5 Years Later, I Want You to Know…

 

Five years ago today we sat in a hospital room in Mexico City as a doctor told us the news that would alter our lives as we knew them. Your diagnosis would make us experts in something we knew nothing about until that day. We listened as others told us not to worry, that a cure for this disease was so close. Surely within 5 years your life would be back to “normal”…and ours, too.

We decided that day that we would do everything in our power to make sure you wouldn’t be waiting those 5 long years to feel normal. We wanted your life, which had just two years accounted for at that moment, to be everything we’d dreamed it would be when you were born. There was no way our little girl would ever feel different or excluded because of this disease she did not choose.

But now you are older. This past year has been one of the hardest as you’ve started school and the reality of childhood curiosity is kicking in amongst your peers. Watching your eyes well up after gymnastics while you shared with us your frustration about the questions from others about your insulin pump was heartbreaking. Feeling the grip of your hand as we walked from the school pick up line while you whispered to me that someone told you were weird was one of the hardest things I’ve had to hear as a mom.

Knowing that these won’t be the last times you encounter situations like this is a harsh reality that both daddy and I have to face, no matter how much we’d hoped we could keep you from feeling different. But, sweet girl, I want to give you some advice as you move on in the next five years of your life with T1D. We may not be able to shelter you from the storm, but we can certainly teach you how to dance in the rain and so…

When they laugh…
Remember that you are stronger and braver than most kids will ever have to be in their lives. Never let their laughter make you turn away or hang your head. Stand tall and look them in the eye. Never be ashamed to wear the devices that keep you alive. Let the beating of your heart be so much louder than the laughter in their voices.

When they stare…
Remember that people are curious. We stare at things long enough to bring them into focus. If someone is staring at you it means that they are trying to “bring you into focus”…to see more clearly what these devices are that you are using and how they are helping you. Don’t be embarrassed by the curiosity of others.

When they point…
People point to direct others to what they might be looking at or focusing on. This means that if someone is pointing at you, they have chosen to share your being with others. What a fantastic opportunity! So many people and things go unnoticed…what a wonderful blessing that your existence (and challenges) can be brought to the attention of others who might never even notice. Don’t hide or be ashamed. Be proud that you are helping others learn something new.

When they ask questions…
Listen, then respond. If the questions make you uncomfortable, remember that people can’t learn unless they have answers. Choose to be proactive (if you are comfortable) and tell them how your disease affects your daily life. Don’t view their questions as accusations. Use your answers as tools to dispel myths.

When they whisper…
Listen…but not too much. People often whisper because they don’t want others to hear something that they know might be hurtful or wrong. They also whisper out of fear that what they’re saying might not be true. Let them whisper as much as they’d like and turn your attention to those who are willing to shout truths from the mountain tops.

When they just don’t understand…
There will be plenty of times that you will find yourself trying to convince others that you did not do anything to cause this disease and that you won’t be cured by eating cinnamon or okra. Remember that the definition of “understand” is “to know how something works or happens.” Try your best to help others understand the pieces of your disease that can be explained in easy terms. Don’t give up no matter how frustrated you may get. Believe that your efforts are not wasted.

When they judge you…
A judgement is an opinion that is formed after an evaluation of some sort. Forming opinions is human nature. Remember that you are strong, you are beautiful and you are braver than most people in this world. If someone’s judgement of you makes you question any of these things about yourself, think of this quote and follow it: Be as you wish to seem. Our hope is that the person you wish to seem is exactly who you are because you are loved by more people than you will ever know.

When they say you can’t do something…
Prove them wrong. Nothing can stand in the way of yourself other than you. Believe you are so much more than the highs and lows and have the confidence to challenge yourself every day. Your will and desire to live life above the obstacles that have been placed in front of you will be the only thing you need to show others you are not defined by this disease.

Cheers to Changing the World, Isa,

Mama

Tonsils, Tubes and T1D

Last week, Isa spent a night in the hospital after what is normally a routine surgery — tubes, tonsils & adenoids removed. Isa’s surgery went well and her recovery was very quick; in fact, it was much quicker than we expected. This was not her first surgery, but it’s always a bit unnerving when your child is given anesthesia — especially if that child has type 1 diabetes.

In addition to an enormous amount of love and support (thank you!), we received a lot of questions from people asking what to expect when their type 1 child has a similar procedure. So, here are our thoughts and advice based on our experience…

First, we had a pre-op appointment with Isa’s endocrinologist and pediatrician a few weeks before the surgery. The pre-op appointment is likely to happen automatically but, if it’s not required, you might want to consider scheduling one to limit surprises on the big day. This was a great opportunity to ask questions and also document some of our requests.

For example, we wanted her to keep her OmniPod insulin pump on during surgery. During her last surgery we discovered that some surgeons may want to take your child’s pump off. It’s important that you voice your opinions on whether or not your child keeps their pump on and be prepared to help figure out the plan for pump management during the surgery if they’ll keep it on. Same thing goes for those wearing a continuous glucose monitor like a Dexcom.

The morning of the surgery everything happens pretty quickly after getting checked in. Therefore, it can be a little overwhelming and hard to remember all of your questions. So, we’d suggest preparing some questions in advance. Here are some questions and things to consider:

  • Push for a morning check in and surgery time since your child will have to fast. Best to fast overnight and in the morning rather than all day long. Tip: Isa wasn’t permitted to eat or drink after midnight the night before her surgery but they did say clear liquids, including apple juice, were allowed. This was good to know in case she had any lows during the fasting period.
  • Confirm whether or not your child will stay overnight following the surgery.
  • Confirm fasting plan prior to surgery. What happens if your child goes low overnight or in the morning before surgery? How can you treat the low? Will a liquid like apple juice be ok (see above)?
  • What will happen to the pump during surgery, if your child wears one? Is there someone who you will need to “train” on the pump prior to surgery? (Our surgical team did not do anything with Isa’s pump during surgery. They let her basal run and just monitored her blood sugar with her Dexcom and manual BG testing).
  • How will they monitor blood sugar during surgery? If your child has a CGM, will someone be watching the CGM or will they just do periodic checks? (The anesthesiologist took Isa’s iPhone that she uses for her Dexcom into the surgery and monitored it throughout.)
  • What happens if your child goes low or high during surgery? (Generally this is the responsibility of the anesthesiologist and they will be on top of it…but still helpful for you to know the plan.)
  • How long do they expect the surgery to last? (Isa’s lasted one hour but there is no standard time frame.)
  • What kinds of food should your child eat or not eat during recovery? For how long after surgery? (We discovered this really depends on how your child is doing post-surgery. Isa was ready for buttered noodles the night of her surgery! Some kiddos take a bit longer to heal and may be subsisting on popsicles and Go Go Squeez packets for a week.)
  • Bring something that is important and soothing to your child (favorite blanket, stuff animal, etc). This will be helpful for them before and after surgery and ensure they are as comfortable as possible.
  • Our hospital has Child Life Specialists who do a great job of explaining what will happen during surgery to the child. If your hospital has a similar role you should ask to have them visit your child before surgery (which may already be part of the plan).
  • For you: wear something warm. Hospitals are always cold, in our experience. Also, bring some things to keep you busy — you’ll be waiting around quite a bit before, during and after surgery.

While type 1 makes any procedure or surgery quite a bit more stressful (mostly for parents!), know that your child will be just fine. Trust that the medical team knows exactly what they’re doing and will take great care of your child. Remember that kids are resilient and T1D kids even more so.
-Greg

 

 

“And me, mommy?”

“Can you PLEASE just stop asking me things? Can’t you see I’m changing Isa’s pod? You’re making me lose my concentration!”

“Just wait! I’ll get you your drink after I check Isa.”

“Why does Isa get a juice? Because she’s low, that’s why. Just have one already.”

“Ok, you just made me lose count. Can you please just wait until I ad d these carbs up before talking to me?”

Wow. Just writing those phrases stings. Reading them out loud sends a little shot of pain right into my heart. Even worse is having to admit that these are the norm in our house. These are staples in the communication flow I have with my kids.

But not all of my kids.

I remember one time a few years ago when I had decided to do “special days” with each one of our kiddos. They were in preschool and I surprised them one by one at school and said “TODAY is YOUR special day with mommy! Just you and me!”

They were so excited. I wish I could have kept bottles of those giggles and smiles of joy.

I remember sitting in Pizza Hut with Max, his little four-year-old hands barely able to hold a whole slice. He was going through his firefighter stage, even adamantly refusing to take off his firefighter costume before heading to a doctor’s appointment one day. I just knew he would be over-the-moon excited about where our special day would take us.

As we pulled into the station, I could barely contain the surprise.

“Do you know where we are, buddy?”

His smile was huge.

And then I heard it.

I pulled my phone from my bag, a ball forming in my stomach before even seeing that familiar number on the caller ID. Why today? Why right now?

Isa’s insulin pump had failed and was alarming. The school needed me to come in and change her pump site.

I looked at my little boy’s face as he impatiently pulled at the child-locked-secured car door handle, ready to burst from the thought of meeting real firemen and seeing actual trucks up close.

In that moment I made a decision. A decision I’m sure that many reading this might view as irresponsible.

I turned off the car and we went into the fire station.

Max went on every single truck. The firemen picked him up and let him ring the bells and honk the horns. He wanted to take pictures standing on the front of the trucks and with each crew member. They happily obliged his 4-year-old wishes. They gave him a cheap plastic firefighter helmet to take home and a gold “Junior Fireman” badge.

He was in heaven. My little boy had his “special day” with mommy and it was perfect.

But the happiness in my heart by seeing the smile on his face was very quickly replaced by guilt as I glanced at the clock on my dashboard, my foot heavy on the gas pedal, the pressure of panic supplying the force.

Twenty-five minutes. We had been in the fire station for twenty-five minutes. Isa had been without her pump for 30 minutes by now and it would be another 15 before we got to the school, maybe 20. As we drove along all of the joy I had felt watching Max run back and forth through the fire station and hearing his high-pitched toddler laugh had disappeared. The devil perched on my shoulder telling me it was fine. Taking one hour away from diabetes was no big deal. Why should the other kids be constantly placed in a holding pattern for my attention? Didn’t they deserve to have the it be about them for once?

Or was that the angel saying that?

See, that’s the real issue here. We have to decide which decisions are good and which are bad. Of course there are times where medical need should trump someone asking for a cup of milk. But what about the times when our frustration with type 1 is passed on to our other kids without warrant? Will Isa, and T1D, always be the center of our attention?

A few weeks ago I was scrolling through Instagram, Mia snuggled up next to me on the couch. She quickly spotted a photo of Isa that we’d shared on her Inspired by Isabella account. She asked to see more. As I scrolled down I knew what was coming.

“And me, mommy? Are there any of me?”

I scrolled some more. Isa testing for her belt at taekwondo. Isa ice skating. Isa climbing a rock wall. Photo after photo documenting her sister facing T1D head on, not letting anything stop her.

“And me, mommy?”

How do you explain to a kindergartener…actually two of them…that their sister’s life has challenges that they will (hopefully) never know? That each day of their sister’s life is full of unknowns…unknowns that can be life threatening? Unknowns that rely on decisions that you, as a parent, must make 24/7. That their sister’s life is dependent on you in a way much different than it is for them.

How do you let your children know that no matter how much time and attention you MUST devote to their sibling that they matter just as much? How do you relay this when your actions tell them something much different?

You just do. You just have to. WE have to. We have to make sure all of our kids know that they matter. That they have their own special place in our world and that they aren’t understudies to their sister because she has this disease. We have to make sure that they understand the immediacy of certain aspects of Isa’s care and try not to take our frustrations with managing this disease out on them. We have to work hard to ensure that they don’t become filled with resentment and, as they grow older, we fear this is only a matter of time.

But for now these kiddos are the best of friends. We know that Max and Mia wouldn’t change Isa for the world and that T1D is just a part of who she is. They are truly the best siblings a girl could ask for and their support and love for her makes my heart swell with pride. From carrying her kit when we are going out somewhere to getting her a juice box when she is low, these three are a team. Each playing their own special part in our family – none more significant than another. Parts that without one another would just not be the same. This is something we need each of them to know.

Of course, it’s much easier to write this list of things we should be doing than to actually follow them. One low blood sugar notification from the Dexcom and our frustration grows and impatience builds. One call from the school nurse asking us to come in to change a failed pump site and we are back at square one.

But we have to try. We just have to.

“And me, mommy?”

Yes. A million times, yes.

Cheers to Changing the World,
Kristina

Finding Isa

10450326_649133881840770_2014214347673164830_oMarlin: Now, what’s the one thing we have to remember about the ocean?
Nemo: It’s not safe.
Marlin: That’s my boy.

Almost four years ago I began perfecting my type 1 diabetes elevator pitch. For four years I’ve been trying to figure out the best way to explain to others what our daughter’s incurable autoimmune disease is…and what it is not. For four years I’ve searched for just that right moment – usually when I see eyes sizing up the medical devices on Isa’s tiny toddler frame – to get out the perfect combo of medical terminology and “but she’s just like other kids…ok, well, not really…but she is”! I’ve spent nearly four years worrying that no matter how perfect my pitch – and how “normal” we try to make Isa’s life – that every new acquaintance will view her as anything but that.

And I become Marlin.

We moved to a new city this summer. The neighborhood kids greeted us the first night and the joy on the faces of our trio was priceless. They had their new people and all worries of change flew out the window. Except for mine.

That week a knock at our door and an invitation for the kids to come over to play ended with Max waving as he skipped down the street, and Isa in tears asking “Why can’t I go???”

Because I had become Marlin.

I looked at that tear-streaked face and I couldn’t bring myself to say it. I couldn’t bring myself to tell her that we couldn’t send her and her bag of medical devices and supplies to our unsuspecting new neighbor’s house. I couldn’t tell her that maybe they wouldn’t be ok with the responsibility of having her under their watch. I wasn’t able to share with her my fear that one of the kids might make fun of her and how I wasn’t ready to handle that. I couldn’t say that what was a kind gesture from a new neighbor had filled me with guilt, anger and sadness.

I was Marlin. The ocean isn’t safe and I wanted to protect her.

A few days later the neighbor kids were back with another invitation to play. The tears began before we even opened the door as Isa looked at me with a face that made it clear she knew. She knew why she’d be staying home again. I didn’t need to tell her. She looked at me and said in a quiet voice “mom, please?” At that moment my hatred for this disease was more than I could ever remember. My eyes welled up and I looked at Greg and said “I can’t.”

He opened the door and as I stood out of sight in the kitchen, hiding my wet eyes, I could hear our neighbor say that his kids had told him that Isa had type 1 diabetes. He told Greg that she was welcome to come over and play if we showed him what he needed to know. And that was it.

I had been wrong.

I looked out the window at Isa as she sped off on her bicycle to the neighbor’s house – her purple T1D supply bag slung over her little frame – and I knew she would be ok. I realized in that moment that the ocean doesn’t have to be unsafe. We don’t have to assume that everyone will look at our little girl as a challenge or an inconvenience. We always say that her disease doesn’t define her so why do we assume others will only see type 1 diabetes when they look at her?

Someday Isa’s ocean will be much more vast and its depths, unknown. I want her to feel safe and the only way that will happen is if we let her know that there are good fish out there to help her. Lots of them.

Why We Celebrate “Diaversaries”

This weekend we took a short family trip to celebrate Isa’s “Diaversary,” the anniversary of the day she was diagnosed with type 1 diabetes.

13701178_10210091315825269_3221694545191072671_oSeveral weeks ago, as Kristina and I talked about how we would celebrate this year, it dawned on me that people probably wonder why we celebrate the day Isa was diagnosed with a disease that could kill her and threatens to do so every day.

What kind of crazy people are we???

No, we don’t celebrate this day because we’re happy that Isa was diagnosed with type 1 diabetes. In fact, we wish we had never heard of T1D and certainly wish that Isa didn’t have to live with it every day of her life.

So, why do we celebrate?

Four years ago today, we were thrown into the biggest, darkest storm of our lives. We really didn’t know what strength and bravery were until the moment the doctor confirmed that our daughter had type 1 diabetes, a life-threanening autoimmune disease that would be with her the rest of her life. Our lives were forever changed.

There’s a familiar quote that captures how we approached this new challenge:

“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

While we definitely wanted that storm to just pass us by, we accepted our new reality and committed to raising awareness and funds for a cure for Isa and all those living with type 1 diabetes.

We committed to learning to dance in the rain.

And we haven’t stopped dancing over the past four years since Isa’s diagnosis.

So, today we celebrate Isa’s strength. We celebrate her bravery. We celebrate her LIFE.

Happy 4th Diaversary, baby girl! I’ve learned so much from watching you over the past four years. You’re my brave little superhero and I’m so proud to be your daddy.

 

~Greg

A D-Dad’s job is never done: Dexcom FDA Panel Meeting

UPDATE: Great news! Late this afternoon, the FDA panel voted FOR changing Dexcom’s label to indicate that it can be used for making treatment decisions. Still has to be formally approved by the FDA, but this decision has a lot of positive implications for those living with type 1 diabetes!

I had the honor of attending today’s landmark FDA panel meeting to decide if Dexcom’s CGM can be used to make treatment decisions. I was there to provide a parent’s perspective by sharing Isabella’s story with the panel. I wanted to share my comments with all of you, as well.

The FDA will vote in a matter of hours and, I don’t know about you, but I’m waiting on the edge of my seat. This decision is a big deal; like a really big deal…one that has many implications for those living with type 1 diabetes. Stay tuned!

Thanks to the awesome peeps at DiaTribe, the link to the full video can be found here, which includes me getting choked up at the end of my comments! Feel free to watch the whole thing or at least start at ~15 minutes to see the awesome 10-year-old who spoke before me!

-Greg


Good afternoon and thank you for the opportunity to speak today.IMG_0862

My name is Greg Dooley. My 5 year-old-daughter, Isabella, has type 1 diabetes and uses a Dexcom G5 CGM.

Before I get started, I’d like to disclose that Dexcom will be reimbursing my travel costs to attend this meeting.

Isabella was diagnosed with type 1 nearly four years ago…just two weeks before her 2nd birthday.

After four days in the hospital, we were sent home with a prescribed plan consisting of 4 insulin injections and 8-10 fingerpricks per day. We embraced our new reality and quickly became experts in managing type 1 diabetes in a small child.

In July 2014, Isabella began a Dexcom trial. This amazing technology has been a game changer for us and has significantly improved our ability to care for our daughter.

I’ll never forget that first night with Dexcom…

I was supposed wake up at 3am to check Isabella’s blood sugar using her meter, which had become my normal routine.

Unfortunately, I slept through my iPhone alarm.

Thankfully, the sound of a Dexcom alert, which was intentionally designed to be extremely loud and annoying, woke me up — alerting me to a severe low, which I was able to correct by giving her some glucose gel…..

I’m quite confident that Dexcom saved Isabella’s life that night.

Needless to say, we loved our initial experience with Dexcom and never turned back.IMG_1478

The real-time data and trends provided by Dexcom are extremely powerful. We are now able to see a blood glucose reading every 5 minutes compared to once every 2-3 hours.

To put that into perspective: that’s 288 readings per day with trend indicators….compared to only 8-10 snapshots using a glucose meter, each of which required that we prick Isabella’s finger with a lancing device. Prior to Dexcom she already had more than 7,000 finger pricks in only two years since diagnosis.

As our comfort level and confidence in Dexcom’s accuracy increased, we began using it to avoid dangerously high or low blood sugars….without confirming with a finger stick first. This method of treatment was supported and encouraged by Isabella’s endocrinologist.

Dexcom has become a very critical tool for my family. We use Dexcom to make treatment decisions every single day… despite the fact that the FDA currently considers this to be an “off-label” use.

For us, this “off label” use has — without a doubt — saved Isabella’s life countless times and has enabled us to more effectively manage her disease.

I’m hopeful that an approval by the FDA will ultimately put this very powerful tool in the hands of a lot more people and enable Dexcom to properly train patients and caregivers on how to effectively use the G5 to make better treatment decisions.

Thank you for your time.

Trial, Error…and Flonase

We just returned from our first family road trip which included our 4th Friends for Life, an amazing conference for families impacted by type 1 diabetes. We laughed, we cried, we ate way too many french fries (#friesfordays). We’re reflecting on our trip and can’t wait to share some of our thoughts with you very soon. In the meantime, here is a post I’ve been meaning to write since February but life got in the way…

———

It all started about eight months ago. We noticed that Isa’s skin looked a little bit red under the adhesive tape which holds her Dexcom continuous glucose monitor (CGM) sensor in place. We removed the sensor and saw that her skin was actually extremely red and irritated.

Out of nowhere, Isa had developed a severe skin allergy to the adhesive tape on her Dexcom, the medical device that had been attached to her body for the past two years. Dexcom has truly been a game changer for us and has — without a doubt — helped us to better manage Isa’s type 1 diabetes on a daily basis.

Not knowing what caused the irritation, we decided to try a different location. Same story…after a few days we noticed a little redness and removed the sensor to find her skin extremely irritated. At this point, her lower back now looked as if it had been burned by chemicals.

Adhesive allergy

Within a couple days we noticed little red pimples all over Isa’s backside and thighs, which prompted another trip to the pediatrician. Those bumps turned out to be MRSA (a type of staph infection). Thankfully, we caught it early enough that it was successfully treated with antibiotics.

Her body was clearly rejecting the amazing device that had literally saved her life on countless occasions over the past two years.

Over the course of the next several months we tried changing up our normal Dexcom prep method. We went through a very frustrating process of trial and error to see if we could figure out how to stop the skin irritation — we eliminated some steps, changed the order of steps, tried different barrier wipes, different barrier tapes, none of the above, some of the above, all of the above….you get the point — but, unfortunately, NOTHING seemed to be working. We also took several breaks from Dexcom, primarily to give Isa’s skin time to heal (which seemed to take FOR-EV-ER!).

I felt so bad every time I had to change her Dexcom. Her skin was so extremely red and irritated and here we were sticking the sensor right back on to a different spot on her little body, which would most likely cause another bright red rash.

It was so frustrating, especially knowing that we were causing it. I kept wondering if we should stop trying to find a solution and just give her body a rest.

Were we being too selfish? After all, Isa didn’t really care if she wore her Dexcom or not…WE wanted her to wear it so WE could monitor her blood sugar 24/7 and not have to go back to setting multiple alarms for late night checks or rely solely on finger pricks every few hours. Although Isabella didn’t really complain much about the skin irritation, it was truly heartbreaking to see her bright red, burned skin each time we removed that Dexcom sensor.

We didn’t know it at the time, but the sensor that we put on Isa’s lower back at the beginning of February would be the one that caused our little girl to end up in the hospital for the third time since she was diagnosed with type 1 diabetes…

“Daddy, it itches,” she said.

I took a closer look and noticed a little bit of redness beneath the adhesive tape. I removed the Dexcom sensor and saw more redness and irritation, as I had seen countless times over the past few months. However, this time I also noticed a small, somewhat hard bump just under the insertion site. Over the course of the next few days that small bump began to grow.

Isa started complaining of pain in her lower back. I looked again and it was clearly infected. Not only was she in pain but she now had a fever and very high blood sugar levels, which just would not come down. Infections are not good for anyone, but for those living with type 1 diabetes infections can wreak havoc and be very dangerous — even deadly — if not treated quickly.

With Kristina out of town for work, I dropped Mia and Max off at my sister’s house and raced Isa to the ER. The large and growing lump on Isa’s back was an abscess, the result of a very bad infection caused by bacteria (I’ll spare you the pictures!), and would likely have to be surgically drained to avoid more serious complications. At around 11pm, after six hours in the ER, the nurse confirmed that Isa would be transported by ambulance to the Cleveland Clinic Main Campus where she would be admitted and operated on the next day.

While waiting for the ambulance, the Child Life Specialist (who was Isa’s new BFF) asked me if it would be alright if she gave Isa something for being so brave. “Of course,” I said. She came back with a brand new American Girl Doll named “Isabelle” and handed her to Isa. Isa’s eyes lit up and a smile came across her beautiful, but very tired, little face.

“I’m gonna call her Isa,” she said.

Smiling

A couple hours later when both Isa and her new little friend were finally dozing off to sleep, the ambulance arrived. Since Isa would be transported by ambulance I was considering following behind the ambulance in my car so that Isa and I wouldn’t be stranded at the hospital with no easy way to get home….but I really didn’t want to leave my little girl in the ambulance by herself! I briefly explained my dilemma to my 5-year-old daughter and she said without hesitation, “drive your car behind us, Daddy…I’ll be ok.”

I was once again amazed and inspired by her incredible strength and bravery as I fought back the tears that were now welling up in my eyes. Late the next morning, my tears were back again as I held Isa’s tiny hand in the operating room and watched her peacefully doze off as the anesthesia worked its magic.

Thankfully — and although it seemed like it took forever — the surgery was quick and successful.

While I watched her sleep back in her hospital room, I kept thinking this was my fault. I put that Dexcom sensor on her little body, knowing that it was basically burning her skin. If only I had just waited longer or just not put the sensor back on to begin with. My little girl would have been home playing with her brother and sister at that moment, rather than recovering in a hospital room.

I stepped into the hallway to call Kristina and give her an update. I knew that it had been tearing her apart that she was away while her little girl was sitting in a hospital room. I assured her that Isa was doing fine and would be heading home soon.

As I was heading back into the room, I looked down the hallway and noticed Isa’s endocrinologist walking towards me. She had come to check on Isa and also asked how I was doing. I was still having some trouble keeping it together but managed to tell her that I felt so bad every time I saw her irritated skin over the past few months and even worse now that she was in the hospital.

“I’m so sorry she’s here and I understand how you must feel,” she said. “But, remember that Isa’s Dexcom helps you and Kristina take much better care of her.”

She was right. Dexcom and its powerful, real-time data enabled us to be much better caretakers for our daughter. While we may have had some selfish motivations (like just a little bit more sleep each night), we were really trying to find a solution for her. Isa may not fully realize or understand it yet, but as parents we do everything in our power to take the absolute best care of her and ensure she’s as healthy as she can be. Dexcom had become a very critical tool in our diabetes management toolkit; one that we can’t imagine living without.

Isa and I left the hospital later that day and headed back home. We decided to take several weeks off Dexcom as our little girl recovered from surgery and her skin healed once again. This also gave me some more time to research possible solutions; so I went into problem solving mode.

Thankfully, after some more trial and error, we’ve found a solution that works for us. And, believe it or not, it involves Flonase (yes, THAT Flonase).

-Greg

Keep Calm and Carry Dexcom

Note: I’m not posting our specific solution as it may not work for everyone. If you’re interested in hearing about our prep process, please send me a message and I’ll share more.

Guest Post: A New Understanding

12038762_10103431303606984_2851491304265991360_o

Isabella and Caroline  (Photo Credit: Katherine Trimble)

We are excited to have a special guest blogger today! Valerie Ott is a Lifestyle Writer/Editor and  Blogger for East Hudson Living Magazine, Home Made Modern, and About.com. Read on to find out why she decided to write something for us!


Hi! My name is Valerie, and I am honored to be guest-blogging for the Dooley family today. Although I haven’t met the Dooleys personally, I recently wrote an article about friends of theirs—the Rusinoffs—who also have a child with type 1 diabetes. The reason I felt compelled to guest blog for Inspired by Isabella is because I wanted to share my first impression of the disease as someone who is an outsider of the T1D community.

You see, I went into the assignment of writing about Caroline Rusinoff much like any other. I prepared some questions in advance, grabbed my notepad and favorite green pen, and headed to Starbucks to meet Ted Rusinoff, Caroline’s dad. I did not expect to cry during the interview.

Here’s what I knew about T1D before the interview: exactly nothing. Well, I did know that it is a disease that affects children and I had the vague notion that it is not brought on by poor lifestyle choices or unhealthy eating habits. But other than that, I was clueless.

After talking with Ted—who is very well-versed and educated about the disease, of course–I still didn’t have a deep understanding of the physiology of all of it, and thankfully, I don’t have a personal need to know. But as someone who has two daughters, I began to put myself in Ted’s place as he talked, and a vivid picture of what it’s like to be a family that lives with T1D began to form in my mind.

Ted placed his phone on the table between my latte and his coffee and showed me the app that reads data from a continuous blood glucose monitor Caroline wears on her body. Inwardly, I took a breath as I watched the number go up and down. You see, I’m a bit of a control-freak. I instantly imagined how hard it would be to take my eyes off something that was monitoring something as important as my child’s very well-being. “How does he concentrate on anything else?” I wondered, and I marveled at the strength it must take to not become the world’s worst helicopter parent.

When Ted described what things affect blood glucose levels—food, stress, exercise, heat, etc.—I started to imagine my children’s typical days at school. My oldest, for example, was being timed for her mile run in gym class that day; she had a math test, and she had informed me that morning that it was “snack day” at lunch, where kids get to pick something like a cookie or an ice cream bar from the lunch line. She had choir practice and gymnastics that evening, which meant she wouldn’t be getting to bed on time, and we’d need to squeeze homework in sometime…I began to feel the tears well up, and I rudely interrupted Ted. “Wait a minute. How do you deal with the worry?”

Ted’s response was candid. He said, “If you were to meet us on the street, we’d smile and say everything is great…but the everyday struggle with Type 1 Diabetes is real.” And I got it. I really got it. I could imagine how hard it would be to send my child off to school, practice, or a friend’s house, knowing that he or she would likely need to make adjustments and choices on their own. And I imagined how grateful for every day I would feel.

Some mornings I still think about our conversation as I go into our kids’ rooms and wake them up for school. I used to take it for granted that they’d sleep soundly through the night–barring the occasional bad dream or thunderstorm–and that they’d wake up just the same as they were when we put them to bed. I think differently about it now.

Thanks to the Rusinoffs and the Dooleys—two families who are living with T1D and doing their part to educate others about the disease—I have a new understanding and an appreciation for the cause. Just the other day, in fact, a cashier asked me if I’d like to make a donation to a juvenile diabetes fundraiser. Before, I might’ve answered “Not today.” But now that I have that colorful picture in my head of what day-to-day life looks like for parents, not to mention kids living with T1D, I gave a different answer.

-Valerie

Just Like Her

american girl dollAs our kids have gotten older, the joy of Christmas has been amplified. The excitement leading up to Christmas morning takes me back to 5-year-old Kristina hoping Santa saw my wish list consisting of all-things Barbie.

Imagine my joy this year when I stumbled upon a website that sells 3D printed insulin pumps and continuous glucose monitors for dolls. I just knew Isabella would LOVE them. In fact, I was pretty sure they’d be some of her favorite Christmas gifts. I promptly filled my online shopping cart with all of the supplies that would soon make her Barbie “just like her”!

On Christmas Eve I strategically placed the teeny tiny wrapped gadgets in her stocking…knowing we’d be saving one of the best gifts for last. I wondered if I should have brought one of her Barbies up from the basement since I was certain she’d want to do a “site change” as soon as she opened them up. I didn’t want to delay Barbie’s pesky two hour calibration window for her new glucose monitor any more than necessary!

Once the wrapping paper dust had settled Christmas morning, the old “Oh, look! He filled your stockings, too!” set off a flurry of renewed excitement. One by one the kids dumped their loot onto the floor. As they pushed aside their reindeer Pez dispensers and packs of gum, they began unwrapping their final bursts of holiday joy.

As Isabella ripped the paper off the miniature Dexcom, I knew I had made a mistake. The expression on her face…I’m still not really sure what it was. Disappointment? Curiosity? Confusion? What I did know was that it wasn’t the one I had envisioned when I clicked “place order now”. It wasn’t excitement and it certainly wasn’t joy. In fact, for a brief second, it almost felt like sadness.

I looked at Greg with a face signaling that this wasn’t the way Christmas morning was supposed to end. I watched as Isabella looked between her toy medical devices and her sister’s miniature Lite Brite and her brother’s Storm Trooper keychain. Her “gift” didn’t feel so much like a gift, after all. At that moment it was me who was filled with sadness…and a little bit of shame.

I had, once again, made it “about diabetes”. I had assumed that Isabella WANTED her doll to be just like her. But she didn’t. Actually, I don’t know that she’d ever even considered that her doll COULD have diabetes. She’s never once asked why her dolls don’t have T1D and she’s never said she wished they did.

This week it was announced that the American Girl empire has developed a type 1 diabetes accessory kit. Had I heard this news just one week ago I would have been first in line to throw down the $24 to make sure Isabella’s doll would have one. In fact, I would have driven two hours to the closest store and purchased extras for all of Isabella’s T1D BFFs, just knowing they would be a hit!

But not today.

Today I will let Isabella make that decision. Today I will not assume that in order for her to feel accepted she must be surrounded with dolls “just like her”. Today, instead of making assumptions about what will make Isabella happy, I will ask her.

Thank you to American Girl for giving our daughters the choice to have their dolls be just like them in so many ways. I love that the brand is embracing the many differences of young girls today and feel fortunate that, whatever Isabella chooses, her doll can be just her…

Or not.

Cheers to Changing the World,
Kristina

Losing Sight

filling-my-cup-title-800x1200I am stubborn. Like, really REALLY stubborn. Probably one of my worst traits is that I think I’m invincible. I take pride in being the working mom who does it all and rarely suffers a Pinterest fail.

And I like it like that. No, I LOVE it like that. I thrive off of accolades and the “how DO you have the time and energy to do that?!?” queries. I am in a constant battle of one-upsmanship. Not with other moms, though…with myself.

Those teacher gifts? They’ll be much more creative next time…I just need to get a glue gun.

That Elf? Oh, I know the kids will be even more excited when they see what I have planned for TOMORROW night!

Our next family trip? Wouldn’t be complete without surprises hidden in the kid’s special airplane bags (yes, SPECIAL AIRPLANE BAGS!)!

A few weeks ago I had dinner with one of my very best friends who re-hashed the horrors of her ill-fated assignment as “room mom” for one of her kid’s school parties. “Never again” she said as she recounted the judgy judgerton eyes of the other expert room mom moms when they realized my friend hadn’t brought forks.

“No FORKS! What will they eat their grapes with?!?”

After our laughter died down, all I could think was that I am THAT mom…without the judgy judgerton eyes, of course.

“We need a volunteer to make reindeer crafts at the party” = That’s ME!
“Is there anyone who can host the next family picnic?” = ME ME ME!
“Anyone interested in chairing this committee?” = OF COURSE! IT’S ME!!!

Which brings me to my New Years Resolution for 2016…

If you thought I was going to say “I’m hanging up my cape!”, you don’t know me well enough. Remember that part about me being stubborn? Well, no flipping of the calendar will change that. But here’s what has to happen this year, and what I am truly going to make an effort to do.

I’m going to take better care of me.

Yeah, yeah, I know that this is the standard “Resolution Heard ‘Round the World” each year. But for me, this year is different…it has to be.

Two years ago while attending the Children with Diabetes Friends for Life Conference I decided to take advantage of the free retinal screenings that are offered. I’ve had 20/20 vision my entire life and, being the perfectionist that I am, I wanted to keep my perfect record going.

After a series of tests at a handful of fancy machines I was told by one of the staffers that Dr. Ben would need to speak with me before I left (cue ominous music). I had no idea who “Dr. Ben” was or why he needed to chat…I just assumed he would be coming to give me a congratulatory high five for having rocked the exams.

I was wrong.

After shaking my hand and introducing himself, Dr. Ben asked me if my husband was also at the conference and if he could come meet us. While most people would have been nervous about why he’d be making this request, my over-confident self thought Dr. Ben just wanted Greg to be there to share in the high fiving.

When Greg arrived Dr. Ben asked us if I had any stress in my life. Hah! Hilarious, right?!? Here we are at a type 1 diabetes conference with 3-year-old triplets. Stress? Nah. Life is easy peasy.

Though his face was full of kindness, it was obvious Dr. Ben was concerned about something. He proceeded to tell us that the detailed scans of my eyes showed the beginnings of retinal detachment and that the cause was most certainly stress. His message was clear: I needed to eliminate some causes of stress in my life or the progression would continue.

I promised Dr. Ben that I would take it easy and that I’d delegate some responsibilities at home to Greg. I told him that I’d try not to succumb to my desire to be super mom, and to not worry if things didn’t turn out just perfect.

I made all of these promises to Dr. Ben, to Greg and to myself…

But I lied.

Fast forward to July 2015. Same conference. Same exams. However, I was confident that the results would be different…and they were.

Dr. Ben shook my hand and asked me if I could call Greg again to meet us. I did so happily knowing he wanted us both to hear how proud he was of the strides we’d made in the past year and that things looked great.

He asked me if I’d taken his advice from the previous year to try and eliminate some stress from my life and if I thought the scans would show improvement. I nodded confidently and told him I thought I’d done a good job of delegating and not trying to do so much. I could tell by the look on his face that the smile on my face and the upbeat tone of my voice wasn’t going to change the truth.

As the doc walked us through the images of my retinal scan, pointing out the quadrants in red indicating the already irreparable damage, I could feel the reality of my choices settling in…

“You will develop tunnel vision and you’ll slowly lose the ability to see…”

Believe it or not this statement wasn’t the one that drove home the severity of the situation. The realization that I would possibly begin losing my vision didn’t do it. It was his next statement that brought the lump into my throat:

“Your daughter could, at some point, need you to administer a life-saving Glucagon injection. What will you do if you can’t see well enough to do that correctly? What if your vision is so impaired that you don’t have the ability to save her life? You can’t take care of your daughter if you don’t first take care of yourself.”

In that moment I realized that most parents, let alone parents of a child with any type of special needs, rarely consider taking care of themselves FIRST…or even second or third. You know that moment before a plane takes off when the flight attendant tells you to put your mask on FIRST, and then help your child? How many of us actually think that way on a day to day basis?

In that moment I realized that to be an awesome mom, wife, entrepreneur and friend you don’t have to do it all. The floor can get mopped tomorrow but your kids won’t always ask you to play Old Maid with them, or to listen to them read a book for the first time.

In that moment I remembered the quote “You can’t pour from an empty cup.” I realized that, though my heart and my pride were full, my cup was nearly empty.

So this year I am making a resolution to take care of myself. I vow to put my mask on first and not worry so much about that load of laundry that’s been in the dryer since last week. I will take time to paint my nails and read People magazine…guilt free. I will be ok with the kids eating PB & J on a weekday.

I am making a commitment to fill up my cup and, when I am room mom for the class party…

I will purposely forget the forks.

Cheers to a Cup-Filling 2016!
Kristina