Last night my dear friend Alysia called to talk. As a youth group leader I mentored Alysia throughout her middle and high school years. In college, she joined our leadership team. During those years I was raising three sons. Joel, our youngest, was diagnosed with autism on that journey. After graduating with a nursing degree Alysia married and had seven children. She and her husband are missionaries with SonSet Solutions, serving here in the States. Their second son has Asperger’s. Her youngest, Jesse, is profoundly disabled with Down syndrome, thyroid disease, and possible autism.
Last night’s conversation was so moving, so universal, so important to all of us who are raising kids with disabilities. I found myself chewing on it all night long, and decided to write an open letter to Alysia (with her permission, of course!). I invite all of you to read along:
Dear Alysia,
Thanks so much for your phone call last night. How I wish we lived closer so that I could be a physical help during these hard times with Jesse.
You asked me about “this thing called prayer.” You told me you’ve cried out, “again and again”, for healing for Jesse. You’ve found yourself reeling those prayers in—making them “safer and more sensible.” You don’t ask for total healing anymore—“it’s obvious God isn’t going to do that”—so the cry of your heart these days is simple. “Please make Jesse happy, God.”
The Lord gave you two life-changing boys, Alysia. All of our children change us, but these special kids, they change us to the core. They take us to the very foundation of our faith—to the very core of who we are, and who God created us to be. They take us to that place where we cry out, What is this thing called prayer, Lord?!?!? I don’t understand it anymore!
What an honor to have you share that cry with me last night. Believe me, I’ve cried that same prayer many times since God gifted us with Joel thirty-plus years ago.
Of course, introvert that I am, I had no answer last night. No answer other than this is a good question to be asking right now. No person of deep faith is afraid to ask this question as her child bangs his head against the wall, cries constantly, cannot be settled, cannot voice his pain or needs, chooses to spend the majority of his time alone in his room where it is quiet, does not seem to thrive.
What is this thing called prayer?
What do we do when our prayers are not answered for our beloved children, especially when they are suffering?
How does that affect our understanding of who God is?
We’ve been taught through years in Sunday school and church that prayer is coming to God with a list of people or situations that need healing. And intercessory prayer is part of what prayer is. But only a part. We’re so seldom taught—so seldom shown—that prayer is intimacy with God. A divine, two-sided conversation; often a wordless conversation! 
Prayer is a way of listening to God, of communing with God, of experiencing God’s presence within us, of resting in God’s presence and truly knowing what it means to be God’s Beloved.
In Celebration of Discipline, Richard Foster writes, “In prayer, real prayer, we begin to think God’s thoughts after Him: to desire the things he desires, to love the things He loves. Progressively, we are taught to see things from His point of view.”
“To pray is to change” (thanks again, Richard Foster, for this pearl of wisdom from Prayer: Finding the Heart’s True Home). Just as our boys continue to change as they grow, prayer changes us as we grow with them.
We ask God to change our sons and He changes us instead!
Another of my favorite quotes on prayer is this from Henri Nouwen’s book, The Way of the Heart: Desert Spirituality and Contemporary Spirituality:
“Prayer is standing in the presence of God with the mind in the heart; that is, at that point of our being where there are no divisions or distinctions and where we are totally one. There God’s Spirit dwells and there the great encounter takes place. There heart speaks to heart, because there we stand before the face of the Lord, all-seeing, with us.”
You know, Alysia, that I am an advocate of healing prayer. That I belong to a world-wide healing ministry (bridgeforpeace.org). Wally and I have both seen miraculous healings. Lame people walking. Blind people seeing. Depressed people singing for joy.
I will never stop praying for that kind of miraculous healing for Joel.
And yet, because we live in this in-between time—the Kingdom come yet not fully come—the yet and not yet, we don’t always see our prayers answered the way we would like.
In his disability, in the midst of his roller-coaster moods, Joel continues to bring me to the throne of God on a daily basis. He teaches me that I can’t do anything on my own—that it is through my weakness that God’s strength flows.
I am learning, Alysia, that Joel is a witness to what God desires for me. To live simply, to live with compassion, to ask for help when I need it, to give help when I am able, to love God with all my heart, soul, and mind, and love the people around me unconditionally. Joel makes it look easy. It’s not so easy for me!
Prayer has become, for me, a place to simply sit with God. To get to know Him better. To soak up His love. To be filled with His light. To let that light and love spill over to those around me.
I pray, as you pray, that Joel and Jesse would be happy. That they would know they are Beloved. That they would touch the hearts of all who know them. That they would be agents of change in a world of chaos. 
I’m going to close with one more quote from Nouwen, also from The Way of the Heart: Desert Spirituality and Contemporary Spirituality.
“When we say to people, ‘I will pray for you,’ we make a very important commitment. The sad thing is that this remark often remains nothing but a well-meant expression of concern. But when we learn to descend with our mind into our heart, then all those who have become part of our lives are led into the healing presence of God and touched by him in the center of our being. We are speaking here about a mystery for which words are inadequate. It is the mystery that the heart, which is the center of our being, is transformed by God into his own heart, a heart large enough to embrace the entire universe. Through prayer we can carry in our heart all human pain and sorrow, all conflicts and agonies, all torture and war, all hunger, loneliness, and misery, not because of some great psychological or emotional capacity, but because God’s heart has become one with ours.”
I love you, Alysia. May God fill you with Holy Spirit strength and courage in the days ahead with Jesse. And may His healing power flow through both of you.
Love,
Kathy
If you are interested in reading more about prayer and Alysia’s story of raising two boys with disabilities, you can find it here in my newest book, The Spiritual Art of Raising Children with Disabilities (Judson Press, 2014).
Images:
Open Hands – Shutterstock.com
Candle – mygraceumc.com
Beloved – judydouglass.com
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