Weathering the Storm
I must have hit the grocery store right after "stock-up" day last week. As I walked through the aisles I noticed shelves filled to the edges with rows and rows of food and other necessities. Choices, choices, choices. And plenty of everything. I thought to myself how blessed we are to have such abundance. In stark contrast, a couple of days later I watched the news coverage of Hurricane Florence, and saw video footage of completely empty grocery store shelves, as residents of North and South Carolina stock up in preparation for what the weathermen are already predicting could be an historic storm. In the days before a storm, shelves are cleared and food can become scarce. In addition, people board up their windows, sand-bag their door-steps, gas up their vehicle and "get out of dodge" if they can.
But what happens when storms come without warning? When you are not prepared? When you have no reserves stockpiled? And when evacuation is not an option?
Five years ago today, we were hit with a storm that we didn't see coming. Leah was diagnosed with Type 1 Diabetes. She has often used the analogy of the storm to refer to the struggles she's had, so I thought I'd go with it, especially given the current state of our nation...waiting on the edge of our seats for the arrival of Florence.
What you learn when you have no time to prepare for a storm is that you are forced very quickly into survival mode.
Things were very scary at the beginning. We had already been through some rough waters with Leah's major scoliosis surgery nine weeks earlier. Her incision was not healing, she had no energy, and felt absolutely miserable. No matter how much she ate (and she ate a ton!) she was losing weight. At 5'9" and only 89 pounds, she appeared to be wasting away. Now we understand that since her pancreas had ceased to make insulin, her body was unable to convert sugar (carbs) into energy, so it started burning fat and muscle instead. When we brought her into the ER on September 13, 2013, her blood glucose level was at 711 (normal is around 70-120 for non-diabetics). That night we entered the eye of the storm.
Once she received the diagnosis, and was given insulin, Leah immediately started gaining weight, and her stamina and strength returned as well. It's a good thing...as this storm was not going away. Like the predictions of Hurricane Florence, it sort of stalled and continue to rain down for a long time. Leah not only needed strength to get through each and every day of this downpour of diabetes, but she also needed the determination to brave it. From day one, she took ownership of her disease and quickly learned all the ins and outs of blood sugar checks, insulin dosing, and injections. She learned how to program her insulin pump and make changes when she needed them. She routinely changed her pump's infusion set every three days, and later her CGM's (Continuous Glucose Monitor) sensors every two weeks.
Recently, she has experienced a couple of "lifeboats" that brought big changes for her: A new Dexcom 6 CGM and an upgraded T-slim X2 insulin pump with Basal IQ technology. What all this jargon means is she no longer needs to check her blood sugar with finger pokes, and her CGM and pump are in communication with each other. When her blood sugar starts dropping too quickly or gets into a dangerous range, her pump will suspend her insulin to prevent serious lows. This is a great comfort to her (and Mom and Dad as well), as untreated lows can present very scary situations, including loss of consciousness and even death. Having the Basal IQ technology will alert Leah before she reaches the low and give her more time to prevent it.
We are so thankful for these advances in technology, and often wonder what life would have been like for Leah if she had been born with this disease 20 or 30 years ago, before such miraculous advances. (Of course we also wonder what it means for the future of T1D-ers with more advances and possible cures on the horizon!)
Although her diabetes has been under control, the past five years have brought other storms as well. College struggles, changing majors and switching schools, the loss of a best friend in a car accident, and just the every day challenge of living 24-7 with T1D. As a mother, you never want to see your child drowning in grief, anxiety, sadness or stress. Many times I tried to rescue her. But my help was only short-lived before the next storm hit.
It took some time, but the storm that we were not prepared for finally cleared, and the sun began to shine again. Through all these experiences, Leah has learned to trust in Jesus more and more. She can even see the purpose in some of the difficulties she's endured, and knows that God has been preparing her to help shine His light through the storms that others might be facing.
Though still very much an introvert, Leah has found ways to express herself that we never expected. She has begun to write beautiful blog posts to share her story (in her words, not mine!), and is not afraid to tell on social media of the impact God has made in her life. She spent the past two summers helping underprivileged youth at Camp Ray Bird come to know Jesus, and enjoyed several weeks of laughter, camp songs and sunshine. She's loving her studies in Music Therapy at Indiana Wesleyan University, and feels called to this field in part out of her experience with trials and suffering, but also due to the healing she herself experienced through music.
It's been five years since I heard those words on the phone from the on-call doctor: "A couple of the blood tests show that your daughter might have diabetes. You need to bring her to the emergency room as soon as possible." The memory still rocks me. It was the storm we didn't see coming.
Leah likes to call this day "her Diaversary," and she has a little celebration with every passing year that she has managed to manage life with T1D. We are thankful for those who stepped in to rescue us when we needed prayers, someone to talk to, a shoulder to cry on, or good medical advice. Most of all, we give thanks to God for being our "anchor," and for holding us steady through the storm.
In the eye of the storm you remain in control.
And in the middle of the war you guard my soul.
You alone are the anchor when my sails are torn,
Your love surrounds me in the eye of the storm.
("Eye of the Storm," Ryan Stevenson)