Sunday, November 25, 2012

The Madeline Song

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
-Albert Einstein





When our daughter Hannah was only a few months old, and even before her birth, it was evident to me that her life had a divine touch on it. The way she almost wasn’t conceived in the first place, the way God prepared our hearts to receive her, the miscarriage that precipitated her conception, all the prayers during the pregnancy on her behalf - it all seemed point to something very holy. Then - her birth defects, her very early social graces, the way people rallied around our family preceding her heart surgery in 2001, the way we realized - after the fact - that her initials were H.I.S. - it all created the sense (at least with me) that something extraordinary indeed was going on.

I didn’t know quite what to expect. Maybe she would become someone like Joni Erickson-Tada, who turned her handicap into a ministry. Maybe she would graduate from High School at age 16, college at 18, and become a missionary doctor at 20. Perhaps Hannah would become some kind of evangelist like Katherine Kuhlman, who could look into people’s souls with piercing eyes, speak divine truth into their lives, and heal their illnesses with a prayer.

But as we watched expectantly over the next couple of years, it became apparent that these things would not take place. As her development fell further and further behind, we prayed, had her anointed with oil (as if to really get God’s attention), and took her to Mayo Clinic. She’s been officially diagnosed with Turner Syndrome with Cerebral Palsy, and accompanying anomalies - medical terms you’d have to look up in the dictionary: Scoliosis. Hemi-hypertrophy. Tortocollis. Pulmonary stenosis. Her Tetralogy of Fallot (hole in her heart) was surgically corrected in July of 2001. Now, at age three, she’s far behind “normal” in her development. She can’t sit alone, feed herself, roll over, walk, talk in words, or use her hands. By standards of ignorance or insensitivity, she’s a “retard.” By “normal” family values, she’s a “weight” or a “drain.” With four surgical procedures in three years, her medical expenses have cost us, friends, family, and Fortis Insurance Company quite a bit of money.

Yet there is something about Hannah that’s unusual, compelling, extraordinary - holy. If her siblings pull our pet cat Pewter’s fur or ears, he bites as if to say, “Enough!” But let Hannah do the same, and he never retaliates - never. Hannah sometimes just stares at a new face, but sometimes she lets fly a captivating smile. Early in her physical therapy, Sue took her to the local hospital, which was also frequented by the neighboring nursing home residents. Following a Hannah smile, elderly people in wheelchairs frequently made the comment, “She just made my day.” How did she know which face to smile at? Others have commented that just the sight of Hannah’s apparent joy brings them perspective on their personal problems, because here’s Hannah, unable to “have a life,” and she’s more joyful than anyone. Hannah’s father, who sometimes gets a little too wrapped up in his work, only has to sit in the rocking chair with Hannah for a few minutes upon arriving home, and nerves calm, stress drops, peace rises. Hannah’s life is something of a light to us “normal” folks.

I suppose it is possible that Hannah’s difficulties are a result of someone’s sin. It’s possible that her conception too closely followed the miscarriage. But I choose to see it as the late Rich Mullins might have seen it. Rich wrote a song about a little girl named Madeline Smith, who was born with severe defects. A line from the song: “God gladly bends just to hear Madeline when she prays.” When his sister gave birth to a boy with severe defects, Rich called and congratulated her, “I’m so proud of you!” She was incredulous. She didn’t understand; she thought she’d been cursed. But Rich said to her, “Don’t you understand, that God trusts kids with special needs to parents who will give them special love?” 1

That was the statement, heard some two years before Hannah was born, that prepared my heart to receive Hannah’s light.

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