Sleeping through the night...

(NaBloPoMo Day 19)

When you hear those words "sleeping through the night", you probably think about a baby and their sleep habits.

Well, in the Diabetes world it has a whole new meaning. Diabetes is a 24/7/365 job. It never sleeps. And neither do we. Unless we are lucky enough to have The Superhero sleep at NaNa and Pompa's. And in that case we sleep, they don't.

The Superhero can have GREAT blood sugar's one night and have complete opposite numbers the next. We can change things and then change them back. The highs and lows still happen.


So, this means that...

YES...we often stay up to check tiny fingers.

YES...we often have to treat lows with juice, marshmallows, skittles, or ANYTHING The Superhero will eat/drink (Reyna posts here about PUDDING and a night time low for Joe)

YES...we often stay up making sure HIGH blood sugars come down SAFELY

YES...we often "nap" in 2 hour increments (if we are lucky)

YES...our kids lose sleep too.

YES...The Superhero can eat/drink in his sleep (most of the time)

YES...we do this EVERY.SINGLE.NIGHT.

YES...we are TIRED all of the time.


BUT, HE IS WORTH IT!

I would lose sleep every night forever if it means I get to have him wake up in the morning.

Meri posted here about a time when ONE of her THREE Diabetic kiddos slept in LATE. He was low when she went in and checked him. (She also wrote an homage to the night time check.)

We (parents of children with Diabetes) can never sleep in, at least not without worrying and/or checking fingers and going back to sleep. EVER.

Reyna posted about The Painful Truth of Her Nights and the thoughts that run through the mind of a parent doing night checks on their diabetic child.

There are children who DIE in their sleep from Diabetes. This is called Dead in Bed Syndrome. These children go to sleep like it is any other night. And they do not wake up in the morning. Their parents (or whomever goes into their room) finds them in an undisturbed bed not breathing. This scares me.

Here is a post I wrote after the death of one of those kids. I could not bring myself to post after the most recent death in our Diabetes community, but I think if sweet Eilish often.

And I KNOW those parents checked their kids every night too. And they still LOST them.

So, I check every night, and PRAY he will still be alive in the morning.

If I did not check, and I lost him, I don't know that I could ever forgive myself.

By continuing to check The Superhero every couple of hours, I know I am doing everything I can to fight this disease for him.

And if someday, I still lose him, I will know I did everything I could to keep him alive.

Diabetes Fact #19:T1 Diabetes is a 24/7/365 disease. It NEVER sleeps and neither do the parents of the children who have it (or T1 people themselves).

Diabetes Fact #18: T1 Diabetes can happen to ANYONE, it is not necessarily hereditary. This means that yes, it CAN happen to YOU or to someone YOU know.

Diabetes Fact #17: People with T1 or T2 Diabetes (and their caregivers) are more likely to experience depression than their peers without Diabetes.

Diabetes Fact #16: The out of pocket cost of managing T1 Diabetes is EXPENSIVE.

Diabetes Fact #15: Having Type 1 and getting an illness (especially a tummy bug) CAN be dangerous.

Diabetes Fact #14: Without insulin, a person with T1 Diabetes would DIE within ONE week.

Diabetes Fact #13: Type 1 Diabetes usually strikes children, adolescents, and young adults, but it CAN be diagnosed in adults as well.

Diabetes Fact #12: It is important for families of Diabetic children or the people with Diabetes themselves to genuinely try to understand what we go through, to learn about Diabetes along with us, and to support us through encouraging comments.

Diabetes Fact #11: Diabetes is ALL consuming. It is NOT our life, but it is a HUGE part of it.

Diabetes Fact #10: Parents of children with Diabetes HATE when people say "I could NEVER do it!" when referring to the management of their kid's disease. In reality, YOU could, and WOULD do it if you HAD to. We probably had the same thoughts as you and now look at us, doing it 24/7.

Diabetes Fact #9: The term "Juvenile Diabetes" is outdated. We now call it "T1 Diabetes" or "Insulin Dependent Diabetes". People with this type of Diabetes will NEVER outgrow it. EVER. They will have this relentless disease until a CURE is found.

Diabetes Fact #8: A cure would be great, but a long life without complications is a close second for people with T1 Diabetes.

Diabetes Fact #7: Diabetes kills more people each year than cancer and AIDS combined. It is serious. We NEED a cure!

Diabetes Fact #6: While people with T1 Diabetes strive for blood glucose (BG) numbers from 80-120, it is NOT uncommon to see numbers MUCH lower or MUCH higher. There are SO many factors that go into each number and it is very challenging to see readings that are “in range” for EVERY reading.

Diabetes Fact #5: Type 1 Diabetes strikes 15,000 children every year in the US. That's 40 children per day. On July 10, 2008 The Superhero was one of the 40. Today, it could be YOUR child, or someone you know. This is why it is SO important to take the time to learn about the disease.

Diabetes Fact #4: Type 1 Diabetics may take insulin through syringes, insulin pens, or insulin pumps. What they use is a reflection of their choice and/or finances, NOT disease severity.

Diabetes Fact #3: People with Diabetes CAN eat anything they want as long as they match the carbohydrates with insulin.

Diabetes Fact #2: T1 Diabetes is NOT caused by eating too much sugar or being over weight. It IS an autoimmune disease and cannot be prevented.

Diabetes Fact #1: T1 Diabetes CANNOT be treated with medication. The only way to manage T1 Diabetes is with insulin. Without insulin, T1 Diabetics would die. Period.

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Full of Emotions

Scared. Sad. Angry. Thankful. Lost. Confused.

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!