Madelyn

From her mother, Renee:

Hello! I’m Renee from NJ and this is my daughter’s story. My daughter Madelyn was experiencing some irritability and frequent urination at the age of 2. I ended up taking her to the pediatrician and while they didn’t seem too concerned they sent a urine sample to the lab. On March 31,2015 I got the call that changed our lives forever. Madelyn has Diabetes. You need to head to the ER right away. I was frozen and in a panic. My suspicion had become a reality.

Fast forward, she was admitted with a blood sugar in the 600s and while not in DKA she was days away from it. I heard new vocabulary like insulin, basal, bolus, correction, ketones and my head was spinning! My poor baby lie lifeless and confused as to what was happening to her. I felt helpless and horrible having to poke her tiny fingers and test her sugar. After several days and getting a crash course in the hospital, it was finally time to get discharged. I was terrified to go home. I couldn’t take care of her. I was a teacher, not a nurse.

I was scared and didn’t want to be alone with her. My husband had to go back to work so I had no choice. Each day was excruciating. My stomach was in knots. I couldn’t eat let alone sleep.

Days turned into weeks, weeks into months. Calculations, shots, highs, lows, repeat 24 /7. I went on Facebook and connected with a mom group with babies and toddlers with Type 1 Diabetes. I’m so grateful for that group. I asked them questions all hours of the days and nights. I read for hours every day trying to learn all I could about this disease. I alienated myself from friends and social life. One day a mom local to me reached out and wanted to give my daughter a Dexcom CGM. That was a game changer seeing her numbers! I swear it saved her life!

At the 9 month mark of this journey my daughter got on the Omnipod pump and is still on it at the age of 12. It gives her flexibility to graze versus being so regimented when on MDI and so much better control.

At 4 she started preschool and the school let me stay as a helper. While there I trained the aide who would be with her and eventually I could leave her a few hours. That same aide followed her the following year and then to Kindergarten. That’s when she noticed she was not like everyone else. It was heartbreaking when she asked “Why did God let me get this? I don’t want Diabetes anymore.”

She started managing it more on her own in 3rd Grade. She’s now in 6th Grade and does everything on her own with reminders. She’s been in dance since 4 years old and did competition cheer a few years. She’s recently joined Girl Scouts and has a great group of friends who accept her which was a fear of mine back when she was diagnosed.
I’m now more at ease when she’s at school. The nurse follows her numbers and I can text her and Madelyn whenever I need to. A big thing that happened this year was she went on 2 sleepovers which I was always terrified to let her do for obvious reasons.

I’m always checking her numbers and I’m top of her to pre bolus, correct etc and trying to keep her A1c under 7 while battling puberty, moodiness and hormones of a preteen. The past few years she’s been 6.0-6.7.

She’s a great kid who loves skincare, animals, art and is an honor roll student. I’m very proud of her strength and resilience. When she gets burned out and I’ll take the reins to help control her BS.

As I write this, I can’t believe it’s been 10 years since diagnosis and I think back to those first few weeks wondering how I would get through the next day and now here we are. I’m so thankful for family and friends in my circle. Other than Type 1 Diabetes, my daughter is happy and healthy. Here’s to the next 10 years!

Don’t give up hope! Your child can do anything and be whatever they want to be when they are older.
Thanks for reading my story.