I am so sorry to be writing you this letter. As you read this, you may be sitting by your child’s hospital bed trying to wrap your head around what all of this means. Maybe it’s been a few days or weeks, but your life still feels upside down.
I wish I were close by, because I’d grab a cup of coffee or tea, some Kleenex and I’d stop by. We could cry together and I would do my best to reassure you can do this and at some point of time, you’re going to recognize that it’s going to be okay.
You see, I’ve been where you were once before. My oldest daughter was diagnosed in July 2015 when she was nine years old. I remember our days in the hospital and how overwhelmed I felt with everything they were trying to teach us. When we left the hospital, I was scared about how I was going to keep her alive.
I want you to know that everything you are feeling is completely normal. Finding out your child has type 1 diabetes is life altering. I’ve often said that when I learned of the diagnosis, I felt like the earth might have shifted on its axis because the news dropped me to my knees. However, I also know that this diagnosis flipped my daughter’s world upside down.
I mourned my daughter’s diagnosis for months. I want you to know it’s okay to grieve for the life that your child was supposed to have. None of this is normal. Your child shouldn’t have to be thinking about blood glucose levels before going outside to play or counting carbs in food. The idea of them going to a sleepover, school or to a grandparent’s house shouldn’t cause you to panic. And while it’s not fair, it’s the reality that we are now dealing with.
I know this is scary today, but as time passes, it will become more familiar to you and the fear will start to subside. Each experience you have will be something that you learn from and something that will help you to gain confidence. I promise that at some point of time, you will no longer look at your child as being medically fragile. You will learn that your child is still strong and that this disease doesn’t mean that they can’t accomplish great things.
Three years into this disease, and it no longer consumes our family that way that it once did. We now have a system in how we operate and to the outside world, we probably make it look like it’s really not that hard. I don’t want to mislead you, we put a lot of work into it. But when we first got home, our meals were often eaten cold because I had a hard time carb counting and figuring out how much insulin she needed. As time goes by, you’ll learn how many carbs are in the foods you eat the most, whether it’s pasta, salads or an ice cream cone.
You’re going to find there’s a lot of debate in the T1D community about the “right” diet to eat. People often ask me how diabetes impacted how we eat. For our family, we believe in eating a healthy diet, with a balance between healthy foods and special treats. While some families have gone low carb, ours didn’t. My suggestion would be that you work with your endocrinology team to find what’s right for your family. There is nothing about type 1 diabetes that is one size fits all – this is a personal journey and you need to decide what’s right for you.
If you are tightly wound like me and a bit of a perfectionist or control freak, please get ready for what is about to come. I learned early on that I could do everything “right” and sometimes things didn’t turn out the way that I expected. Diabetes is a complicated disease. It’s not just about the carbs and the blood sugar, there are a number of other things that impact this. I don’t share that with you to scare you, but just so you can understand why our family doesn’t talk about “control” as it relates to type 1 diabetes. I realized very quickly that I couldn’t control diabetes, but I do work hard to manage it the best I am able.
You’ll also find that you don’t have to be so exact because with diabetes, it doesn’t always add up any way. I remember yelling at my husband one time because he gave our daughter ketchup for french fries that I hadn’t included in the carb count for her dinner.
Your endocrinologist should be your partner in this. Don’t hesitate to reach out and don’t worry about bothering their team. They probably worry more if they don’t hear from you between appointments. The ratios they give you today may need to be changed a few times before your next appointment. If you find the blood sugars are too high or too low after a meal for a couple days in a row, call and get guidance on how to change them. They endocrinologist should have a plan in place to teach you how to identify patterns or highs or lows and how to eventually make those changes on your own.
Allow yourself some grace on this journey. You are not expected to be perfect. You are going to make mistakes and that’s okay. Even if you do everything perfectly, the body will sometimes throw a curveball and things may not go as you planned.
There is a balance between good blood sugar numbers and good childhood experiences. While ideally you will have both, it’s important to me that my daughter get to do as many “normal” things as possible – like going to sleepovers and eating cotton candy. I would encourage you as much and whenever possible, to put kid first and diabetes second.
I tried to do this on my own when she was first diagnosed. When I am struggling with something, I tend to pull in to myself rather than pulling on those around me. I found that my friends and family didn’t understand what we were going through and that made me pull back even harder. People said some pretty catastrophically awful things to me when our daughter was diagnosed, because they didn’t know what to say. I had to remind myself constantly that these people weren’t coming from a place of malice, rather than from a place of ignorance. Unfortunately, if the roles were reversed, I probably would have been the one to say something stupid, too.
It took a while for me to be able to explain to others what type 1 diabetes was. My first explanations were rooted in fear, but my perspective today is very different.
Know that there is a huge community of people who do understand what you are going through. I would encourage you to get connected – whether it’s people who live in your area or through the diabetes online community. Find someone who speaks in a way that resonates with you – someone you connect with. Whether you follow them quietly on Instagram, join a Facebook group or are engaged by asking questions or meeting up with people from your area. Please know that you are not alone.
That being said, don’t compare yourself to others. There are going to be people who have better A1Cs, Dexcom graphs or fasting blood sugars than you. It doesn’t matter because their journey isn’t yours. Draw from their experiences, learn from them, but don’t compare yourself to them. We need to exist in a way that we build each other up, but don’t let their positive tear you down. We all have good days and bad. I’m guilty of sometimes posting the really good days without acknowledging the bad ones.
You may feel hopeless or overwhelmed right now, but I want you to get to a place where you feel empowered and confident. This may be scary right now, but there will come a day when cotton candy won’t give you a panic attack and that you can send your child to a sleepover and know that they are going to be okay.
It’s going to be okay, Momma. Your son or daughter is still going to be able to accomplish great things in life. It’s going to suck, but it’s going to be okay.
I’m here when you need me – whether it’s to celebrate a small victory on your journey or when you need a shoulder to lean on. You are not alone.