On Mother’s Day, I received a poem from Christiane entitled “I Wish.” There was a picture of her at the top blowing on a thistle and written with a black marker in her own handwriting, the last line read, ”I wish that there was no more Batten.” I swallowed hard knowing that this was one of those difficult moments.

Two weeks earlier, Christiane and I had gone for a walk to the hardware store to buy some birdseed. It was the first time we had ventured out so far from home on foot, and she was especially delighted that we had successfully crossed such a busy street to get there.

On our way home we stopped at a friend’s house to visit. While we were there Christiane was introduced to a woman who kindly told Christiane that she had her picture on her refrigerator and that she prayed for her every day. Christiane had a puzzled look on her face and I guessed that she might be wondering why someone she had never met was praying for her every day. So when we left, I asked Christiane if she knew why that lady said that she prayed for her, and she answered “No.”

I explained,“Because you are the inspiration for the foundation, Christiane, a lot of people see your picture often and know who you are,” I said. “That lady feels sad that you are losing your vision and that you are going to be blind, so she prays for you.”

Christiane digested my explanation for a brief moment, and without hesitation asked, “Mom, do blind people die?”

“Yes,” I answered, “blind people die, we all die.”

Then she quickly added in a blurt, “Because my friend told me that blind people die, and her mother is a doctor.” Another difficult moment, because at this point, I knew what SHE knew in her heart, which was “I’m going to die because of Batten disease, right?”

I answered “Yes, Christiane, even kids with Batten disease die when they are older, but God is the only one who knows when and where and how we are going to die, not even a doctor knows that.”

I desperately wanted to know more about their conversation and to address anything she may not understand or be curious about, but she had no interest in further discussions. As quickly as the conversation started, it ended. It was as if God were to simply say, and in a flash, “My grace is sufficient for you… that’s all you need for today.”

Aren’t our children wonderful to remind us of such simple messages? After all, it was all she needed, her portion of knowledge of the story, an explanation… for today. Sufficient. Satisfied.

A smile quickly returned to her face, and the conversation promptly returned to her accomplishment of crossing such a busy street and trekking a mile from home.

So I look to my own child, in the worst of circumstances, strong, brave, confident, courageous, fearless, herself so unsure of her own future and unthinkable destiny. Yet she believes what her mother says is true, trusts that I will never leave her, and is grateful for the simplicities of the day. Isn’t it marvelous that God gives us children who love us, to show us how we are to love Him? More specifically, God gave me a child who models strength and faith, in spite of her circumstances.

I loved her poem “I Wish.” I wish too. In difficult circumstances, the child in all of us wants to close our eyes, blow on a thistle and wish wildly for something to magically happen.

But instead of a wish as fleeting as a thistle disappearing in the wind, God gives us hope. Hope: To wish for something with confident expectation of its fulfillment. Comfort, confidence, and trust in Him to fulfill his masterful plan, and for that I am very grateful.