By Jacqueline Zulauf
Text Message Conversation 12:30 pm:
Charlize: Mom, can I please go to the doctor. I have a sore throat and maybe I have strep.
Me (Mom, Jackie): If I can get you an appointment, Daddy can take you, but you must be dressed for dance rehearsal later for the Dutchess County Fair performance.
Phone Call 2:20 pm:
Jason (Dad): Jackie, they called an ambulance and are rushing Char to the hospital. I have no idea what is going on, but you have to meet me there.
I walk to raise awareness because I would take this autoimmune disease from her if I could, but I can’t.
That 20 minute ride to the hospital was the longest of my life. You make a lot of deals with God during those moments. You see the vision you had mapped for your child’s life disappear in a wisp of smoke. You promise to trade everything good you have to simply have your daughter live. You promise your life for hers. You arrive at the hospital and immediately are told, “Oh, her blood sugar is 550. Her A1C is 11.9. She’s diabetic.” Wait, WHAT? What does that mean? How can you be sure? Don’t they need to do more tests? WHAT is Type One Diabetes?
I walk because I never want her to feel alone.
Then you’re in the hospital for three days. Three days of waking up every 1.5 hours. Watching your child be poked, hooked up to beeping machinery, questioned over and over. They literally were asking me questions about what was the difference between hypoglycemia and hyperglycemia at 3 in the morning. As they were drilling information about T1D into our heads, they were also poking holes in my child. Over and over and over again. And then they wanted me to do it! The first time I administered an insulin shot into Charlize I had to run out of the room when I was done. I mean I booked it out of there with tears blinding my vision. I couldn’t catch my breath. I wound up in an empty room and cried. I cried for knowing that for the rest of Charlize’s life I would have to HURT my child in order to keep her ALIVE. That is a tough pill to swallow. As a mother, you think, “It’s my fault. It has to be. I carried her. I was supposed to take care of her. I was supposed to keep her safe. I failed.”
Every time the nurses came into Char’s room, and it was once/twice an hour, they asked her the same question, “Why are you here?” It took Charlize three days to answer that correctly. It was then I saw the light return to her eyes. I saw my daughter, my hero, accept T1D. I watched her with pride state, “I have Type One Diabetes.” Then I watched her sass return and her rise from her bed. She told them, “I want to go home. I can do this. I have Diabetes. I’m going to be fine.” And then she danced. Yes, she missed the Dutchess County Fair dance performance, but she did a full barre warm up in her hospital room. The nurses noticed from their station what she was doing and came in and asked Char to show them, and she did. It was then they said we were ready to be released.
Charlize was ready to leave the hospital, but were the rest of us? My husband and I did not handle this transition to our new life as well. We were on a straight road and then we took a hard left, suddenly and violently. Charlize is our rock. She is 98% self- sufficient in her care. She counts her carbs, she administers her insulin, she manages complicated math equations to determine what she needs. Charlize got her A1C from an 11.9 to 5.0. We just supported her. We help her when she needs it, but she is the T1D star and we are just her cast of characters. That has been our team name for the JDRF One Walk, “Charlize’s Cast of Characters”. It’s a little different when we go out now; calculators, insulin shots, measuring spoons and cups, glucose tabs for lows, but that’s okay. She has a trendy purse to carry her supplies and a smile on her face. Some days we cry, some days we laugh. Some days we fight. All days we say, “I love you.” We are a T1D family and we are strong because of it.
At her last endo appointment earlier this March she asked her doctor if she could be completely self-sufficient at school. My husband and I looked at each other in shock and nearly fell out of our chairs when the doctor said, “YES!” Charlize is the one who has gotten herself to an A1C of 5.0, even though she was tossed hard and fast out of the honeymoon period in January. There are 6 kids with T1D in her middle school and she was granted full care of herself – free of nurse check-ins (unless she wants/needs to and her 504 still stands fully) because of how she fights flawlessly, properly, and bravely. She doses where she’s comfortable in front of anyone and continues to keep herself in range. Charlize dances 8.5 hours a week and is at the barn riding and grooming for at least 2 hours a week. She carries a 96% grade point average in middle school. Charlize controls T1D, T1D does not control her.
I walk because she is my hero who fights this invisible “beast” day and night with grace and fearlessness and it’s the least I can do.
As Charlize says, “Learning you have T1D is like crossing a street. You look both ways and then suddenly you’re hit by a plane.” If an airplane won’t stop her nothing will. Her dad, myself, our family and friends will always be her biggest supporters. She’s our teacher and we couldn’t have been any luckier than when God chose us to have Charlize as our daughter.
~ Jacqueline Zulauf, Charlize’s Cast of Characters