“Mommy, that girl gots blue lips. How come?”
I should have been used to this question but it hurt just as much as the very first time it was asked. In my head I knew that the inquiring child meant no harm and like all children sought to have their curiosity satisfied. But deep inside the pain of being different…odd…other…tore through me with renewed intensity. And it wasn’t even my own oddness. It was my daughter’s.
Shalyn, my only child, of the auburn curls and brown eyes, looked up at me from under her sunhat. I squatted alongside her wheelchair and smiled at her. Her condition did not prevent her from walking but when an outing involved traversing large areas and encountering masses of people such as Disneyland presents, it was just easier and safer.
“Are you having a good time, love of my life?” I asked. “The parade will be starting soon.”
Her voice low and breathless offered, “Yes, Mama. So…much fun. A nice…birthday present…at the happiest…place on earth.”
Twelve years had passed since the day the medical specialists gravely informed me that my precious newborn suffered a congenital heart defect of such a nature that no current surgical procedure could remedy. They could not even advise me as to how long she would live.
So I’d treated each day as if it were the last day and poured my energy into making it the best day for Shalyn.
Now a quick prayer rose from that place of pain, the same prayer that had been issued a hundred thousand times. Lord, please use this moment for good and for Your glory.
I turned to look for the little boy whose question had been shushed by his parents. I wanted to make sure he and they knew it was okay. The little guy, about five or six years old, stood with his head slightly turned away but I could see one eye cast to its very corner in our direction.
I stood and quietly introduced myself to the parents and asked their names. I said, “It’s alright. Kids have questions. It’s how they learn.”
Then I held my hand out to him.
“I’d like you to meet my daughter, Shalyn.”
He sidled over to us.
“Shalyn, this is a new friend, Todd.”
Shalyn slowly raised her hand and with a weak grasp, gently shook his.
“Todd,” I said. “I’m glad you wanted to know why Shalyn has blue lips. I see you have a band-aid on your knee. Did you scrape it?”
“When you got that cut the blood was red, wasn’t it?”
“Did you know that it’s the oxygen that the blood carries from the heart and lungs to the rest of the body that gives blood its red color? Well, in Shalyn’s case, her heart and lungs don’t work the way they’re supposed to. Her fingers, lips, and tongue receive blood but it has very little oxygen in it and because of that her skin looks blue.”
He nodded again, eyes big and round. I wasn’t sure how much he truly understood but it felt right to treat him as though he did.
“Why’s she in a wheelchair? Her legs don’t look hurted.”
“Todd!” his mother said horrified.
Again I reassured them there was no offense.
“You’re right, Todd,” I said. “There’s nothing wrong with her legs. Oxygen also helps us have energy. Shalyn just doesn’t have enough energy to use them for taking long walks like we have to do here at Disneyland.”
Then another question came. “Why don’tcha take her to a doctor and get her fixed?”
Again the pain inside twisted. Again my simple prayer arose.
“So far, Todd, no one has been able to figure out a way to fix the problem. Maybe someday they will. We pray for that every day.”
Todd bounced excitedly up and down on his toes. “I like to fix things!” he said. “My little sister’s tricycle breakded and I tinkered around with it and made it work right. I’ll bet when I grow up I could be a doctor and I’ll tinker around and fix your girl’s heart.”
“That’d be great, Todd,” I said while exchanging smiles with his parents.
“But just so ya know,” Todd leaned nonchalantly on the armrest of the wheelchair and spoke directly to Shalyn. “You’re real pretty even if you gots blue lips.”
Smiles don’t need much oxygen to go into motion and this was one of Shalyn’s best.
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