This thing I call "D"

 

 

Today begins National Diabetes Awareness Day and I have been putting pen to paper (okay, fingers to keyboard) all day trying to write a witty yet interesting blog about diabetes in general and Type 1 diabetes in particular.  I've scrapped my first three attempts because none of them said what I really felt. Oh, they were full of myths and facts, statistics and antidotes but they didn't really tell you what I wanted to say...what I really think, what I really feel about diabetes and the impact it has had on our family.  I realized finally that I was writing what people expected to hear, not what I really wanted them to know, I was making it more difficult than it was because my true feelings about diabetes can be summed up in two words:

 

DIABETES SUCKS!!!

 

 

I'm not talking about a laid back west coast kind of "diabetes sucks,"  I'm talking about a rage filled, slam your fist into a wall, scream at the top of your lungs with tears streaming down your face "DIABETES SUCKS!"

 

I can't sit here and tell you what it's like to have diabetes, how it feels to stick my finger 10 times a day or stick a needle in my belly 5 or more times a day, because for some reason even though I've basically filled my body with nothing but food with almost no nutritional value and Coke (the soda) and lots of carbs and sugar over the last 20 something years, even though I'm a hundred pounds overweight, for some reason God has blessed me with a perfect freaking pancreas, perfect blood sugar levels and a beyond perfect A1C.  I'm telling you right now there's no justice in life because if anyone deserves to have diabetes because of the shit they've put into their body it's me.

 

What I can tell you is what it's like to see your child, the fruit of your womb, a person you love more than life, the joy of your soul,l stick themselves all those times and give themselves all those shots.  I can tell you what it's like to watch your child lay in a hospital bed in a coma, fighting for her life.  I can tell you how nobody is allowed within 50 feet of her if they have so much as a sniffle, because diabetics are more susceptible to all types of infections and if she gets sick it will mean another hospital stay.

 

I can tell you what it's like for her to be feeling fine in the morning and be hooked up to IVs that same night.  I can tell you what it's like to have your sweet natured daughter, who would cut off her own arm rather than hurt another person scream obscenities and throw things at you because her blood sugars have suddenly dropped and she has no control over herself. I have dozens of stories of conversations I've had with her where she's made absolutely no sense because her brain wasn't getting the food it needed to function.

 

I can tell you what it's like when a group of doctors tell you that she has a rare complication of diabetes and needs an organ transplant to survive, and I can also tell you what it's like to go from having money in the bank, a decent savings account and a 40 hour work week to working 80-100 hours a week and being flat broke because of the medical cost associated with diabetes.

 

I know what it's like to work back to back 18 hour shifts when I'm so exhausted all I really want to do is cry, or when I'm so sick I can barely keep my head up. I also know what it's like when there is no overtime but the meds are still needed so you have no option but to take out a payday loan (at 400% interest) to pay for the insulin that will keep your child alive for another 30 days.

 

I can tell you all about setting your alarm clock and sneaking into your child's room every couple hours while she sleeps to make sure she's not dead, or about the mornings I've woken up in a panic because I slept through the alarm and the terror I felt when I reached her room, afraid of what I might find.

 

I can tell you about selling everything I didn't absolutely need to raise money for a transplant, about planning fundraiser after fundraiser and never being able to take a break from it. 

 

I can tell you about being an advocate for my daughter, about going toe to toe with doctors and nurses and demanding the best care for her.  I can tell you what it's like to sit in a car in the middle of the night and listen as my daughter tells me exactly how she wants her funeral.

 

I can tell you about the inner strength these kids have in general and that my daughter has specifically, about how in spite of having this vicious disease that keeps trying to kill them they just keep on living life to the fullest.

 

And lastly I can tell you how I and every other D-Mom and Dad I know are devoting our lives to not only keeping our beautiful children alive, but to finding a cure so your family never has fully understand this thing I call "D".