Happy 2nd Diaversary

Today is a day we celebrate. We recognize what Amelia has gone through and how she has handled it like an absolute CHAMPION. 🏆 Can we just give Amelia some props for dealing with diabetes for 730 days?! She has taken her 5,110 insulin injections like it’s no big deal and has not dwelled on how crappy it is that she’s had to do it. She is our hero! 🙌🏻 Two years down. Happy #DIAVERSARY babe! ✌🏻

Diabetes is Hard

Had a rough diabetes night last night. Blood sugar wasn’t terrible, but her emotions were all over the place. 😭 Amelia was crying over little things all day and when I laid down next to her in bed and asked what was really wrong the floodgates opened. “Why isn’t there a cure?! I hate diabetes, it’s not fair, I want to die.” I don’t think there’s anything that hurts a parent worse than hearing that. 💔 “No one understands, kids at school say I’m LUCKY because I get snacks when I’m low, I hate doing shots, I hate testing, I hate the dexcom!” 😭😭😭 It’s honestly hard to know what to say because I can’t imagine having to do what she does at her age, well at any age. I tell her, “This happened because you CAN handle this, you ARE handling this 💪🏻 you are the most responsible conscientious 9-year-old. We share all about Type 1 so people don’t say things like, ‘You’re lucky,’ to someone with a health issue they don’t know much about.”

I know it’s good to just let her get the feelings out so that’s what I do. It’s a lot for a kid, it’s a lot for the parents, it’s just a lot. Social media helps paint a picture of having it all together, but we definitely don’t. Emotions are sometimes a roller coaster in this house, my anxiety is through the roof to the point of wake-you-up, middle-of-the-night panic attacks and we have to take it day-by-day. Diabetes is a full-time, literally 24/7 job, for the kid AND the parents and to put it bluntly, it sucks. 😡

I don’t say these things to be pitied or to get a pat on the back. I just want to share what’s real and what life with an autoimmune disease is really like to in turn spread awareness and acceptance to those around us. As always, thank you for being our friends and for supporting us always!

My Thoughts about A Future with Hope by Carl Armato

As promised… I want to tell you guys all about the book I just finished reading - “A Future with Hope” by Carl Armato. I went through a plethora of emotions reading it. I started it when Amelia was sick and I was sitting with her on the couch for most of the day, so I started out reading it aloud to her. The first chapter started with a conversation the author had with a diabetic teen. From what I hear, the teen years are trying for kids dealing with Type 1. They don’t want to think about it. They want to give up and they just want to fit in. As I was reading Carl’s words to the teen out loud to Amelia, my voice began to shake and the tears started to flow:

“You’ve got to support your supporters. I’m no hero. The heroes in my life are my parents and the people who supported me. Those are your heroes too. They’re the ones who watch and make sure you’re ok, so they’re the ones to listen to. You need to support your supporters: love them, appreciate them and, above all, listen to them. And do it like your life depends on it.” 

Amelia asked why I was crying. I told her that reading someone else’s experience, when it’s similar to your own, sometimes makes you emotional. Hearing those words struck a chord. As a parent to a Type 1, you just do what you have to do for your child. There’s really no thinking about what it means. It’s like being thrown into the deep end of the pool not knowing how to swim. You figure it out. You don’t do it and expect recognition or appreciation. You just swim because your child’s life depends on it. Honestly, I’m more emotional about it all now than I was a year ago. I haven’t had time to really reflect because I’ve been too busy learning, too busy worrying if what I’m doing is right. The author talks a lot about support. Support is 100% necessary for a successful life with diabetes and it comes from ALL directions – from parents, grandparents, friends, teachers, the school nurse, the bus driver, coaches and the doctors. While I’m thinking of it I want to thank YOU for being a part of our solid web of support.

The book continues on. Carl talks of his life experiences, of his amazing family who supported him, of scary low blood sugar episodes, of the changes in technology and advancements in diabetes management and of the way he’s been treated because of his diabetes. One particular story that stands out was that once his middle school basketball coach found out he was a diabetic he went from a starting star player to a bench warmer. Even though the coach thought he was showing concern for his player, Carl resented the fact that he was missing out because of his disease. He begged his Mom to let him keep his diabetes hidden and she let him make that choice. This experience set the tone for a good portion of his life. He didn’t want his diabetes to hinder his career or change peoples’ opinions of him. He strived to be the best at every single thing he did, just to prove to himself that he could be the best at anything even though he had diabetes. Through all his success he kept it hidden for a long time, until just a few years ago.  

It was eye opening to read the chapter that talked more about how NOT to be toward those with diabetes, from a diabetic’s angle. He encourages others to not always ask about diabetes, to not focus on the disease but instead focus on the person. Never call out a person for what they are eating, after all, you wouldn’t dare say, “Should you really be eating that?” to someone who may happen to be overweight, so why would you say it to anyone at all? True supporters will never see you as a burden.  

At one point reading the book I had a little breakdown. Carl was talking about how people have said some crazy insensitive things to him over the years, sometimes because of their own ignorance. An eye doctor actually told him he should choose a career that didn’t require eyesight because he’d probably end up blind. Who says that, let alone a doctor?!  Just hearing the things that have been said to him over the years was overwhelming. I know Amelia will encounter ignorance and judgment in her life and I just want to take it away from her. I sat there and thought, “Why her? Why did she get this disease? Give it to me instead!” I don’t know why she was chosen, but I have to trust there’s a reason.

I can’t help but imagine all the good that has happened since Carl opened up about his diabetes. He has given inspiring speeches about his experiences and how without diabetes he doesn’t know if he would have been as driven and successful. He has given words of encouragement to others living with the disease that who knows, may have saved a life. He has spread awareness about Type 1 Diabetes and inspired those affected by it. Only GOOD things have come from being transparent about his challenges and triumphs and I’m thankful to have read his story. Click HERE to pick up a copy for yourself.

A Future With Hope by Carl Armato

Last week was a rough one. 😥 Amelia was sick and home from school every day last week. We’re lucky actually.  This is the first time she’s been sick in the year since she was diagnosed.  I now understand the correlation between illness, medication (prednisone) and insanely high blood sugar readings. 😡 Holy moly, insulin upon insulin upon insulin and she was still averaging blood sugars ranging from 250-400+. Those high numbers affect her mood drastically.  She feels exhausted and super irritable.  It’s terrible!  The good news is she’s back in school this week and although her readings are still a little high, the average is coming down.  

I decided this morning I deserved a little coffee and couch time. ☕️ I picked up this book, “A Future with Hope” by Carl Armato. He is the CEO of Novant Health in North Carolina recently shared his story about living with diabetes since he was 18 months old. I’m excited to read it and learn about his life and to hear about life experiences directly from a very successful and driven Type 1 Diabetic. This would be awesome for anyone to read — Type 1’s, Type 1 parents or relatives, friends of Type 1’s or ANYONE who likes to learn and who strives to be empathetic. HERE is a link to the book, go check it out!  I’ll be sure to share my thoughts when I finish it up. 🤓 Here’s to all the #type1parents out there, you’re doing an AMAZING job!!! 🙌🏻  

P.S. Happy National Diabetes Awareness Month! #sponsored

Amelia's First "Diaversary"

It’s been one year. This time last year we were driving to Holmes Regional Medical Center in Melbourne, scared out of our minds, not knowing what “she probably has Type 1 Diabetes” meant for our sweet daughter, or how this would change all of our lives.  With all I know about diabetes now, I feel extremely lucky looking back on this day last year.  I feel lucky that we were paying attention to her and not dismissing her symptoms.  I feel lucky that she wasn’t in DKA (diabetic ketoacidosis), in a coma in the ICU for days, or worse, much worse.

When I start feeling sorry for our family, I tell myself to be grateful, after all, it could ALWAYS be worse.  But to get real and put it bluntly, Type 1 Diabetes sucks.  Amelia will never be able to put a bite of food in her mouth without thinking about how it’s going to make her feel, how many carbs it is, or how much insulin she needs so she doesn’t feel like absolute crap.  She will always have to make sure to eat a few carbs before she goes to sleep so she doesn’t have dangerously low hypoglycemia.  We think about diabetes every single hour of every single day.  It never stops.  I think that’s the hardest part of a chronic disease, right?  It NEVER. STOPS.  There are NO breaks.  It’s exhausting.  And if you DO stop being diligent and aware, you end up in DKA with the potential to leave this earth, or your blood sugar goes so low that your brain is damaged and you never wake up.  It’s literally a life or death situation, every single day.  Is it manageable?  YES, thank GOD.  Just 40 some years ago, personal glucometers, the devices used to test blood sugar with a finger prick of blood, didn’t even exist. People had to test their urine for ketones and basically guess if they were high or low.  We are lucky to live in a time when a diabetes diagnosis is not a death sentence.  

I must brag on our girl though.  Every parent is proud, I know that, but we are exponentially proud of Amelia.  This last year she has adapted to her new normal almost flawlessly.  Have there been hard times?  Yes times a hundred, but she is responsible, conscientious and rarely throws herself a pity party. It doesn’t define her, but diabetes is part of who she is and she isn’t afraid to teach others about the disease. I hope we are teaching her that she can and will lead a long, healthy life because she is fully conscious of her body, what fuels it and how she is affected by food, exercise, stress, sickness and more.  I’ve said it before and I’ll say it again, if anyone is able to deal with this lifelong disease, it’s Amelia.  She is the most special of the special, truly a gift. As cliche as it sounds, everything happens for a reason.  Even if we don’t know what that is, we still have to believe our situation is for the greater good in some way.

One thing I have learned, well, I’ve learned a million things, but one very important aspect of living with diabetes is “support."  Without it, it’s really really hard to thrive with the disease. Support comes from all directions… from parents to siblings to grandparents to friends to teachers to the doctors.  We all, you guys included, are an integral part of a successful journey.  We can’t thank you enough for loving and supporting our family!  Thank you for learning about diabetes as well, because knowing the signs and speaking up could literally save someone’s life one day.

Happy “Diaversary” Amelia!  You’ve totally rocked the last year and I know you’ll continue to be awesome, always!  We are so thankful for you!

To learn a little more about Type 1 Diabetes and the warning signs, please hop over HERE. You could save someone’s life!

About Type 1 Diabetes and the Warning Signs

TYPE 1 DIABETES (T1D) IS AN AUTOIMMUNE DISEASE THAT OCCURS WHEN A PERSON’S PANCREAS STOPS PRODUCING INSULIN, THE HORMONE THAT CONTROLS BLOOD-SUGAR LEVELS.

• There is nothing anyone can do to prevent T1D. Presently, there is no known cure.

• Type 1 diabetes affects children and adults, though people can be diagnosed at any age. With a typically quick onset, T1D must be managed with the use of insulin.

• Type 1 diabetes is a 24/7 disease that requires constant management. People with T1D continuously and carefully balance insulin intake with eating, exercise and other activities. They also measure blood-sugar levels through finger pricks before each meal and at bedtime.

• Only 5% of people with diabetes have Type 1 Diabetes.

• Some 1.25 million Americans are living with T1D, including about 200,000 youth (less than 20 years old) and more than 1 million adults (20 years old and older).

• 40,000 people are diagnosed with T1D each year in the U.S.

• While limiting sugar intake can be a part of a healthy diet, people with T1D can work sugars and sweets into their diets just like a person without T1D. Sometimes sugar is necessary. If a person’s blood-sugar level drops too much, sugar, often in the form of juice or glucose tables, is required to raise it and correct hypoglycemia (low blood sugar).

TYPE 1 DIABETES WARNING SIGNS

Amelia had all of the symptoms listed below.  If you suspect you or your child has diabetes, see your doctor immediately.  Uncontrolled blood sugar can lead to Diabetic Ketoacidosis (DKA), a life threatening condition that can lead to coma and death. Luckily we caught Amelia's T1D early and avoided this scary situation.

• Increased thirst

• Frequent urination

• Bed-wetting in children who previously didn't wet the bed during the night

• Extreme hunger

• Unintended weight loss

• Irritability and other mood changes

• Fatigue and weakness

• Blurred vision

Follow along with our Type 1 Diabetes Journey

Back to School After Type 1 Diagnosis

It's official, my child is not normal. 😂 We left the hospital this morning and she BEGGED to go to school. Literally begged lol. I got to talk to the amazing Nurse Tammy and I definitely feel confident about her care while at school. At first I told myself I’d go to lunch with her every single day until they got the hang of it until I talked to Tammy and realized, “Hey, she’s a nurse, already treats one Type 1 at school and knows way more than I do.” I felt better about her being at school than I did at home ha! The only feeling I can equate it to is when you first come home from the hospital with your first baby. You’re constantly nervous. Am I doing it right? Are they gonna survive my inexperience? And dropping her off at school that day was like the first time you left your baby after you gave birth. It felt weird. This new sense of responsibility for her life was overwhelming to say the least.

Looking through the cards Amelia's classmates and friends made her and they're all so freaking sweet. 😍😭 Every single one of these cards touched our hearts. ❤️ Mrs. Weragoda is an amazing teacher and an amazing human being, that's for sure. 😇 It was also such a fun surprise when she got off the bus today. Thank you to whoever left cute balloons tied to our driveway gate...they put a HUGE smile on Miss Amelia’s face.