Sometimes God chooses us for a journey that we would never have chosen for ourselves, but in the process, we grow closer to Him and become who He had always planned for us to be. This is the case for my sweet daughter, Jovie.
I’d love to share the story of what God has taught us through Jovie. Please join me for a 3 part series where I will tell you about her diagnosis, the amazing support system that we lean on, and the lessons that we are still learning day by day.
I am a homeschool mom of five kids and our middle child, Jovie, has walked a challenging medical journey throughout her nine-and-a-half years of life.
Jovie was born with a congenital cataract and had to have surgery to remove it on her six-month birthday. After a year and a half of patching, contacts, vision therapy, and appointments under anesthesia, the doctors realized that she actually had an irreparable detached retina either from birth or from the cataract surgery when she was a baby. At three years old she was deemed legally blind in her right eye.
A few years later, just before her fifth birthday, Jovie began to have stomach trouble and didn’t seem to be growing as quickly as she should, so we were referred to a gastroenterologist. It was discovered that Jovie had Celiac Disease and needed to immediately stop eating all gluten. For a year, we learned all about Celiac and how to carefully read all labels and make appropriate adjustments to her diet. Thankfully, with these changes, Jovie began to grow and feel much better.
About a year later, we began noticing that Jovie was hungry all the time and she began waking up multiple times a night to go to the restroom. At a routine GI appointment, the doctors drew blood for her normal Celiac tests and in the blood work they ran a blood glucose screen. My husband works in the medical field as an Athletic Trainer and my dad is a Pharmacist so once we had two slightly elevated blood sugar tests, our family had a pretty good feeling that Jovie was going to be diagnosed with Type 1 Diabetes. We were sent to Vanderbilt Children’s Hospital where Jovie was officially diagnosed with Type 1 and admitted only a month after her sixth birthday. She spent a few nights in the hospital getting her blood sugar under control while our family began the education process of caring for a child with a life-threatening medical condition like T1D.
While all of her conditions are challenging in their own way, T1D is the diagnosis that could take her life most quickly if it is not managed well. Type 1 Diabetics are insulin dependent. Their bodies are not able to make the insulin they need to process sugar within their cells so that they can have the energy that they need. This disease has no cure and the people who get diagnosed with it haven’t done anything to cause it. High and low blood sugars can both have negative effects on Jovie’s body and in the short term can cause issues with concentration because she doesn’t feel well. In the long term, the effects can be much more devastating with the consequences of unstable blood sugars leading to heart issues, nerve damage, kidney damage, eye damage, skin conditions; the worst-case scenarios can even lead to death. Needless to say, the stress from this disease is felt by all of those who love and care for the person with T1D.
From day one, our girl took everything in stride and managed all the big life changes with a maturity far beyond her years. At only six years old Jovie learned of her condition and began taking on the management of her own carb counting and insulin shots. She hardly ever complained or cried about her diagnosis and quickly became an advocate for others managing Type 1 Diabetes just like her. Today, after managing her disease for almost four years, Jovie is a pro and can keep track of her own carbs and give herself her own insulin deliveries from her pump. She checks in with us when she needs help, but we trust her completely with her own care and are so proud of the way she has stepped up to the challenges that have come her way.
While our daughter has been so very brave through everything, there are plenty of challenges that come along with her complex medical care. As her mom and primary caregiver, I have plenty of days that I fight against mom guilt. I feel sad that she has had to face so many things. I worry about the foods she is eating and what they will do to her blood sugar numbers. I worry about the fact we allow her to manage a lot of her own care and I wonder if I am asking too much from my fourth-grade daughter. I worry about the fact that my other kids don’t get enough of my attention because Jovie’s health has to sometimes take my focus from them and their needs. I worry about the cost of Jovie’s medical supplies. I worry about running out of supplies, because if we do, Jovie will get very sick very quickly. I fight with insurance companies about the cost of her supplies and her medical bills. The days can be hard and can weigh heavy if I let them.
With all of the stress that Jovie’s diagnosis can bring, I also find myself sitting in moments of thankfulness. We have learned so much and our family has become a team that works together. I’d love to tell you more about our amazing support system in my next blog. For now, I’d just like to say, if you have a medically fragile child, you’re not alone. We can do this!
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