Sunday, March 10, 2013

My first Friends For Life experience

How do you describe the feeling that you get when you are sitting in a conference room full of people all living their own versions of your life? How do you describe the overwhelming emotions that fill your heart as you sit there listening to new ideas...new research...new studies...new methods for managing diabetes that you never knew about? I've been dealing with this bastard of a disease for nearly 5 years now....and while I would never believe that I knew everything about it...or that there wasnt anything more that I could learn, I still have to admit that it was surprising to me that certain questions never occurred to me...certain ways of handling blood sugars and foods and attitudes...it just never occurred to me.
I listened to Gary Scheiner, author of "Think Like a Pancreas", speak about hypoglycemia. Since day 1 in my career of a D-Mom, the rule of treat the low immediately...lows are scary...lows are dangerous...fix them immediately...danger danger danger....was shoved down my throat. Gary said something that will stick in my brain forever..."it's not how low you get...it's how long you are low." It seems like such a simple sentence when I read it back...but that little sentence stuck with me. I panic about lows. He broke it down into simple concise terms while using logic and it made sense to me. When he asked if there were any questions from the audience, I sat there...thinking...feeling nervous...I mean here was the Michael Jordan of the diabetes world standing right in front of me. I wanted to ask him a question...I wanted to make it a good one..I thought about all of the hypoglycemia experiences I have had over the years with Emma and one in particular stood out for me. I raised my hand and as he called on me, I wanted to make sure my voice didn't sound as nervous as I felt on the inside. Believe it or not, I am not a fan of public speaking or being the centre of attention...and by raising my hand to ask a question in front of this room full of people, I was pushing the limits of my nervousness. Anyway, I asked him if he had any advice when it comes to illnesses involving nausea, low blood sugars, and ketones. That is one situation that I have yet to gain even a tiny shred of confidence in during the past 5 years. Gary said that the best way to handle that situation is to give mini doses of glucagon to help raise the BG and then I would be able to give insulin to help get rid of ketones. Simple...logical...concise.
I listened to a doctor speak about the importance of testing often and testing overnight. It was a very refreshing experience for me as I have heard countless people tell me I don't need to test as often as I do or over night. By the way, I test her between 8-10 times a day. I have heard the "OCD" comments from doctors, nurses, other d-parents...so it was awesome for me to hear this man say this. If you are not testing, you are not getting the information you need to make any adjustments needed. I listened to him speak about new research and new breakthroughs occurring. It was also refreshing to me because I never hear of these things here at home. I saw a slide he showed of an actual brain cell with normal, low, and then high blood sugar. It was shocking to me how different the high blood sugar looked compared to the others!
On the social side of things, I met a lot of other families...a lot of newly diagnosed families...a lot of "veterans" in this d-life. I stood there at a table checking Emma's blood sugar before she ate a snack...her animas meter remote in my hand...like countless times before...and as I was bolusing her, I heard a little girl on the other side of the table whispering to her Dad. I looked up and they were staring a us...the little girl was curious...her Dad had that all too familiar look of "newness" in his eyes. He explained to me that his little girl was just diagnosed in November and she was terrified of the pump...but since she had been at the conference...and she had seen all of the kids on pumps...it was easing her mind. I opened my mouth to say what I usually say about Emma's Animas Ping....how much we love it...how it has given her back so much of her freedom...how she would never go back to injections....but before I could get a word out, Emma spoke up. She told the little girl that she loves her pump...and that she was SO freaked out about it for years...but once she decided she wanted it...and actually did the site changes a few times...it was easy. She told this little girl that it doesn't really hurt at all anymore to get site changes...except for on her legs still...but how I use numbing cream for those and it makes it easier. I honestly wanted to cry as I stood there listening to her talk. She sounded so grown up...so in control...like this was so normal. I watched these too little girls have a conversation about insulin pumps and the pain involved....and it hit me. On the outside...to anyone walking by that didn't know them...it would appear these two girls were just chatting...maybe about One Direction...or Spongebob...or Monster High dolls......but if you stop...peel off the blinders and peer in a little closer....they were talking about something so much more grown up...and serious...and real...and important to their lives.
I saw Emma run around and dance with another little girl she met...giggling and whispering secrets as only two little 9 year old girls can. They both have type 1 diabetes. They both have a pump. They both live this life with strength and bravery and determination that would rival the greatest leaders of the world......and they are only 9 years old.
I sat there in another conference room listening to Kyle Cochran (please google him if you don't know him!) speak and share his incredible story. He is strength and inspiration personified. He encouraged us all to find that special thing inside of ourselves and run with it....use it to make the world around us a better place...use it to help others...inspire them...encourage them. Every time I saw him walking around this weekend, he was smiling....every single time. It was infectious.....we couldn't pass him by without saying hi and smiling back and chatting.
I got to meet in person one of the most amazing people I have ever met in my life this weekend. She is a pillar of support and inspiration as well. She has the same infectious smile and personality as Kyle. I found myself wandering around at different points this weekend...checking things out...chatting with others...and I would hear her laugh. See, she has one of those special laughs...the kind that makes you smile when you hear it...and laugh right along with her...no matter where you are. She has a light that shines out on the world around her....an honest light...a truly pure and good to the very core of her being kind of light. I am blessed to know her and be able to call her my friend.
So, like I asked in the beginning of this post....how do you describe the feeling you get being at an event like this? How do you describe the instant smile that shines on your face as you hear various meters and pumps beeping...lancet devices clicking...glucose tabs being chewed...boluses given? How do you describe the feeling that hits your soul when you hear another Mom tell her child how many carbs is in the food they are about to eat? You look at her and your eyes connect...and no words need to be spoken...not a sound is uttered...but your souls connect...your spirits are bonded together in this life.
There are no words. Only smiles, sparkles in all of our tired but hopeful eyes, and the sound of our hearts beating in unison as we walk this D path together.

3 comments:

  1. So glad you enjoyed yourselves!! There is nothing better than being with a group of people who "get it"! A place were comparing pumps and meters is normal. Wonderful to see you both and looking forward to seeing you again at the next conference :)

    ReplyDelete
  2. It is such an amazing experience and I'm soooo glad you and Emma had the chance to go to FFL!
    To be surrounded by actual strangers but feel such a deep connection with them is the coolest! And then to have "D Super Stars" there to listen to and talk with and ask questions...fabulous!

    ReplyDelete
  3. So awesome to meet you and Emma this weekend, Amy! I loved getting to know Emma over the weekend and was so glad she chose to hang out and give us a chance that first morning! ;)

    ReplyDelete