson, in response to the onset of a regressive autism in both of their young children. Though the particular special needs of my daughter are not the same as those of the Wilson’s, I resonated deeply with their story and struggle, and appreciated both their raw honesty and their determined hopefulness.
In one of the early chapters, Rachel writes about fake battles versus the true battle. The fake battles, she says, are all the urgent tasks and struggles that feel vital but are actually peripheral–all the phone calls and researching and filling out applications and pursuing government services that inevitably come into play in seeking to care for a child with special needs. All of those battles, she says,
can distract me from the true battle, which, more often than not, is not fought that way. Frequently, the weapons of the true battle include silence, prayer, thought, clinging onto a recently read Scripture passage with my fingernails, singing through gritted teeth, reading a prewritten prayer out loud, reaching for Jesus through the mist of confusion or unanswered prayer, stilling myself in his presence, and remembering that he is good and faithful and kind…. I love my kids most not by loving them the most but by first loving God. As soon as I take my eyes off him and my attitude falters and I begin to believe that I alone must push for them and control their destinies, the unbearable weight of playing God soon becomes apparent.
I need to be reminded (often!) that it is not up to me to make change happen in my daughter. And I need to be reminded that I can still be loving God even when I’m coming to Him out of exhausted determination rather than joyful devotion. The true battle is to find my joy and hope in God, rather than seeking to find it in therapies and medication and government aid and heroic parenting.