By “Mom Marisa”
I am four and half years into my new normal with my daughter Whitney. On the day she was diagnosed I felt like my entire world was turned upside down and that I was alone. All of a sudden all the things we used to be able to do without a second thought were not that simple anymore.
Whitney couldn’t just eat like a normal kid anymore. Now there were blood glucose checks, carb counting and insulin shots before every snack or meal. Running out the door just to grab a quick thing from Walmart involved a bag of supplies at all times. Nobody that I knew had a child with type 1 diabetes.
Ultimately, her diagnosis cost me friendships but it also introduced me to some of the people that are now some of my closest friends. Many of these people I have never met in person. I am talking about my friends in an online support group. The group includes a wide variety of people from all over the United States as well as other countries. We all have one thing in common. We all are raising kids with type 1 diabetes.
Once I found an online support group, I realized that I wasn’t alone in my new normal. There were other people out there just like me, struggling to be the pancreas for their child. Sure, my daughter had an endo and that was great, but we only saw her once every 3 months. In between those visits it was left up to me and my husband to figure it out.
In the beginning, I had a lot of questions. My online support group was there 24/7, 365 days a year. At any time of the day or night there is a parent in the group willing to lend an ear or to help me with my current issue. These parents get where I am coming from. They know the D lingo and most importantly, they don’t judge me. I can ask a question and they will tell me what their experience has been with their child. One of the hardest things for me to learn and to accept when it comes to managing diabetes is that it’s not my fault that Whit has diabetes.
Carb counting can be done perfectly, insulin is drawn up perfectly, and still there are days where D simply doesn’t behave like it should. Those are the days that I am really glad that I have an online support group. I am glad to have parents that have managed to survive puberty and diabetes with a teenager to help guide me. They tell me that there is hope that I will survive puberty and yes she will turn out okay.
I asked my fellow D parents in group this morning how having an online group has helped them. As expected, there was a wide variety of answers. Most of them said that they don’t feel alone because they have a place to go where everybody gets what they are going through. Another mom said she lives in the middle of nowhere and this group helps her get through her days.
One mom who is just a little over a year into this said, “It was a soft place to land in a cruel and unrelenting world that neither understands this disease nor cares enough to educate itself.” That line is so very true! People look at our kids and see the pumps, CGM’S, pens and pen needles, or the vial of insulin with a syringe. All many see is Diabetes, not the child. They are quick to judge that as a parent you did something wrong. People question what you are feeding your child or how you are treating them because they confuse type 1 with type 2 diabetes.
I now belong to an online group that I have had the pleasure of spending the last two years building. We went from a few other moms and a dad to a thriving group of over 800 members. We never all agree and that is a great thing. There have been great discussions and only a few disagreements, but at the end of the day there is one thing we all agree on. Our kids can do anything they want to despite having diabetes.
There are many Facebook support groups out there. If you are interested in joining our Facebook group, contact me at firstname.lastname@example.org.