Last month I was putting Marley to bed and she was fighting like a monster to stay awake. While I was reading to her, she grabbed my ear and attempted to pull it off. It really hurt and I suddenly wanted to throw her across the room after already spending thirty minutes trying to coax her to sleep.
Instead of going to jail for launching my child against the wall, I gritted my teeth and started counting backwards silently. This enabled me to relax and she finally drifted off to sleep. Once I laid her in the bed, I started to think about her determination to stay awake. I was mad because Marley was actually fighting against something that would benefit her. I wanted to wake her back up and say, “Fine, you win, lets stay up all night and see how you feel tomorrow.” Of course I knew she could not understand this reasoning and it would be worse for Jana the next day, and she would be furious with me (better to keep the wife happy J). While I was debating this in my head it brought me back to my relationship with God.
I began thinking about how much I fight God when I do not get what I want. I started to imagine God looking down on me and saying “See, you are the same way, you fight something I have for you until you have no energy left to fight. Then once you accept things, you realize that it was the best thing for you all along.” I felt very convicted at that moment because I am sure God wants to throw me across the room sometimes when I am fighting, but he patently keeps rocking me until I accept the plan he has for my life.
When Marley was first-born I struggled with trying to hide her disability. I was always asking Jana if she thought people could “see” her Down syndrome. At an initial meeting with our speech therapist, she asked me if we were going to have any more children. I told her that we did not know and she made a comment that has stuck with me since that meeting. She said, “When you decide to have more children, then I will know that you have accepted Marley for who she is and whom she will become.”
When she first said that, it made me mad, but now I am starting to understand the importance of that insight. As a competitive father, I have only wanted to push Marley to be “normal” since she was born. This is an unhealthy way to live regardless of the limitations of our children. I need to accept Marley for who she is and understand her value to God and the world. Is this an excuse to not push Marley, not at all, but when Marley fails just like any other child, then I need to love her for who she is and not for what I want her to be.
“It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.
All of this is based on trusting God and his plan for our lives. I know I have a serious problem with a lack of faith in my creator’s plan. I constantly fight against God, I dislike rejection, I struggle accepting my child’s faults, and I want my daughter to be accepted; but all of these things are a lack of faith. Take some time this week to look at Job. I always enjoyed God’s response to Job, until some of my own struggles caused me to question God’s plan.
Then the Lord spoke to Job out of the storm. He said: 2 “Who is this that obscures my plans with words without knowledge? 3 Brace yourself like a man; I will question you, and you shall answer me.4 “Where were you when I laid the earth’s foundation? Tell me, if you understand. 5 Who marked off its dimensions? Surely you know! Who stretched a measuring line across it? 6 On what were its footings set, or who laid its cornerstone—7 while the morning stars sang together and all the angels [a] shouted for joy?
Please visit or website where we give Marley and other children diagnosed with Down Syndrome a voice to be heard! http://www.iftheyhadavoice.org/
May God bless you and your family,
Author, Jack Barr