Thursday, October 21, 2010

Why we need a cure

If you are a parent, I'm sure you remember all too well standing over your baby's crib or bassinet, watching them breathe. I bet you even held a finger or put a mirror under their nose just to make sure. When Elise was born, I lived in fear that SIDS would steal her away from me as she slept.

And when she reached an age when SIDS was no longer a concern, I breathed a huge sigh of relief. Little did I know that a few months later I would have a newer, bigger worry to deal with.

Diabetes comes with a laundry list of complications; heart disease, nerve, kidney and eye damage are some of them. But there is another complication. A more sinister, less talked about one. It's called Dead in Bed Syndrome. Basically, a person with diabetes can pass away during the night due to an untreated low blood sugar.

Today my heart is aching for the family that lost their 13 year old daughter to Dead in Bed Syndrome. And the part that hits hardest is that her parents, by all accounts, were diligent in their care of her diabetes

When I usually explain to the uninitiated all the work that goes into caring for Elise, the response is always surprise. Especially when I get to the part about how we get up at least twice a night to check her blood sugar.

I know it seems over the top to most people, but as Elise's Mom, I will do everything in my power to protect her from harm. And I know that I cannot be there 100% of the time. I know I cannot protect her from every evil in this world, but you can bet that I will bust my ass to try.

Let's look at it this way; when you get in your car, you either strap your kiddo into their car/booster seat, or make sure they put their seat belt on, right (let's disregard this is a matter of law for the moment)? Why do you do this? You're a safe driver. You obey all posted speed limits, you use caution, and pay attention to the road.

But what you can't control are other circumstances; drunk drivers, people who text and drive; and the ones who just plain suck at driving. You have no idea at what might happen next, so you do what you can to protect your child... it's just good ol' common sense, right?

Unfortunately, a parent is NOT a pancreas. No matter how hard I try, I cannot replace that precious organ in Elise's body. I was not created to control and maintain blood sugars. All I can do is use my common sense and do my absolute best.

And this is why we weigh every carb Elise eats.

This is why we check her blood sugar 10-12 times a day, and at least twice a night.

This is why we don't leave Elise with anyone.

It is why, every seven days, we inject a sensor into Elise, so we can monitor her blood sugar via a Continuous Glucose Monitor.

It's why I ALWAYS have a watchful eye on Elise.

It's why Elise comes with us on our date nights.

And why I carry a backpack full of strange gadgets and food. It may seem odd to you, but it might just save Elise's life one day.

It's why I am so tired, so distracted, so overprotective, so consumed and so frightened. Because stories like this happen. And they happen to people who do everything they can, just like we're doing.

And so, my heart is breaking. Not just for this family, but for all the other D-families out there who hear these stories. And the need to check their kiddos a little more often and hold them a little closer consumes them that much more.

Please God, let us find a cure soon.


shannon said...

Your seatbelt analogy is spot on. Thanks.

Janice said...

*Sigh* How stressful this all is for you:( You do such a great job with her and she is so lucky to have a mom who would do absolutely anything in her power to keep her safe. And when that's not enough and things are above your control, it must be nice to know that God is in control and you can trust Him to protect sweet Elise.... In the meantime,I'll continue praying for a cure:)

Laura@Cowboy Boots said...

ohhh my heart too breaks for that family!

you are a strong woman! God knew exactly who's arms to place elise in (you too fred)

Kim said...

I agree, Joanne. We need a cure. Our prayers are with that family; praying that they will not place blame on each other for what might have been or not been done. Praying that this will bring them closer together not cause divisions. We are praying for you all as well, and so thankful for your ability to educate and share your stories with us. Love you all!