An extraordinary view
Disability and the Body of Christ
“There have been some complaints.”
The kind usher was caught in the middle and delivered the words with some hesitation. When I realized we were being asked to leave, my throat tightened and hot tears filled my eyes. My heart began to pound, and I wanted to fight back. Then utter sadness took over.
My beautiful 11-year-old twin girls were an annoyance for some churchgoers that night. In disbelief and with unsteady hands I gathered our things—a diaper bag, their snack bag and iPads. As we left the healing service, I couldn’t stop the flood of tears. The sting of this rejection was like nothing I had ever experienced before.
Some people feel it takes special parents to raise special kids. Others say, “I don’t know if I could do what you do.” No doubt the past decade has stretched me beyond my own capacity. But is it really because I’m someone extraordinary? I don’t think so.
Raising twins with special needs has caused me to need God in ways I never did before. It has made me aware of my weakness and my inability to cope on my own with monotonous tasks, uncontrollable seizures, aggressive behaviours, my own loss of dreams, and what author Susan Roos calls “chronic sorrow.”[1] I need the Word of God more than anything else. It’s there that I find answers, peace and balm for my wounded heart.
The spring of 2014 was an especially difficult season for our daughter Annie. Tuberous sclerosis complex is an illogical disorder that requires continual troubleshooting. Annie and Audrey’s brains are full of inoperable, benign brain tumours that cause epilepsy, autism and global delays.
Annie was having up to 40 seizures per day, and her aggression was volatile. After dialoguing with her neurology team, we took her to SickKids Hospital, where she was admitted and stayed for four nights.
Our stay at SickKids this time was short, especially compared to what many other families there were experiencing. Though our stories were different, we all shared the same pain and vulnerability.
The few minutes we spent together making toast and coffee or preparing special meals for our special kids turned Mother’s Day weekend into something truly memorable. I came away knowing there was nothing extraordinary about me or my situation at all.
Sure, my life is unique. And, yes, it’s one I might trade for an easier one some days. But it certainly isn’t something I’ve been given because I’m someone special. If anything, this life of chronic illness has shown me my need for constant support and my dependency on Someone greater.
Just as my 11-year-old old girls—who function at the level of a toddler—are constantly dependent on those who care for them, so I depend on my heavenly Father every minute of every day. Watching my children suffer, knowing they are unable to communicate their needs, pains and feelings with me, breaks my heart.
Imagining their future without me and wondering who will care for them is frightening. I suspect God knows this heartbreak too as He watches people suffer and struggle through on their own without turning to Him.
For a while after that Mother’s Day weekend I found myself close to despair. I felt the Lord urging me to “take courage,” but I needed to understand what that meant. So I began to dig into the Scriptures.
In Matthew 14:27 I read these words: “But Jesus immediately said to them: ‘Take courage! It is I. Don’t be afraid.’ ” Courage, according to Jesus, is something we are to take as we journey through this life.
When I allow my circumstances to dictate my feelings and reactions, my courage starts to melt away and my prayer life suffers. Sometimes the words won’t come or I don’t have the energy to even try to pray. But Jesus understands. That’s why He gave us His Holy Spirit and placed us in the body of Christ.
My church stands when I must sit down. They pray when my mouth is dry. They en-courage me when my heart is heavy. They speak to me forthrightly and with confidence. They display courage.
So what happens when the body of Christ lets us down?
God quickly helped me understand why the incident at that healing service happened. My passion for disability ministry needed to be refuelled. I needed to experience firsthand what many other people have felt in similar situations.
Earlier that week, as I sat in the pew all alone, I did something I rarely do. I asked God for a sign. I needed to know whether people really needed education and equipping for disability ministry as much as I thought they did. Or was I doing all this studying and training for nothing? Sometimes signs and answers to prayers come in unexpected ways. Sometimes they hurt.
I’ll say it again: I am not special. I am a Jesus follower being helped by the Holy Spirit and supported by the body of Christ. There will always be those who don’t want to understand. That causes me to pray harder for their hearts to change.
The community of Christ must be a place where everyone can belong. I am well aware that my girls can be distracting. At times I find it difficult to find that daily quiet moment with God—but I do find it.
My perspective has changed. I see my girls—and all people with special needs—as God’s image bearers. When I look at them rather than away, I see Jesus more clearly. And I count myself honoured to have such an extraordinary view.
[1] Susan Roos, Chronic Sorrow: A Living Loss (New York: Routledge, 2002).
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This article first appeared in Testimony.
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