The first time you actually utter these words out loud, it doesn't even seem real. So many questions run through your head....
"How could this have happened?"
"Did he/she eat too much sugar?"
"Will he/she eventually lose a limb?"
"Did I not breastfed long enough?"
"How will I be able to give my child shots every day???"
"Will they live a normal life???"
When Brandon was diagnosed just 4 weeks after his 6th birthday, we didn't know any other kids that had Type 1 diabetes. No one else in his school of 600 kids had diabetes. Brandon would be the first. And for the next few years, we would never meet another type 1 kid. We were the only family we knew that was dealing with this. Oh, how I wish we would've had more support in the beginning. Looking back almost 9 years later, there are some things I wish someone would've told me............
Diabetes is not a death sentence. Forget all the stories you've heard about so-and-so's grandmother having diabetes and going blind and losing all her limbs. In fact, learn to become immune to this kind of talk. You will hear it a lot more now. It doesn't pertain to you. Medical advances have made huge strides over the last 20 years and people with diabetes can have a long, wonderful, fulfilling, HEALTHY life. Even though there is no cure as of yet, we are getting closer every day and hope is on our side.
You are not alone. There is a whole world of PWD (people with diabetes) waiting to talk to you and connect with you and offer unconditional support. One of those is the D.O.C. (Diabetes Online Community). This is one of the greatest groups of people you will ever come to know. You can connect with them through websites like Twitter (#diabetes), Facebook,
DLife.com,
childrenwithdiabetes.com,
type1parents.org and many others. They are there to listen, offer advice (when asked), sympathize with you, relate to you, share tips & experiences with you, and just be there for you. They will get you through the bad days.
Learn to be your child's advocate from here on out. There will be times when you will be confronted,
in front of your child, by people who want to give you unsolicited, unwanted advice & comments about how you should be handling your child's diabetes. They will tell you things like "You fed them too much sugar," "Won't they grow out of it?," "I could never give my child shots every day," "Should they be eating that?" Empower yourself with the words and confidence to speak up & defend your child. Be ready to counteract these stereotypical attitudes. These people just need to be educated on diabetes. Don't be afraid to ask them to speak with you privately and NOT in front of your child.
Your child has rights. Don't be afraid to let teachers know that your child's medical needs come FIRST,
then their school needs. Remind them as often as needed. There are plans you can put into place that back this up. Ask the school nurse or counselor about them.
Do what's right for YOUR FAMILY. As long as you are doing all you can to keep your child healthy and safe, don't worry about what others think or say. If this means giving your 10 year old a cell phone so they can reach you no matter where they are, or homeschooling them to closely monitor their needs, or implementing a morning snack in their classroom, or calling places ahead of time (like summer camps, coaches, etc.) to make sure everyone in charge knows the situation, or getting a special pass at an amusement park to avoid long lines and low/high blood sugars.......SO BE IT. You are trying to do what's best for your child and maintain their quality of life. Don't let dirty looks and snide comments get in your way.
Teach your child an elevator speech. People are very curious. They want to know what that meter thingie is for, or why you wear that little machine on your waist, or why you get to eat candy now, or why you can't have a piece of birthday cake. Help your child come up with some simple answers to these questions. Depending on the age of your child, he/she can say things like:
- "I have diabetes. It means my pancreas doesn't work so I always need to make sure the sugar in my body is balanced - Not too much, not too little.
Your body does it automatically."
- "This is called a meter and it lets me know how much sugar is in my blood right now."
- "This is called a pump and it delivers the medicine into my body when I need it."
- "I didn't do anything to get diabetes. It just happens sometimes. And it's not contagious."
- "Yes, it is okay for me to eat this."
You will find a new normal. The first few weeks are very tough. Know that you will get through it and eventually settle into a routine. Your child has diabetes, diabetes does
not have your child. Continue to encourage him/her to live life & follow their dreams. They can
do anything and
be anything they want to be. Diabetes doesn't control
them, they control
it. So live. And let
them live.
I hope after reading this, you are able to breathe at least a tiny sigh of relief, knowing that you WILL get through this. Take that first step and start connecting with others who are going through the same thing. They're waiting to hear from you.
If you are NOT new to this world of diabetes, what advice would you share with someone facing a new diagnosis?