Wow. Today has been an emotional roller coaster kind of day. I was cleaning up my email inbox this morning and reading through some of the emails from the Children with Diabetes email list.
Here is a copy of the one that has me all emotional today...
"I need to tell you some bad news.
Trent was so excited to get to the conference this year to see all his friends, friends who understood his daily life as a diabetic. He especially wanted to see Jackie from Indiana, who he met last year.
Thursday morning when I went to his room to wake him for school, he had passed away in the night. Knowing he was gone I, as a ER nurse knew the outcome, but had to try for my other children.....
Obviously we have to wait for an autopsy but I'm sure his blood sugar dropped too low.
It is difficult to write this and our family is an emotional wreck. His twin sister Tara is torn up and his older brother just falls apart every few minutes.
Our life will never be the same."
Trent was 14 years old. He was diagnosed with T1 at age 4. This is any parent's worst nightmare! Especially those of us living with Diabetes every day. This can happen to any one of us. THIS is why we check blood sugar around the clock, 24 hours per day, 7 days per week. We have to be on alert at ALL times. Diabetes does NOT sleep. We are often up checking blood sugar and treating highs or lows at night.
And for those of you who may be reading this and may not know a whole lot about Diabetes, WE as parents manage a disease the best we can. We make adjustments as necessary. And just because what we do works today, Diabetes plays by its own rules and they change ALL the time. The Superhero can eat the same thing with the same starting blood sugar level and the same amount of insulin given and end up with completely different results!
Diabetes does not live by any books out there. Every child with Diabetes is different, has different insulin needs, reacts to carbohydrates differently. Not to mention how stress, activity and pretty much EVERYTHING you do EVERY DAY affects the blood sugar.
I have read many books about this stupid disease and while they give examples people with Diabetes, EVERY child/person with diabetes is different. I have learned how to manage The Superhero's diabetes, the best I can. This does not mean I can go and manage someone else the same way. Sure, I could take care of them and could figure it out, but only their "pancreas" knows their Diabetes and how to adjust and treat everything for them.
And I sit here and think "This could really happen. This could be The Superhero.I could lose my son because of this stupid disease."
I want to just sit here and hold him. I want to sleep in his bed every night. I want to know what his blood sugar is 24/7.
Then I come back to reality and I know that I cannot be with The Superhero all the time. I can only do the best I can at managing his Diabetes. I have to let him live. I have to live too.
I have to keep reminding myself that everything happens for a reason. I don't always know what the reason is, but I am certain there is a reason. God is in control. Someday it will be clear why things like this happen.
Maybe it was to wake us all up and make us realize, even more than we already did, that Diabetes can have horrible, unthinkable complications.
For a year and a half I have known these things could happen. I put them in the back of my mind though and have tried not to think about them too much. I mean, who really wants to think about possible seizures, coma, and death? In your 3 year old?
All I know is that I will be checking The Superhero several times per night, FOREVER! I don't want anyone telling me that there is no need for night checks. Or that we check him too often. Or that he has too many highs. Or that he has too many lows. Don't ask "Why is he having so many lows?"
The straight answer to all of those questions, "We manage The Superhero's Diabetes the BEST we know how. Diabetes plays by its own rules and we adjust as often as we need to. We win some and we lose some. We never get to comfortable with life with Diabetes. We just have to keep playing this game, until there is a cure."
WE NEED A CURE!