Faith · Family

Giving Up The Dream Of Normalcy

ThingTwo

“Does your daughter have allergies?” The speech therapist asked.

ThingTwo was five and doing kindergarten at home with me, but we took her to the speech therapist at a local elementary school because of some severe stuttering that had developed over the summer.

“We thought she did,” I began. “But she’s been on allergy medicine for over a month, and she’s still blinking and sniffing a lot. I plan to call our doctor about it.”

The sweet speech therapist encouraged me to call our doctor sooner rather than later. “I don’t think she has allergies. Maybe you could call your doctor today.”

So I called our family doctor as soon as I got home and got the children settled. I had been a secondary education minor in college. I’d taken a class on The Exceptional Child; I’d blocked in a resource classroom. My mind leaped to the possibility of Tourette Syndrome. Over the phone, I described the blinking, the sniffing, the odd throat-clearing. I detailed all the other behaviors I had noticed – her twirling when she got nervous, the foot-stomping as she struggled to get words out, the bedwetting that had come out of nowhere in recent months, the impulsive bonks on her brothers’ heads with stuffed animals. And I held my breath, hoping our doctor would reassure me that these were all normal phases she’d pass through. I wanted him to laugh warmly and tell me she was fine, perfectly normal, that she’d be OK.

Instead, he said, “I really think you should see a neurologist. This is beyond my area of expertise.”

As the phone call ended, my tears began to fall. I trusted God. Mostly. And I wanted to believe that whatever happened, He would see us through and use it for good. But in that moment, my dreams for my daughter began to unravel a bit.

Later that day, on the phone with my mom, I sobbed, “I don’t want her to be different. I don’t want people to make fun of her. I don’t want life to be extra hard for her.”

When glowing young women rub their pregnant bellies, none of them hope and dream of days in neurologist’s offices, EEG’s, special teacher conferences, and a life of being different. Gradually, I had to let go of my dreams for ThingTwo, let go of my expectations, and accept a new reality.

As time has gone by, we’ve gotten used to Tourette Syndrome and it’s annoying interruptions – not only in ThingTwo, but also in ThingFour and a little bit in ThingThree. The throat-clearing, the eye-rolling, the face-stretching, the nose-scrunching, the arm-flapping, the foot-tapping, the shoulder-shrugging, the weird compulsions and lack of impulse-control, the blurted words and bursts of song – all of these are just part of our lives now.

We have bad days that bring tears. When someone in a church service or a classroom or a movie theater gives my ticcing child a dirty look. When insensitive middle schoolers mimic tics. When my son’s mouth hurts and he can’t eat because he can’t stop chewing on the inside of his cheeks. When my daughter has a horrible headache because she can’t stop rolling her eyes. Those are bad days. Those are the days we hate Tourette Syndrome. Those are the days I still grieve the dream that had to die, the dream of normalcy.

But there are days that aren’t so bad. The tics are harmless, maybe even funny – howling, opera singing, speaking in an accent, whispering the word perfect over and over and over. There are moments when we catch a glimpse of the good that can come from this crazy neurological misfiring. When ThingTwo’s experiences with Tourette’s cause an immediate bond with a new friend who also has neurological issues. When ThingFour wants to speak to his class about Tourette’s and educate them. When other parents email or call asking for information or advice, and our experiences can benefit someone else.

One of the very best days was when ThingTwo was only eight years old. She was frustrated with Tourette’s; her tics were awful; she came to me sobbing, “Why would God let me have Tourette Syndrome anyway?” That was a question I had hurled to Heaven on more than one occasion. I didn’t have an answer for it yet. Not knowing what to say, I pulled my girl onto my lap and held her while silently praying for wisdom, for an answer to give my daughter.

Immediately, a story flashed into my brain. I grabbed my Bible and said, “Listen to this!” Turning to John, chapter 9, I read ThingTwo the story of Jesus’ interaction with a blind man. Jesus’ disciples asked Him why this man had been born blind – did he sin in the womb? did his parents sin?

Jesus answered, “Neither. . . . this happened so that the work of God might be displayed in his life.” And then Jesus healed the man.

Another version words it this way – “this happened so the power of God might be displayed in his life.”

I hugged ThingTwo tightly, “Sweetie, you have Tourette Syndrome so that the glory of God, the power of God, the work of God will be displayed in your life.”

Later that evening, over dinner with a family friend who isn’t a follower of Jesus, ThingTwo retold that story from the book of John. Punctuated by eye-blinking and throat-clearing and lots of sniffing, she joyfully told this man, “I have Tourette Syndrome so the glory of God can be shown in ME! Isn’t that cool?”

That is a new hope and a new dream far better than any dream I could have had for her! Who wants to be normal anyway?

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6 thoughts on “Giving Up The Dream Of Normalcy

  1. Jennifer this made me cry too for a different reason. Piper has been suffering with severe almost debilitating anxiety and I have been questioning God wondering why in the world would he let a little girl suffer this way daily. The answer you gave ThingTwo when she was 8 years old is the answer God just gave me today through you. Thank you!

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  2. I wrote something similar to my now adult daughter with Fetal Alcohol Syndrome who was angry at God for not giving her a healing. God promises us eternity and sanctification. Even the Apostle Paul had a thorn in the flesh that was not healed. I am not sure she was ready for that answer. One day…

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  3. Thank you so much for this story. It is exactly what I needed to hear. Tell Thing Two I am passing on her words of wisdom to someone who needs to hear it.

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  4. You are beautiful! That story brought me to tears. Jesus and the blind man – I am going to file that away in my brain because I know someday I will have use of it. Thank you!

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