Friday, September 16, 2011

My kid can die too...

Below my commentary is a blog post written by another parent of a type one kid.(Thanks Kim for posting about it and sharing the link.)  It is a great post. I know people like to comment about staying positive and that is fabulous. I agree and I feel we do stay positive most of the time. I don't like to think about the negative things. They sit in the back of my mind all the time anyway; however, it does happen. Those thoughts creep from the back of your mind to the forefront and hang out for a bit. Death is a possibility with Type 1 Diabetes. I don't talk about it often but sometimes it is a good reminder for people who don't understand the disease.  It's not just a "little" disease that is a nuisance. It is a dangerous disease with a host of ugly complications that can happen to even well regulated diabetes.

Over time, Type 1 Diabetes breaks down the body. If Syd lived to be 70, she will have had diabetes for 66 years--considering we don't have that wonderful cure by then. Technology changes and that is wonderful but considering she has T1 that long, I wonder what condition her body would be in by then? Will she have both her feet and legs? Will she still have her sight? Will she be on dialysis? Will her heart, kidneys, and liver still be her own or would she have had to endure a transplant by then? I don't know. That is why we walk each year. That is why we support research funding. If you haven't donated, please consider to donate to JDRF. 85-90% of every dollar raised goes straight to research. Our CEO, Jeffery Brewer, doesn't even collect compensation for his job. He redirects his salary back to JDRF and research. His son has Type 1 Diabetes and he has the same wandering thoughts that we have. Be a hero, please click HERE to support Sydney's Soldiers and please pass along the information to family and friends. Enjoy the pictures and video below.

Onto the other blog post from another parent, just like me. To visit the blog click HERE or read below where I have copied it. And be sure to listen to Sydney's song at the bottom of the page. Thanks.

My kid can die too…

In a world where there seem to be so many new cases of allergies, I am finding that many people I meet indeed do have a child with allergies. Many of these people are passionate about keeping their children safe, and more specifically safe at school. I listen to how class parties shouldn’t have snacks so their kids don’t feel left out, or kids shouldn’t be allowed to celebrate birthday’s with a cupcake but rather a pencil for every kid in the class. But what always stands out to me in these types of conversations is that the parent usually ends each statement with, “because my kid could die.”
We have been living with Type 1 diabetes for over 4 years. I have explained this disease to numerous teachers, classroom aides, Principals, Vice Principals, class mothers, and friends’ mothers. Really, almost too many people to count as I always feel I am on a crusade of educating everyone about Type 1 diabetes. But until very recently I never added the, “because my kid could die,” statement to my conversations. But that is very much the truth.

I don’t want my son’s sugar to plummet while he is sleeping, “because my kid could die.”

I don’t want my son’s sugar to go unchecked and go to high, “because my kid could die.”

I don’t want my son’s sugar to drop so low when he is high up on the jungle gym as he could fall, hit his head, “because my kid could die.”

I am not sure why this statement hadn’t really passed my lips in the four years since diagnosis. Until recently.

Maybe I am taking some lead from the mom’s of kids with allergies, knowing that the world listens a little better when you add in that a mistake may make a child die. Maybe I am tired of living with this disease 24 hours a day 7 days a week and people still aren’t getting how serious this hidden disease really is. Maybe I want people to understand that the reason I wake up at night, sometimes several times a night, over the course of four years is because I do not want my child to die.

Maybe I am just coming to terms with the fact that my child, my heart and soul, my absolute reason for living, could indeed die from this disgusting disease at any given moment.

I make a flippant remark the other day to a friend when we were talking about ‘my’ life. ”You know it’s a good day in our house when everyone wakes up alive.” It came out faster than I could stop it. As my mom used to say, what’s on my lung comes off my tongue, and this was the case. Although what I said was not insulting anyone it did set ME back a few steps.

In my world, yes, there are fights about school and even with the school. Arguments about cleaning up or lack thereof. Dissent when it comes to bed time. But all in all, it’s a good day in our house when everyone wakes up alive.


Tracy1918 said...

I am so with you! Our kids are alive and we are so thankful. That huge relief you feel when you check your your child overnight and they're breathing....but it's hard to live that way every day.

Tracy1918 said...

Oh! And what a beautiful song!!!!!!

Lora said...

On the day following all the newly lit blue candles, I have no words.

Yes, they can die. I go to bed everynight praying that we don't have to EVER feel the pain from that reality. (((HUGS))) to all of our sweet kids.

Hallie Addington said...

Wow. This is exactly where I am right now. I've been struggling with this today. And I'm reading this while waiting for her bg to come up as she sleeps. Yup. My kid could die. For real. People should know that.

Bruce said...

Thanks for a very informative post
Tips for Dealing with Diabetes

Anonymous said...

Yes, people should know this, that our kids can die from low blood sugar. But I can't bring myself to add that last sentence because she may hear of it. I do vent or "educate" of this fact when fundraising but only in places where I know she will never hear this sentence, such as at work. If parents at her school knew this, that may impact play dates, sleepovers, etc. She has to live as normal a life as she can... that is why I don't say those words in any location where she may be. But we have to make the public aware of the seriousness of this disease. So we have to start saying it.