When God doesn't Throw the Rescue Rope

Part Three of Special Needs Children grow into Special Needs Adults (This is for the Caretakers)

I have heard many miraculous stories of how God protected or prevented some people from certain experiences or outcomes. I know divine intervention is biblical. The apostle Paul says that the “Holy Spirit prevented them from going to Asia.” But I still question the claims of protection of some people and the seemingly non protection of others.

Father Greg Boyle, in an interview with Kate Bowler, said he does not believe that God protects him, but that God sustains him. The interview comments section was flooded with people confirming that this protection idea is troubling when they themselves had lost a child or family member in horrific accidents. It makes no sense to me that God chooses favorites. He can, but does He?  Father Boyle’s statement resonates with me. That is how I view my relationship with God.

He sustains me

The Rope

Many years ago, we were going through a very difficult family situation.  I had no idea what to do and how to move forward.  I was sitting on my back patio, where I often sat in the early mornings reading scripture, praying and writing in my journal.  I was distraught as I sat there in silence asking God “Where are you? Why are you not helping me?” I began to envision myself in the middle of a large lake treading water.  I wanted to sink down, down where it was quiet.  As a little girl, I loved to play tea parties underwater in the swimming pool.  I would push myself under while trying to sit on the bottom pretending you are drinking tea. Down there I could barely hear the noise on the surface.  All was muffled. That’s what I wanted now. I wanted the noise of the crisis to be muffled.   I started crying and I remember just saying to God “I am out here in the deep. I just want to sink.  I want to sink down, down, down so it is all muffled and quiet.  But I also want to be rescued, I just need someone to throw me a rope.  So God…., WHERE IS THE ROPE? NO ONE IS THROWING ME A ROPE!”  

Photo by Spenser Sembrat on Unsplash

And the tears just began to fall as I sat there.  

As I sat there, I heard the still, small voice that God used to speak to Elijah. I heard God’s voice tell me “Janet, I am not throwing you a rope, BUT I am giving you the strength to swim to the shore.” It was not an audible voice but just an inner voice speaking so loudly to me that I began to cry in a different way .

 It wasn’t the answer I was looking for, but it was a comforting, uplifting answer. He was going to provide the strength I needed. A few weeks later, in a weekly reflections email from Ann Voskamp, she referenced a flash flood rescue.  If someone in a flash flood is clinging to something, like a tree, you don't throw them a rope or they will be swished off downstream.

From that day, I changed how I approach God.  Not necessarily for His protection or intervention,  but for His sustaining power in my life.  

That is how I have survived the two years since Victor has come to live with us.

The Move In

When Victor moved in, we soon began to realize that we were going to need a bigger space. At the time we were renting a small duplex and enjoying the walkable neighborhood we lived in. We were near restaurants, coffee shops, grocery stores, even the church we attended. We loved it. I also knew that at some point Victor could need much more care than what we could provide as he aged. What if he outlived us"? .  

I began searching for programs for special needs adults. I spent hours and hours on the phone. One phone call led to another which led to another. Each person I talked to was kind but if you have ever dealt with governmental bureaucracy then you know the system can be challenging. I made calls to Medicaid, Medicare, Social Security, and the local Human Services department, trying to understand what Victor had in place and what would be available. One lady in particular at the Medicaid office said “Honey, grab a pen and piece of paper. I’m about to explain all He has and what it means.”

I had the same experiences at other places. I felt God continually guiding me from one phone call to the next. Sometimes that is what it is. Step by Step.

I learned that Victor would need to be evaluated at our local Human Services department. That led me to contact the school he attended from 1967-1978. They sent me paper copies of his record. That was very helpful information. I learned many things about Victor's beginning diagnosis that I did not know. In a few weeks he was approved. But I still did not know what approval meant.

By now, it had become very apparent that we must stay in Louisiana or risk losing Victor’s government assistance. So, we began looking for a bigger house.

House Hunting

Victor was a handful. Our small house did not give us any room for ourselves. Victor constantly watches TV and plays on his iPad. We like to listen to music during the day. Our son was planning a wedding. Now we were looking for a house which is a nightmare in the best of worlds. I was a nervous wreck. We came down to a choice between a new build that would take another eight months and a much larger home that needed work. The second home had a great setup for Victor on one side of the house that could be his “domain.” 

We put in an offer, though my husband did not want to. It needed a lot of updating. I envisioned grand ideas of all my kids and future grandkids visiting and hanging out for the holidays. I dreamed of enough space for separation from Victor's constant TV watching.

That night I could not sleep. I was filled with anxiety over the work that needed to be done, the cost of remodeling and the size. When the agent called the next day to say our offer had been accepted, I said “Is it too late to back out?” The agent said she was surprised we had made an offer on the house at all. We went back for one last look and decided on the new build.

But then the builder at our chosen house became rude and intransigent in discussions over commission. We could not work with him, and the deal soured. We resubmitted our offer on the larger house against four others.

Once again, I could not sleep. All my original anxieties about buying the house reemerged. The next day, I decided to take a long walk around the local park and listen to a podcast. After an hour or so, I found a seat on a bench that overlooked the bayou. I watched the geese float by, and I prayed. “Lord, I know this is a mistake. I know this house is too big and it’s going to cost more money to remodel. We don’t need this house, please don’t let us have this house!” I begged because I knew that we could not withdraw again. My heart was racing, and I just sat there on the bench. Then the realtor called.

“Well Janet…, CONGRATULATIONS!  Your offer was accepted”. 

I just sat there, looked up at the sky and said, “Really?” I think sometimes we use God to verify our prayers.  When we get the answer we want, we say-God did that for me.  Other times we don’t get the answer and we question if God is listening.  I wonder if  we have learned a false way to approach God in our desperate circumstances. It's another ‘grey’ area I am contemplating.

The next several months were spent remodeling and preparing to move.  The remodel was a nightmare as always, and it took three months longer than anticipated.  When we finally moved in the kitchen was still not finished but Victor had his own space and so did we.  

However, Victor still just stayed in his room watching TV and playing on his IPAD.  

BINGO—GODS GUIDANCE

Our physical space was fixed. But we needed to find a more social and challenging situation for Victor, one that would push him to enjoy life. We needed to end his isolation. We needed to end our isolation. We needed another rope it seemed.

One morning, I was going through junk mail and I came across a community magazine, those annoying mailings that are 90% advertisements. But being new to the area I decided to see what they have going on.  I found a picture of the Wednesday Bingo group for Special Needs Adults(see part two).   It looked like a good opportunity for Victor to meet some friends and get out of the house.    Every Wednesday this group gathers and plays bingo for one hour.  I went into Victor’s room and said, “Victor, how would you like to go play Bingo with some new friends?”  He looked up at me, held out his hand in the “stop” position and said. 

“I DO NOT PLAY BINGO!”   

and I said, 

“YES, YOU DO!”   

New and unfamiliar environments are uncomfortable for Victor, more so than the rest of us.   We went to our first game and sat at a table with a Downs Syndrome girl and her mom and dad.  They were very friendly and at the end I met the person who oversees coordinating.  The next week we went back and sat at another table.  The people at this table were not related but they were brought by their caretaker.  I learned that most of the special needs adults were brought by caretakers.  

Throughout the week these caretakers coordinate various activities for their clients.   They attend exercise classes, go to movies, various therapy appointments, acting classes etc.  They each have a full range of activities to get them out of the house and into the community.  Most of them have attended school together since they were in kindergarten.  

I introduced myself and our situation.  They asked me what kind of Waiver I had.  I said, “What’s a waiver?”  Then began the explanations. One of the many explanations that would pour out over the months. From strangers. From new friends. There was no guide book. But there were people. People strung out in a way that just sustained me.  

Bingo folk told me I needed to contact the Human Services department.  I mentioned that I had recently gotten victor approved for something through another Human Services department.  Each parish(county) has their own Human Services, and we were in a different parish, not the right parish. Human services informed me I needed to transfer his file. Then, once again, I hit the bureaucracy wall. Each person passes me off to someone else and then a “let me take your number”.

My Bingo friends said I needed to be very persistent and keep calling. One parish said the other parish needed to initiate. The other parish said it was the other parish’s job. You get the drift. Hours of phone calls, lots of voices, contradictory information. I was at a loss.  

My new friends had also told me to reach out to the local Families Helping Families and something called the Able Club. That phone call led me to a free advocate for disabled children and adults who gave me great advice. With that encouragement, I kept calling Human Services. And kept calling.

Waivers of Mercy

One morning I sat in my little office, wrote in my prayer journal and once again cried out to God to show me the way.  To lead me to someone who could help me navigate this system.  Later that morning, I called the number I had been given and it went directly to the name of the person I had been given.  This in itself was amazing. I started explaining what I needed and then I just broke down and cried.  I could hardly talk through my sobs.  I was treading water again. I needed God's strength to get to shore. I told her that I had been praying that morning that God would send me someone that could help me navigate. That’s when this kind lady said…, 

“Janet, calm down honey.  Let me tell you something.  This is a God thing because I am the supervisor of this department and normally you would not be speaking to me but one of the people who work under me.  I’m going to tell you exactly what you need and then I am going to have one of my workers call you and get this going.”  

This is the sustaining power of God at work.  Once again, I was drowning and there was no one coming for me.  I needed strength. I needed to know that God was listening.  This time the still small voice came through the voice of a person on the other end of the phone.  

The next day, I received a phone call from a gentleman who said he had been assigned Victor’s case. He was actively working to get his file transferred from the other Human Services department. Then I began to learn just what a waiver is and what waiver I needed.  Finally.

Caregiving can be lonely and hard.  It also changes us because we go into deep waters and return to the surface with something that can only come from the deep.  Henri Nouwen¹

We were given the name of a community day program, STARC of Louisiana .  As we sat in the meeting room, Victor was very agitated and said many times he did not want to be there.  He needed to be at home to do his work (which was watching tv and sport commentators.).  The supervisor of the facility was so creative in the way she befriended Victor and showed us around.  By the time we were ready to leave, she asked Victor if he had changed his mind about coming to hang out with them?  Victor then said, 

“Well…., I will think about it”.

 He was slowly beginning to see a new opportunity for having friends.  We were added to the waitlist in January of that year and by April he was in.  I thought three days a week would be plenty, but soon Victor was wanting to attend every day.  We still attend our Bingo group on Wednesday afternoons.  Victor loves STARC and he loves his new friends. His isolation is over. Finally, we have the space we need. A place to retreat. A place for friends. A place to grow

Our Bingo group Christmas Party

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Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and the God of all consolation. Who consoles us in all our affliction so that we may be able to console those who are in any affliction with the consolation with which we ourselves are consoled by God. For just as the sufferings of Christ are abundant for us, so also our consolation is abundant through Christ.—Paul the Apostle

When I say this process was guided by a sustaining God, I cannot explain it any other way. 

• It started with a house I asked God to not let us have. 

• Which led to a random community magazine.  

• Which led to a bingo group. 

• Which led to Families helping Families.  

• Which led to our local Human Services.  

• Which led to the Day program Victor attends.  

And the other great part?  The community day program is only five minutes from our house.  

The still small voice of God. I do not see divine protection in this story, at least not in the sense that so many tell me I should. But I do see His sustaining power day after day. Delivered by people of his choosing. Not a rope. But just enough to sustain me, to give me the strength to get to shore.  

I recently had lunch with a new friend. As we sat getting to know one another, I shared with her our life with Victor. She looked at me and said, “So, you are a caretaker.” I had never thought about that label. Victor is my brother. I was doing what I thought was necessary. It was hard at times. At times we are drained. At times, I am angry that I must repair issues that my family never seemed interested in.

In Henri Nouwen's book, Hope for Caregivers¹, he says, “If prayer is grace, and God comes to us on divine initiative, perhaps our deepest prayer is not for God’s action, but for God's presence. Our spiritual life makes us ready to welcome God into our stories.” 

God has been in my story throughout all the changes. He has shown me the joy of Dancing with Victor. He has shown me His presence through the comfort of others. He has given me strength to swim to the shore when it seemed I was drowning. 

“The deep fear behind every loss is that we have been abandoned by the God who should have saved us. The transforming moment comes when we realize that even God has left us. We then discover it was not God, but our image of God that abandoned us. This frees us to discover more of the mystery of God than we knew.” Craig Barnes(Former president of Princeton Theological seminary)

When I think of the losses we have endured to become caretakers, I also am reminded that God’s presence has been and will always be there. My image of the God I thought I knew and the God that I am now seeing is transforming my faith. How it is that God's ways are higher than my ways remains a mystery. But it is in the mysteries of the deep waters that He reveals himself.

1. Henri Nouwen