They can be among the least visible people in the church. They may seem disengaged or disinterested. Their circumstances, though unseen, may be intensely demanding. They may have little time to serve and few resources to share. All their time and most of their energies are committed before they actually have them.
Who am I talking about? I am speaking of a very special “club” my wife and I belong to. It’s not a club we chose to join. If we could, we would resign our membership immediately. It’s a group we joined more than 32 years ago and the dues exacted increase annually. There are no rules, no meetings, few perks for members, but membership brings deep pain and great sorrow. Often there is little outside help. Fortunately, club members do try to help each other.
What can I possibly be talking about? Why would anyone be a part of such a group if it is so hard? I am speaking of the world of disability—specifically being the parents of a disabled child, a child who has become an adult.
Thirty-three years ago, living in northern Alberta, happily serving the Lord, my wife and I were blessed to learn that we were expecting our third child. Our first two were active, healthy children, and we hoped for another healthy baby.
Then the unexpected occurred. My wife was standing in the kitchen about ten weeks before our child was to be born when her water suddenly broke. She was transported by air ambulance from High Level to Edmonton where the doctors attempted to slow delivery so that our child would remain in the womb until he was more fully developed.
The attempted delay went on for three days, but Joshua decided that he couldn’t wait, and he entered into our world ten weeks early. His birth weight was 3lb. 9 oz. My wife remained in Edmonton, staying at a Ronald MacDonald House while I held the fort back in High Level, five hundred miles away, caring for our older children.
For more than a month, we watched the doctors and nurses care for our son, and we could chart his progress by his location in the neo-natal unit. The babies were in rows of plastic bassinets with those nearest to the main doors, the most serious. As their conditions improved, the deeper into the ward the babies were moved. The babies with the most serious needs had a dedicated nurse. By the time Joshua was ready to be discharged, one nurse cared for four to six infants.
For thirty-seven long days we waited for word that Joshua was strong enough to come home. Finally, we received word that day had arrived. Then we were told that we might join “the club.” Literally on the way out the door, one of Joshua’s doctors called us aside to give us the news. He showed us an ultra-sound of his brain and pointed out an issue of concern. A bleed had occurred during his birth. It was impossible to tell what the consequences of that bleed would mean, but very likely Joshua would have challenges as he grew. We took our son home with this heavy news ringing in our ears.
What would we have to deal with? Only the Lord knew.
Premies take a while to catch up to their peers. As Josh grew, we observed that he was different from our other children. At his first annual checkup, his pediatrician bluntly gave us the news. Joshua had cerebral palsy, spastic quadriplegia to be more specific. All four limbs were affected. Just how serious his CP would be, we would know in time. But it would be significant. It was our welcome to the “club” news. What we feared was now a reality. Could we trust the Lord for what we were facing? We had no idea of the journey that lay before us.
This news became the catalyst for us to move from northern Alberta to southern Ontario. Joshua would need considerable medical care and living in the north meant long drives for that care. During his first year, we made the eight-hour one way trips to Edmonton about every six weeks. But we couldn’t keep this up. A trip to the doctor was at least a three-day excursion and often longer. Going to the doctor with Joshua was disruptive to our ministry and our older children’s lives. But there was little we could do but attempt to care for our son as best we could.
As time went on, we could see the effects of the CP. He had great difficulty learning to roll over. He couldn’t sit up. When he crawled, he dragged his legs, doing most of the work with his arms but even then, his crawling was inefficient. Thankfully, his mind seemed unaffected. He learned, adapted, laughed, and began to talk even though the CP made him hard to understand at times.
As we visited the doctors, we soon met other families in “the club.” Some had extremely difficult journeys. Entrance into “the club” comes in many ways—CP, autism, Downs syndrome, spina bifida, or a variety of strange and rare genetic defects that leave children incapacitated and needing significant care. It can come at birth or a sudden onset later in childhood. One friend has a child with a brain tumor that the doctors have been fighting for several years. Sometimes the doctors appear to be winning, while at others, the cancer is prevailing. The family has spent hundreds of hours in the hospital. Some parents don’t know how long their “club” membership will last. Some are in “the club” relatively briefly as their children will succumb to their maladies, while others are looking at a lifetime “club” membership. This is where we are. Joshua may well outlive his mother and I, but his prospects are hard.
One of the things we have discovered throughout our years in “the club,” is that our Christian brothers and sisters have a hard time relating. There was a deacon at our church in Windsor who was upset that our son (three years old) was leaving marks on the walls in the hallway with his new electric wheelchair! Of course, he was learning to drive in tight spaces and the walls got marked up. Another lady kept our children so my wife and I could get away when Joshua was young. When we returned, she commented on how hard it was to care for him and that she “would never do that again!” I didn’t blame her. He was hard to care for. But Rebecca and I didn’t have that option. We just had to persevere through the hard days. Joshua was our son, and we were committed to meeting his needs.
More than thirty-two years later, we remain committed to meeting those needs. But we need help. As we age, his care becomes harder. The COVID crisis made finding and keeping caregivers extremely difficult. This is where the church should step in. Often, however, it doesn’t. Sometimes it’s a lack of understanding of the needs, while sometimes it’s apathy.
Ministering to families like ours is one of the least done ministries in churches. I once asked a pastor of a church with a family who had two children in powerchairs what the church did to help the family. He responded rather blankly, “What do you mean?”
My wife and I recently zoomed with the parents of an autistic child. The strain on their marriage was palpable and sad. Simply throwing verses on marriage at a couple like this doesn’t really help their situation. They need people to come along side and help them. Unfortunately, we are several states away and are unable to be that helper.
Christians need to step up and come alongside families like ours. But what can believers do to help them? Go to the store? Cut their grass? Clean their house? Is there a financial need? How can Christians minister to special needs families? I once told a doctor friend that I needed a kidney. (It was a metaphor.) He said he didn’t have one and simply walked away.
How can Christians show each other the love of Christ?
For families in “the club,” this is often not a “one and done” action. Because “club” membership is ongoing, many families require regular and ongoing support. I know of a family with a child on a feeding tube with other complications. The mother is a trained nurse, but she cannot care for the child 24/7. She recently appealed on Facebook for people with training to help her. Yes, sometimes the government has programs to assist, but truthfully these programs seldom adequately cover the needs. Shouldn’t believers who have the duty to “bear one another’s burdens” rise to these challenges?
One of the saddest stories in the Bible is found in John 5. It concerns a man disabled for 38 years. He was lying by the Pool of Bethesda hoping for a miracle. When he meets Jesus, he laments “I have no man to help me when the waters are stirred.” Whether or not there was any healing virtue in the pool, the sadness comes from the fact that no one helps him.
I wonder how many of our churches are like that community around the pool—no one helping the disabled and caregiving families in need? Our churches have ministries to our youth, and our seniors. We have outreaches to the unwed mothers and to the lost. But some among us with the greatest needs are less visible and are underserved by the church.
Brethren, these things ought not so to be.