Life After Diagnose
World Diabetes Day is on the 14th of November I want to share with you our family's experience after the life-changing diagnosis.
It is hard to describe how it feels the moment you learn your child has an incurable disease. The earth literally disappears under your feet. You are on a freefall, life flashing before your eyes. It is messy and scary.
I had been away from home and the day before I returned my husband calls me tells our older son has been drinking a lot of water and peeing every hour until 2 am. We were pondering together what could it be and agreed to follow whether it continues the next night, and it did.
I will never forget the Saturday 12th March 2016. Our son was ok in the morning, going to his ice hockey training like every other Saturday morning. Even though he seemed ok, I wanted to make it sure and I tried to reach our hospital, but no one answered my calls. I called a friend who’s a nurse and she confirmed it’s better to check it. I booked the only time there was available for a pediatrician near our home.
We went to the doctor and she sent us to the laboratory. The nurse took a blood sugar sample from my son and I saw the result was 19, she double-checked it, but it still was 19. She asked us to wait in the lobby for the doctor and I sent a message to my nurse friend and googled the normal blood sugar levels. The situation didn’t look good and I got anxious and worried. Well, perhaps suffocating describes it better. My child has type 1. diabetes. How could it be? What does it mean? I had no idea.
The doctor called us in and asked us to sit down. She told us with her calm voice that our son has type 1. diabetes and we need to go to the hospital straight from the doctor. She told it is a common disease and it can be taken care of very well nowadays. I was puzzled. I had no idea what did it mean. The world was just spinning like crazy and I, a little human being, was standing there in the middle of that cyclone watching how my life flew apart. I just could cry. It took some time for me to be able to pay the bill for the doctor, people were looking at me feeling sorry. No one offered help or asked what’s going on. My son asked, “Are you ok mom”. “Am I going to die?” I hugged him and said, “I am sorry honey, I am ok, I am just so sad and taken by surprise. You are going to be well, mom and dad will take care of you.”
We went to the car and I turned the engine on. I wasn’t sure if I was capable of driving the car. I called my husband and told the news. We didn’t understand what was going on. I managed to drive to the hospital and we learned that we need to stay there for a week. I was in shock. The doctor prescribed the insulins and we practiced giving the shots to him seven times a day. Injecting the insulin was mentally hard. He was scared of the shots, of course, he was only 5 years old at that time. I felt so bad for him, no child should go through that. No parent should go through that either. Every night I cried myself to sleep. I didn’t want to show him how broken my heart was. It was so confusing, scary and final. My son was sick and would never be healthy. I was so angry for life and so scared for him. How could he live his life after this and how could we live our lives? I felt like this was the end of everything.
I was reading everything about type 1 diabetes. In my mind, I went through everything from pregnancy to birth and his first years. Had I done something wrong? Why did he get sick? Why does this happen to us? I was worried about the future. The hospital nurses and doctors were great and they answered duly to every question we had. It was an information overload from every direction.
After a week, we returned home with a lot of insecurity. It was like having a newborn baby and you don’t have any idea how to keep him alive. The first time went out to eat sushi, I was in panic thinking how much carbohydrates there are in the 16 pieces of sushi he’s having. I couldn’t eat myself. It was extremely heavy to meet all the friends and family and to tell them. I needed to stay strong and within I was shattered, it felt impossible to be whole again. I loved him so much. At the same time our younger son felt abandoned. Everything was around his big brother’s diabetes. We tried to figure all out at once; how to treat our son, how to give attention to the younger one, how to live our life, how to keep the family together. It was complicated.
The following year we needed to keep our eyes on his blood sugar levels all night long and it was hard, waking up every hour or every second most of the nights. I have never been so exhausted. I remember sometimes thinking when I drove back home from work, that what if I had an accident, just a small one, then would I permission to rest. Luckily I never did, but it describes well the despair I had. I didn’t know how to ask for help, I didn’t know who could help.
Now almost five years later, everything is ok, we are good, we have survived. We live a normal life, our son is doing great and the fears are somewhere there in the background, almost non-existing. The equipment we have for taking care of him are state-of-the-art, an insulin pump system with 24-hour sensoring and adjusting insulin automatically all the time, helping us with the lows and the highs. The first year was the hardest and every year it becomes easier because of the learning and the great systems that are supporting the treatment. Our son is healthy and doesn't pay much attention to his diabetes, it is like he was born with it and it's something natural to take care of.
Going through all the emotions from sadness, anger, fear to bitterness has led me to realize that I always get to choose my perspectives on life; positive and/or negative. I have decided that these circumstances do not define me or our life and I have made decisions in life that make me prioritize eg. wellbeing on a totally different level than before. Not sleeping for a year created a monster and it might have derailed me for a while, but it was only temporary. Life continued and there was a golden opportunity to change things for me and our family in our lives. And even though I never wished my son to be sick, I see the silver lining even around this cloud. This battle has made our family stronger, definitely and beyond the disease there are learning, understanding I never would have had without this experience.
Leadership Coach, Coach Trainer, Writer, and Chakrapath Teacher