Think positive...

Most of you know, but my daughter was diagnosed almost 3 yrs ago (at the age of 1 yr old) with type 1 diabetes.
It has been a rough ride to say the least, and also a solo ride.

I am writing this tonight to voice my opinion on "thinking positive".
I know that there is alot of negativity, mourning, sorrow, grief, anger, & other feelings floating about the Diabetes community.

Sometimes the negativity is so thick that I see others jumping on board and following the same behavior. I worry sometimes about the "newbies" coming into the diabetes community and seeing all the negativity. Will they follow suit? How will they react? Will they think this is what D is about? How will they in turn handle D in their own homes and lives? Will they run for the hills and lose all connection with the DOC? How will their D child feel?

Having your child or a loved one diagnosed with Type 1 is no picnic in the park. This is now a life long disease, and not only does the type 1 have to deal with it, but we as parents, spouses, caregivers, etc have to deal with this beast. D changes EVERYTHING regardless of how positive we are. Does that mean we should let it consume us? Not at all! But unfortunately, sometimes it does.

We are all different, and handle things differently. Some grieve for a loooong time....some get the wind knocked out of them and get back on their feet and move forward, some hate life and do not understand why this has happened to them or their child, and others pull back and mourn, and go into a depression. *Not everyone can jump on the bull and ride like a pro the first round.

Personally, I am fortunate to be a very strong person and I did not have the DOC when my child was diagnosed, and I had no one to lean on, vent to, or even get advice from. I had no choice but to be strong, not only for myself, but for my 1 yr old child who relied on me to be.

We are all different in many ways, but yet so much alike in other ways. We are supposed to support each other, be there for each other, and help lift each other up. Not everyone can be strong or positive, and not everyone can be mad, angry, or sad.

We are all sleep deprived in some way or another, and sometimes we tend to take things personal, or we say things out of frustration or use different wording and someone's feelings get hurt.
Lets all be supportive and understanding and remember that we need each other.


Sleep they say....

Sleep they say.....

  This blog is for everyone who can relate to others telling you how to take care of your Diabetic child or yourself, when they really have no clue! They do not know ANYTHING about Diabetes nor how to take care of a child with Type 1, but yet they always seem to throw their nickel's worth in. Sometimes, it can be a helpful suggestion....other times it is just down right annoying.
Statements and questions such as these:

Why don't you go to bed? She will be fine!
You need sleep too...
Send her to a sitter for a few hours so you can get some sleep...
No wonder you are tired, you stayed up all night playing online!
Why don't you go to bed when she does?

When you have a "normal" child that has no medical issues, you can go to sleep when your child goes to sleep. If your child is sick, you can lay them in your bed and snooze the night away knowing they are safe in your arms and guess what??!! They WILL wake up in the morning!!

When you have a baby that sleeps thru the night...do you wake up thru the night to check them? Do you stay up keeping a close eye on them and worry they will be ok thru the night???
NO YOU DON'T!!!! When your baby sleeps thru the night...you do too!!

Life is just not that way when you have a child with Type 1. There is constant monitoring thru the day & thru the night. There is no climbing in bed and going to sleep and not checking your child's blood sugars somewhere in the night and usually several times before you can finally rest assured that your child's blood sugars are in a safe range that you can actually get some sleep.

When a Type 1 is ill...they run very high blood sugars and ketones. They could go into a Diabetic coma and even die if you are not on top of those levels. If their blood sugars go too low, they could go into a seizure and either have brain damage or die. They require constant monitoring...which means very little to no sleep for you for the night...or even days or weeks!

When you have a normal healthy child, you NEVER worry about waking up to a dead, or comatose child...WE DO!!!! ALWAYS! We never know if we will see our child in the morning or not.  Does that send chills down your spine yet?

We can not just send our child to a sitter. That sitter has to go thru several days of training with our child's Endo, pump training with the pump rep, nutritional classes, and CGM training in order to care for a Type 1 child.
If you leave your child with an un-trained person, and something happens to that child, do you know you both go to jail for endangerment to a child? It IS that serious!

Your child's body functions perfectly by itself...while my child's doesn't. Which means "I" am my child's pancreas. Do you even have a clue how hard it is to mimic the body?? It is not an easy task, but we do the very best we can, and if it means we are up thru the wee hours of the morning, then that is what we do. We play a very important and crucial role as a pancreas. Even the Doctors, who are professionals in this area have a hard time adjusting insulin levels...we are not perfect, but we try to be. 

I am sure I am not alone in the Diabetes community, but I have not had a full nights sleep in 2 & 1/2 years...so you think it would be in my child's best interest for me to go to sleep when her blood sugar is at a dangerously high or low level and "hope" I hear the alarm??  Well that is too risky for me, therefore I stay awake to ensure her safety and well being. 

I do not have a partner to nudge me when the alarm goes off and I do not hear it. I do not have someone that will do the next check, & I don't have a child who will wake up and tell me she is not feeling well....Therefore I have to be 110% sure that she is safe before I can go to sleep. And if I choose to mop floors, sew, watch TV, or play online between checks...what does it matter??

We will not risk their lives because YOU feel we need to sleep...we sleep when we can and we drink lots of coffee and cokes to make it thru the days.  We are not stupid...we will get sleep and assure we are in the right frame of mind around the clock to care for our children.

So before you judge me or anyone else in my shoes...stop and think about how much you do NOT know about this disease and understand that we are taking care of our children in every possible way to ensure they not only wake up in the morning, and that they have the chance to live a longer healthy life.