Spirituality in the Life of a Special Needs Dad
Steve Frank

My first child, Jordan, was born 9 weeks early, and weighed only 2 3/4 pounds. His brain was already oxygen-starved in the womb and he was very sick when he was born. The doctors don’t know how or why he lived through that first weekend, but I do.

Long before Jordan was born, God was a familiar concept to me. I grew up going to church, and always took for granted the idea that there was a god. However, as a student of math and science, I had a taste for things that could be seen and measured. I knew science had, or would soon have, an answer for everything, so there was no need for a god to push things along. The god I knew was a distant and mostly uninvolved god and I didn’t really have much of a spiritual side to my life.

When I met the girl who was to become my wife, I met someone who experienced God differently than I did. God was active in her life in ways I could see. As I learned how to look for Him, He became more visible in my life, and the spiritual side of my life slowly grew. However, I still clung to the idea that I had a great deal of control over my life.

That all changed when Jordan was born. In his first hours of life, I could do nothing for him. I couldn’t hold him. I couldn’t take him home and protect him. I couldn’t fix him. I was not in control. I had to turn him over to the doctors, who kept him in a clear plastic box. But they couldn’t fix him either. They knew his blood was clotting, but they didn’t know why. They just kept pumping new blood through his system and pushing air into his lungs.

Those first few days of Jordan’s life are when I started learning to give up control. It’s surprising how difficult it is to give up something you don’t really have in the first place. For me, giving up control was more a matter of admitting that I didn’t have control. I couldn’t even begin to do this until God showed me that He was in control for me. I was not in control, and neither were the doctors, but Jordan still survived those first few days. When all I could do was pray and read the Bible to Jordan, God was in control.

As Jordan has grown, my life has continued to be a lesson in having the faith to admit that God is in control. That I can’t make things happen the way I want or plan them. Sometimes I can see my faith grow in response to events in my daily life. Other times, I only notice it has grown when I look back and realize how I have changed during my struggles.

One of those times when my faith was strengthened suddenly involved dealing with Jordan’s separation anxiety. Jordan has significant problems with this, possibly due to his lack of ability to control his environment. His fear when left with people he doesn’t know is more acute than it is with most kids. He’s unsure if they will understand his needs, but he can’t run away or even go hide in the corner if he feels a need to escape. This was especially severe when he was young. We went everywhere with him because we had no one to leave him with and he would not tolerate day care. He could easily cry for over an hour!

I couldn’t bear to put him or care providers through that anguish. For this reason, we couldn’t really go to church when he was small. Since he couldn’t sit through an entire service, we would sit outside the sanctuary and try to listen in, taking off when he became too restless. After a couple years of this, some friends recommended a church they had found that just happened to be near our home. The first day we checked out the church, someone stood up during the announcements and talked about the special needs Sunday school class. We couldn’t believe it! They had a class with teachers, therapists, medical professionals and peer tutors! Some people would consider that a remarkable coincidence, but I no longer believe in coincidence. The following fall, we dropped Jordan off in Sunday school for the first time. When we walked into church that morning, just Michelle and me for the first time in three years, there was an overwhelming feeling of returning to normal life.

I also see how God is molding me over the years. I spend a lot of time just being with Jordan and encouraging him in his accomplishments, no matter how small they may seem. Because of this, I’ve found that I’m attuned to what my daughters do. I find ways to praise and encourage them, and just let them know I love them. If they want me to carry them down the stairs because they see me carry Jordan down the stairs, I do it. They need to know that I care just as much for them by having me do the ordinary things with them. Jordan’s life is about being together and having relationships, not about getting things done. It isn’t about being great at counting or reciting the alphabet—it’s about interacting and getting to know each other. Although I love to see my girls do well, I feel no need to push them to walk and talk sooner or count higher. There’s plenty of time for that.

Finally, I’ve seen some of the things God has done through Jordan. Being with Jordan means slowing down to his speed. He can’t go your speed, and he can’t run off every couple of minutes to some other game, like most small children. When you do things with him, you see and feel his joy for life and relationship. You learn to live life the way he does. One example of someone impacted by him is a grandmother who had little interest in kids, much less grandkids. A weekend spent being around Jordan led to her becoming the full-time nanny for her grandchild. There are many others who he touches, sometimes simply by flashing a smile in a busy grocery store, sometimes by forcing someone to pause in the middle of their errands to chat with him.

I don’t always feel good about my life and its challenges, but I do understand that I’m growing in ways that will make it all worthwhile. I’m learning that life is about being, not doing. It’s about relationships, not accomplishments. God wants to be in relationship with us, and he’s teaching that lesson through Jordan. I don’t like what Jordan has gone through, but I do like what it has enabled him to be.

Steve Frank is a husband and father of three children, Jordan, Kiley, and Gracie. He bicycles daily, rain or shine (OK mostly rain!), from his home in Sammamish, WA to his job as a software developer. He is a long time member of the Kindering Center Fathers Network in Bellevue, Washington.