Bright Beginnings/Devastating Diagnosis
By Carla J. Miller, Guest Writer
Today’s Treasure
You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.
Psalm 139:16 NLT
Henry was our first grandchild. He transformed Gregg and me into “Papa” and “Grandma.” He installed Paul and Sarah as “Daddy” and “Mommy.” He christened Doug and Nate, “Uncle,” and Rachel, “Auntie.” We were all thrilled to usher Henry into life in the extended Miller family. For half a year, he was developing right on schedule, conferring so much joy and pride. Henry was hale and hearty, progressing and perfect. All was beyond well, judging by his appearance; in fact, Henry was extraordinary!
Then came that fortuitous day at the age of 6 months when Henry seized in his mother’s arms while in the bathtub: so frightening, so unexpected, so upsetting. Initially, hopeful explanations were offered all around indicating that Henry would certainly outgrow this. Henry would be able to beat this. No permanent damage had been done. His brain was fine. Henry was okay. Henry would grow up normally. Henry had a bright future.
But he didn’t.
There followed a long year of scary epileptic episodes, multiple 911 calls, we-lost-track-of-how-many ambulance rides, scores of emergency department visits, neurology consultations at two locally renowned children’s hospitals, and numerous hospital admissions. Because Henry’s symptoms were very unusual, Sarah, Henry’s mother, and our daughter, often knew more regarding Henry’s treatment than the emergency department doctors. We all suspected he might have a very rare condition, yet kept hoping his symptoms would not line up with our speculations. It was a hopeful but dubious period, searching for a diagnosis but praying it is not anything serious. Henry was finally diagnosed at the age of 18 months by a veteran pediatric neurologist at Yale New Haven Hospital. Genetic testing along with clinical symptoms confirmed Henry had been born with a severe form of epilepsy that has no known cure and is marked by damaging seizures that are beyond the control of current medications. The list of symptoms was long and Henry fit all of them. I had to acknowledge it. Henry indeed had Dravet Syndrome.
It was very hard for me to accept this crushing news. “I know that you can do all things; no purpose of yours can be thwarted.” (Job 4:42 NIV) I didn’t question whether or not the diagnosis was correct. I asked: What is Your purpose, God? I battled internally and questioned Him: “ Why my grandson?” “Why my daughter and son-in-law?” “Why my family?” “Hadn’t we all tried to honor and follow God?” “Hadn’t Gregg and I dedicated our lives to the church?” “Hadn’t Paul and Sarah served you by serving others?” “Wasn’t our family legacy a strong Christian one?”
Then, my questions gradually changed as I was challenged by His Word. ”Who are you, a human being, to talk back to God? Shall what is formed say to the one who formed it, ‘Why did you make me (or in this case, Henry) like this?’” (Romans 9:20 NIV) I made a choice to focus on the character of the God I had met personally and walked with since I was 8 years old. He was a God of wisdom, compassion, kindness, justice, power, love, and redemption. “Will not the Judge of all the earth do right?” (Genesis 18:25b NIV) The God I knew and loved and followed, gave His Only Son over to death for the salvation of the world, including me, my family, and Henry. The God I serve can do no wrong. He can make no mistakes. He cannot err in judgment. He had his reasons for allowing Henry to be created as He did and I had to choose to trust Him. So, I did.
Over a span of several years of propositioning God, I came to a fairly peaceful acceptance that my questions were unanswerable. Jesus, the Perfect One, and the One who spoke the world into being, asked “why” of his Father and He received no answer: “My God, My God, Why have you forsaken me?” (Matthew 27:46b NIV) I certainly had no greater right as the created one to question my Creator. Also, I was reminded that “He gives His sunlight to both the evil and the good, and He sends rain on the just and the unjust alike.” (Matthew 5:45b NLT) God gives no guarantee to spare us from hardship and heartache, only that He will surround us with His presence and power as we go through it. “When (not “if”- my editorial comment) you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” (Isaiah 43:2 NIV)
We think we are in control of our lives. Through our decisions, thoughts and actions, we can increase the probability that outcomes will align with our plans. But ultimately, life’s trajectory lies in the hands of God, and “the Lord will indeed give what is good.” (Psalm 85:12a NIV)
PRAYER
Heavenly Creator, You make no mistakes. Your creation was completed and You pronounced it “good” and “very good”. When sin entered the world through humans, suffering, pain, death, and disease commenced. Still, we know, that in all things God works for the good of those who love Him, for those who have been called according to His purposes. And in that, I am grateful and grounded. Amen. (Romans 8:28 NIV)
(If you would like to read more about Henry’s journey to diagnosis, here is a link to my daughter’s description of it: Urban Holpful
Sharon W. Betters is a mother, grandmother, great-grandmother, pastor’s wife, and cofounder of MARKINC Ministries, where she is the Director of Resource Development. Sharon is the author of several books, including Treasures of Encouragement, Treasures in Darkness, and co-author with Susan Hunt of Aging with Grace. She is the co-host of the Help & Hope podcast and writes Daily Treasure, an online devotional.
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Contact Sharon with comments or questions at dailytreasure@markinc.org.