Light in the Darkness of Special Needs

God used my son and His Son to shine light into the darkness of my heart during our very sick baby's first Christmas.

Our son was six months old on his first Christmas. By then he’d racked up one ambulance ride, two surgeries, three hospital stays, three airplane trips (two of them life flights to the University of Nebraska Hospital and one airline flight to a scheduled doctor’s appointment at the same medical facility), and dozens of 240 mile round trips to Rapid City for doctor’s appointments and procedures.

Call it the special needs version of the Twelve Days of Christmas if you like.

By the time the holiday season rolled around, all my husband and I wanted for Christmas was a good night’s sleep and to stay put. My parents and our extended families accepted the news graciously. A few days before Christmas, circumstances seconded our decision when our guy came down with the chicken pox. A mild case to be sure–only one pox on his forehead, a fever, and a week’s worth of fussiness–but chicken pox none the less.

About two days into the fussiness, I was shouting “Ba-humbug” louder than Ebenezer Scrooge ever did.

Our house was enveloped in darkness. My husband and I were severely sleep-deprived. Our baby picked up every virus I brought home from my students at school, or my husband carried from the clients at the boys’ ranch where he worked. Our son was allergic to anything but breast milk, but he couldn’t nurse so I spent hours day and night hooked up to the people version of a milking machine. Even so, he was below zero on the weight and height charts for his age. We lived 70 miles away from our family doctor, 120 miles away from the pediatrician, and 750 miles from doctors who specialized in treating children with our son’s condition. My faith was waning. My anxiety level was waxing.

I was drowning in darkness.

To read the rest of this post, visit the Not Alone website.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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