“Oh no! I forgot Finley’s medicine!”
The singing in the back of the van stopped. Three of my kids and I were on our way to our first Joni and Friends Family Retreat, full of excited anticipation as we drove down the highway that sunny morning in August.
But when I made that announcement, the singing stopped. They all knew that we would have to turn around and go back. Finley had to have his seizure medicine! We left the happy caravan we’d been traveling with and grimly headed back home—an hour and a half away. I felt sick. This was one more mess-up. One more disappointment for my kids. This is what happens, over and over again, when you have a child with special needs and an absent-minded mom.
My anxiety (another unfortunate feature in a mom) crept out of the glove compartment and started choking me. “Maybe you should just not go,” it whispered. “This is too much to ask of your kids, especially Finley. And you will have to do the trip all by yourself now. No more caravan to follow!”
Ignoring these whispers, I drove home, grabbed the medicine (which was right where I had left it), and jumped back in the van. But I was now at the mercy of the GPS for directions, and its evil voice told me to get off the highway and take the scenic route to Greenfield, where the retreat was located. And of course, I had to listen to this voice. I had no other map—remember, absent-minded?
We inched our way past Fun Town Splash Town where everyone was having fun, and we were not. We meandered through every little village and stopped at every stop sign between Maine and New Hampshire, and by the time we finally pulled into the camp, we had been in the van for nine hours!
Even though we were so late arriving that it was now dinner time, there were people waiting for us as we pulled up to the Joni and Friends Family Retreat. Before I knew it, the van door was opened and friendly volunteers were talking and helping my kids out of the vehicle. And then, the kind face of our own dear pastor appeared at my window. He volunteers at these retreats, and when I saw him, all my anxiety melted into tears of relief—relief mixed as always with sorrow, because, after all, you don’t get to attend this fun, joy-filled camp unless you have a child with a disability.
Our son Finley is like an infant the size of a twelve-year-old. Adults look away, and children, less concerned about politeness, stare. There is drool. And super loud whooping and hollering in the middle of church. Always, there is this sorrow: sorrow over your son’s disability, over what he will never do, over what he will never say.
For years I had avoided the Joni and Friends Retreat. Pulling in with our minivan that day was like the final step in accepting Finley’s disability. It had taken me nine hours and twelve years to get to this point, and all that sorrow came welling up to the surface and streaming down my face.
The kind souls who greeted me that evening may have been surprised at my blubbering, but they did not show it. They only smiled and offered to help me get settled into our cabin.
I have found, over the years, that Christians are the only people in the world who can offer real hope and real help in the face of the deep sorrow and anxiety of disability. During the early, dark days when Finley was first diagnosed, well-meaning unbelievers would say things like, “Good luck!” “Keep your fingers crossed,” or “Just think happy thoughts!” Finley was not sleeping, he was not eating, he was crying for hours on end, and he was having seizures. Their well-meant words were like ice water in my face.
Then a friend from church gave me a CD of Elyse Fitzpatrick reading Scripture and singing praise songs. One passage she read was Psalm 46: “God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea” (vs. 1–2).
I listened to that CD over and over again. The thought of God on his throne surrounded by joy and beauty, even if the mountains crumbled, truly comforted me. I had an anchor for my soul when everything around me was being washed out to sea.
Another friend from church gave me a bunch of CDs of Joni Eareckson Tada’s radio program. I listened to those over and over again, too. Joni taught me that caring for a person with a disability is serving Christ. That was my first real ray of hope. The Lord was giving me the honor of serving him in this way! Joni sang hymns to me while I washed dishes and wiped drool. She reminded me of wonderful promises from God’s Word. She took my thoughts off myself and put them on Christ.
My church family not only offered me real hope but real help. They rolled up their sleeves and brought meals, ran errands, even cleaned out my fridge (an act of true love!). They watched our other kids when Finley was in the hospital. One friend came over and planted tulips in my yard. Another friend gave us a box of granola bars every Sunday. In later years, when things had settled down a bit, a friend came over once a week and played with Finley so that I could vacuum upstairs.
When it became clear that Finley would not walk, the church installed a lift so that he could attend Sunday school. A friend offered to go with him to his class, so that I could have a break. My church family has helped take care of Finley again and again, even sometimes overnight. When we had to move to a house with downstairs bedrooms, my kids counted seventy people who helped either with the actual move, or with cleaning, or with babysitting—all from our church! They have been, as Joni says, “the hands and feet of Jesus” to my family.
And they truly love Finley! People make a point of coming to the back of the sanctuary and saying hi to him after the service. Someone put his prayer card up on our church bulletin board, which is right at the main entrance to the building, and it has been there for years. Finley gets invited to birthday parties. The church, just to show their love for our boy, paid for the ramps that we use to get Finley in and out of our van. Perhaps most importantly, they welcome him into the sanctuary for worship. Instead of complaining about the noise he makes during the service—if you can believe this—people often tell me how much they like to hear him!
Most recently, our dear church family covered the entire cost for us to attend the Joni and Friends Family Retreat in New Hampshire where my husband and I were able to relax, our kids were able to make up for missing Fun Town Splash Town, and where we were offered the real help and real hope that only Christians can give.
Johnny Cash has a song called “The Reverend Mister Black” about a preacher who carried a Bible in a canvas sack and told a cussing lumberjack that “You’ve got to walk that lonesome valley. You’ve got to walk it by yourself.”
I am so thankful my pastor never said that to me. I am so thankful that we have not had to walk this path of disability by ourselves. Jesus, our anchor, is always with us. And he has given us real hope and real help from our church.
Esther Vannoy is a member of Lakeview OPC in Rockport, Maine. Ordained Servant, July 2019.