This is a repost...It's been nine years since JoJo was diagnosed with T1D. She is really having a hard time today. Didn't even what to go to school. Crying lots and so emotional. As crazy as this may sound she has given up hope that she won't be free from diabetes. She has accepted the fact that diabetes is part of her and she'll have to count carbohydrates, bolus, and check her blood sugar as a daily routine everyday 24/7. Diagnosed at 4 years old...now 13.
That moment is imprinted in my brain: the day, year, hour and minute of Johanna's diagnosis. I remember who was around me and the questions Jeff and I asked when the doctor told us she had type 1 diabetes. Like most parents, I wanted my children to be free of pain and sorrow. Diabetes shattered that.
In the quiet moments after our arrival home, our oldest child Naomi knocked at my door. Upon entering, she observed my face and knew I had been crying. Naomi sat down and quietly asked if it was O.K. if she didn't want to trade places with Johanna. As parents we would trade places with our children without hesitation. It never occurred to me that others in the family would struggle with this question. On the one hand they feel lucky they don't have diabetes, but on the other they feel guilty and worried about the person who does.
In the days after Johanna was diagnosed, I had to confront my feelings of sorrow and anger so I could manage Johanna's diabetes. There is nothing I could have done to prevent my JoJo from getting it. Insulin was now one of those life supporting requirements in Johanna's life. I also learned as parents we need to listen to our child's concerns, questions and feelings. They need our support and encouragement. Each family needs to find its own way in managing diabetes. It doesn't have to limit our children. We just need to fit our child's diabetes regimen into their schedule.
Here is an essay Naomi wrote shortly after Johanna diagnosis:
My sister was diagnosed with type 1 diabetes at age four. I remember that day like it was yesterday. It was the day before my 11th birthday, April 15th.
It was a beautiful warm spring day. I woke up and looked out my window. I saw JoJo (my sister), Jillian, Lydia, (my two cousins), my Auntie April, my Auntie Rachel, and my mom all sitting around on our patio. They had come from Florida and Maine for my birthday. JoJo had not been feeling herself all week. I walked downstairs, pulled open the screen door, letting in all that wonderful bright sunlight. Squinting, I saw JoJo's red hair loosely dangling from a messed up ponytail. She looked up with a pale face and said, "Good morning, Naomi." Seconds later, I heard the echo of little kids and grown-ups saying the same. I smiled and replied, "G'morning, guys." As I walked back in the house to get a bowl of cereal I heard my mom say, "Jeff and I are going to take JoJo to the doctors' today." When she came in to get ready, she did so quickly. When my parents came downstairs and picked up JoJo who seemed so tired, I could see the worry in their eyes. Even as sick as she looked, that red-haired spitfire spirit popped out with a big smile and wave, "Bye, Naomi!"
After they left, everything went back to normal. My cousins were playing outside in the sand box, my aunts were lounging in the Spring sun, and my grandma was in the kitchen making a big sandwich for herself. I went outside to join everyone. I lied down on a fold-out beach chair and started to wonder: What if JoJo is really sick? What if she dies? What will happen? But I remembered her smile and how it reassured me everything was just fine, and she was just going in for a check-up. It was probably some really bad cold.
An hour later the phone call came. Sadness flooded the house. Happy faces turned cold. The voices of my happy and strong parents were grey and weak. Tears rolled down my burning checks before I ever knew what had happened. My sister was the best thing that had ever happened to me. "What had happened?" I thought. My grandma brought me into my parents' room and told me what disease my sister was diagnosed with. The dreadful word came out of her mouth slowly and shaky, "JoJo was sent to the hospital today. She has type 1 diabetes." Of course I had never heard of that phrase before. I didn't know anything about it. Not even knowing what it was I began to cry, the crying led into sobbing, and at that moment I forgot all about my birthday party. I would have given up all my birthday parties forever for that day to have never happened.
My mom called me that night; I could tell she had been crying. I hardly ever see or hear my mom cry, which brought tears into my eyes. I held them back as best I could. Her gentle voice reassured me, "Naomi, everything is okay. Today JoJo was sent to the hospital, she was a brave little girl. Her disease will be with her the rest of her life. I will explain everything to you later. Right now I wanted to call and let you know we are still having your birthday party tomorrow. I will come home tonight, and daddy will stay here with JoJo. Tomorrow is all about you, so we are going to make the best of it." Tears rolled down my face uncontrollably. I was speechless. "Okay mom, but I really want to see Johanna (that's JoJo's real name)."
The next day, just like my mom had promised, we had my birthday party. It was amazing, all my friends were there, and the coolest part was when they all started making cards for JoJo. That was a birthday that will be treasured in my heart for two different reasons.
That night my mom was going back to the hospital so my dad could come home, shower and sleep. I begged her to take me to see JoJo, and she did. Walking into that hospital was one of the hardest things I had done in my life. Everything was a blur. It wasn't as happy as it had been years before when I came in to see JoJo when she was born. As I stepped out of the elevator I heard loud noises. "Go Yankees!!!!," which of course came from JoJo. She was riding in a wagon around the kids' floor. As I stopped the little red wagon she looked up at me, with those big green eyes. It was different to look at her, but I knew it was the same little JoJo in there. "Naomi!!" she squealed throwing her arms around me. I began to cry a little, but being JoJo she put her hands to my face, wiped away my tears and said, "Oh Naomi, its okay."
Spending that night with her, I learned so much about that disease. But one night wasn't enough for me. I did school projects on diabetes, I did research on it. I learned how to test her, give her insulin, count up her carbs, and how to be there for her when she needed comfort.
Every day and night in the hospital she got shots. They were not fun to watch, but she was brave and by the end of her stay she was a pro at it. I will always remember that day in the hospital, watching her sleep, remembering all the fun adventures we had together, and the laughs. I knew she was always going to be my little JoJo, but now she was my little JoJo with diabetes. Oh, and trust me, diabetes has not stopped her spitfire self. Diabetes has become a part of our family's life. Even though I don't have diabetes, I still deal with it. It will be in my family forever and luckily I know how to take care of it.
JoJo will have diabetes for the rest of her life, and I will always remember when and how she got it. In the elevator I thought I would never see the real JoJo again. When I stepped out of that elevator I knew I was wrong. I could hear her, I could feel her presence, and could sense her. She was a part of me, and she always will be, her and her diabetes. I saw that having diabetes didn't stop her from loving people, loving herself, and being herself.