Mortar and Pestle
Flannery O’Connor once wrote, “The truth does not change according to our ability to stomach it.” Oh, how true that is! How painfully true. One of my daughters is afflicted with a disease called Spino Cerebellar Ataxia, Type 17 – a condition that causes a person’s cerebellum to shrink. It’s a neurological-deteriorating disease, and it’s terminal. Not like tomorrow terminal, or next week terminal, or even six months. It’s more like a few decades of wasting away until one expires, and their spirit leaves them like a puff of steam.
Type 17 is the most aggressive type of this disease (there are 40 types). No one knows what causes it, or what to do about it. The cerebellum is located at the top of the spinal cord. It is also referred to as “little brain” and “the tree of life” because of its leaf-like appearance. The cerebellum controls all the muscular functionality of the body, like walking, talking, breathing and swallowing. People with SCA typically die by choking to death, as they are unable to swallow, or by having a heart attack. Liz’s life expectancy is around 30. She’s 29.
“Just make her comfortable,” the doctor said.
My wife and I have nine children ranging in age from 12 to 31. It’s not a blended marriage; they are all ours. Five boys and four girls. Liz is the third child. We live in Toronto, Canada. Two of our children have SCA 17.
We knew something was off with Liz when her speech started to slur at age 12. Her gait was off, and she started to walk toe to heel. She would get constipated and have small slip-ups from time to time. We took her to an osteopath who performed a check up and said that there was something wrong with her cerebellum, but he didn’t know what.
While on a family vacation at a nearby Christian camp, we listened to a preacher teach on the subject “Why Lord, Why?” Ironically, it was during this time at camp that we decided to drive Liz to a hospital. At the time, she was 16 years old. We drove two hours to Toronto, to Sick Kids Hospital, to have her checked out. The nurse came into the waiting room, eyes full of tears, and said: “We did an X-ray. We don’t know why, but her brain has shrunk. It’s like that of an old lady’s.” That was 13 years ago.
At the time, Liz was barely walking, but now she’s fully incapacitated in a home for the developmentally disabled. She can’t speak, walk, or control her hand movements. Her favourite things are watching movies, singing with us, and having her older brother visit. Her favourite songs are: “Jesus take the Wheel” (Carrie Underwood); “You raise me up” (Josh Grobin); and the 2006 version of Ted Neeley singing “Gethsemane,” which she and I always sing together.
I remember the phases of pain, the kicks to the stomach, and the unending feeling that my prayers would not be answered the way I wanted them to. It was as if my prayers were herbs and seeds being placed into a mortar on a weekly basis, and the pestle was the answer no that smashed and crushed my dreams.
I remember walking to a weekly prayer meeting at the grade school that my younger children attended. It was always just Ivel and me; She, a Jamaican prayer warrior, and I, a broken 47 year old man, trying to make sense of what was going on with Liz. As Ivel prayed, I cried out to God in my heart, and asked Him to please tell me how I was supposed to handle this situation. It was like an earthquake had shattered the principles and beliefs that my life was founded upon. I was lost.
I reached for my Bible and opened it up randomly. I read: “We know we love God’s children if we love God and obey his commandments. Loving God means keeping his commandments, and his commandments are not burdensome.”1 I realized at that moment that it wasn’t important for me to know why this was happening to Liz, but rather that I loved her, took care of her, and didn’t lose my faith in God. I had family and friends who were looking to me to see how I would react to this tragedy life had given us. I had been given a purpose. I now had direction and peace. From that day forward I did my best to make sure all of Liz’s needs were taken care of, and that I didn’t lose my faith in Him.
But things got worse. There was a time I cried out to God and begged Him not to allow Liz to go into diapers. Getting enemas was one thing, but putting a 16 year-old in diapers was a sickening thought. The diapers came. The expensive, washable bed protectors were purchased. Routine enemas were established. I was never able to bring myself clean her. My wife, daughters, friends and personal support workers did that for Liz.
To keep Liz at home, we had to figure out a way for her to live with us. Our home is back-split with bedrooms on the top floor. She could no longer climb stairs, so we decided to build a bedroom and a washroom on the main floor. The Ontario “March of Dimes” program helped with the funding for the renovations. We divided the long living/dining room area in half and built an accessible bathroom at one end. We got a hospital bed, a 46-inch TV, and an IMAC to stream her favourite movies. One of my other daughter’s friends had a father who was a carpenter. He appeared one day and built Liz a high table that was attached to the wall, so the she could wheel under it and play her favourite Blu-Ray disc. He came back to finish it the next day as he forgot one piece of wood at home. It was a touching moment to see someone go out of there way to help a family in need. With every new installation, every change, every required purchase, I felt as if I were a boxer stuck in a corner getting pounded. Tears filled my eyes as friends and acquaintances came out of nowhere to help. There were countless errands to run and things to do to keep Liz with us. Those were hard times.
What was happening to Liz didn’t depend on my ability to handle it. I couldn’t handle it. I was a wreck, drinking at least a bottle of wine each night to ease my pain. I would go for a walk and start bawling my eyes out. I couldn’t control my tears.
A question came into my mind: does God give us more than we can handle?
Yes. He absolutely does.
I accepted the diapers, the wheelchair, and the house modifications. But we had to deal with another issue. We had to carry her up to the ten front steps that led to the veranda. This wouldn’t do. So we had a wheelchair lift installed. Easter Seals helped with the purchase. We installed it in the garage and cut a hole into the house. We put in a door so that we could wheel Liz from the hallway on the main floor, onto the lift, and down into the garage. Then we would position her into the front seat of the car. The things we had to buy were partially covered, totally covered, or not covered at all.
Having a disabled child is costly. As Liz got worse, she had trouble sitting straight. Moving her in and out of the car was becoming difficult. We purchased a van, and had it modified with a rear-access fold-down ramp. It was a manual ramp that allowed her wheelchair to be pushed into the van. Manual ramps, as opposed to electric ones, are less expensive to buy and to maintain. A charity called “President’s Choice Children’s Charity” helped with the purchase of the van; Liz’s grandfather kicked in the rest. The modifications were partially covered by the Ontario “March of Dimes” program.
Showering became an ordeal. No matter what I tried, Liz could not settle into the showering procedure. I tried talking with her, explaining to her the need for hygiene, especially when one was incontinent. It didn’t work. Once, I went to the liquor store with my friend and we bought her some Manischewitz, a very sweet, red wine from Israel. We also bought some cans of beer and scotch for ourselves. The wine didn’t help Liz with her shower, but the alcohol helped me to forget my troubles for awhile. My wife had to drive my friend home.
Other challenges came. Liz could no longer get herself out of bed, and she was too heavy to lift. We ordered and received a Hoyer lift that would get her out of bed and place her safely in her wheelchair using a sling. The Ontario Government helped with that purchase as well. Liz hated the Hoyer and the feeling of being suspended in the air.
Feeding her was the most challenging part for me. It took hours. The food would spill down her chin as she had trouble chewing and swallowing. Liz hated getting her chin wiped. She would move her head away and keep it turned sideways. So, I left the food there and would have to watch it drip down her chin onto her bib, every time.
When Liz was in her early twenties, I found myself at home alone with her. I was having a particularly bad day feeding her. I went into the washroom, leaned my back up against the wall, and slid down to sit on the floor. I took the towel I was using to wipe Liz’s face and put it over my head and cried. I cried until my eyes were swollen and my vision became blurry. I was completely undone. Soon after, the phone rang and a retired nurse from our church volunteered to come over and start feeding Liz. She organized a group of five ladies who came on a regular basis and helped with feeding.
The care-giving my wife and I were doing had us frazzled. We were both on the verge of nervous breakdowns. We started to get some counseling to help us deal with the tragedy and work.
Then, one night Liz was screaming in agony because of cramping in her legs. I stood outside her bedroom door afraid to go in. I didn’t know what I was going to say, and I didn’t know what to do. I stood there petrified. I couldn’t believe that I was unable to open the door to comfort my child. I prayed and mustered up the courage to walk in. There was Liz, on her back, in her hospital bed. I reached for a Bible and sat down in a chair beside her. I started to read from the Psalms, and pray. The cramps subsided, and she was able to go to bed again.
Some time later, our eldest daughter came to me and my wife and said: “Mom. Dad. You guys have to put Liz in a home. You’re neglecting your other children, and you’re both nervous wrecks.”
She was right. We couldn’t change what was happening to Liz. We simply had to accept our inability to handle the difficulties we faced. Wave after wave of disappointment and hardship kept coming. I accepted what my daughter said. We started looking into home for Liz.
Finding a place for Liz turned out to be difficult. My wife and I visited many places in the city, and soon found out that long-term care institutions are not set up to deal with younger adults in need of palliative care. The standard answer we received was that Liz would have to be placed in a nursing home. The vision of Liz sitting in front of a TV, in a big room with 80 and 90 year-olds, was not something I liked.
Visiting the nursing homes was surreal. They showed us beds in rooms close to the nursing stations, so that Liz could be kept an eye on. Why? So that she wouldn’t get fondled at night by some pervert. It was terrifying. Liz was, and still is, an attractive young lady with long and thick auburn hair. We knew we couldn’t put her in a nursing home.
We found a home that housed young adults. It wasn’t much better. There were eight developmentally disabled young adults per room. Each room was divided into four areas by curtains with beds in each area. Some of the residents were young, physically capable young men who were playing video games. Most of them were talking and walking. Liz was in the worst physical condition of all of them. She would be unable to fend off even the least aggressive assault. The young people’s home was also out of the question.
Our answer came when our eldest daughter called us one day and told us about a place in the city where she lived – Kitchener, about an hour’s drive from Toronto. She had heard about it in a church parking lot after a prayer meeting one night, after she had shared about our family’s need for a place for Liz. We visited the home and found that it met all our requirements. Liz would be safe, and cared for.
Applying was easy. Getting accepted was even easier. Paying for it was impossible. Residential care for an individual requiring 24/7 care is expensive. In Ontario there at two types of homes: government-run and private. Both are funded by the Ministry of Health. However, the Ministry gives preference to the homes run by the government. When we applied to the government for funding for Liz, we were told that those types of private homes were not funded.
We scrambled. I decided we would put Liz in the home anyway and trust God for the funding. We set up a GoFundMe page and raised over $40,000. I was told by the owner of the private home to continue pressing the government for the funding, as the thirty or so residents in his facility were all paid for by the Ministry of Health. He said that we should let the government know that we do not intend to stop asking for the funding until we get it. I met with government officials, made phone calls, sent emails and letters.
One day I was told by a friend that she knew a radio broadcaster in our city who would be interested in our cause. Within two days I was sitting in front of him getting interviewed about Liz’s situation. Journalists picked up on the story and started calling the Ministry of Health and making inquiries. Articles appeared in newspapers. Three weeks later, I received another letter from the same person at the Ministry of Health. He said that the Ministry of Health would fully fund Liz’s stay at the privately owned residential home.
The day approached for me to push Liz into the wheelchair van, and drive her to the home. I dreaded it. We had a party for her the day before she left. As I thanked the people for coming, sweat trickled down my back. My girl was leaving. My Liz was moving out.
The next morning, Liz and I started the one hour drive to her new home. It was 2014. Somehow, I felt encouraged. I put in a CD and we sang all the way there. I accepted this as God’s will, and I was at peace. Liz was smiling.
Marty, who is now 23, was placed in the same home as Liz about a year ago. It was easier to get the funding the second time around, but still challenging. They are both happy, both cared for, and both slowly dying.
Hundreds, thousands of people have helped my wife and I through along this difficult journey. The truth does not change according to our ability to stomach it. But good people everywhere, and God Himself, help to soften the blows, especially when prayers for healing haven’t been answered.
11 John 5:2-3 (NLT)
Andy Fairchild and his wife of 32 years live in Toronto, Canada. They have nine children. Andrew is a lay pastor and his wife Sandra mentors single moms in a church group. Andrew is working on establishing himself as a published author of Christian works. His favourite style is poetry.