Courtney Taylor is a mom (Chase, 10 & Carter, 6), educator, and advocate living in Philadelphia, PA. Chase was diagnosed with Type 1 Diabetes when he was three years old. Courtney and Chase are the founders of The CHASE away Diabetes Foundation, 501(c)3—a non-profit organization committed to raising awareness and influencing advocacy for Type 1 Diabetes.

Courtney reflects on her experience over the past 7 years, and offers advice for those in a similar situation.

If I Knew Then What I Know Now: A Letter to My Younger Self

August 20, 2011

Dear Courtney,

Before you read this letter, grab a box of tissues, pour a glass of wine (it’s okay to fill it to the brim), and find a quiet space where you won’t be interrupted. Trust me. Today is the last day you will feel the way you do; tomorrow, everything will change. The changes you’ve been noticing in Chase—bedwetting, mood swings, and extreme thirst—are all about to make sense. Chase (take a deep breath) has diabetes. Breathe. The doctors will diagnose him tomorrow and you will spend days in the hospital learning how to live as a family with this illness. It won’t be easy, and no matter how many people say it will—it won’t get easier. So, here’s what I want you to do. Cry. Cry as long as you want, as loudly as you want. Be angry—but don’t stay there. This illness, while manageable, will cost you a lot—mentally, emotionally, physically, and financially. It will require you to be open to constant learning and to educate others. You will also make mistakes, but you must be willing to forgive yourself and move forward. Most importantly, while it’s going to hurt you the most, you are not the one living with it, Chase is, so don’t forget to include him in everything. Lastly, there are going to be days when you just want to throw in the towel and give up—but diabetes doesn’t allow for sick days so here are some things to remember on the worst of the worst days.

Ask for and Accept Help

This will be the hardest to do, so that’s why I’ve included it first. If you attempt to fight this fight alone, you will lose quickly—take advantage of those around you. There’s a village of people who want to learn how to check blood sugars, administer insulin, and count carbs—they’re just waiting for you to teach them. It won’t be an overnight lesson, it will take time. The more people you involve in your child’s care, the more phone numbers you can dial when you need a break.

Forgive Yourself

You are going to put numbing cream on so you can do a site change, and you’ll fall asleep. You are going to need to pick up a prescription in the morning to drop off at school before you go to work—and there will be traffic, so now you’re late for work. You will forget to pack lunch carbs in the lunch bag (more than once). You won’t hear the CGM alarm the first time it goes off. So many imperfect scenarios of how you will “fail” as a diabetes parent, but they won’t be outweighed by all the sacrifices you are going to make—give yourself a break. It’s okay.

Make a Plan

As I stated earlier, this is going to cost you. I neglected to mention the time it will cost. Plan ahead. Your best bet will be to make a weekly menu. Count the carbs ahead of time, and pack lunches and snacks for the week. This will help you feel less anxious in the mornings—especially while you wait for your child to take 40 minutes to put on 2 socks. Also, get a monthly calendar and plan out site changes. They will sneak up on you. 

Talk About It

One way to work through feeling burned out is to talk about why you are feeling burned out—don’t forget to cry if you need to. Find a group of parents who know what you are experiencing and swap diabetes stories, talk with family members and share how they can help relieve some of the stressors of being the main caregiver. And talk with Chase—he is walking this journey with you and while it’ll help you cope, it will also give him the language to work through his feelings and thoughts as well.

Include Your Child

In addition to talking with Chase about how you are coping, include him in other conversations.  He should be apart of the medical conversations, he needs to know how you are managing his illness, but he also needs to begin to learn how to advocate for himself and that starts with finding the power in his voice. This isn’t limited to doctor visits, he should also be included in the everyday management—from day one; yes, I know he’s only 3. The more involved he is, the stronger he will feel about standing up for himself and educating others.

Tomorrow is a new day, it won’t be easy, but you will make it through. 

Love,

Your wiser self