What are we doing here? Why are we doing it? And is it even worth it?
When my daughter was first diagnosed I had no freaken idea what diabetes was. And the weight of the diagnosis took a long time to sink in. I wanted to protect my family, and at the time, I thought that meant pulling down the blinds, locking the doors, and wrapping our kids up in bubble wrap.
It wasn’t until several months later that I realized we didn’t know another soul that was affected by this disease. That was when I started to climb out of the hole I buried myself in and became a little more involved.
It became very apparent that no one was ever going to advocate for my daughter. People assumed (and still do) that her diabetes was caused by poor parenting and horrible lifestyle choices. If anyone was going to fight for our daughter, it was going to need to be us. And there was a lot of hurdles we needed to overcome.
Our Facebook page was initially started as a way to help fundraise for Major. But it has become a way for me to serve. To educate. To help. To cope. Therapy. To fight for my daughter. To fight for other type 1’s that are in denial. That don’t think they deserve it. That have given up hope. I still meet type 1’s, both adults and children, who’s parents didn’t/don’t fight for them. That saw no purpose in it, or wanted to hide from it. You see, diabetes is invisible. If people don’t speak up, no one would ever know it was there. It’s a fairly easy disease to hide from. To suffer quietly. But diabetes can be a nasty little disease. With a fatal outcome.
So here we are, 3 years later. Shouting from the rooftops to anyone that will listen. I’m not smart enough to work on a cure in a lab. I don’t work for a big PR firm that can put together slick campaigns. I don’t work for a charity. But I have this page. And I have you. And I can sit here and type out things like “We need a cure”. And “I hate this disease”. And “Insulin is life support, not a cure”. And “yes, she can eat that”. And “no, no amount of exercise or a different diet will ever make this go away”. And yes, even scary things like “this disease can take our children from us”.
There are a few that wonder why we do this. Why we allow this window into our lives. People that don’t see any value in this. Some of those people HAVE type 1. I say look around this site. It is riddled with comments from people that say “wow, I had no idea” or “gosh, I just assumed”. People tell me all the time “because of your page, I was able to talk to a woman at the supermarket” or “I educated someone in my office”. Things like THAT are why I am here. Think globally, act locally. Start small. Work at it constantly.
The thing is, we are starting to see change. In us. In the public. And yes, even in the media. We have seen retractions in newspapers. Follow ups on TV news. Expanded stories. Corrections. Positive stories about diabetes, and even DAD’s like this one here on us.
Thank you for giving me the opportunity to serve. And I promise you, until theres a cure, until those 2 beautiful labs get to just be my running buddies and fetch me a beer instead of a juice box, until my little girl can go to sleep at night without her parents worried about “dead in bed”, I will be here. Shouting. WE NEED A CURE!