Monday, August 18, 2014

It's not about the Ice Bucket and My Response to the Challenge

My husband nominated me to complete the ALS Ice Bucket Challenge today, after he took part by dumping ice water on himself and donating. I will not be dumping ice water on myself, but I still believe I have met the challenge. I made a donation.

In case, you haven't been on social media, live under a rock, or were just oblivious like me for a while, you can find a brief story here from the NY Times. Basically, you dump the ice water on your head or donate $100 to ALS. Now I am extremely jealous of the response this has gotten for ALS. Mainly because of the monetary donations it has garnered for the organization for research endeavors. It's so simple. It costs practically nothing. Genius. I wish someone had thought of this for the Juvenile Diabetes Research Foundation (JDRF) years ago.

The goal of a stunt like this is two-fold: create awareness and get donations. Without a doubt, the Ice Bucket Challenge has done just that and more. So when I was challenged, I made a donation and have decided to call it a day. I don't need to dump ice water on my head; I need to let others know I have made a donation. Now was it the $100? No, but that is because the majority of my extra funds go to JDRF for Type 1 Diabetes (T1D) research. Does this mean I don't care about ALS? No. I have personally known two of the most amazing people that lived, battled, and lost their fight with ALS. It is a fight I would wish on no one, but so is my son's fight with T1D. The value or sum you donate doesn't really matter. Every little bit helps and goes towards the greater good and fight for a cure, whether it be $1 or $100.

Grayson and me at a back to school picnic.
Awareness can come in many forms: a bucket of ice water dumped over your head or you telling others you have donated and why. That is the true challenge: Let. Others. Know. You don't have to tell how much; that's personal. But you should let others know you have given and why. Your de
claration may invoke others to step up and give. In the end, ALS, Komen, JDRF, etc want your support, but your money is what makes an impact in the long run.

I was able to attend a conference for JDRF this summer. It was amazing, and the most important thing I learned was to share my son's story and not to be afraid to ask for the money that could eventually lead to a cure for T1D. The artificial pancreas, smart insulin, encapsulation, and better care for my son are possible because of the contributions of fellow believers.
Part of the DFW JDRF group with the JDRF President. I am holding an encapsulation device. So. Cool.

So. It's not about the Ice Bucket. It's about a call to arms to share your story and why you give. Share it loud and share it proud for all those engaged in the fight.

Donate to ALS for Dr. Joe Kuban, Sandy Lutz or your loved one.

Donate to JDRF for Grayson or Charlotte, or the millions of other T1Ds.

Tuesday, July 8, 2014

Everything AND the Kitchen Sink

While at the hospital, we were taught how to keep a log to track all the data from blood sugar checks, carb intake, insulin given, and the time all this happens. You can read more about how we use these logs here.

Grayson was diagnosed October 12, 2010, and I have EVERY log for EVERY month/week since that date. They are all in a binder that sits on the kitchen counter. Each week (when he was on shots, a log lasted a month, but since starting the pump, they are weekly) I add a new log on top each week and start fresh. When we go to the endocronologist every threes months, I take the whole thing.

As I flip through the pages, I can remember the changes we have gone through three and a half years ago. We now understand how to better care for Grayson on a daily basis. By no means do we understand this crazy disease, but I am pretty kinda mostly confident that my husband and I are doing the best we can.

Am I a hoarder? Probably. But, I just can't seem to be able to let go of these pieces of paper. Eventually, I will move the older logs to a file and put them away or something. Eventually. Right now, I am comforted by their presence together.

Diabetes may be a large part of our lives now, but we can still live a full life and be happy.

Sunday, July 7, 2013

Normal Is Relative

Last night was pod change night. I called Charlotte into the kitchen, and she slouched in and said, "I just don't feel like dealing with this right now, Mom." And...I totally got it.
My alarm goes off, and I hit snooze and go back to sleep. The dryer beeps, but I leave it for a few hours days. It's time to start dinner, but I decide we can eat a half hour late tonight. It's Saturday...a good yard yard still looks like the set of a horror film. If I don't feel like dealing with something, I don't have to. But Charlotte can't put it off. When it's pod change night, it's pod change night. She has to deal with it even if she doesn't feel like it at that moment.
We hugged and talked about it, and in the end all was well better. Most days she doesn't care, but at that time in that moment, it was too much. I'm surprised it's not too much more often. After all, she's only six, but I credit that to her being diagnosed at 20 months. This is her normal - the only normal she remembers, and how often do kids not like to deal with their normal? Most kids are cool with their normal the majority of the time, and she is no different.
Last night is already forgotten, and the next pod change will be uneventful, I'm sure. After all, normal is relative, and this is hers...until there is a cure.

Saturday, June 29, 2013

Looking Back

This summer marks the fifth anniversary of Charlotte's diagnosis. Five years.
On the one hand, I look back and think, "Wow, it's been five years already." A lot has changed in these five years. Ken and I are pretty good at managing this disease, and for better or worse, Charlotte has gotten used to it. She is gaining more knowledge and understanding about being a healthy diabetic, and is now old enough to go to diabetes camp in the summer. Blood sugar checks, insulin doses, and 2am alarms are all part of our normal. When Charlotte was diagnosed, we were so overwhelmed that the thought of reaching any semblance of normal again seemed impossible, but five short years later, here we are, managing diabetes like the rock stars we are.
On the other hand, I look ahead and think, "Wow, it's only been five years." I have to be careful of this thought. If I entertain it too much, I get depressed. Charlotte has been dealing with this for five years, and unless there is a cure, she will be dealing with it for another 70+ years. Looking forward seems endless, like Atlas holding up the world. It's overwhelming, suffocating, too much to deal with. There are moments when this thought wins, and I cannot breathe.
That is why those of us in the diabetic community try to take it one day at a time. If I think about how every single night I am not going to get more than four hours of sleep at a time, I start to lose my grip on sane. If I think about my daughter starting college and me lying awake, worrying about diabetes on top of all the other things college parents worry about, I start to lose my grip on sane. If I think about trying to shop for a wedding dress which hides an insulin pump, I start to lose my grip on sane. So today is today, and tomorrow is tomorrow, and maybe, just maybe, the day after that will be the day she isn't sick anymore. There is where my sane lives.

The craft show is in two weeks.
July 13
St. Stephen UMC in Arlington
1800 W. Randol Mill Rd.
9am - 3pm

Friday, April 12, 2013

Thanks, Hugs, and All Things Sappy

Ladies and gentlemen ... we have done it. We have filled each and every spot for the craft show. Would it be too sappy to tell you that my heart is full? That I am so thankful and appreciative of all our vendors? That I could hug each one of you? Because that is all true.

So thank you, vendors, for your time, your talents, and your donation to fund research for a cure for diabetes.

And thank to all of you who are planning to come; who are telling friends, family, and neighbors; who will make a donation at the door no matter what that amount may be. You also get hugs from my full-hearted self.

One day type 1 diabetics won't need insulin or shots or alert dogs or glucometers or pumps or CGMs because they won't be type 1 diabetics anymore. And on that day, you can tell people that you helped make that possible. That you were a part of something bigger than big. That you are someone's hero.

Can you imagine? A world without diabetics but full of heroes.


Most adorable. Diabetics. Ever.

Sunday, March 10, 2013

24 Hours, 18 Pokes

For today's activity, you are going to need a rubber band to wear around your wrist because for the next 24 hours, you have type 1 diabetes. The rubber band is going to simulate your finger pokes and your insulin injections. Each time you have to check your blood sugar or give yourself a shot, you will need to snap yourself with the rubber band.

8:00am: blood sugar check (pop) - 105 ... perfect
             Breakfast - 57 carbohydrates ... you'll need insulin (pop)

10:00am: you're feeling shaky; check your blood sugar (pop) ... your blood sugar is 65; too low!!
                Hungry or not, you need to ingest 15 carbohydrates.

10:30am: recheck blood sugar (pop) - 100 ... perfect!!

12:00pm: blood sugar check (pop) - 190; too high, you rebounded after you low earlier ... you'll need extra insulin with your lunch
                Lunch - 73 carbs ... you'll need insulin (pop)

2:00pm: you feel off; check your blood sugar (pop) ... it's 204, still too high!! More insulin (pop)

3:00pm: recheck blood sugar (pop) - 160 ... it's coming down

5:30pm: blood sugar check (pop) - 98 ... perfect
               Dinner - a lean 30 carbs, but you'll still need insulin (pop)

6:00pm: you decided to eat dessert ... 40 carbs, so you'll need more insulin (pop)

8:15pm: you feel shaky; check your blood sugar (pop) - 103 ... perfect

9:00pm: you still feel shaky; check your blood sugar (pop) - 71 ... too low!!
               Hungry or not, you will need to eat 15 carbohydrates

9:30pm: recheck blood sugar (pop) - 110 ... perfect!!

11:00pm: bedtime blood sugar check (pop) - 83 ... it's borderline, so you'll need to get up at 2am just to make sure you're okay

2:00am: blood sugar check (pop) - 65 ... too low!!
               Get out of bed, go to the kitchen, and ingest 15 carbohydrates.

2:30am (still awake): recheck blood sugar (pop) - 90 ... perfect!!

8:00am: breakfast ... time to start it all again!!

Tuesday, February 26, 2013

Something Quick

We are currently trying to find new ways to advertise for the show. Flyers and Facebook posts will only get you so far...

The above ad is intended for a playbill at a local theatre. Every little bit helps and if placing this ad will encourage even just 10 more people to come to the show, we have accomplished something.

You can help by spreading the word, marking your calendars, and joining us on July 13th. We have some wonderful vendors, who have amazing handmade creations for sale. Look for posts and links to some of them in the coming months.

It is going to be a great show!!!