Friday, July 3, 2009

It's All Relative

Diabetes is an interesting disease because "doing everything right" is such a relative term. Other T1 mom's can attest to this. We can do everything right and still get bad numbers. It is probably one of the most frustrating things we deal with. You can do everything right, learn all the carb counts and still not be doing it right.

Raising a Type 1 child can be an interesting process. A lot of the care we give Sydney becomes second nature. It's not the way the average 5 year old lives, but we make it work. We deal with the highs and lows (both physically and emotionally). Sometimes we wing it and sometimes we have a plan. Sometimes for brief moments, every once in a while, we forget that she has diabetes. She runs and plays and doesn't drop low. She doesn't have a nagging mother checking the color of her lips or watching to see if she is walking funny--both indicative of a low. We love those brief moments--probably because they come few and far between.

I've mentioned before that diabetes doesn't take a vacation. The nights can be especially rough because I want to be sleeping but I know there is a little girl who needs me to be there for her. I don't know how many times she has dropped low during the night--I lost count a long time ago. Lately it's been happening a lot. 2 nights ago she had to drink 4 juice boxes. She just kept staying low. The sun was shining all day and we were outside a lot and I'm sure it was the sun and running around affecting her sugars hours later. This is our first summer dealing with her pump and summertime. It is different than daily injections. We are slowly figuring it out though and will, hopefully, be old pros before long.

Yesterday evening we were working on the JDRF float (pics to come!) for the 4th of July parade and she came and told me she felt low. She was 37--very low. The rest of the night she struggled getting into the normal range. It was a long night. I decided to document one of the many, many checks. The flash brightened the picture but really it is dark in there. My kids would never sleep if the light was on...we use the hall light to see. Friends have commented that it is odd Syd will still usually take a decent nap most days. I think it is due to all these blasted night time checks. Even if she doesn't wake fully up, we are still disturbing her REM sleep and it will wear out a 5 year old.

~At night we check her toes. Her fingers look so mutilated, I like to give them a break when I can.

~Her little toe and drop of blood.

~She is 60 which is low...not as low as she has been but it needs to be treated so it doesn't go lower.

~Trying to wake her up enough to drink a juice box is often a challenge. If she is really low I wake her up all the way so I know she can and isn't too "out of it" because of her low. If she is moderately low, like 60, I just wake her enough to get her to drink the juice box. Notice her faithful sidekick Daisy-the-Pump attached to her shorts? Syd is also getting a killer farmer's tan. lol

Then we repeat this little ritual a couples times a after day. I cling to the hope that one day we will cure this disease and I can let her sleep through the night without disturbing her REM sleep.


Wendy said...

I'm always amazed at how they can drink juice while laying and being low...and still not wake up.

These kids amaze me.

Great pics...sniff...sniff...

Becki said...

She is such a little sweetie. One day Shamae. One day it WILL happen and there WILL be a cure!!

Julie said...

I can't imagine waiting for the day when she's old enough to sleep through the night, and then find out that until someone finds a cure for this horrible disease, nobody can sleep through the night. I know God will bless you all for your struggles.

Rachel said...

First, love the bed!!! Princess is perfect for Syd!!! :)

I know all to well what you are saying. I hate having to wake up Tristan to correct a low. What we do, is give him a juice to bring to bring up the low right away and then we also give him a few "gummies". The gummies take longer to be digested therefore, it usually avoids having another low. It has worked for us, maybe it can help Syd too. :)

Tristan's figures are also mutilated. I feel horrible. You can see all the little holes in here. I hate it!!!

I can't wait for the day that there is a cure. I swear, I will have the biggest party ever!!! And then I will sleep... a peaceful sleep... something that I haven't experienced since his diagnostic! :)

Jim, Guacamole Diet said...

You said:
"Diabetes is an interesting disease ... Raising a Type 1 child can be an interesting process."

"Interesting" ... I like that description.

Best wishes.

Tina L. Moss said...

You are amazing, I thought I was the only one that really suffered along with my daughter having diabetes and being the nagging mom, always saying slow down, dont run so your blood sugar doesnt drop, do you feel low?, no you cant eat that. It is tough and like you said we deal with it and at the end of the day I am greatful for my daughter for being the strong one telling me mom its ok, I'm fine and I wont go low. (and she does) but thats part of it. Bless your heart and remember to always keep a smile on your face. Your amazing.

Mel said...

Man its amazing how a family can come together and day after day fight a battle like diabetes. I know from my own family's medical trials that like you said, sometimes you forget there's that medical issue, it just becomes so routine. Keep it up, you're doing such a wonderful job raising your girls!!!

mom2LBandBB said...

Hey there! I am so excited to have joined the world of blogging and to have found so many other families out there with T1 kids. My daughter has had D for four years. She was diagnosed 10 days before her 3rd birthday. I look forward to getting to "know" you too!

Mom said...

Shamae, I am in awe of you and how you handle Sydney's diabeties. You were a strong determined child and that trait has not been lost! Syd will do well, because of what you teach her. One day, they will find a cure!

I love you!
Your mother

Emma said...

I don't know how my husband does it every night. He gets so little sleep sometimes because he's dropped so low. Normally he wakes up and gets himself cereal at 2am...but I know there's always the chance he won't.

Sometime I'll tell you about our first date... little did I know what I was getting myself into! :-)

J.R. and Michelle said...

What a sweetheart of a little girl you have. That picture of her still basically asleep drinking the juice is so telling of all the things she has to endure as a child with Type 1. I hope you are able to steal away many more moments (no matter how brief) of just joy, before you have to remember that it's time to check sugars again.