“Our family moved to Mobile to a house with a pool in 1981.  March 20, 1982 was the first warm day of Spring. John was two and a half years old, and his brother, James, was four and a half. My husband was blowing up a plastic pool boat with the boys, and I was planting flowers with my back to the pool. I turned around, and John had fallen in. It happened so fast. The water was cold, and he was gray. We put John in the car and rushed him to the ER. I thought he was gone, but after several attempts, the doctors brought him back with one last, aggressive attempt.  It was at least 30- 45 minutes before he was revived.

John went to pediatric intensive care at the University of South Alabama. I didn’t know what a brain injury from lack of oxygen would mean. The doctor said John probably wouldn’t make it through the night because of the swelling of his brain. John made it through the night, but he woke up inconsolable because he was attached to wires and machines and couldn’t move or speak. He was in pediatric intensive care for a month. He didn’t smile for several months.

John has been called Locked-In. This neurological disorder sometimes occurs after a near drowning. He sees, hears and understands everything going on around him but lacks motor control.

We took John home and had to figure out what to do. I wanted him to have the full life of a child and kept thinking he would get better. I implemented all of the therapies and took him everywhere, including to all of James’ events. I homeschooled John with all James’ school books until we got to middle school. We listened on tapes to the classics and history from the National Library Service, so John is well-read. 

My church friends and many who only heard about us took turns exercising and playing with John in the afternoons so I could pick up James from school and spend time with him.  I got to lead his Cub Scout troop and give James my full attention. Dad took James hunting. This intervention in our lives was part of the blessing of the community being built around John and us.  John remained limber with all the exercise and his sense of humor, love of people continued to increase.

John’s life was filled with love and activities. He has always been sociable and looking for fun. After John aged out of school programs, there was little help beyond friends and family. There was no consistency through the Elderly & Disabled Waiver which provided home helpers, but none who stayed. I would train one person, then she would be sent to another assignment.  When John was a teenager I went through Partners in Policymaking to learn to be an advocate for people with disabilities then went on the Alabama Council for Developmental Disabilities. I wanted to know how we could support people in the community like John and not leave them sequestered away. It breaks my heart to think about someone being left in a bed or at home without activity or friends.

For the first 20 years, I was on a quest for healing for John. But the Lord spoke to my heart and said, ‘I called John before the beginning of time to pass through this. Have no fear.’ 

I understand God has a purpose for John’s life, and that gives me peace. I trust God, the one who can do all things and loves us completely.

John got an ID Waiver just before he left high school.  With my training in Partners in Policymaking and exposure at the Alabama Council for Developmental Disabilities I saw possibilities and creativity to help John and others.

I started hiring students from the University of South Alabama to be caregivers; John’s Medicaid waiver pays them. They exercise him and take him everywhere including to his weekly bowling, art classes, Dance without Limits, and shopping. Our student helpers are with us for three or four years while they study in medical or therapy fields. John trains them in patient care experience. That is a blessing.

For 20 years, working with these students has been our ministry. They learn that people may have a hard life impacted by pain, but it’s also a life of blessings, not woe. Every person is valuable and deserves to have a full life.

I’m an artist and taught art lessons and painted at home, but there wasn’t much time while caring for John. Then someone asked me to teach art to people with disabilities at the Mobile Arc. That grew into taking my students into the world and sharing places we go with John. It was a wonderful experience. Then COVID hit.

In January 2020, a friend asked me to work for the Full Life Ahead Foundation (FLAF), which helps people with disabilities have the most independent and productive lives possible in their communities. FLAF based in Birmingham and wanted to expand into south Alabama. Through FLAF I teach weekly art classes at Springhill Presbyterian Church, Central Presbyterian Church, the Eastern Shore Art Center and Dauphin Island Heritage & Arts Council. The classes are more than art projects –  they are also a time to socialize and learn life and job skills. 

On Tuesdays, we also go to equine therapy. Therapeutic riding and caring for animals are so good for people. We also learn how to paint and build fences at a farm in Silverhill–life and job skills. 

John goes to church every Sunday and sings in church. He has always loved music and sings with the cadence of the music.  If you give people with disabilities programs and activities to pull them forward, they will come through. Without opportunities, people like John could remain static all day.  Full Life Ahead Foundation targets helping people with disabilities over age 21 when there are fewer services and opportunities.  

There are many adults with physical disabilities in our area who would like to be out enjoying life. One problem is that there are no restrooms to meet their needs.  Changing stations with an adult changing table and a lifter are needed everywhere – churches would be a great location. A few airports have them, and some states are adding amended restrooms to public spaces.

Respite rooms and changing stations could also be used for people with Autism who need to take a moment to decompress.

Caregiving is a blessing, but it’s also a challenge. I get up three or four times every night turning and changing John. How will we physically manage John from here? A nursing home isn’t an option because they aren’t trained to care for him. My challenge is what happens to John after we are gone.  I trust God. May it be done unto us according to His will. 

That first month that John was in ICU, I went home one night and stood in the shower with my face looking up. I heard the Lord say, ‘Pray for those around you that they will see my glory.’  I had never heard the Lord before and didn’t know what that meant. Now, I know.  John’s journey has brought glory to God and joy to every person who meets him.”

Carolyn