Monday, January 10, 2011

This is Type 1

Where do I begin? I really want to write a powerful post. One that explains everything my heart is feeling.One that compares slightly to the likes of Hallie, Heather, Reyna, Laura, Meri and Renata. One that not only gives you real understanding of what the last 6 days in my house have been like but one that explains that this IS our life.
This isnt just a fluke or a bad day.

This IS TYPE 1 DIABETES.

Just because Justice is running insane numbers some very low some very high,some with ketones, some dropping without a bolus, doesnt mean I am not doing everything I can or should. or that hes doing something wrong. or that hes got the bad kind.

THIS IS TYPE 1 DIABETES.


This is all of us Dmoms and D dads realities. This is all PWDs (Person with Diabetes)reality. I am tired of having to explain over and over again why he cant go to school. why he has to wait to eat or have candy at 7 in the morning. Or peoples reactions to hearing about the rollercoaster we are on. It is NOT our fault. You want to place blame? Hunt down the "germ" that turned their immune systemS against the beta cells which
left it insulinless`(my own word).

THIS IS TYPE 1 DIABETES.

I am tired. I am scared. My heart hurts. My eyes are puffy. My husband for once doesnt know what to say. Justice is upset. He has missed a whole week of school. He hasnt been able to play when he wants or eat breakfast in the morning right away.He feels dizzy, and nauseated. His head is aching and he says all these highs and lows are making him feel like a body made of skin and no bones.He sits and rocks in a corner
LookinG into the distance not aware of whats going on when hes low. He acts like he is having roid rage and will kill anyone that crosses his path when he is high.

THIS IS TYPE 1 DIABETES.

You see his pancreas; a major organ is NOT working. Not because of anything he ate, or we fed him. Not because hes overweight. But because to put it bluntly his immune system failed him. Do I really need to say more?
Do we as a community really need to endure more looks, ignorance and foolish remarks?

A friend George (Ninjabetic.com) said once (adlibbing here)..."Imagine your heart wasnt working. You had to take over the functions of it". IMAGINE THAT. Imagine your childs heart didnt beat correctly,
didnt pump blood correctly. You had to use medical devices to achieve this. But these devices dont work on their own. YOU must work them. You must tweak and adjust them all the time.Nothing stays the same. And one wrong move you could kill your child.

THIS IS TYPE 1 DIABETES.

No no I am not exaggerating. That in a simple nutshell is our lives. Everyday. No breaks. Not for birthdays. Or Christmas. Or New Years. Not for anything. Everyday we must try to balance blood sugars from being too low which could cause a siezure, coma or death right now, with sugars being too high and causing complications later in life such as organ damage,neuropathy, blindness, and again early death. All with machines and medicines that are not by any means perfect. They only work as well as we work them. And there is sadly no exact science.Its not take X amount of insulin a day. Its Ok sugar is 148. Justice is having chicken, rice, broccoli,and yogurt. I must weigh EVERYTHING he eats to calculate the amount of carbohydates in the meal. Wait not done. Then I must calculate per his "dosing calculation" (IC) how much insulin he needs for every X amount of carboydrates. You still with me? Also factoring in if he will be playing, laying down watching tv, or if he is sick. This must be done EVERYTIME he wants to eat or drink something.Yup. When Im tired. When Im sick. When Im paying bills. or cleaning the house. EVERYTIME. Somedays it works and others it doesnt. Some days things are so upside down I swear Im living in an alternate universe.


THIS IS TYPE 1 DIABETES.

We are not asking for your pity. We are asking for your support. Your unwavering and non judging support.we are asking for you to listen. Dont tell us about your friend who has type 2 and started taking pills and is better.or about Hallie Berry reversing her type 1 (thats all bullshit). We know best. We understand this disease better than the media. Better than oprah, Dr Oz and Ricki Lake! Yes I know we dont have talk shows but trust me we could teach this world a thing or ten.

We dont mind your questions. We love it. We encourage it. We are glad you care enough to want to know more. But understand that we are drained. We are tired. We are hurting. Our children are fragile. Yes they are strong but they are still kids. They are still 2, 4, 8 and 16. You know how upset you get when your kid has a bad cold that wont go away right? Well imagine that time 5000000. You want with every fiber of your being to make things better. But you cant.

Please dont say it will be ok. Hes a strong kid. Youre a strong mom. STOP. It adds fuel to the fire that is already burning deep inside of me. We are strong. We have to be. We have no other choice.

THIS IS TYPE 1 DiABETES.

I guess I could have just said EVERYDAY I FEAR LOSING MY CHILD TO A LOW.EVERYDAY I FEAR HE WILL COLLAPSE IN SCHOOL IN THE BATHROOM AND NO ONE WILL BE AROUND TO SEE HIM HAVING A SIEZURE.EVERYDAY I FEAR HE WONT
WAKE UP IN THE MORNING EVEN THOUGH I JUST CHECKED HIM 2 HOURS BEFORE. EVERYDAY I FEAR THESE HIGHS WILL CATCH UP WITH HIM AND TAKE AWAY HIS LEGS OR HIS EYESIGHT. EVERYDAY. EVERY MINUTE. I FEAR MEDICAID WILL BE
TAKEN AWAY AND I WONT HAVE THE MEANS TO KEEP HIM ALIVE.

You know that old saying its a matter of life and death? Well for us,it really is.

THIS IS TYPE 1 DIABETES.

21 comments:

Amy said...

I agree with you and support you and cry with you on every single point made . . . . especially Justice's poignant sign.

We, too, have had a suck-it of a week with our 8yo daughter and experienced the stomach flu for teh first time since diagnosis. No one around me 'gets' it and I am in a serious funk today because I feel alone.

Then I hop on and read my favorite blogs and see all the support outr there. Your post hits me right in the chest. Thank you.

Tammy (P.M.S) said...

I'm a Type 1 diabetic for 24 yrs (diagnosed at 8yrs old and now 31yrs old) and after reading this post, I found myself nodding in an agreement! There is no exact science to the balancing/juggle act, us Type 1's have to do. Especially when we do everything by the book and still can't figure out why having the rollercoasters, highs or lows. Makes me want to toss all the medical stuff against the wall. I understand the emotions your son is going through; I still go through themself as an adult living with Type 1.
I'm forwarding this to my Mom because I know for her, all her emotions she felt when I was a child, you expressed in this post. Even though I am an adult, I know my parents still worry...more so than other parents because of the pain in my ass...diabetes. Thank you for writting this.

Hallie said...

Oh Mama... You don't need to compare yourself to anyone. You said all. You said it perfectly. And so did Justice! ((hugs)) to you both! I will be praying that this crazy ass coaster STOPS and lets you both breathe. Love you! Wishing there was more I could do.

Penny said...

Powerful post Lexi, you write very well and expressed what we d moms and d dads feel. Every. Day. All I can saynis that I am here for you and I understand. Maybe that will be enough. Love to you, Justice and your family.

Misty said...

WOW! Great post. I was nodding and tearing up the whole way through. You said it all Lady!!

And the sign...made me smile:) I am working on a post that, well, you'll just have to read it when I get it finished. But I'm definitely gonna have to linky up to you here...you'll see why in a few hours when I get it finished:)

Kimberly said...

Great post hon!!! I am sorry it has been such a bad week...truly. Chin up...march ahead...on to the next wave of Hell! WE are all right here behind you with the same struggles!

Lora said...

I was sucked into that post. It is so true... Diabetes does suck!

Heather said...

Justice's pic is awesome. Zac has been writing the word 'diabetes' on papers, then tearing them up, balling them up, cutting them, and even stuffing one down his undies! We are definitely in a 'diabetes sucks' state of mind these days, too.

htimm=) said...

Great post! It was every bit as powerful as any post I have read on T1D maybe even more so. I'm right there with you. Diabetes sucks! xoxo

Reyna said...

First off, you take a "back seat" to NO ONE Lexi! Your writing is powerful and full of emotion. And...I know I say this every time I comment, but, honestly...I am inspired by your advocacy in writing your blog from a phone!!! I think we need a post on that bad boy soon. That speaks volumes of your passion and your dedication to Justice and to all of our children.

Secondly, every part of this post I relate too...and in a way... the part that bothers me the most AND makes me the happiest is that it is an invisible disease. Does that make any sense? I hate that it is invisible and I LOVE that it is invisible. I'll get more into that soon. I think it could be a post...I was thinking of it while running the other day.

I love you soul sister! Keep up the fantastic job. You do us all proud.

Shannon@ The New Normal Life said...

This was an amazing and strong post. THANK YOU for being able to put into words the things I cant! I am so glad to be able to post your blog for others to see. THANKYOU

Amy said...

Amazing Amazing AMAZING! Gonna share this with as many as I can...you took the words out of my brain!!

Cindy said...

Amazing post, Lexi! You've said it all so well! Thank you for writing this!

Anonymous said...

No one could have expressed it better. Very well written. I hear you loud and clear.

Laura @ Houston We Have A Problem! said...

Lex - your words and strong and powerful just like you are. You said it all loud and clear. I am so proud to be your friend and walk down this T1 road with you.

Hey - Justice - Diabetes Sucks but I think you are pretty fabulous! I can't wait for you to meet Nate. I hope you will be a friend and a roll model for him. Love to you!

Heather said...

Those are awesome words from an awesome lady. :) Wonderful post and I completely get it. ((Hugs))

Wendy said...

Hugging you tight from AZ...and PRAISING GOD for the blessings of CGMs. Hold your head high. You are doing awesome.

Beautiful post.

stacie green said...

I know this an old post., but our daughters being newly diagnosed has led me to reach out and get as much knowledge as I can which led me to this site... A WONDERFUL site I must say.... and I had to comment on this blog, as it says EVERYTHING I am feeling and wanting to say., thanks so much for sharing.. and caring ~ stacie

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