Another Spiritual Reflection on Disability and a Prayer

Tonight I was trying to communicate with Christopher. He was upset that his mother sent him to bed. He wanted to continue to look at his train and railroad videos on his iPad and gently fall asleep on the couch rather than go to bed and get under the covers as he was instructed. Mom got frustrated and Christopher cried. So I went in to talk to him. The conversation, as usual with his apraxia of speech, was somewhat one-sided. I decided to talk to him about why he was so frustrated and we all get frustrated with the lack of communication. I don’t know if he fully understood me, but I like to think he did.

I don’t know my exact words, but I tried to explain to Christopher that he and his brother had something called a disability. I was speaking of his dyspraxia/apraxia of speech. I told him he and his brother understood us and knew all the words in their heads. They were both very smart and understood things, but their bodies did not let them talk in sentences and communicate like other kids do. I told him he was a smart little boy, and the most handsome boy at school or church (my bias of course). I told him I love him. I told him I believed he could try really hard and overcome his disability in some way, not all at once of course, but that he would grow and develop and learn to adapt and communicate. I asked him if he wanted to overcome this. He quietly, but seriously answered “yeah.” Tears started to flow from my eyes because I know he wants that too. I think he wants to feel normal, but he doesn’t. He senses he is different from other kids.

I love my children more than ever. I am thankful for them however God made them. God is sovereign over there disability. I believe that with all my heart. I was thinking of the verse earlier today from Matthew 5:29: "If your right eye causes you to sin, tear it out and throw it away. For it is better that you lose one of your members than that your whole body be thrown into hell."

I would rather my children have a disability and be in Christ than them be completely normal and outside of Him.

But I was also thinking about this. One thing I miss (and parents of normal ability children often take for granted) is that I long so much to have a mutual, two-sided conversation with my children. I tell them all the time, and I told Elisabeth tonight, that I long to know what they are thinking. I know them, but I long to know them so much more! When I can’t hear their side of the conversation I feel so robbed. These boys are such a blessing and so unique, and I want to know them so much better than I do now. That is how I know I really love them. I love them so much I want to know them more and more every day. Unless you are God, you can’t really know a person without talking to them intimately and often.

But then I got to thinking. Is God showing me something in this disability my sons have? This was my prayer to my heavenly father tonight with tears. Again, I don’t know my exact words, but this was the essence of it.

“Lord, you know me intimately. You know my thoughts and my innermost being. You knew me intimately before I knew you. Yet you, Lord, desire that your children speak to you in prayer. You are sufficient in yourself. You do not need anything from us. But something in your character longs to have fellowship and conversation with your children. You know my heart. You have put this longing in me to know my children and to hear from them about their wants, desires, needs, likes, dislikes, etc. You have put this longing in me to communicate with my children. You know everything about me, but you still want to talk to me, and for me to talk to you. I know you understand my heart and my deep, deep longing to hear my children speak to me. I know there have been times that I have been like my sons. I have not spoken to my Father. You had to initiate that conversation to get me to speak. But I don’t know how to initiate the conversation with my sons. I can’t work a miracle in their bodies to get them to speak as you have worked in me spiritually to get me to talk to you. I am helpless to do that Father. Utterly helpless! I need your mercy and grace for my children. I want to know them so much as you know me. I wonder what kind of joy you have when your children respond to you in love and just talk to you. I am thinking the joy that I often feel I am missing might be a small reflection of the great joy you have when your children come to you in faith. What joy do you experience when your children tell you about their struggles, questions, joys, or celebrations at the end of every day? What do you experience when your children come to you trusting you as their Heavenly Father with the hearts of little children? So what I long for, Lord, I think reflects something that you long for. So I ask you this. Please work in my children so they can talk and communicate with me. Work in Christopher. Work in Noah. Work in Catherine. I accept their disabilities. I believe you are sovereign over them. But I ask that you would graciously give them the ability to communicate. You are the only one to whom I can turn. All the speech therapy in the world cannot help unless you give it your blessing. Give my children your mercy and grace I pray.”

Amen.

Reflections Inspired by a Dear Friend

A dear old friend from years gone by contacted me today. We went to the same high school. We were in a high school musical together. I think it was Oliver. But my memory is fading. We got to know each other better through being involved in The Navigators campus ministry at Illinois State University in Normal, Illinois. If I am correct, she embraced Christ sometime between when I knew her in high school and when I knew her at ISU. But we haven't spoken in years. Facebook, as it has done with many people, has reconnected us, at least at a level where we can at least see what is going on in each other's lives. Facebook, provides a service at least at that level. But it can never replace intimate conversation.

This friend has seen my posts about being a parent of children with special needs. Today she found a story about a man named Jack Barr who two years ago went through the grief of finding out he had a daughter with Down Syndrome. In this man's case, he seriously considered abandoning his family in the face of depression and grief over this news. (See story here.) My friend went on to praise me for being "an awesome dad" and thanked me for letting her "peak into my journey."

I read the article about this man and saw much of myself. Though I knew just leaving could not be an option, I can't describe the grief and disappointment that one experiences when news like this falls on one's ears. I said things to my wife I should never have thought, let alone said, in the grief I was experiencing. I hurt her. I am truly sorry for that, and I repent.

Elisabeth was much better at handling this than me. So was my son Christopher, I guess, because he has no understanding of Trisomy-21. Catherine isn't a Down Syndrome baby to him. Catherine is his sister. He adores her. We call him "the Kiss Monster" because he just won't let up when he wants to kiss her. She loves it. She turns to him to meet his kisses with her own.  Noah loves her too in his more reserved way.

I wrote a year ago about how I could not resist the charms of this little girl. She is a gift to me. She is a teacher to this teacher. She laughs when I rub her hand along my unshaven face in the morning. She is my precious little girl who has changed my life. I came to embrace the fact that her life will serve a purpose.

I am thankful that my friend offered such wonderful encouragement to me this morning. But if I am an "awesome dad," the awesomeness does not come from me. It is not something within me. The reality is that I am the same as Jack Barr. I am a dad who is selfish and wants his own way. I am a dad who is disappointed and frustrated at lack of perfection in my children. I am a dad who at times wants to give up the fight of daily life. I am a weakling. My wife is braver than me. I need to praise her more for her bravery and her commitment.

The "awesome dad" in me only comes from one thing. That thing is the reality of the gospel. My Heavenly Father had one PERFECT SON, JESUS CHRIST, that he sacrificed in order to redeem many imperfect children throughout the world. The spiritual reality is that I am a disabled child in the eyes of the Heavenly Father. I am disabled by my sin and rebellion against Him. I am a slave to that rebellion without His gracious intervention in my life. He could have, in his righteousness and holiness, left me in my disability. He could have abandoned me. But he did not do that. He sent Jesus on a rescue mission to save me. It cost Him His PERFECT SON, to save his imperfect rebellious children.

The only true Awesome Dad, is our Heavenly Father. Through the redemption He provides I can only reflect in this life what He has done for all eternity. While I remain in the imperfection of this life, I can only reflect it imperfectly. But I have surrendered to the reality that I must do that when it comes to dealing with my children. I must be gracious, patient, but firm. I must love and protect them and train them. I must accept their shortcomings and rejoice at the milestones they reach. My "awesomeness" is not my own. It only comes from the one who is truly AWESOME. I could not be that on my own.

So thank you friend, for your encouragement today. I am not rejecting it. It is truly meaningful. I am just directing the praise to where it really belongs. Thank you for your commitment to pray for our family. I believe you are heard. I pray blessings for you as well.