Moving On

“Let not your heart be troubled.”
John 14:1

We are now ten days away from James Bruce’s scheduled move to Rainbow Omega, his long-term residential facility for adults with intellectual disabilities. We’ve ordered his new bedroom furniture, purchased new bedding and bath items, and are moving down a checklist of essentials to move with him. Every item has to be labeled and an inventory provided to the staff upon arrival. His younger brother’s vacant bedroom is set up as our move and staging area.  The room is quickly filling up. So are my anxieties.

I’ve written a number of times before on chronic sorrow. Chronic sorrow, often referred to as "a living loss," is the presence of recurring intense feelings of grief in the lives or parents or caregivers with children who have chronic health conditions. At its core, chronic sorrow is a normal grief process response that is associated with an ongoing living loss. It is the emotion filled chasm between "what is" versus the parents' view of "what should have been." Because the "living loss" doesn't go away, chronic sorrow may stay in the background while the family does their best to incorporate the child's care into their usual routine. If a medical crisis or life event occurs which magnifies the loss and disparity between reality and the life once dreamed of, it can trigger a return of the profound sadness. Left unchecked, chronic sorrow can lead to anger and depression that then consume the much-needed emotional resources required for constant caregiving. Chronic sorrow isn't limited to parents whose children have special needs. Caregivers of family members with Alzheimer's disease, dementia, addiction, couples experiencing infertility, and chronic degenerative disease patients may also suffer from chronic sorrow.

My current state of heart is a toxic mixture of fear, worry, guilt, and strangely enough, gratitude. Bruce and I have been actively pursuing James Bruce’s Rainbow Omega placement for the last two years. We realized at the outset that securing a Christian group home placement for him was a long shot. At the time of our application, there were fifty applicants, but only four available slots.  We waited months in silence, not knowing if James Bruce had been accepted or not. I wanted to call; Bruce wanted to pray. And so we prayed. Finally, our call came in December 2019. James Bruce was scheduled to move in February 2020. That gave us 6 weeks to prepare him – and us- for the move.

Our extended family, close friends, and church community joined us in praying for James Bruce’s transition. Bruce and I prayed that God would sovereignly close the newly opened Rainbow Omega door if the move wasn’t the best thing or the right time for James Bruce. I never dreamed that the door would actually close, but February arrived with cold rainy weather, a construction delay, and the Covid pandemic. Suddenly I was grateful for closed doors.

Most of us handle change better when we are prepared. What’s true for us as typical adults is even more so for individuals with autism. Bruce and I are talking to James Bruce daily about his upcoming move, even describing it as his “college.” Yesterday morning, however, as Bruce and James Bruce were heading out the door for church, James Bruce suddenly turned to me and said, “We can live here forever?” And with his words, I came unglued. James Bruce’s brown eyes, level with mine as he spoke, had that fearful “deer in the headlights” questioning look that shot an arrow straight through my Mama heart. It was a look that I will never forget.

“We’re going to live here for now,” I said gently. “And you’re going to move to Rainbow Omega in a few days. That’s going to be your new home.”

James Bruce’s “We can live here forever?” pleading question haunted me and kept me near tears all day yesterday.  But throughout the day I also kept remembering the wise counsel of author Elisabeth Elliot who once when asked “How do I know God’s will for my life?” responded quickly with, “You discipline your emotions and do your next thing.”

And so I pray “Lord, help me to discipline my emotions and do my next thing.” Packing to move or unpacking to stay if the door should close, praying for God to direct each next step.

This morning Tim Challies had a poignant Homesick post regarding his longing for heaven after the sudden deaths of his father and beloved son. Challies’ article resonates with me in this season of change.  

“We all know what it is to be home. Home is the place of safety, the place of security, the place of familiarity. When we have ventured far, we long to return home, for we know we always leave behind a part of our very selves. No matter how joyful a vacation, now matter how wonderful a journey, home always draws us, it always beckons us to return. It is at home that we are always welcome, at home that we love to celebrate, at home that we are most authentically ourselves. Nowhere offers more comfort, nowhere offers more joy, more peace, more love, than home.”

Ultimately I know that this move, while painful for all of us, is the best solution for James Bruce’s long-term care. The grief I am experiencing is no longer chronic, but acute. Over it all is God’s sovereign, sufficient, and sustaining grace.

Great is His faithfulness!