Type 1 Diabetes: 5 Years of Chronic Illness
Brittany V. • January 5, 2021
TL;DR:
After her young son was diagnosed with
type 1 diabetes at age four, Brittany and her family faced an overwhelming new reality of constant blood sugar checks, insulin dosing, and sleepless nights. The early years were filled with fear, guilt, and exhaustion as they learned how to manage a chronic illness that never turns off. Five years later, while diabetes remains challenging and caregiver burnout is real, their family has developed resilience, strength, and routines that allow their son to thrive. Their journey reflects the emotional and physical realities many families experience while raising a child with
type 1 diabetes.
Life Before Type 1 Diabetes
Life before type 1 diabetes seems like a dream. A dream where my son ran freely without devices on his body. A dream where I could sleep soundly without the fear of losing him. A dream where his body is not scarred from needles. A dream without
high and low alarms. A dream where my son lived a normal life. Sometimes I wonder, did we ever actually live that life? A life without type 1 diabetes? When I think about life before type 1 diabetes, it fills me with sadness and a deep longing for the past. I feel a sense of nostalgia that burns so deep it feels like my heart is leaping out of my chest and reaching for the past. I am reaching for that sweet boy who was able to eat whatever he wanted whenever he wanted, without the worry of counting carbs or blood sugar numbers. I wish we could go back in time and enjoy life one more time without type 1 diabetes. It has been five years since my son was diagnosed with type 1 diabetes, and yet, it feels like an entire lifetime.
The Day Our Lives Changed Forever
November 12, 2015 was the day our lives changed forever. Our lives would never feel normal again. There was no transition period. We went from living our lives with so much freedom, to living a life where we had to poke our son 8-10 times a day just to survive. He used to hide from us when it was time to eat. I even caught him hiding behind the couch one day with a bag of marshmallows. I could see the fear in his eyes. The confusion. He was only 4 years old. He did not understand that we were not trying to hurt him. No matter how many times we tried to explain it to him, he was still scared of us. He cried. He called us mean.
Those days were hard, really hard.
I had so much guilt. I was riddled with fear and anger. My son’s quality of life was changed forever. I blamed myself. It MUST be my fault. I thought, how did this happen? Was it vaccines? Did I start solid foods too early? Should I have eaten more vegetables while I was pregnant? I understand now that I cannot blame myself, but those early days were dark and full of hopelessness and mourning for our old life. I found myself experiencing deep jealousy towards everyone whose life was not impacted by type 1 diabetes. Everyone’s lives seemed so much easier than ours. I
felt isolated and forever exhausted.
Learning to Manage Diabetes as a Family
We learned about carb counting and insulin to carb ratios. We learned about high blood sugars and low blood sugars. We learned sick day protocols. We learned about ALL the things that can affect blood sugar numbers like exercise, diet, and hormones. We were prepared for how difficult this disease would be on our child but there was no formal education or training on how hard it would be on us. As a type 1 parent, we are forever consumed. Diabetes is on ALL the time. You can never turn it off. Type 1 diabetes leaves caregivers physically and emotionally drained.
We are forever changed since our son’s diagnosis. Type 1 diabetes has forced me to find a strength within me that I did not know existed. I can survive on very little sleep. I can change an insulin pump with my eyes closed. I can tell you the exact grams of carbohydrates in almost every food. I can smile and be strong for my son even though on the inside I am quite literally screaming and cursing diabetes. Chronic illness drains you and makes you feel as if you might collapse at any moment but it also gives you a strength that you never knew was possible.
Celebrating 5 Years: Thriving Despite Type 1 Diabetes
We have come a long way with this disease. Diabetes is still hard. Some days are downright defeating. Caregiver burnout is real. We survived 5 years and I would say we not only survived, but my son is thriving. Every year on November 12th, we celebrate my son’s strength and how far we have come with this disease. I was curious as to what a 5-year anniversary symbolizes. Turns out that wood is the traditional “gift” for a 5-year anniversary, symbolizing the durability of one’s relationship. This quite literally describes our “relationship” with type 1 diabetes. We have stayed persistent, we never give up, we fight every single day. Wood is long lasting and durable, just like our continual fight and sheer resilience to never stop battling this disease every day.
