What I Wish I’d Said the Day You Were Diagnosed

It’s been five years since we sat in that hospital room in Portland, Maine — with strangers in brightly colored scrubs coming in to prick your finger, asking you to pee in a cup, and sticking you with long needles. Just hours earlier you had been at school, doing crafts in art class, climbing the jungle gym at recess, and eating lunch in the cafeteria. You were a little tired and going to the bathroom a lot, but otherwise a normal, healthy first grader enjoying fall in New England. You had no idea what you were suddenly doing in a hospital surrounded by strangers in white lab coats furiously making notes on a clipboard.

You sat in your hospital bed in those cute fleece soccer-ball pajamas and listened as the grown-ups talked endlessly about carbs, insulin, and blood sugar. You played with coloring books and a superhero action-figure set from the hospital’s playroom down the hall, but the joy they brought was temporary. No matter how much we tried to entertain or distract you, you were confused and terrified of all those needles coming at your tiny 6-year-old arms and legs.

You didn’t feel sick. You should have been in school. You didn’t understand why your grandparents kept calling or why I started crying when the topic of your friend Brynn’s upcoming birthday party came up. You missed your sister and brother. You missed your bicycle and your dog. You wanted to go home.

But while we would be going home eventually, we’d never be going back to life as you knew it. From that day forward, your life would be more difficult, more complicated, and more exhausting. I’m not sure how well I did comforting you in those first few days after the type 1 diabetes diagnosis. I was so consumed with my own confusion and sadness, I didn’t say all the things I could have to make you feel less scared and bewildered. If I could go back to that room, to that time, knowing all I know now, here’s what I’d tell you.

Things Will Get Better

As bad as this seems right now, we will get through this, and things will get better. It won’t ever be easy, but having type 1 diabetes won’t be as scary or overwhelming as it feels right now. That’s because we’re new to this. We are beginners, and it will get easier over time. Just like when you learned to read or ride a bike. Practice and time will make all the difference.

We Are in This Together

Being diagnosed with type 1 diabetes is scary, and there is a lot to learn. But we are in this together. As your mom, I will learn how to take care of your diabetes so you don’t have to. There will come a day when you want to do more of this yourself, and that’s okay. But I will always be here to help you in whatever way you need.

You Aren’t Alone

Neither of us have ever known anyone else with type 1 diabetes, and we have no idea what it will be like. But I can promise you, you are not the only kid to go through this. There is an incredible community of people, just like you, who have sat in that hospital bed and gotten this news from their doctors. We will find these people, through summer camps and support groups and conferences, and you will meet other kids just like you who understand what it’s like to live with diabetes. Some of these kids may become lifelong friends and will have your back anytime you need them. You’ll see.

You Will Do It All

This is a bump in the road, but it’s not a barricade. You can still do everything that other kids can do, it will just take a bit more planning and preparation. Whether it’s your friend’s birthday party this weekend, or a sleepover when you get a little older, or someday going off to college in another state… I will make sure we find a way for you to do it all. The answer will always be yes!

Your Life Will Be Harder, But Better

Type 1 diabetes will change your life. In a lot of ways, it will be harder… no doubt about that. But you will also have opportunities and experiences you may never have had without diabetes. You will meet people who inspire you, and you will inspire others. Your diabetes will make you a hard worker, which will lead to greater success in whatever you do. You will be stronger than a lot of your peers who don’t have diabetes, which will make it easier to succeed and endure other challenges in life. Someday, you may choose to give back to the diabetes community, giving you the power to help others in a way that will fulfill you as well. This may be the greatest of all gifts diabetes gives you.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

Related topics:
On Our Own: What No One Knows About My Child’s First Weeks With Diabetes
In the Spotlight: Managing the Stress of a New Diagnosis
The Best Question I Asked After Diagnosis

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