Last night, a 13 year old girl passed away in her sleep due to a type 1 complication called Dead in Bed Syndrome. Isn't that a horrible name for it? My heart is broken for her parents and selfishly I am in great fear for my child.
When you have a child with an invisible illness people start thinking you are crazy because everything looks ok. It's not. Everyday is a balance of insulin and blood sugars, highs and lows, literally. It is also struggling with people saying "at least it's not..." or "It could have been worse." Yes, it could have been you or your child.
The best comparison I can make is the feeling a new mom gets when she constantly makes sure her newborn is breathing. Everyday I wake up and fear walking into her bedroom. The fear does not go away until I see her chest moving up and down. Her life is literally in our hands every day until she masters skills at caring for herself and even then, there are no guarantees. It is a ton of pressure!!
The evil reality when I find out that a child dies from Type 1 is that I hope their parents did a crappy job of taking care of them. I feel like a total bitch saying that but I don't like to sugarcoat or else my blog wouldn't serve it's purpose of being real. The majority of the time, their parents were excellent caregivers and their children meant the world to them. The only stories that make the news are the parents who fail to take care of their type 1 kiddos. In that case, it is easy to lash out at them in anger, it gives me a release of emotions.
The mother of this 13 year old girl was an excellent caregiver and so the type 1 community bands together across the world with blue candles filling up the internet as much as we can. It is our virtual hug. I have never met her mother but I grieve with her and pray for her. Please keep them in your prayers. I cannot even imagine the first night without checking my child's blood sugar and for once, I am sad a child will not be there to get her finger poked.
We need a cure. If you would like to donate please go to JDRF.org. If you want to send out support, please change your profile pic on facebook or myspace to a blue candle. Thank you and God Bless you. Hug your kids tight.