Guilt

laughterTears. Lots of tears.

Arms flailing, screams echoing through the house. A chorus of doors slamming and feet stomping rattle the walls.

Dr. Jekyll, meet Mr. Hyde.

So often people tell us that Isabella seems so happy, always full of smiles. We share photos of her with her silly grin, stretching from ear to ear, proud of this and happy about that. To the outsider she seems like a toddler full of so much joy, conquering each daily challenge with a hop in her step and a shine in her eyes.

But not today.

Today she is losing…and so are we.

One of the many challenges of type 1 diabetes is that its affects can vary person by person. Some can feel their lows coming, getting tired and shaky. Others, like Isabella, show no sign that their blood sugar is falling to a dangerous level. In fact, Isabella is almost always giddy and laughing when she is low.

As difficult as it is to tell her lows, her highs are hard to miss. The happy, goofy 4-year-old disappears and an anger-filled stranger takes her place and, as has become routine, she is exiled to her room until she calms down…usually falling asleep, exhausted from screaming and crying.

And I feel guilty.

I feel guilty because I know her body is playing a mean game of “Perfection”…just waiting for the sand timer to run out while trying everything to get her blood sugar back in range before scattering all of the pieces to the ground. No matter how hard we try, it always seems like the sand is faster than the insulin running through her body and we lose…a lot.

But there she is, sent to her room to cry it out and sleep it off. Kept home from a classmate’s birthday party because of her diabetes-assisted tantrum. Punishment for a disease she didn’t choose and for effects she can’t control.

And I feel guilty.

We get home from the party and prepare for bath time. I’m still angry at Isabella for her earlier fit, and even more frustrated that she doesn’t understand why she couldn’t go with her brother and sister. As she steps into the tub a mix of emotions hit me as I catch a glimpse of the technology keeping her alive. An insulin pod attached to her arm and her continuous glucose monitor embedded in her lower back…my robotic daughter.

And I feel guilty. And I am mad. Mad at this disease and mad at what it does to my beautiful little girl. Mad that I can only control so much and mad that I feel guilty for trying to parent the best way that I can.

And tomorrow we’ll flip the sand timer again…

Cheers to Changing the World~
Kristina

Here we go again…

I have always loved Halloween. I love dressing up and I love the excitement leading up to it. It’s probably no secret to those that know me well that I start planning costumes months in advance…and we don’t disappoint!For most kids, though, Halloween is about much more than choosing costumes.

It’s about the candy. C-A-N-D-Y.

Most people would expect that, as parents of a kid with type 1 diabetes, Halloween would be the holiday we dread the most.

And they would be right…but not for the reasons you would assume.

THIS is why I dread Halloween:

Halloween Diabetes
And this:
halloween diabetes 2
A year ago before Halloween I wrote a post in response to someone else’s blog entitled 10 Halloween Candy Alternatives That Won’t Give Your Kids Diabeetus. I realized then that there will always be people who choose to perpetuate stereotypes about this disease, simply because they don’t KNOW what it is. I also realized that there are people who back up jokes like these with the claim of “I was actually referring to TYPE 2 diabetes!”…as if that makes it ok. How about making a joke about cancer and saying “Oh! I didn’t mean breast cancer, I meant prostate cancer, silly!” Nope. Not ok. Another person’s illness or disease is not a joke…no matter what it’s called.This year I’ve decided that instead of being mad about these things, I’m going to channel my inner spirit fingers and let them help recharge my motivation (“Gimme a C-U-R-E!”). I know that our efforts to raise awareness and educate people about type 1 diabetes are helping someone…or many someones. I just know it.

I also know (ok, I just looked it up) that the word “ignorance” comes from the Latin ignorantia meaning “want of knowledge”. So you know what? We’re going to help the folks who continue to perpetuate the stereotypes about “diabeetus” (which, by the way, was only funny when it was said by Wilford Brimley) and keep supplying them with LOTS of knowledge.

You want it? You got it.
bees

Happy Halloween!

Bring it On…and Let’s Change the World~
Kristina

 

Three Words: Reflections from Friends for Life

fflI had just finished participating in DSMA (Diabetes Social Media Advocacy), the live Twitter chat that happens every Wednesday night at 9pm EST (which I’ve suddenly become addicted to). It was around 10:30pm and I finally sat down to write my blog post, reflecting on the Children with Diabetes “Friends for Life Conference” that we attended in early July. I typed my initial thought for the headline and an opening sentence…

That’s when I heard the crying and screams.

It was Isabella. She had been in bed and presumably asleep for an hour or two but was now awake and crying. I went upstairs to check on her…but she was already coming down the hallway on her way downstairs to see us. I asked what was wrong and she continued to cry; unfortunately, this scenario is not entirely unusual when you have nearly 4-year-old triplets who never want to go to sleep at night. Admittedly frustrated, I scooped her up and immediately knew something was wrong. Her little body felt like it was in a cold sweat. She continued to cry and wiggle around as she wrapped her arms tightly around me.

I suspected that her blood glucose was still very high (her levels had been high since we changed her insulin pod several hours earlier). I pulled out her meter and confirmed that she was in fact high (471!).  In and of itself this is not terribly concerning as her level can vary widely (after all, she’s a growing toddler!) and the solution is fairly straightforward – give her insulin to bring her level back down. The problem was that her level had been high for several hours and it was now clear that the insulin we had already given her didn’t seem to be having the desired effect of reducing her blood sugar level. Her pod likely wasn’t functioning or had come loose, which we hadn’t realized earlier.

We checked for ketones; if present in the bloodstream, ketones can lead to DKA, or ketoacidosis (resulting in a coma or worse). For the first time since her diagnosis, Isa had “medium to large” ketones, which is approaching very dangerous levels. I called the hospital emergency line to reach the on-call endocrinologist, and had prepared myself for what I thought would be our first diabetes-related visit to the ER since her diagnosis nearly two years ago. The doctor suspected that Isabella’s pump had not been delivering insulin for several hours and suggested we give her an insulin injection. Isa was scared…I guess she had already forgotten, or at least didn’t want to remember, the nearly fifteen-hundred insulin shots she received during her second year of her life. We replaced her pod and gave her an injection of insulin for the first time since she started on her OmniPod nearly 12 months earlier. Thankfully, within a couple of hours, her level came back down into range. With that, our diabetes crisis was averted.

I never did finish my “FFL reflections” blog post that night, so I wanted to finally share some thoughts. As I reflect on the conference, three words come to mind: inspired, hopeful and proud. Here are a few reasons why…

Inspired

  • We met and had the opportunity to hear from several athletes living with T1D that have accomplished amazing things: Jay Hewitt, Ryan Reed, Charlie Kimball, Sebastien Sasseville. These individuals truly inspire us and are great role models for our daughter; they remind us that anything is possible!
  • We met many great families, some of which we had already “met” in the DOC; I’m inspired by how they manage through this challenge day-after-day, month-after-month, year-after-year…while keeping a positive attitude, continuing to raise awareness and finding ways to overcome “diabetes burnout.”

    ffl mila

    Finally Meeting The Ferrer Family of “Jaime, Mi Dulce Guerrero”. Somos Amigos Para Toda La Vida!

Hopeful

  • We had the opportunity to hear about the Bionic Pancreas, a medical device currently being developed and tested by Dr. Ed Damiano and his team at Boston University. Dr. Damiano began developing this device as a commitment to his son, who was diagnosed with T1D at just 11 months old (he’s now 15). The technology is amazing and would enable Isabella and many others to live without having to worry or even think about diabetes every single day.
  • Isa started a trial of a Dexcom G4 CGM (continuous glucose monitor) during the conference. This was made possible by Jeff Hitchcock, Founder & President of Children With Diabetes, who asked if we were interested in participating in the trial. Jeff helped arrange everything with theDexcom team (who, by the way, are an amazing group of people!), and we were off. We’re hopeful her newDexcom CGM will help provide us with information to make more informed decisions about managing her diabetes…and will provide us with some sleep-FILLED nights!

    ffl jeff

    One of our Friends for Life – Jeff Hitchcock, Founder & President of Children With Diabetes

Proud

  • I was so proud to see Isabella seek out others with green bracelets (all those with T1D were wearing green bracelets) to introduce herself and say “I have diabetes, too!” She was so proud to show off her OmniPod and her new Dexcom…and that made me smile as I want her to be proud of who she is, embrace the challenges in her life and turn them into opportunities.
  • Isabella and her triplet siblings, Mia and Max, made so many new friends during the conference and I know they will truly make “Friends for Life” as a result of attendingFFL each year. That makes me one proud papa!

    ffl lenny

    The Trio with Lenny the Lion!

Overall, the conference was once again amazing. It is truly a great feeling to be with 800 other families that understand exactly what type one diabetes is all about and how it affects our family, both emotionally and physically (thank you to the family that gave me juice to treat Isa’s low by the pool!). The conference sessions are great and informative, but interacting with others affected by T1D and hearing about the amazing things they’ve accomplished living with diabetes is what makes this conference so special. Can’t wait for next year’s conference!

-Greg

 

Grandma Gets It: Diabetes and Disney

*Our family had the opportunity to attend this year’s Children With Diabetes ‘Friends for Life’ Conference held each summer in Orlando.  This was our second year attending the conference and we decided to invite one of Isabella’s grandmothers, Darlene, to join us. While we will be sharing our own thoughts on the conference (look for 2 additional posts from us with our mom & dad reflections), we also asked “Grandma Dar Dar” to write a guest blog about her experience.  We hope it will encourage other grandparents, aunts, uncles, and extended family to consider learning more about caring for a child with type 1 diabetes…the more people a family has on their diabetes care team, the better!

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A great night at the Friends for Life banquet!

I spent an incredible week with my son Greg, daughter-in-law Kristina and triplet grandchildren, Isabella, Mia and Max in Orlando for the Children with Diabetes Friends for Life conference. When they invited me to go with them, I had no idea what all was involved.

The conference didn’t start until Wednesday so we spent the first 2 1/2 days at the Disney parks and it was such fun. I think we stood in line to see every Disney princess possible…as well as Mickey and Minnie. The kids were so excited.

We went on rides, too, and while waiting in line for one ride, Isabella pointed to a little girl in front of us and said that she had a green bracelet on. Her dad asked her what it meant and she said that the girl had diabetes. We hadn’t signed in for the conference yet but, when you sign in, you get a green paper bracelet if you have T1D and an orange bracelet for those who do not have T1D. Isa remembered this from the previous year and it amazed me that she remembered this. Then Isa showed the little girl her OmniPod insulin pod.

When you go somewhere with children you have to take extra clothes, snacks, diapers or Pull-Ups, if needed. When your child has T1D you also need to bring glucose tablets, juice boxes, insulin, a glucometer and glucagon (an injection in case the blood sugar drops too low). Greg and Kristina checked Isabella’s glucose level frequently throughout the day. While we were waiting for the shuttle to take us back to the hotel, the kids were running around and all of a sudden, Isa was just standing there and said she was tired. Greg immediately checked her glucose level and it was in the low 50s so they gave her a juice box to bring it back up. This made me realize that she needs to be checked frequently…and it is a big responsibility.

At the conference I attended a number of sessions for grandparents and learned a lot. Even though I am a retired nurse, I didn’t know a lot about T1D and how to handle the highs and lows since so much has changed with the use of pumps and continuous glucose monitors(CGM). You really need to be on top of things and recognize the symptoms of low blood sugar.

I have also been very concerned about the complications of diabetes and worried for my beautiful granddaughter but ,after attending one session, I was relieved to learn that long-term complications usually only occur if the blood sugar has been high(250-300 or more) for an extended period of time. In fact, one presenter has had diabetes for 55 years and is doing fine.

An interesting statistic is that 15,000 children per year are diagnosed with T1D. A doctor at the Diabetes Research Institute (DRI) in Miami, Dr. Chris Fraker, has found a correlation between certain viruses and T1D and hopes that one day if they can find a way to stop the viruses from destroying the islet cells in the pancreas which produce insulin, then diabetes will be cured.

Many who attended the conference have been coming for years and have developed friendships. It was so great to see the older kids interact with Isa and when Isa saw someone with a green bracelet, she wanted to meet them and show them her insulin pump or the Dexcom CGM she just stared using. 

We heard from athletes with T 1D who have done amazing things like competed in NASCAR and Indy car races (Ryan Reed and Charlie Kimball), doing triathlons (Jay Hewitt), and one young man who is running four marathons per week for nine months across Canada (Sebastian Sasseville) and they are an inspiration to the young people with T1D and show them that they can do anything they set their sights on.

It was a wonderful week and one that I will always remember. 

-Darlene

What I Signed Up For

Trio

“I’m so sorry…I know you were just here.”

“It’s fine. It’s what I signed up for.”

I jump in my car, still warm from my return trip picking up a sick son just 30 minutes earlier, and head to the preschool to tend to an insulin pump that is screaming its head off…the 6th insulin pod in a box of 10 to bite the dust before the 3-day window closed.

But, this is what I signed up for.

Last month I made a quick stop at Macy’s and, as has become customary since our trio arrived, I spent the entire time flipping through the clearance rack in the kid’s department.

I stepped up to the checkout counter, my arms filled with Dora jammies and Hello Kitty flair, proud of my deal-seeking skills.

 

“Wow! Do the girls you are buying for know that they’re getting some cute new things?”

“Actually, these are for my daughters.”

“Oh, you have twin girls?”

“Well, I have triplets…two girls and a boy.”

“Holy cow! What did you do when you found out you were having TRIPLETS?!? I would have hung myself.”

And…scene.

The sad truth is that this isn’t the first time someone has said something like this to me. In fact most people I meet who learn that we not only have triplets, but that one of them also has type 1 diabetes, express their sympathy to me in varying forms.

But, this is what I signed up for.

When I was young I used to say that I didn’t know if I wanted to have children…I knew I had a selfish side. I wanted to be successful professionally. I wanted to travel. I wanted to have the freedom to do what I wanted, when I wanted.

And then things changed. I wanted to be a mom.

But it wasn’t that easy. Not easy at all. Like, 5 years not easy.

It’s not until you realize that there’s a possibility… a real possibility…that you can’t have kids that you realize whether or not you are meant to be a parent. I realized I had been wrong.

I wanted someone to call me “Mommy”. I wanted someone to ask me to tuck them in at night and assure them that there were no monsters in the closet. I wanted someone to ask me why the moon goes to sleep during the day and why Donald Duck doesn’t wear pants.

That is what I signed up for.

When people ask me “How do you do it?” the answer is actually pretty simple…how could I not? I don’t know any different.

When you become a parent you are making a commitment to one thing: to love your children…no matter what. We don’t get to choose what challenges come with parenthood. We don’t get to decide what we can handle and what we can’t…that’s done for us. What we do get to play a role in is HOW we parent and HOW we show our children that we love them.  Did I sign up for diabetes? Of course not.  But I did sign up for being a mom…diabetes or not.

I am constantly amazed by the number of friends we have whose children are facing challenges including type 1 diabetes, Spinal Muscular Atrophy, Apraxia, severe food allergies, and many more. Did any of us know or envision our children’s lives being consumed by these challenges? No way. Did any of us know we would soon become advocates, fundraisers, and educators about these diseases/disorders? Not a clue.

But, we have…because that’s what we signed up for.

Cheers to Changing the World~

Kristina

 

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

When Routine Is Not So Routine

surgery2On Monday Isabella had two fairly routine surgeries…one to remove a small, pea-sized bump on the left side of her neck (she was born with it) and another to insert tubes in her ears (we wouldn’t have known about the fluid in her ears if she hadn’t see the ENT doctor about the bump on her neck!). As parents of a child with type one diabetes, you quickly learn that “routine” procedures are never quite routine anymore. You have to be prepared for everything.

Isabella had known about her surgery since the day she met with the doctor. She knew that the doctor would make a cut in her neck to take out the bump and also knew that he would put some tubes in her ears.  She understood all of this as we talked with her about it several times…yet I never really saw her show any signs of fear or anxiety. In fact, in the weeks leading up to her surgery, she loved telling her brother and sister that the doctor was going to remove her bump and put tubes in her ears. She told them as if to rub it in that SHE was going to the doctor and THEY weren’t (our kids love doctor visits!).

The night before the surgery I went to check Isa’s level before bed and heard her say in her sleep, “blah, blah, blah…tomorrow…blah, blah, blah.” At that moment, I knew that she was nervous about the surgery. I sat there thinking what a strong, brave and courageous little girl she is, a fact I’m reminded of on a daily basis. I corrected her low blood sugar, something that would be more difficult in another hour since she had to fast after midnight and up until the surgery (not an ideal situation for someone with T1D!). A few hours later she climbed into our bed with a fever, a cough and tears. She tossed and turned for the next several hours until we woke her to leave for the hospital.

We arrived at the hospital early in the morning, about two hours prior to her surgery.  After registering Isabella they called us to one of the hospital rooms where we met with a nurse.  She started asking us questions about Isabella’s diabetes. Isabella was being very quiet and shy.  Then we were visited by a child life specialist, who really made Isabella feel comfortable and she started to come out of her shell.

Unfortunately, Isabella’s cough had gotten a bit worse and her fever was starting to come back. The anesthesiologist expressed some concern and we thought that they might cancel the surgery. While we were hoping the doctors would make the best decision to ensure our daughter’s safety, we really didn’t want to reschedule the surgery for another day. Thankfully, they decided to move forward with the surgery.

The doctors and nurses “huddled” in our room…and discussed the surgery to align their team and also ensure that we knew what was going on. It was a bit unnerving because we really didn’t know up until that moment if she would be able to wear her insulin pump during surgery and recovery (which would have been approximately 3 hours without basal insulin from her pump); we were prepared for any scenario, including an overnight stay. Luckily, the doctors agreed she could wear her pump during surgery.

At this point, I checked Isabella’s glucose…she was at about 90, which is generally a decent level; but, she still had insulin on board, which meant she would be dropping lower. This was concerning, especially given the uncertain effects of the anesthesia and her cold. After a bit of discussion, the doctors agreed to let us give her about 2.5 grams of glucose gel, which we were hoping would be enough to combat the insulin, while they prepped her for surgery and hooked her up to an IV (which they could use to give her glucose, if needed).

As we weren’t permitted in the operating room this meant the anesthesiologist would be in charge of monitoring Isabella’s glucose levels and applying insulin, if needed. We knew she would be checked at least once per hour and they would handle corrections as needed, but we had no idea how her body would react to the anesthesia, so we were quite nervous. It didn’t help at all when the anesthesiologist turned to me and asked, “Can you show me how to use her pump?”

I nearly grabbed Isabella and ran for the exit! I took a deep breath and literally gave a 5 minute crash course on how to use her OmniPod. I really wasn’t feeling too good at that moment. I calmly began to explain all of the backup supplies in her kit, including the insulin pen in case the pod stopped working or in the event they had to remove the pod unexpectedly.  I felt like I was being rushed along since they were getting very close to the surgery start time. I kept thinking I was forgetting some important detail.

Surprisingly, I was not at all concerned about the actual surgical procedures they were about to perform, but I was terrified about the uncertainty surrounding Isabella’s T1D. As much as I tried not to think about it, I couldn’t help but recall the recent national news story about a young girl who went for a “routine” procedure, which ended tragically for her and her family. That was without T1D involved.

The anesthesiologist told us it was time for Isabella to go back to the operating room and be prepped for surgery. Isabella, of course, chose to have her mommy join her while they applied the anesthesia. I gave Isabella a kiss goodbye and told her I loved her and that I would see her soon. Isabella, Kristina and the doctor left the room and there I was standing all alone, with tears welling up in my eyes. I sat down and prayed that my little girl would be protected and that her doctors would make the right decisions to ensure a successful surgery and quick recovery.

A few minutes later, Kristina returned and we left for the waiting room. While we waited, we received periodic updates on the pager provided by the hospital. This was a nice feature as it kept us up to speed on the surgery.  That being said, I nearly jumped out of my chair the first time the pager vibrated. Luckily, it only read, “Surgery began at 9:59am.” About 30 minutes later, another alert read “Patient still in surgery. Everything’s going well.” Everything’s going well! What great news!

It wasn’t until after the surgery when we met Isabella in recovery that the doctor told us that her blood sugar dropped to 60 during surgery, at which point they started glucose through her IV drip and she began to slowly climb back up. It was probably a good thing that we didn’t know that as we would have both been a nervous wreck.

Isabella was sleeping soundly and looked so cute laying there. I sat there watching her sleep with an IV, heart rate monitor and various machines beeping in the background.  My mind immediately took me back to August 28, 2012 when Kristina and I sat in a similar hospital room in Mexico City shortly after Isa was diagnosed with T1D. Seems so long ago.

Then Isa started to move around a little bit as she was waking up. I jumped up from my seat and gave her a kiss on the forehead and told her she did so well and that I was so proud of her. The nurse said we could pick her up and hold her. Isabella, of course, wanted mommy to hold her (I’m sensing a pattern here!). She was very happy when they brought her a “purple-flavored” popsicle, her first meal since the night before.

All of the nurses and doctors kept commenting on how mature Isabella is and how much older she seems. Unfortunately, her life is not that of an average child due to her T1D. She has been forced at such a young age to exhibit strength, bravery and courage that most adults, including myself, have not had to deal with in their lifetimes.

I am truly Inspired by Isabella. Are you?
~Greg

Why It’s Not Funny

 

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I get it.  I really do.  I get it because I was once just as unfamiliar with diabetes. I get it because at some point in my life I’m sure I’ve made some joke that undoubtedly served as a face-slap to an entire subset of the population who have been affected by whatever it is I thought was hilarious.  I get it.

But here’s why it’s not funny.

Someone shared this blog post on a Facebook group we belong to for parents of kids with type 1. They shared it with the hope that the T1D community would comment on the post and explain to the author how her title just perpetuates the stereotype that diabetes is caused by eating too much candy.  Many parents, rightfully hurt and some outraged, commented on the post with stories of their young children, some diagnosed with type 1 even before eating solid foods, let alone candy. Others shared their frustration about the lack of distinction between type 1 and type 2 diabetes; while others offered words of support for both T1’s and T2’s.

And you know what happened? The author added this disclaimer:

Now, I know that you can’t “GIVE” your child Type I Diabetes. Type I Diabetes, in children isn’t caused by a high amount of sugar in the diet. However, Type II Diabetes is another story. Fifteen years ago, type 2 diabetes in children was almost unheard of. A 2007 study in the Journal of the American Medical Association estimated that there are about 3,700 new cases of type 2 diabetes a year among youth in the United States.

And she missed the point.

Yes, many parents of kids with type 1 were upset by her original post, myself included.  However, the responses she received were not intended to simply make sure her readers were aware of the difference between Type 1 and Type 2.  The responses were intended to let her know one thing: our children’s livelihood is not a joke.  Regardless of whether someone has Type 1 or Type 2, this blog’s title is hurtful and just perpetuates a stereotype about what is a very serious disease.

The reality is that we have a lot of educating to do…not only about diabetes, but about kindness and respect. It’s easy to make assumptions about things we know nothing about.  It’s easy, and I get it.  I’ve done it, too.  What makes the difference, though, is owning up to it and making the commitment to educate yourself about what you don’t know.

However, there is one thing I do know: our Halloween is gonna be awesome…candy and all.

Tricks and Cheers to Changing the World~
Kristina

 

 

Monkeys Always Make Things Easier to Explain

Coco ReadingImagine trying to explain Type 1 Diabetes to a 3-year-old. Now imagine trying to explain it to a whole class of 3-year-olds.  Sounds like a challenge, right?  Well, challenge accepted!

For weeks I’ve fielded questions from Isabella’s curious classmates as I checked her blood sugar and gave her insulin shots.  With Isabella starting on her OmniPod pump, I was thrilled that her teacher let me come in and read two books to her class about a new Disney character with T1D: Coco the Monkey. Not only does Coco have diabetes, she also wears a pump…just like our Isa!

The books follow Coco as she begins school and as she prepares to attend Goofy’s birthday bash.  I learned during our book reading  that 3-year-olds have very selective hearing (you’d think I’d be VERY familiar with this already) as the kids yelled out things like “My birthday’s next week, too!” and “I met Pluto this summer!”  Regardless, the kids did great and I loved seeing how proud Isa was to show off her pump to her friends.

If you are looking for a way to “explain” your child’s type 1 diabetes or their insulin pump to young classmates or friends, I highly recommend you check out these books.  Though not available for purchase, you can ask your child’s doctor for copies.  More info about the Disney partnership with Lilly can be found here: http://spoonful.com/type1.

Cheers to Changing the World,
Kristina

 

 

 

 

 

 

 

 

 

 

 

 

Sometimes, you just need a good cry…

lemonsIt was bound to happen…it just took a year.  Greg and I finally coordinated our emotional roller coasters to have ourselves a good’ ole cry tonight.  Now, it wasn’t waterworks, by any means.  It was more of a collision of emotions occurring whilst sitting down to dinner after a long weekend.  Either way, we needed it.

I’ve said many times before that  few tears have been shed since Isabella’s diagnosis. I would say that I had expected today to be filled with anxiety and apprehension…today was Pump Day, after all.  We knew Isabella would be a rockstar when it came to the actual pump hook up…and we were right.  No tears. No screams.  Just a simple “Where’s my cookie?” (Yes, I bribed her to sit still for the pump insertion.  Don’t judge me.)

However, 8 hours later we sat at our kitchen table, kids miraculously asleep, tears welling up in our eyes…in silence.  We were coming to the end of a day that felt much like a chart of Isabella’s blood sugar: a mix of high and lows.

My excitement about Pump Day quickly faded this morning as we listened intently to the trainer explain features of the device.

“You should keep the sound turned ‘On’ for now so you’ll hear if there is an error in the pump or a reminder…but when she’s a teenager she’ll probably want it set to ‘vibrate’.”

A teenager?  She’s not even 3!  This simple sentence painted a very real picture for us: Isabella will almost certainly STILL be managing her T1D in 10 years when she becomes a teenager.  For those of you reading this who haven’t been personally affected by this disease, let me share with you the thing we ALL hear shortly after diagnosis: “A CURE will most likely be found within the next 10 years.”  Sound familiar to anyone out there in T1D land? I am positive that I echoed this very phrase to multiple family members and friends just one year ago.  As much as I would love to believe this, my gut tells me we still have quite a bit of progress to make.

Greg and I also spent some time tonight talking about people’s reaction to seeing Isabella’s OmniPod pump. I wish every one of you could have seen her excitement when we arrived home and she jumped out of the car and ran over to Max to say “Look at my pump.  My insulin is in there…and it’s mine, not yours.” It also took all of 5 seconds for her to adorn the pod with Disney stickers featuring Jasmine and Ariel:)

We really hope that people ask, in curious and non-judgmental ways, what this thing is that is attached to her teeny arm.  We want her to wear it with pride and never be embarrassed by it.  I truly hope she always wants to bling it out and play “Pimp My Pump” forever (curse you, Xzibit, and your flashy grills), and that she has the power to take someone’s lack of knowledge about type 1 diabetes and turn it into a teachable moment (my college professors are beaming right now).

In the meantime, we’ll continue our work towards a cure.  After all, we still have 9 years to go 🙂

Cheers to Changing the World,
Kristina

PS-Thank you to all who have contributed to our JDRF Walk to Cure Diabetes Team this year!  We have met 66% of our goal and would love to have support from many others.  If you’d like to donate to our team, please click here.