This is an article I wrote after our Joni and Friends Retreat in Murrietta, California this summer.
Who Will Push Me?
“I do wonder about the future. Zach is our only child. What happens to him when we’re old? What happens to us? Who will take care of him if we die?”
I was sitting in a circle of moms at a Joni and Friends Family Retreat. Founded by Joni Eareckson Tada, the retreats serve families who are living with a disability. I had been invited to the one in Murrietta, CA to provide a concert and women’s event during the week, and had brought my family with me. The woman speaking had a 15 year old son with cerebral palsy. He has very little use of his hands and arms and is in a wheelchair. He’s also a charmer who made friends with my 15 year old daughter and called her “Juliet”.
Another mom spoke. “I feel alone so often. It’s such a blessing to sit here and know there are other parents dealing with the things we are experiencing. But we have no community at home. And since our last church didn’t work out either, my husband is discouraged about trying another one.” Her daughter, Sarah, was autistic and they’d been informed by two churches that their presence was “too disruptive” to other church goers.
It’s a hard place to be. When my son was really suffering before his diagnosis, and then afterward with all the fear and therapy and unknowns, I remember being profoundly lonely, thinking no one else had a child like mine. I remember the constant worry about his future and about ours.
But there wasn’t just fear here. There was so much love and strength and fun! These parents had learned a new definition of love and sacrifice and patience, and the families were amazing. The night of my concert, I invited anyone who wanted to dance to come down to the front, and that building was literally rocking! We had wheelchair dancing and practically a mosh pit of jumping and dancing and praising God. It was the most fun I’d had in a long time, and I wished more people could see how much these families had to share.
When I look back on that week and think about all my friends back home who are parenting special needs children, I realized something in a new way. These families have so much to give, but they often aren’t allowed to. And these families are fragile and need the Church, and yet they often feel that there is no place for them there.
When you realize that you are the only one who understands your child’s medically fragile situation, suddenly there is terror when thinking about an accident or illness. Your situation has upped the ante. A friend of mine died unexpectedly and tragically a couple of weeks ago. Everyone’s first thought was the shock and sadness of it for us and her family, but everyone’s second thought was, “Oh my goodness, what will happen to her son?” He has profound disabilities, and without his mom, his life is suddenly much less certain.
This is an area where the Church needs to step up. We are usually amazing in a situation of crisis. When someone has an accident or goes to the hospital or gets cancer, we go into Church mode. We bring meals, we run in 5K’s to raise money, we watch kids, we take laundry home. But when the situation is long term or uncomfortable, we don’t do as well. If a family member’s disability is distracting to the church service, the family may not feel welcome. If the needs of the family are going to last for 10, 20, or even 50 years, it seems like a lot of trouble, or we just forget what they are going through every day.
The Sunday after the Family Retreat, I was presenting at a church in Pasadena. That church also happens to be the home church of several of the families who were at retreat, including Zach’s. It has a major ministry to families with disability. They made inclusion a part of their mission. They have dedicated Sunday School classes for children with autism and even a sensory room in their children’s wing. They have a section in their auditorium reserved for families with disability, which means the families connect and have the support of other parents who understand the challenges. It also means that behaviors or differences are understood by the congregation. There’s even a specific spot for Zach’s wheelchair and service dog.
That is a big church, and I know that many smaller churches are struggling to know how to serve this population, but it is possible. The easiest way to know how to help is to ask the family. We have found people to be very open about what their kids need and about what would help them if people would just ask. And I have seen over and over that churches who intentionally step into this space will attract the families who need them. Over five percent of school-aged children in the US are living with a disability. This is not a small population, and they need the Church! Jesus told us to serve the least of these. He would not have turned away when it wasn’t easy or convenient to do so.
Zach’s mom told me that he had recently asked her who would push him in heaven. He’d never known anything but his wheelchair, so it hadn’t occurred to him that he wouldn’t need one. Praise God that Zach won’t need anyone to push him in heaven! But while he is here on earth, his parents are blessed to know that there are others beside themselves who are willing. Other families need to know that too.
Jennifer Shaw is a Telly Award winning speaker, author, singer, songwriter, and five-time Billboard Top 40 artist. Her ministry has been featured by Focus on the Family, Insight for Living, FamilyLife Today, Autism Speaks, Joni and Friends, and many more. Her new book, “Life Not Typical: How Special Needs Parenting Changed My Faith and My Song,” has brought national attention to the issue of Sensory Processing Disorder.