No one can prepare you for the day your child is diagnosed with an incurable disease. No one can prepare for life as you know it to change forever. Not a single person.
Our almost 9-year-old daughter, Kai, has type 1 diabetes. On April 9 of this year, she has lived with type 1 for 8 years. She has lived most of her life with this awful disease. A thought that can crush me if I allow it to. To me, that’s part of the hand we’ve been dealt though. I won’t allow it to crush me. I will find ways to cope and march forward. But I also allow us to break momentarily and find our footing again when we are ready.
When Kai was diagnosed, like most people, we knew nothing about type 1. I thought someone with type 1 simply took insulin when they ate and that was it. That is laughable knowing what we have lived for the last 7 years.
Being told your child will need to take insulin injections (or in our case, wear an insulin pump) for the rest of her life in order to live is overwhelming. It’s devastating. Fear consumes you. Will that fear ever go away? Will you ever adjust to your new normal? Learn how to keep your child’s blood sugars in a healthy range and continue to live a happy life? How will she manage when she’s on her own? The uncertainties are never-ending. Paralyzing at times.
I have often compared Kai’s diagnosis to a death. Your current life as you know it is gone. You grieve. Others grieve with you. Others are there to comfort and support you. Then life goes on but you continue to grieve. The good days might outnumber the bad days. But my goodness, the bad days are so, so hard.
Having a child with a chronic illness can feel isolating.
Not many people understand it and we certainly don’t expect them to. You feel like a broken record when you talk about your daily struggles and like it’s a burden for others to listen to. But talking about it is therapy. It’s a release.
If you are reading this as a parent of a child with type 1, I hope you realize talking about your child’s diagnosis and the mental load that comes with it is necessary. If you are not someone who does that, it won’t feel comfortable. I can promise you it is worth it and it does make a difference. Whether it’s a therapist, your mom, a friend, or another type 1 parent, having someone to talk to makes a difference. Find that person or persons.
Having a child with a chronic illness is hard. No question. Ultimately, how we live, cope, and move forward falls on us.
First, we must help ourselves. What does that look like? For me, it looks like monthly visits to a therapist, where sometimes the entire hour is filled with talking about diabetes. It looks like working out and eating healthy. Taking trips to see my family. Scheduling regular outings with friends. Laying in bed and crying when that’s all I can do.
I’ll leave you with this. Every road has its challenges. Each day we get to choose how we face them. Each day we get another chance. Remember this. One bad day does not equal a bad life. We get to choose. One day at a time.
Hello! I’m Suzanne. Wife and mom to almost 9-year-old twin girls, Kai and Rowyn. I’m a former teacher and current Sales Team Lead at Orangetheory Fitness while also working my way back into the classroom as a substitute teacher. I love to spend time with family and friends, shop, travel, and write. You can follow me on Instagram (@suzanneleehansen) where I share more about Type 1 Diabetes, mom life, self-care, depression, anxiety, and more. Really, all the things. I believe there’s power in sharing our stories and making connections. I want you to know you’re not alone.