Unless you are the parent or a carer of a Type 1 Diabetic child it is impossible for you to grasp the day-to-day responsibilities that are required – the weight that is on your shoulders – every.single.day.
The daily emotional and physical toll trying to wrangle a disease that does not like wrangling.
Eden’s body attacked itself –
and now an internal organ –
vital to keep her alive.
DOES NOT WORK
It is HARD trying to replicate the function of a complex internal organ.
Some days are much harder than others..
Poor D-dad got basically ZERO sleep last night because of the real fear and worry about Eden’s low blood sugar.. Something we anticipated would be a problem because
- she ran the mile in PE
- she had XC practice for 45 mins after school
- she played in (2) back to back basketball games last night
We managed her blood sugars almost perfectly throughout the day – but when her body is asleep and resting – the exercise catches up with her and she very often CRASHES dangerously low. (learn about low blood sugar here)
We never know IF it will happen
We never know what TIME it will happen
We test her often throughout the night just in case
We make insulin adjustments
We force feed her sugar
We lay in wait for the next alarm to go off to check on her.
We function on VERY little sleep to ensure that our child wakes up in the morning.
- Is the fear enough to keep us awake at night? sometimes ..
- Do we live our lives in fear of D on a daily basis? no
- Is living on little sleep worth it? darn straight
It is the nature of the beast –
as a parent of a child with a life threatening disease you get used to living on little sleep –
sleep just isn’t as important as it used to be when your childs’ life is in your hands.
Type 1 Diabetes is a complicated disease..
it never takes a break and sometimes seems more puzzling during the nighttime hours than daytime hours.
I am doing my best to share the realities and our REAL LIFE to help people understand. I am not going to stop because I am determined to make a difference in my daughters life and in other peoples lives living with Type 1 Diabetes.
I’m sure not all D parents want to go to war against T1D. I wasn’t that parent for a long, long time.
I never LIKED D – but I seemed to push the negative feelings under the carpet instead of dealing with them.
NOW – I am shouting from the rooftops
wanting a better life for Eden, our family and the
entire T1D community.
I feel like I CAN and WILL make a difference
– one person at a time.
Is that a bad thing?
I certainly don’t think so…
When is it a bad thing to be outspoken about something that affects your life every.single.day. ?
Trying to help the public understand WHY we are being outspoken and why a CURE is so desperately needed..
T1D is relentless – a never ending cycle of finger pricks, needles, insulin, carb counting, highs and lows.
T1D is misunderstood – the majority of the public hears “diabetes” and THINK they know.
THINK Eden caused it or will grow out of it , or needs to exercise, or can’t eat sugar.
I want to change that.
But I can’t do it alone and people need to be receptive to listening …