The last six months has introduced me to a whole other side of disability ministry. It all began with a phone call my mother received within 15 minutes of my arrival for Christmas vacation. My son hurried down the hall, “Grandma needs you.”
Hands filled with items from my suitcase, I didn’t bother looking up. “Thanks, let her know I’ll be there in a few minutes.”
“You better go now. She’s crying.”
Thus began the journey with what we now know to be terminal cancer and my time in desolation. It is all too familiar territory. Diagnosis can be devastating for the caregiver whether for a child or for a parent. There is a relief in knowing what it is, finally, even when the news is not good. And there is grief. Lots of grief. That process muted my voice to the parents whom I try to support.
Dr. Jack Levinson spoke at a clergy breakfast I attended and offered the keys to unlock where I have been trapped. “When in desolation, remember consolation. When in consolation, remember desolation.” My ministry has been one of remembering desolation and offering hope to parents. A voice of experience saying, “Yes, I have been there too. You are going to be alright. More than alright. You can thrive right where you have planted.”
We all move between the spaces of desolation and consolation. Some call it peaks and valleys. How do we breathe, how do we function, whether in the middle, bottom or top?
The key is faith. In the story of Job, we see a person caught in extreme desolation. He had lost everything, family, wealth, status, health. Even his friends abandoned him, save for a few. (Sound familiar?) His truest friends came and sat with him in the ashes, for a time in silence, sharing his pain. Once they spoke up they didn’t always have the most helpful things to say, but don’t we all fumble for the right words at times? Their loyalty was a gift in the hardest of times. Job kept the faith despite his hardships and he came out on the other side stronger for it.
In a way, I think the experience of Job helps explain the bond between parents on the journey with special needs. Our stories are all different, as unique as our children, yet we know at times a sense of desolation. Loss. Grief. But those are balanced with joy of new-found abilities, hope in a future not yet seen, and the peace that surpasses all understanding even in the midst of chaos. The way in which parents reach out to each other offering support and encouragement to one another pours back and forth that cup of consolation, filling in all of the cracks, mending and making us stronger.
When in desolation, remember consolation.
I received a four word text from a friend. I knew instantly that she, too, was in desolation. I immediately called and shared a long, heart-felt conversation. Why? As I read her message I told myself, “Remember consolation.” It turns out consolation makes the desolation not quite as bad.
I waited patiently for the LORD; he inclined to me and heard my cry. He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. (Psalm 40:1-3 NRS)
Consoling God, Like Job, we praise you in good times and in bad, for you are forever faithful. We thank you for those in our lives who remember consolation. Keep us mindful to return the favor. Amen
Image “Bluebonnets” courtesy of Vikki Yost
Dr. Jack Levinson is William Joseph Ambrose Power Professor of Biblical Hebrew and Old Testament Interpretation at Perkins School of Theology and author of several books, including his most recent, 40 Days with the Holy Spirit.
Special Needs Parenting 