Tomorrow will be hard. Okay, it will be very hard. It will be waterproof-mascara-necessary kind of hard. You will feel lost and confused, and you’ll wonder what’s next. Tomorrow will be the first day of a journey you had never imagined. Tomorrow you will face challenges that seem daunting and insurmountable. Challenges that make you wonder what you’ve done to deserve them.
Tomorrow your daughter will be diagnosed with type 1 diabetes, an autoimmune disease you know nothing about and for which there is currently no cure. Your life as you know it will change. The learning curve you are about to traverse is steep and filled with frustration, anger, and fear. Lots of fear.
As you head without warning into this journey, there are some things I want you to know. Actually, things I need you to know…
This was not your fault.
Nor hers. Nor anyone else’s, for that matter. Don’t waste time trying to figure out the “why” of this disease. The “whys” are moot now. Channel that energy into showing your daughter that her diagnosis does not define her.
When people offer to help you, accept it.
You will soon discover that there are many moving parts to managing type 1 diabetes. This means that the thought of leaving your daughter in someone else’s care will be scary, even terrifying. You will be filled with sadness at the thought of your daughter going through life never experiencing a slumber party at a friend’s home or joining her peers on a class trip. You will soon be amazed to learn that there are many good people who won’t see your daughter as a liability. There will be parents willing to learn how to check her blood sugar and correct a low. There will be teachers who volunteer to be trained on emergency treatment. Take them up on their offers and believe that you are surrounded by others who care deeply about your daughter’s well-being… and yours. Which leads to my next piece of advice…
Take care of yourself.
There is a quote that says “you can’t pour from an empty cup.” This needs to be your mantra as you move through the next few days, months, and years. Caring for a child with type 1 diabetes can consume your life, and for many it does. You will find that it’s easy to push aside your own needs, particularly your own health, in order to take care of your daughter. It’s important to remind yourself that taking care of yourself is not a selfish act. Let me say that again: Taking care of yourself is not a selfish act.
Don’t neglect others who need you too.
You will find that you often give preference to the mounting needs your daughter will have while managing her type 1 diabetes. While many of these situations will take precedence due to medical necessity, be sure you allot time and energy to your other children. They will develop feelings of resentment at one point toward their sister because of the attention she will receive. Don’t tell them these feelings are unreasonable or invalid. Perception is reality, especially for kids. They need you to show them they matter and, most importantly, that their sister’s diagnosis did not change your love for them.
Speaking of love… Don’t forget your marriage.
There will be days that go by, especially just after diagnosis, when you talk about nothing other than diabetes with your spouse. You’ll both be in a constant state of exhaustion and argue over petty things. Then one day you’ll try to remember the last time you kissed each other goodnight. You are a team, and you need each other more now than you ever have before.
Finally, use your story to help others.
Unfortunately, your daughter will not be the last to receive this diagnosis. Others will sit in a hospital room just like you and wonder what this diagnosis means for their child, themselves, and their family. This disease is one which does not have a standard daily treatment regimen. Each hour, day, month, and year is different, and this uncertainty is exhausting. You will soon find some solace in the diabetes online community (DOC) in hearing how others have successfully managed this disease. Pay it forward. Share your ups and downs, and literal highs and lows, with others. You may never know who is listening, but I can assure you there are many who are. Be authentic and sincere and willing to listen when someone reaches out. Let them know that their child is still the same person they were the day before diagnosis. Most importantly, let them know this diagnosis will not be the end of their story but actually a new beginning.
Just as it is yours.
Cheers to our story,
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.