If you go to the campus of Brentwood Baptist Church, you’ll notice some new construction at the southeast corner of our campus. The building under construction is the Rowen Glenn Center for Special Needs. Rowen Glenn is my four-year-old granddaughter. She is also a child with special needs.
Several years ago, our church started researching how we could best engage families with special needs children. When we started this process, we were overwhelmed by what we found out. First, there are several hundred families with special needs children who live a few minutes’ drive from our church. If you extend the study area out further from our church, we could soon name several thousand families. We also found out that most of these families aren’t engaged with a church on any level. Every one of them had the same story. Initially, they would try to take their special needs child to church, but either the church wasn’t prepared or was uncomfortable with the level of care required and the parents would end up caring for their child while at church. Soon enough, the parents would find it easier to stay home, and eventually, the family would stop coming to church altogether.
As you can imagine, having a child with special needs stresses the marriage of the parents and complicates being parents to the other siblings. Going on vacation is sometimes more trouble than it’s worth. There is the constant pressure of responding to changing symptoms and simple chores like bathing, feeding, and getting dressed can take hours. By the time the basics are done, the family is too tired to attempt much else. Unless they are very intentional about how they live, the family can end up being very isolated and alone.
I know more about this than I wish I did. Rowen Elise Glenn was born four years ago. Before she was born, the doctors told my son and daughter-in-law that there was a problem. She was diagnosed with Sotos. Sotos is a genetic deletion that affects the way she deals with protein. Sotos can present itself in a myriad of ways — or not at all. Rowen has had her challenges. When she was born, she spent several weeks in ICU and therapy. Every day, my wife and I give thanks for the talented doctors, nurses, technicians, and other medical professionals that cared so expertly for our granddaughter.
She’s home now and attends her therapy sessions several times a week. She’s doing better, but she still has her challenges. A few months ago, my son told me about his day. He gets up and gets Rowen dressed and takes care of her first feeding. He then tries to get dressed for work before he checks her oxygen, gives medication, handles phone calls to doctors, consults state childcare agencies that assist with Rowen’s care, arranges nurses, and well, you get the idea.
“Dad,” he told me, “When you get up in the morning, your day is 50% filled. If something goes wrong, you have time to adjust. When I get up, my day is 98% filled. If something, anything, the smallest thing goes wrong, I don’t have any slack to fix it.” His words hit me hard. Real hard. On some days, my son didn’t have time to talk to me on the phone. His time was already planned out for him.
Now, don’t get me wrong. Our family is extremely blessed. I’m not being shallow or trying to blow a bunch of Jesus hype at you. I mean it. Rowen is an absolute inspiration to us. She’s strong. She’s tough. (Her pain threshold is through the roof.) She’s funny and curious. She loves to dance and twirl and, if she’s in a good mood, she’ll sing for you. Her laughter can pull the sun through the clouds.
When she squeezes your face to kiss your cheeks, there’s nothing in the world like it. Being with Rowen is absolutely magical. The conversations between my wife and I are already filled with our favorite Rowen stories.
But when I have a quiet moment, I worry about her future. I can’t help it. Will she ever be able to live on her own? Will she overcome her current symptoms the way she’s pushed through the others? Will she go to school? Will the other kids be mean to her? Will there be enough money to take care of her? Yes, I know God is faithful, but I still worry.
Sometime over the weekend, I’ll go to see Rowen. She’ll run up and hug me. I’ll feel her hands patting down my pockets as she looks for my phone. When she finds it, she’ll hold it up triumphantly and laugh at me. Then, she’ll look through my photos to see if I have any new pictures of her. I’ll love every minute I’m with her.
But when I get home, I have the same heartache I have every night. I’ll worry about her. The Apostle Paul tells us that creation itself is frustrated and groans for the day when everything – including Rowen – is completed as it was intended to be. The whole universe knows that things shouldn’t be this way and we pray — and hurt a little — until the day when Christ finishes all that He has started.