As westerners we have this idea that we can control our lives which then controls our fears. So when something unexplainable happens- something like the birth of a child with a genetic abnormality that has no scientific explanation- it can really rock our reality as we know it. Science can actually prevent even this human experience now; with 90% of women aborting a child with a diagnosis of Down syndrome- and even higher rates when caring a child with Edward syndrome or the numerous other things that can be picked up through pre natal screening and ultra sounds... it just shows our desire to control our lives. Carrying a child that has a less than perfect future is now "incompatible with life". We want to avoid the pain and struggles of having a child with a medical or developmental disability. This is only a magnified example based on my personal experience- we actually control our lives in hundreds of other ways that we are unwilling or unable to acknowledge.
When Bentley was born and the diagnosis was delivered I was out of control. I had this beautiful infant that I had just birthed. I immediately felt bonded to his weak body, and yet there was a painful reality that all that was to come was out of my control. His heart condition, his need for glasses, his need for ear tubes, and a tonsillectomy, and his inability to use the toilet until just under 5, his frequent messes, his inability to make decisions based on safety, his overall frustrating nature that I deal with every single day- all of those things are out. of. my. control. And let me tell you- I am constantly trying to gain control.
Much of my life is yielded by my ability to control. I eat healthy foods and exercise so I can stay fit and healthy. I read the news so I can contribute to conversations and know about the world. I do laundry and dishes and clean up so I live in a clean environment. I went to school so I could get a good job. I read to my children so they will get smart. I take them to see things so they can have a nice experiential childhood. I look for good schools for the kids so they will enjoy school and learn. My list could go on and on and on. I love control.
Bentley has thrown my system of control into chaos. He is not predictable and not controllable.
According to Skye Jethani in his book, With, Christians are constantly seeking control of their lives to avoid their fears. Yet the Bible is quite clear that as Christians we have no reason to fear. Though there is no manual for raising a child with Down syndrome and everything about him causes me to seek the answers of anything around me- there are really no answers. I am left fully relying on God to help through any given moment- yet I often don't.
Lethani suggests we seek to mitigate fear by taking control in four different ways.
1. We seek to control the world by securing God's blessings via rituals and/or morality. In other words: We can control the world by controlling God. So we become focused on behaviors. So everything on the outside looks good- I have a job, I got to church, I give things to people - and because of things God will help me. He is on my side.
2. We seek control by following life's principles and natural law. Want to avoid catastrophe? Then take control of your own life. With the best doctor or the best medication and the best school and the best job... you can have the life you want. You choose the outcome of your life. Eat good foods- avoid cancer. Get cancer: find the best oncologist in the country and still eat the best foods... control control control...
3. We seek control by placing comforts around ourselves so we don't have to experience pain. So God's value is determined by His usefulness. Religion is a means to an end. It's all about consuming. We have comfortable things and live comfortable lives and God is a comforting God as he gives us what we need. Essentially we put ourselves at the center and ask God to orbit around us. In practice this is us filling our lives with possessions and experiences in an attempt to distract us from the fears and pains of life.
4. We seek control- God's favor- through faithful service. The false belief is "God is disappointed with me because of my ongoing struggles with some behavior. He expects more from me. And he cannot use me to accomplish his work in the world until I clean up my act." Or this is also displayed when Christians value missionary work at a higher standard than their "secular" professional friends. We believe this service will be more effective for God's kingdom- but is that true? We begin to see ourselves entirely based on what we are able to accomplish on God's behalf. Even sin in our life is seen through this lens- how effective can I actually be for God? We cannot put mission above God himself. My value is not determined by what I do. My value was already determined when Christ gave himself up for me.
These forms of control are easy to be masked over long periods of time- especially when they work. The more we control our lives, the less we see the control as an actual problem. It is when our desire to control ocean wave collides into the rocky banks of shore that we begin to see our faulty beliefs.
I was exposed at my inability to control with 1,2, and 3 early on. From a failed adoption when everything was right on paper, to a "failed healthy baby" and going back to a childhood when I couldn't control my parents' decisions- I have been well aware of my inability to control. Yet even though I know I can't control I am still constantly trying to gain more of it! Number 4 was exposed in the past couple years with a traumatic church experience. I was firmly rooted in the fact that what I did gave me purpose. The more I could do the more purpose I had. When everything was stripped away and I was only left with my little family my purpose fell into the depths. It was during that time that I fell into a deep depression followed by a really challenging year. It has taken many many conversations, and books, and sermons, and prayer for me to really come to the point where I believe my purpose is being loved by my Creator. And I don't have to do a thing. This is something that words really cannot express, but it is a life changing belief system.
The problem with control is that even when you can explain it and understand it- you can't stop trying to have it. At least I can't.
The problem with Bentley is that he is teaching me how out of control I am every. single. day.
This morning we got in the van to rush off to church. Clayton gets in his seat- seatbelt on- no problem. Lily is in her seat- I strap her in. Good to go. Enter Bentley. Not in his seat. Finally in his seat. Refuses to put his seat belt on. I certainly could put it on for him- but I see this is a life lesson. I am not going to do things for him that he can do himself. It's my line. I've drawn it in the sand. Yeah- draw lines in the sand for a child with a disability and we will have laughs for days. It doesn't work. This experience- this small example of what goes on all day every day is a constant reminder of my inability to control my son and often my temper. I want to yell, "PUT ON YOUR DAMN SEATBELT. IT'S NOT THAT HARD!" Of course I don't swear at my children out loud. But I know I shouldn't be anger and short of temper either. But it's not today and it's not the seatbelt. It's everyday for the last 6.5 years. And it gets old. And my patience is not getting longer.
So this morning- before the sermon, but after the book- I was reminded that it's not about getting to church. No, Bentley doesn't care about arriving on time. It's about that moment. The moment the seatbelt became an opportunity for me to get out the pent up anger because my son is a constant reminder that A+B doesn't equal C. But it's also the moment that God was a quiet presence in my car reminding me that He loves me. And it's not about getting the kids dressed and in the building and to the Sunday school where they'll learn about Jesus and grow up to be God loving Christians... because life doesn't do that. And it isn't the moment where I use my ability to control my response for the sake of controlling the response. But it's the moment where I felt the presence of God with me and for me. The moment where I felt like I get to to be a frustrated mom of an unexpected child that I so deeply love. The moment where I recognize my out of control circumstances that bring me closer to the heart and need for God.
As I reflect on the things I am trying to control and release them I see so much freedom ahead. Sending the kids to the best school I can get them into doesn't promise their happiness or their success. So I can stop controlling- and ultimately stop from being afraid. Not worrying about if I am late or not because Bentley is taking too long frees me to be patient and kind instead of short tempered and frustrated- I don't have to be afraid of what others think if I am late- or worse- what I think of me if I am late. Reminding David of every stop sign and pot hole and curve in the road does not control if we get in a car accident- it feeds my fear of life- and I don't have control of it. Reading my Bible and and praying and doing everything right doesn't control God's response- it doesn't control if I have all the right answers- and it doesn't control my behavior. It's helpful- it's freeing- but it can't control my outcomes nor how much I am loved.
And so I come back to the center where I am reminded that I am loved. I don't have the answers and I don't have control. I am trying to enter more into faith and out of fear. I don't have answers, only experiences. But I do know that it is a lot better to live in the freedom of knowing that I can let it all go then it was when I thought I could mold my life as I desired. The unplanned life- it's an adventure worth living. Keep that in your back pocket and remind me- cause I'm gonna forget in the morning.
Peace.
This post could only be written because of the inspiration from the book With by Skye Jethani, our pastor Kevin Butcher and his sermon this morning, as well as from the daily life lessons from Bentley John Crawford. (and with much thanks to Loud Harp's new album: Asaph).
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