Archives for February 2014

Offending ‘Miss Manners’

 

BGCheck

Earlier this week advice columnist Judith Martin, whose Miss Manners column is carried by more than 200 newspapers worldwide, responded to a reader’s question regarding whether or not those with diabetes should check their blood sugar in public settings.  Her response was a column entitled “Do Diabetic Testing in Private” and included the following paragraph:

Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such.

As a father of a child with type 1 diabetes, I felt I needed to respond to her and, after writing, decided my message should be shared publicly with all of you.

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Dear Miss Manners,

I read your recent response to the gentleman inquiring about testing his blood in public. While you are certainly entitled to your opinions, your response shows  ignorance and lack of education about type one diabetes (T1D), as well as a lack of compassion for those living with T1D and their caretakers. As a father of a three and a half year old with T1D, I must say that I was completely appalled by your response.

My daughter, Isabella, was diagnosed with T1D in August 2012, just two weeks before her second birthday. She spent four long days in the hospital after her diagnosis while the doctors pumped her tiny body full of insulin. During that time the doctors and nurses educated us about type one diabetes, an autoimmune disease that we knew nothing about until that moment. We learned that had we not caught some of the symptoms early on, our daughter may have slipped into a coma or worse in a matter or days. We learned that our daughter’s life would never be the same. We also learned that we would have to check her blood glucose levels at least 8-10 times per day, count every carb that she consumes and give her insulin injections at least four times per day.

 This became Isabella’s new “normal” life. What we know, and you likely do not, is that failure to closely monitor her glucose, properly count carbs or administer precise amounts of insulin could ultimately lead to our daughter’s death. Therefore, I view every single moment of every single day (awake and asleep) as an emergency. Our daughter’s life literally depends on frequent blood checks and insulin. We have always checked Isabella’s blood in public and administered insulin injections in public, as well. We have always taught Isabella that T1D is a part of her life and she should never be ashamed or embarrassed about it, nor ever let it define her. And, even at three and a half years old, she has embraced her diabetes, checks her own blood sugar and loves talking about her diabetes with anyone that will listen. We would never suggest that she stop doing any of those things because there is a chance that it might make others uncomfortable.

Isabella now wears an insulin pump that is physically attached to her body at all times. We are often asked about the device, which gives us an opportunity to educate others and raise awareness at the same time. I would never even think about covering it up simply so that no one else can see it (so they don’t become uncomfortable about my daughter’s diabetes, I suppose, according to your logic).

The reality is that Isabella is different than other kids, including her triplet brother and sister….however, we would never make her feel different and ashamed by hurrying her off to the restroom every time we have to check her blood sugar when we’re out in public. We believe it is extremely important that she is completely comfortable talking about her diabetes and the effects it has on her life, physically and emotionally, now at only three and a half years old and as she gets older.

We want Isabella to share her story with the world. As her parents, that’s exactly what we have been doing for the past year and a half and will continue to do so until a cure is found for our daughter and millions of others living with this terrible disease. I can assure you that observing a simple finger prick is nowhere near as uncomfortable as what my daughter and millions of others go through every day of their lives.

Your column only motivates us even more and reminds us that we still have a lot of work to do to educate others and raise awareness.

-Greg Dooley

www.InspiredbyIsabella.com

#TeachableMoments

Screen Shot 2014-02-14 at 2.06.08 PMWords can’t express how jazzed (yes, I said jazzed) Isabella and her siblings were this morning for their big Valentine’s Day party at school. It was so wonderful to see the true excitement on their faces when I told them they could FINALLY give their Valentine’s to their classmates.  I asked Isa if she would share her treats with me when she got home from school and a huge smile spread across her face.

“I’m going to get treats? What kind, mom?”

“I don’t know, chica.  I think you’ll probably get some cards from your friends and maybe some candy or cookies.”

“YAY!!!!!”

And just like that her day was made.

It’s days like today that I’m glad Isabella can’t read yet. It’s occasions  like Valentine’s Day and Halloween when I get to witness just how much misunderstanding and lack of education there exists about diabetes, both Type 1 and Type 2.

I am a regular Twitter user and we use our @InspiredbyIsa account to share info about our experience with T1D and  follow our friends in the Diabetes Online Community (DOC).

Two hashtags today, when combined, made my heart sink: #Diabetes #Valentines.

I don’t think I need to explain why…instead I’ll just share a sample of what I saw with all of you.

This. This is why we are doing what we are doing to raise awareness.

And you know what?

Today Isabella WILL come home with diabetes.  Just like she has for the past 535 days…just like she will until a cure is found. And she WILL share her treats with me.

Cheers to Changing the World~
Kristina

Why We All Need A Patty

Isa and Addison

Most people would look at this photo and see two little girls, happy and smiling…without a care in the world. What you’re really looking at are two AMAZING 3-year-olds fighting the challenges thrown at them by type 1 diabetes.

We had an awesome day with little Addison and her family today where we enjoyed pizza,  pump site changes (one planned and one not!), high (400) & low (48) blood sugars, and the beginning of an adorable friendship between two toddlers who’ve found a friend that “has didabeeeteees too!”

Watching Addison ask Isa if she wanted stickers to decorate her new insulin pod and holding her hand during her site change…and seeing Addison timidly show Isa her continuous glucose monitor adorning her little belly…it made me realize just how much it matters to have someone by your side who’s fighting the same battle as you. And I’m not just talking about the girls.

When Isabella was diagnosed we were in the hospital for less than 24 hours when we had a knock on our hospital room door.  In walked a woman that, though I didn’t realize it at the time, would set the scene for how I would be as a mother of a child with T1D.

Over the next hour this woman, Patty, told us about her life as a mom and wife to children AND a husband with Type 1.  She gave us a book of information about diabetes care she had photocopied from when one of her children was first diagnosed. She told us about diabetes camps and the difference they had made in her children’s lives.  She smiled. She laughed.  And her hair and makeup looked great.

She was normal.  

I wanted to be like Patty.

Before Christmas this past year a classmate of Isa’s was diagnosed with Type 1.  Up until that moment Isa had been the only child in her school with diabetes.  I didn’t know the family of this newly diagnosed child and had heard they would be moving and leaving the school over the holidays.  The day before the holiday break I went to the school to pick up the kids and, almost as if it was meant to be, the little boy’s father was there picking him up.  I am a firm believer in fate, and this was it.  It was my turn to be Patty.

I passed our contact info on to the dad and encouraged him to reach out to Greg or I if he or his wife needed anything. I told him about our experience with the OmniPod pump and about the Children with Diabetes Friends for Life Conference we attended in Orlando. I told him we were just a year post diagnosis so we were still learning, too, but that we could certainly provide advice based on our short experience. I was sure I’d return home that day to an email from this family with a list of questions I could answer. 

I was wrong. I was obviously no Patty.

Today while chatting with Addison’s mommy and daddy I was reminded of how important it is for parents of T1D kids to connect. To share stories of what’s worked and what hasn’t.  To commiserate about those unexplained lows and to curse the technology that, in reality, is helping us keep our children alive. To beam with pride when our kids exhibit bravery we could never muster.

We all need a Patty to remind us that our lives as our kid’s substitute pancreas won’t be easy, but to keep in mind that our kids will take their cues from us. It’s up to us to assure them that their diabetes, though a part of who they are, doesn’t define them. It’s up to us to let them know that there is an Addison somewhere out there to hold their hand.

So, for those of you who are newly diagnosed, or those who have just gotten the courage to seek out some support, we are here. I may not be a Patty but I can assure you that my hair and makeup look great, too.

Cheers to Changing the World,
Kristina