Diabetes stinks....

This morning while I was straightening Alyssa’s hair (today is picture day at school), I asked her, “If someone asked you what it was like to have diabetes, what would you say?” She replied simply with, “Diabetes stinks.” Now, for those of you who know Alyssa, you know that she can be quite dramatic. For instance, if she’s has a headache, her head is “killing her to deathhhh” or when she’s told to clean her room, she‘s been known to lay out in the floor explaining she‘s way too exhausted to take on such a task. So, as you can imagine, I was expecting a much more elaborate answer….like “diabetes is horrible!”, or “diabetes is the worst thing ever invented!”

Now most would think that this reply was a good thing. That Alyssa has adjusted to having diabetes, and that although it’s not great, it really isn’t that bad. Instead, her answer saddened me at first. What child should have to endure this? What child should not be able to eat a piece of candy without thinking about it or be able to eat a piece of their friends birthday cake without looking to their mother to be sure it’s ok. (Side note: at a recent birthday party she told me that she wanted to give up eating pizza so that she could have a slice of cake.) What child should have to prick her finger so that it bleeds before each meal, before physical activity, after physical activity, before she goes to bed, in the middle of the night, and every time she doesn’t feel just right. That’s any where from at minimum 4 and up to 8 times a day. What child should have to have 2 SHOTS in her bottom after breakfast, a SHOT in one of her arms after lunch and a SHOT in her other arm after dinner and sometimes a SHOT before bed if her glucose levels are too high.  What child should have to face the risks of heart and kidney disease, blindness, amputations, and early death?  More simply, what child should not be able to go to a sleep over or anywhere without their mom?

I know there are many diseases out there, and each one of them sadden me….especially any disease that robs a kid of the childhood they are entitled to. Diabetes is a disease that can do just that….if its allowed to….. My husband and I refuse to let this happen. The day Alyssa was diagnosed, I prayed that God would let me take this from her. I think in a small way He has because she has no fear or anxiety about the future of her disease.  I think she sees how diligent we are in advocating for her and researching for new treatments as well as preparing her to be able to manage this on her own one day.  She notices all the people who love, support, and push for finding ways to improve her life.  She knows that without research insulin would never have been discovered and meters wouldn’t be improving each time a new one comes out. Without research insulin pumps would not have been invented (We are so excited that Alyssa’s first pump is on the way and how its going to make life a little bit easier. And instead of 4 SHOTS a day, it will be a new infusion site every 3 days!!) Through all of this she believes living with diabetes will get a little bit easier over time. Most importantly, she trusts my words when I say there will be a cure one day.

I’ve said this many times….Diabetes is the first thing I think about in the morning and the last thing I think about before I go to sleep, and I will gladly take that on for her.  In Alyssa’s eyes diabetes is just a small part of her life and I‘m happy in that.


*This year our team, Alyssa's Army, will be walking in JDRF's event, Walk to a Cure at Elon University in Burlington, NC.  If you would like to make a donation to our team, you can do so through the link below.

Alyssa's Army Walk Page 

 

 

More than diabetes....

Alyssa is a beautiful, active, silly, sassy 9 year old girl who just so happens to have type 1 diabetes. She is so much more than a diabetic....Alyssa loves to cheer, tumble, dance, swim, sing, read, give make-overs to her girlfriends, paint nails, and play with her cat, Cookie, and Chihuahua, Poppy. She would rather be outside than in... loves riding her bike and her brother's four-wheeler. If she must stay in, she loves watching music videos on YouTube and playing on Stardoll.com. Her favorite color is green and she loves all things that glitter.....

"Hey I'm a wildflower, growin' in the sunshine
Soakin' up the way of life I was raised in
Runnin' barefoot bloomin' in a summer shower
Ponytail dancin' I can't help it, I'm a wildflower"
(Jane Dear Girls)

 

Diabetes doesn't define who you are....

Today was our church's Memorial Day Service.  This is a service where family and friends honor those who have passed on during the last year and a special guest speaker talks to the congregation about life and death and how we, as Christians, should not take for granted the time we have before we go on to glory.  This year's  guest speaker's subject was "Who are you?"  He believes when most people are asked this question, their first response is their name and then their profession when describing who they are.  His hope was that the congregation would see they should define themselves as how they live their life through acts and service for others.....as a child of God.  A person is more than their name; more than what they do for a living; more than some one's spouse or some one's parent or child. 

This question got me to thinking about my daughter and how many may think her disease defines who she is.  My daughter has type 1 diabetes, but that is not who she is.  Diabetes is just one part of her life.  Although, the disease can be overwhelming and attribute to how she feels, it is important to remember that this does not decide who Alyssa is or who she is going to be..... if anything, diabetes will make her stronger.

Type 1 Diabetes Research

My posts have been few and far between lately….mainly because I am a full-time wife, mother, business owner, and student… This semester three of my classes all require extensive paper writing so honestly I haven’t had much time to blog. I have really missed it, so I have decided I will at least try to blog twice a month.

I want to begin with how EXCITED I am about the recent FDA approval for testing the artificial pancreas. This study is already under way in other countries. Although I know it will take some time for testing and for it to be made available to patients suffering with Type 1 Diabetes, at least we are on the road!!

Now, for the naysayers who say JDRF is wasting valuable funds researching this artificial pancreas that could be used towards finding a cure~~ WTH!?! JDRF’s mission is also to fund research that improves the lives of those living with this disease. Without research there never would have been insulin, meters, insulin pumps, medication ect…. All of these discoveries keep our Type 1 loved ones healthy and ALIVE! There is still much research going on about beta cell replacement….which if it works…will help the pancreas make insulin on its own. Research takes time and new developments are happening all the time. I do not claim to be a ‘diabetes expert’, however, I love and am the primary care giver of a child who lives with Type 1 and I make it my business to support, advocate for, and research anything that will make her life a little bit easier.

Ultimately, Diabetes SUCKS!! And when I sit and think about what lies ahead for my daughter~ I cry, I get angry, I even scream sometimes…my job is to protect her and there are times I feel helpless. But then I remember there are so many other diseases out there and many other parents who’s children are suffering with untreatable, incurable diseases and I’m thankful that at least we can somewhat control diabetes and I believe we will see a cure. And we are blessed that more and more options are on the horizon.

JDRF First Outpatient Artificial Pancreas Trial Approval