My two children with Type 1 diabetes
Mom, nurse, and Type 1... times two
On November 18, 2009, our 6-year-old daughter Aubrey was diagnosed with Type 1 diabetes. As a nurse, I was familiar with the diagnosis, but had no idea what it meant to bring T1 home. It felt like bringing home a new baby. Blood glucose testing, counting carbs, drawing up insulin-long acting and short acting, needles, and lots of sharps for our 1st grader. Aubrey has always been resilient, but this was tough. We watched her take hold of this challenge as we began a journey with T1. Besides myself, our family included Matt (my husband, her dad) and siblings Colin, who is 2 1/2 years older and twins Ethan and Addison, who are 3 1/2 years younger.
That next year, Colin began to develop some health issues and we could not find an answer. Then on May 28, 2011, Colin was diagnosed with Type 1 diabetes as well. I remember sitting in the pediatrician's office, waiting for more lab results and tears streaming down my face. So many questions, and no answers. Auto-immune diseases are like that. No links, nothing you "did wrong", and in our case, no family history. Colin was also resilient. He was carefree and able to take things as they come. However, as a nurse, I have cared for many people over the years with diabetes. I have seen the results of long-term unmanaged blood sugars. I was fearful. I knew my kids' lives would never be the same.
We came home with now 2 young kids with T1. As you can imagine, our home was full with 4 kids in single digit ages. We were full of tears mixed with laughter, fighting mixed with playing, bribing to check blood sugars/give insulin mixed with kids checking each other's blood sugar, sleeplessness checking and treating low blood sugars at night mixed with sibling-created slumber parties. We quickly discovered that if we were going to succeed at this battle with T1, it was going to be a family endeavor. My despair started to glimmer with a little bit of hope.
We started getting connected with organizations that advocate for the cure. Our family attended a weekend retreat with JDRF where we met all kinds of adults and kids living and thriving with T1. Some were running marathons and triathlons, some were advocating for new technology, and some just supporting others with tips and tricks of counting carbs. We felt encouraged. As time went on, we started linking arms with people in our community. We met people with the ADA, participated in walks, hosted a trivia night and probably most important, had the opportunity for our kids to attend diabetes camp each summer where they met people living with the same daily challenges. Several years ago, we met a man that had been competing as a professional snowboarder when he was diagnosed with T1. He had started an organization-Riding on Insulin-teaching kids with T1 how to ski and snowboard. We loved this. We were now not only encouraged, but excited. Our hope grew. We were able to attend one of the winter camps as a family. Here we learned that our support of Colin and Aubrey had to include an attitude of fun in the mundane of this chronic disease. I remember as I was putting Colin to bed one night, he said, "Mom, I'm not glad Aubrey and I have diabetes, but without diabetes, we wouldn't have met all these awesome people." It's so true.
On November 18, 2022, we will have lived with T1 in our lives for 13 years. Colin and Aubrey are now both in college, one in Arizona and the other in California. They are doing an amazing job managing T1 every single day. There is no break. They take this challenge one day at a time. But they are also living full lives. This past year, Colin became a snowboarding coach with Riding on Insulin and is given the opportunity to walk alongside other kids with T1. Aubrey is involved in another organization and is a tremendous advocate. As a mom, I am proud. As a nurse, I am full of hope. We have no guarantee of a cure, but I now encourage my patients that management is possible. Diabetes doesn't get the power to stop them from anything they want to achieve.
We are so grateful for our team of nurses, diabetes educators, doctors, insulin pump companies, diabetes supply experts, camp coaches/counselors, school nurses, and our fellow diabetes parents and kids. I have realized that although I once felt the despair of how my kids' lives would never be the same, I now see the gratitude in how our lives have been changed.