For the past three years I have walked and done some fundraising for JDRF (Juvenile diabetes reasearch foundation. I do this to support the people in my family who have Type 1 diabetes. I didn't know alot about this disease until my cousin Kelly and her daughter were both diagnosed within 9 months of each other and then when my son Landon began having symptoms such as extremely high levels of ketones a few years ago. He was not diagnosed but it is always in the back of my mind that a diagnosis could be in his future.
What I have learned about Type 1 is:
That it is often misdiagnosed or completely missed by a lot of doctors. This leads to kids who get very sick, this leads to kids who go into a coma, this leads to kids who have seizures, this leads to kids who die. Sometimes these drasic occurances is what leads to a correct diagnoses. These terrible outcomes could be changed if a simple test was done when ANY symptoms show up.
That it is very misunderstood. Kelly talks about this alot in her blog. People think of diabetes and they think of people who are overweight, don't excercise, and eat a lot of sugar and carbs. What people don't realize is that there are two types of diabetes, type 1 and type 2. Type 2 can be controlled with diet and checking blood sugars. Type 1 cannot. Type 1 means that your pancreas does not work and without injecting yourself with the correct amounts of insulin you can die.
That it is not always easy to manage especially in a child. Everything seems to effect blood sugars. Food, excercise, inactivity, sickness, hormones, stress...There is no way to plan for the day ahead all you can do is guess and hope that you can treat the highs and lows if they happen. All you can do is hope that they don't.
That it is work. You have to monitor what they eat and when. You have to check blood sugars countless times a day. You have sleepless nights because you have to get up and check sugars every night every few hours. You have to keep track of numbers. You have to have meetings with caregivers, teachers, and school nurses. You have to educate your children on how to take care of themselves so that eventually they know how to handle things themselves.
That it is scary. As a parent you hold your childs life in your hands in so many different ways. But when you have to be your childs pancreas you literally hold their life in your hands. You have to make life or death decisions regarding their health everyday. You feel guilty if you make a mistake because you know what the consequences are and what they could be.
It is heartbreaking. As any parent of a child who is sick will tell you they would give anything to have their child be healthy, they would take away their pain and make it their own in a heartbeat. You have to be the one to cause them pain by pricking their tiny fingers and giving them injections multiple times a day. You have to do it even when they cry and maybe look at you in fear.
I can't begin to tell you the amount of respect I have for all the parents who have to deal with things 24 hours a day 7 days a week. There is no vacation. (Kelly you really are someone I look up to!!) I can't begin to tell you how much I feel for the kids who live with these things 24 hours a day 7 days a week. I don't know how they do it but they do. I get frustrated for them. I get extremely sad for the parents of kids who don't make it and extremely mad for those kids who could have been saved but weren't due to oversight.
I feel that knowing what I know may someday help make sure neither of my kids is ever lost. I feel we do live in the shadow of diabetes and sometimes I hold my breath watching and waiting for Landons symptoms to return.
Luckily for us we still don't have to live a type 1 life but I know many who do and I want to do my part to help find a cure. Please help by going to my JDRF page and making a donation. All I ask for is $1 and that if you have kids you read up and the information provided here and know the symptoms and get your kids checked no matter what if needed.
My walk page http://walk.jdrf.org/walker.cfm?id=87442284
The American Diabetes Association http://www.diabetes.org/type-1-diabetes.jsp
Kelly's Blog http://type1mom-chasingnumbers.blogspot.com/
Another blog about living with diabetes http://diabetesaliciousness.blogspot.com/