There’s Always Hope

WRITTEN BY: Erin Elizabeth Jesensky

It was three days after Christmas and it was unusually cold for a California day. Just like any other day I was playing in the park with my brother and sister. My dad came to me and said, “We need to go now.”

Together we all complained. We had just gotten to the park, and already it was time to go.

“We have to go see the doctor about Erin,” dad said.

I ran over and asked mum, “Why?”

She told me they needed to run more tests. I’d lost weight over the past month and just the day before my parents had taken me to the doctor for blood tests.

And just like that it came from nowhere: “Erin, the doctor told us, you have something called Type 1 diabetes.” My family and I sat in the doctor’s office. I remember how calmly those words were said, like it was no big deal. Having no idea what any of this meant, I looked at my mum to see her reaction. Her body began to tremble and shake, but there weren’t any tears yet.

I had know idea what diabetes was, why would I? I was only 8 years old. Why did I have it? I felt fine. I wasn’t sick. I had no idea that the journey my family was about to begin.

I smiled and nodded my head at the doctor as if I understood everything I was being told. I remember my dad asking to speak with the doctor outside the room. Then, just as quickly as I had been told of my diagnosis, reality came: needles, insulin, lancets, test strips, books of information, more doctors, counselors, etc. I just kept nodding like I knew what was happening to me.

My parents were told to test their own blood glucose and inject themselves with saline before they were let loose on me. My mum was shaking so much that I didn’t know how she’d be able to do it, but she did.

The fear began to rise in me. What did autoimmune mean? Why did everyone keep telling me I could still eat anything I wanted but I would need to have an injection before? Why, why – me? I was terrified and looked to my younger brother, who was sitting beside my younger sister. They both looked so sad. Tears were under my brother’s glasses, but when he looked at me he jumped into action. He had never been afraid of needles, and he knew how terrified I was. He was the first to test his own blood glucose and to tell me that it didn’t hurt.

As my doctor sat with me, he explained to my parents that we would all feel grief for my loss. That we would have to mourn for a part of our lives that we would never get back and we would need time to let our bodies do this, all of us. In the same serious calm voice my dad asked the doctor to stop. You see, we were already grieving. It was exactly 40 days since the sudden passing of my beloved Grandpa or Grandpa-pa as I liked to call him. That was the first time I had seen mum’s body shaking like it was now.

Walking into my home, nothing seemed the same. The smell of the Christmas tree made me feel sick. I didn’t want to eat anyway, as I knew that meant I would need a shot of insulin. The days that followed were terrifying. Dad pinned me down as mum injected me over and over again. We all cried. I knew they didn’t want to hurt me, and I knew they had to do this so I could live, but I didn’t want them too. It was exhausting. It is exhausting.

I read lots of books the doctors had given me. I understood exactly what had happened to my body. My pancreas had decided to slowly die, to no longer provide me with the insulin I needed to eat food. I wanted the truth so I asked my mum if my pancreas would ever work properly again. I knew the answer, but I wanted my mum to tell me. She looked and me and said, “No, baby – your pancreas will never work again.” I took her hand as tears fell from her eyes and said, “But mummy there’s always hope.”

On New Year’s morning as I awoke in bed, I jumped in a fright. For a split second in time I’d forgotten all the things that had happened. Then I saw mum lying beside me, and I remembered why she was in my bed. Instead of crying we both started to laugh. The sound of our laughter brought my dad, brother, and sister into my room. As we lay together mum and I made a pact that our resolution for the New Year would be no more tears with shots. That diabetes would not define me or us as a family nor would it stop the laughter our house was so used to. This is us. The family that talks to my slowly dying pancreas, encouraging it to keep chugging along even though we know it is a matter of time.

To my diabetes, you have not stopped me from playing all the sports I love, and there’s a lot of them. Some days I have to pause to get sugar to make it through the game, but you haven’t stopped me, Type 1. You have changed our lives forever, but you have not changed me. I am the girl who is always smiling on the outside, even though on the inside most days you make my heart hurt.

As I think of my Grandpa-pa and the days that I spent chatting with him on his garden bench in Scotland, I can feel the warmth of his love. I am Erin Elizabeth Jesensky. Visibly you would not know that I have an autoimmune disease. I am an incredibly healthy eight-year-old girl who horse rides, snowboards, plays soccer, basketball, softball, swims, and goes to ballet school. I will always miss the old me, but I still love my life.

Talk to other families impacted by a T1D diagnosis.

Erin Elizabeth Jesensky

The Jesensky family lives in Mountain View, California, and has three children: Erin, who is 8. Kyle, who is 7. And Elsa, who is 5. They have no family history of autoimmune conditions. Erin plans to ask for donations to organizations like Beyond Type 1 instead of presents for her birthday this year.