As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” John 9:1-3
When Rhema was 2.5 years old, she was diagnosed with a rare epilepsy. (An official autism diagnosis had come a few months earlier).
After the shock wore off, I actually felt a little excited. It seemed that we had found the true culprit in the LKS. This was the reason she wasn’t speaking. Her doctor believed that if we could control the epilepsy with drugs, she would acquire language. (What he failed to mention is that LKS is notoriously hard to treat). He even suggested that she did not have autism – that the aphasia and all the behaviors we were seeing were in fact the result of the seizure disorder.
I dared to believe him. I let myself believe that she just might be cured by a magic anti-seizure pill.
We called family and friends to share the good-bad news. I sent out a prayer alert to people I hadn’t spoken to in years. I was so hopeful. I had dreams of conversations she, my oldest girl, and I would share. It was hard to imagine, but I envisioned her present, with me, those gorgeous eyes gazing into mine. I imagined the clever things she’d say. I imagined learning all about her, her personality, her likes and dislikes.
Weeks later, Brandon and I were watching the news on TV. A story came on about an autism school in Massachusetts. Oddly enough, the three students profiled in the story all had seizure disorders. As I watched the children intently, I realized then that my Rhema would fall into the “severely impacted” and “low-functioning” category. I suddenly realized that we would struggle for a long time.
I choked out, “This seizure diagnosis doesn’t mean that she doesn’t have autism. It just means that she has really bad autism.”
That moment, that realization was far more painful for me than when I first heard the words, “Your daughter has autism.”
I rarely cry openly, and so when I do, it tends to alarm my dear husband. I’m not even sure he understood my blubbering through my tears. But I remember him saying, “Let’s pray.” And I remember us sitting together on our old futon beseeching the God of heaven to heal our precious girl. We did not ask for comfort or strength; we just desperately needed her to get better.
That was three years ago.
Knowing what I know now… if I could go back to heartbroken me on the futon that night, I would say-
~You’re right, you will struggle for a long time. But this struggle will force you to the One who is sovereign.
~You’re right, you will see miracles.
~Your days as her mother will be the greatest and hardest days of your life.
~Don’t be afraid to follow your instincts, your gut, no matter what doctors or teachers say.
~You will learn to trust and enjoy God, even when your prayers go unanswered… when your circumstances don’t change. That, my dear, is the beautiful faith.
~You will be “low-functioning” at times; and it will crush you over and over again, but will keep you humble.
~You will be “severely impacted” by autism and by a God who teaches you to listen with your heart.
~Her life will be like a song, a sweet devotion…
~Words will come, words will go. But the Word of the Lord stands forever.