I had a lot of expectations for what I thought my life would be “when I grew up”. Some of my big dreams went from becoming an eye doctor when I was 8 years old to wanting to be a lawyer until I finished my undergrad studies in 2005, all while thinking I could continue to pursue my love for ballet and dance on the side. One of the titles I never expected to have was T1D Mom. That title was granted to me on June 1, 2023. A day that changed my life, my family’s life and
especially my son’s life forever.
John’s diagnosis isn’t that different from other T1D’s and like so many other families of T1D’s, the impact was monumental. He was 14 years old, an incredible athlete - competitive swimmer and distance runner, the healthiest eater in the family. He had come down with the flu in the winter of 2023 and we noticed he never fully recovered. He was more tired than usual and didn’t bounce back to 100%. Yet in true John fashion, he pressed on. Running track and swimming 5-6 days a week, keeping up on his excellent grades, nourishing his body, never ever complaining. As the weeks and months went on, we noticed he seemed a bit thinner, more lanky but just thought it was his 14-year-old physique, maybe in a growth spurt. He was also so much more thirsty than usual and completely ravenous; couldn’t get enough food or water. With John being my only son among his 3 sisters, I thought this was just how all teenage boys were. I had heard the phrase “eating us out of house and home” and it was just the phase I thought we had entered. However as time progressed, my mother’s intuition told me something just wasn’t right. John felt that, too. I remembered reading about diabetes causing excessive thirst, so I thought it might be time to go to the doctor and get some answers.
John had bloodwork done to check for lots of different things that might be going on, but the doctor reassured me that “he didn’t fit the bill of a diabetic”. I am really glad we had her check for that anyway. A few days later on June 1, 2023 I received the call that changed our lives. “Christina, I need to tell you that not only is John positive for Type 1 Diabetes, but you need to go to the emergency room as soon as possible. ” Dumbfounded, I called my husband and tried to make sense of all of this. How could this be? He eats so healthy. He is an athlete. He doesn’t eat sugar or junk food. This doesn’t make any sense. I knew that labs don’t lie, so we took him after school to the emergency room. As the nurses gave him his first finger stick of many, the monitor read the word “HIGH” . Both nurses looked at each other with a bit of panic. “That reading means his blood sugar is over 600. ” Complete gibberish to me… I had no idea what a blood sugar of 600 was but I knew from the looks on their faces it wasn’t good. They rushed him back to a bed and got him situated. He would be staying the night so they could regulate his blood sugar and be sure his body wasn’t heading into DKA (Diabetic Ketoacidosis), a condition caused by high blood sugar over an extended period of time. It can affect a person’s organs and cause damage, even coma and death. I thank God every day that we got to the hospital when we did, as he was a few hours away from that being his fate.
That evening in the Emergency Room, acronyms and words such as DKA, T1D, insulin, ketones were all floating around us in bubbles we did not yet understand. I cried a lot. It’s a terrible feeling as a mom when your child gets sick. 9 times out of 10, they recover and move on. But this one hit hard. No recovery, just management. Life long. LIFE LONG. That’s a long time when you’re just hitting your teen years. A long time to worry about insulin dosages and carb counts and ketones and lows and highs. My heart hurt for my son and this gut punch he was enduring. There was no taking this away from him and that was a hard pill to swallow.
The next day we attended what I call Insulin 101… literally 8 hours of learning about insulin dosages and nutrition and carb counting and injections and long acting versus short acting insulins. My husband and I watched our son in awe as he gave himself his first insulin injections and stayed focused learning everything he could about the disease and how to manage it. He was always a special kid, but this day, he truly became my hero. It was during those moments of Insulin 101 that he truly showed us just how strong and brave he really is. We also learned that eating sugar and junk food has absolutely nothing to do with a T1D onset. It is an auto-immune condition that can onset at any time and that there are genetic factors contributing to it. Because of the lack of public knowledge and information, I had NO IDEA. I was totally misinformed. I cried again for the false information I had, for my ignorance about a disease I knew nothing about.
The Pediatric Endocrinology team at Penn State Hershey Medical Center are angels on earth. The care, love, support and education John received that first 24 hours was so next level. Equally, the attention given in the days, weeks and months that followed was just as extraordinary. We are eternally grateful for this gift.
In my new found role as a T1D mom, I spent countless hours learning about the disease. I counted out exactly 17 grapes and put them in baggies because we knew that 17 grapes equals 15 grams of carbs. I learned how to order diabetic supplies. I organized those supplies in a huge tacklebox with each drawer labeled with its contents. I worked on 504 plans with the school. I pre-carb counted his school lunches and texted him his daily carb count, so it was one less thing he had to worry about. I also cried a lot. I felt so helpless at times. All I really wanted was to take this away from him and that was one thing I couldn’t do. It took me a good 6 months before I had a day where I didn’t cry. However, I allowed myself to grieve what was and accept what our new “normal” looked like.
I NEVER want to make this about me. It’s not about me or my feelings. It’s truly about the brave young man that is our son. It’s also about the countless other T1D’s who have had to become their external pancreas. Making multiple decisions each day with a drug that, if dosed even a little too much, can kill you. The respect I have gained for every T1D is immeasurable. However, I also recognize that as a mom, you wear your heart on your sleeve when it comes to your children. When they hurt, you hurt. They are literally an extension of your cells… how could you not? So if you are a new T1D mom, I just want to say I see you. I recognize the sadness you feel and the helplessness you face. I also want to say this diagnosis will not define you or your child. If you handle it with grace, your relationship with your T1D kiddo will just become stronger. You are capable, just as your child is capable. You’ve got this, I promise.
Over time, things have become easier, as things often do in life. Diabetes doesn’t define our son. He continues to be an incredible student and athlete and is a senior in high school. He is the president of FBLA and state champion in Business Ethics, he is the swim team captain and has attended Pennsylvania State Swimming Championships for the last two seasons. He is a mentor in the Big Brothers/Big Sisters program, a swim lesson instructor, and so much more. He continues to inspire me through his grit, determination and strength. When diabetes gets in the way, he rolls with the punches. He is a better person for it. As his mom, I still worry about a low blood sugar. I worry about having enough Dexcoms to last us the month and panic if I think I didn’t order insulin. But it has become part of us and just an extension of who we are as a family. We are also better people because of it. It’s funny how things like that happen and silver linings always reveal themselves.
As the co-founder of VN, it is my mission to bring attention and awareness to this disease. Type 1 Diabetes affects nearly 9.5 million people worldwide, with children and young adults under the age of 20 making up about 1.85 million. Nearly 515,000 new cases are diagnosed globally each year. I believe it is my responsibility as a mother of a Type 1 to spread awareness and truths about the disease and educate on warning signs to look for in a new onset. I have lots more to share about T1D and I look forward to creating a collaborative community here at Vast Nutrition where encouragement, positivity and raw, open emotions lead our mission towards connection and community. I hope you’ll join me.
In good health-
Christina
