Category: Parenting

What It's Like to be a Type 1 Mom

What It’s Like To Be a Type 1 Mom

 What It’s Like To Be a Type 1 Mom

Stacey Rose

I am a 49-year-old type 1 woman who has had diabetes for 39 years. When I was diagnosed at age 10, I was told a cure was five years away. Well, clearly that didn’t happen. So then I was told I probably shouldn’t have kids. Well, I’m a type 1 mom now and I have three kids. My oldest son is 14 and I also have soon-to-be 12-year-old twins (boy/girl). I was all kinds of a high-risk case both times:  at 35 with my first son, I was already a “geriatric” mother and then at 37 with twins not to mention the whole type 1 diabetes thing!

My younger self would never have imagined I would have one kid let alone three! My younger self didn’t want to get married, but I did that too and was married for almost 15 years. Of course, I never imagined I’d be divorced either, but here I am. Life changes like that can certainly throw your diabetes management for a loop.

And where I am now is a really good place, actually. I get along very well with my ex-husband whom I share custody of those three kids with. My mother is very involved with my kids and is there more often than not when I am not with my kids. I have a wonderful boyfriend of three years now and he is the most generous, giving man I have ever met. It’s a complicated life with me in Massachusetts and my ex-husband and my kids in Southern California – I fortunately, have the flexibility to travel back and forth monthly and it works for all of us.

I’m also a runner – another thing my younger self would have laughed at. I started running at age 39. I guess I’m a late bloomer in all aspects of my life! I have a goal to run a full marathon before I turn 50 (so I’m trying to train right now as that’s getting closer as we speak, although I am plagued by injuries lately.) I have run a half marathon before though and have the drive to do more, which is another bit of my being a type 1 mom. Part of my reason for wanting to run a full marathon is big a “F you” to diabetes. That won’t keep me from doing something I really want to do.

My daughter, one of the twins, also has type 1 diabetes. She was diagnosed at age 5, which as you can imagine, was devastating news. I know I can’t be the only type 1 parent who blamed themselves for a child also getting diabetes. I logically know that is not the case, but it’s hard not to feel that way initially.

My daughter has brought me out of my shell in terms of wanting to get involved in the type 1 community. There are so many opportunities to advocate and I’m still fumbling my way around trying to figure out where I belong in that crowd. The fact that there are so many opportunities to serve that community is a good problem to have! I often refer to myself as a “wannabe” advocate, as I just don’t know where I fit in yet. I have done walks and raised money and I try to raise awareness and educate people daily.

Below is a picture I have done with my daughter every November for Diabetes Awareness Month. (It’s not a coincidence that we use that particular finger for the finger sticks, by the way. My daughter thinks that’s funny. You may notice a theme here about my feelings toward this unwelcome guest who refuses to leave.)

What It's Like To Be a Type 1 Mom

I’ve always been a bit of a loner and maybe denied myself the benefits of a support group, but I did find a wonderful group of other type 1 mom ‘s right after giving birth to my first child. We have all remained friends and I really don’t know where I’d be without them as a support system. We’re all over the country and a couple international, but have all gotten together as a group and just one on one throughout the years.

We help each other find doctors, we commiserate with each other on bad days and highs and lows we can’t explain and fears when we go to the eye doctor or suspicious symptoms in our kids. No one knows what you’re feeling or going through better than someone else who goes through those same things and a couple of us also have children with type 1 diabetes. It’s heartbreaking for all of us to hear this news. This group of ladies has been a lifeline for me.

The challenges of having type 1 and managing my own health is compounded by my daughter having it too. She’s growing up now – almost 12 – and is branching out into her own independence. It’s really hard for me to let go of those reins. I’m sure my own mom can relate to that. It’s always hard letting go of your kids as they grow, but even more difficult when that child has a chronic disease.

When I was a kid, I often “joke” that it was one shot in the morning and hope for the best. That’s not really a joke though. It’s pretty much the way it was. I didn’t have a glucometer, as they weren’t really around back then. When I finally did get one, you couldn’t take it with you. It had to remain in its spot on the counter because if you moved it an inch you had to recalibrate the darn thing and you needed a degree in chemistry to do that. I’m exaggerating, of course, but it sometimes felt that way.

All the new technology that I have like my insulin pump and CGM are wonderful tools! They can be very overwhelming though and I’m scared as hell that my daughter will forget to change her pump or not bolus or not pay attention to her blood sugars when she goes off to camp or out for the day without her dad, my mom, or me.

At this point, I don’t remember not having diabetes. My daughter has now had type 1 for six years and I’m afraid she’s getting to, if not already there, that stage where you forget what it’s like to not have diabetes and that breaks my heart. My oldest son, who is 14 now and does not have diabetes, did a Christmas wish picture for school when he was in 2nd grade. His first wish was for everyone in his family to not have diabetes – another heartbreaking moment. I don’t thinks my kids ever thought of diabetes as out of the ordinary though, as they have always been around it.

My other two children, both boys and one a twin to my daughter with type 1, are enrolled in the TrialNet studies, or I should say, they get tested once a year for antibodies and have been negative so far. The waiting for results period is a scary time though. I’m sure all moms of diabetics, and maybe even more so type 1 mom ‘s, always worry about that. I do at least.

So, what is it like being a type 1 mom?

Well, it has never stopped me from doing things – having kids being one of those things. I want to show my daughter that she can do anything she has a passion for. Yeah, we need to plan in advance for everything. I wonder if I was always that way or getting diabetes at a young age made me a planner.

My mom will tell you I was always organized, so I guess it works in my favor in managing life with Type 1 diabetes. Management isn’t always easy, but I have done it for so long that I just do it. I count carbs in my head. I always have glucose tabs on me wherever I go, my phone is always charged for my CGM, but you just do what you do. I take care of my kids and live my life. Do I want a cure? Of course I do. Not so much for me anymore, but for my daughter, yes. I would gladly never get cured myself for my daughter to not have type 1 and that’s pretty much all mothers I’m sure, whether a Type 1 mom or not. 


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Navigating type 1 diabetes and learning along the way

Navigating Type 1 Diabetes and Learning Along the Way

Navigating Type 1 Diabetes and Learning Along the Way

Monica Westley, PhD

Here is my story about our daughter Allison, and the incredible lessons she has taught us. We have always been a family of explorers and adventurers, readers of books and lovers of nature. We encouraged our kids to learn as much about the world as they could. Still, until four years ago, we like so many others, knew very little about type 1 diabetes.

Allison had been losing weight (but growing taller) thirsty (but it was hot here in SoCal) and then began to have flu symptoms. On the second day of the “flu” (DKA) we brought her to her pediatrician. I asked “Could this be high blood sugar”? The pediatrician said, “Oh its very unlikely but why don’t you go to the ER, we don’t have a way to measure that here!”

At the ER, our daughter was lying down, super sick, yet still we had to ask that she be seen several times. We waited for over 3 hours, along with those who were waiting to be seen for a common cold. Finally, in the back, the young doctor sampled her blood with the glucometer and turned to me. “Your daughter has type 1 diabetes. It’s a life long condition for which there is no cure. You will be taken by ambulance to the Children’s hospital where you will learn how to live with this.” And so began our journey.

Initially, its all a blur. You’re thinking,” Ok I think we can fix this if….”. Then you realize there is no way out of this condition, and you must move forward as a family. You start to learn all you possibly can about it and how to optimize blood sugars. For the first 2 years we checked her every night at 2am, and more if her blood sugar didn’t settle down.

Then came the advent of Nightscout, which was a group of amazing parents who hacked into the existing technology to allow the blood sugars to be visualized by parents. Quickly, Medtronic and Dexcom responded with their own “version” of Nightscout. The ability to see Allison’s blood sugars on our phones by our bedside and to be alarmed if she came out of range was invaluable. Our rattled nerves could settle a bit. Now she could go overnight with friends, and that was a freedom gained!

Then we learned about TYPEONE Grit, a low carb, high protein way of eating (WOE) endorsed by Dr. Richard Bernstein, and followed by many. Google him, he’s amazing. This WOE was not recommended by our pediatric endo or the CDE in the hospital, but it was an amazing and invaluable resource and has helped keep her blood sugars much more stable. Another win!

Finally, after she was experiencing many undiagnosable “Highs” I began to search for an answer. Allison uses the Medtronic pump, and I asked our endo to change her from the plastic cannula in the MIO quickset to the SureT needle. Their feeling was that she didn’t really need it. However, when I pressed they changed it. Almost immediately, she was in better control. Yet another win!

From all these experiences we learned, when your child has Type 1 diabetes, you MUST continually be your child’s advocate, you must be proactive, you must keep searching for new advances and ways of doing things. At times you will be exhausted, sad, maybe on your knees, but don’t lose faith! This disease will unexpectedly teach you many things.

What else did we learn? We learned that Allison has an amazing spirit! At times, diabetes dampened her spirit, but it’s ember has never gone out. Her capacity for resilience, tenacity and resourcefulness has grown stronger with every year.

What has she done since her diagnosis? Allison has been class president, homecoming queen, a runway model for JDRF, raised over $20,000 for JDRF. She has worked in a type 1 diabetes research lab at Harvard, started a Hands on Science program at a local underprivileged school and kept it going every week for 3 years, received the Presidential Service Award, National Honor Society recommended, straight As, Cum Laude Society, Peer Mentor leader, started her company Mermaid Medicine, acted in the school musical, created her column “In Someone Else’s Shoes”.

She was named “19 under 19 to watch” and completed 4 years of high school varsity sports. She currently runs the fastest mile on the track team. Allison has also recently been accepted to USC (Merit Scholar) and to Harvard. Right now she is preparing to go on a 2 week wilderness adventure off the grid in the Sierras where she will be the only person with T1D.

Pretty cool, right?

People say, “She makes it look so easy”. And she does. I do want to tell those on “the outside of diabetes” just don’t forget that behind it 24/7/365 she is walking the tightrope of blood sugars. It requires strength and grit. She is strong and most importantly, she is kind. Because of all she deals with in her own diabetes realm, her compassion muscle is very strong. She even gives those like our current US Budget Director Mick Mulvaney, who think there’s one type of diabetes, and judge those who have it, compassion.

Heres what I would share to the “newbie parents”. Be your child’s advocate. Trust your gut, you are on the front lines of this with your child. Be proactive. Never stop learning about the disease and new technology, clinical trials, and ways of eating (WOE). Find community. I formed a group called “The Sugar Mamas” we meet for lunch and keep each other sane. Keep an eye on the online community of diabetes: GLU, CGM in the Cloud, CDN and especially TYPEONEGRIT are all important networks with helpful people, many who have great ideas and inspiration. Most are going through what you are going through. Strength in numbers!

Finally, keep your dreams for your child’s success alive. Encourage them to reach. Encourage yourself to stay strong. Play the song “You’re an Overcomer” really, really loud ! Don’t forget to have fun. If one day is terrible, try again the next day. Look for a sliver of humor in the crazy diabetes things that happen. And don’t forget to pray for the day when we all wake up to the front page headline ” A Cure for Type 1 diabetes has been found”.


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How Did You Know Your Child Had Type 1 Diabetes? Know The Symptoms (It Could Save a Life)

How Did You Know Your Child Had Type 1 Diabetes? Know The Symptoms (It Could Save a Life)

By: Rachelle Stocum / Blog

Parents of children with diabetes will hear this question asked a million times. And each time you tell your story the story gets shorter and shorter. You begin to leave out details. Details that may one day save another child’s life.

I wrote this for a couple of reasons. The first reason was to document the details and help other families who are searching for answers to unexplained symptoms. The second reason was to really get my emotions off my chest, and reflect.

December 30, 2016 is a day I will never forget.

This date will now be forever know to us as Carter’s dia-versary.” This was the day my seven year old son Carter was diagnosed with Type one Diabetes. I still tear up when I say or even write those words… my son was diagnosed with Type 1 Diabetes.

It all kind of happened so fast really. It was Christmas break 2016 and the kids were home for a couple of weeks. Things were normal as usual, stress right before a holiday, scrambling to buy toys for cousins we forgot about (because they were only born 6-12 months ago and we don’t see them much) and visiting with family and friends. My husband and I both work out of the home, and since the kids were on break, we were around the children much more than the usual 24/7 on the weekends.

The week before Christmas my son Carter had so many complaints. He’s not a whiny kid by any means so this was unusual for him. He’s actually the most compliant child I know. When I ask him to do something he does it. So when he first complained of a stomach ache I thought he was coming down with the flu. It seems reasonable that a child would get sick in December.

But everyday preceding that day he had a new complaint on top of the prior one. Next came dizziness, then headache. I asked him to drink more water to try and flush out the bad germs. The symptoms just continued to compound. So being the compliant child he is, he drank more water. Next he complained of being tired in the middle of the day. “Well you’re going to be tired if you’re getting sick.” I said. Next he said his heart was racing at night when I tucked him into bed.

In the morning he said his legs were shaky and wobbly and it was hard to stand up. He had even wet the bed, which was strange because this kid never wets the bed. Later I will learn that this too was a sign of Type 1 diabetes. Children wet the bed because it’s the bodies way of trying to secrete ketones from the body.

 
It was starting to become really weird at this point.

I mean he’s got like 100 things wrong with him in such a short amount of time. I did like any other mother, who is tech savvy and results driven, would do. I went to Google and found WebMD symptom checker. I entered in his symptoms and diabetes came up as a possible diagnoses. I read the symptoms over and over and each time I dismissed the diagnoses because he didn’t have extreme hunger, extreme thirst, weight loss, or vomiting.

 About every other or month or so I make a self diagnoses based on some random symptoms I have (mostly due to just getting older) and I’m convinced it’s cancer, but it never is. So I wasn’t very worried after reading the signs and symptoms of Type one Diabetes since we only had a few of the symptoms. I always have two or three symptoms of some horrible disease.

But during the week of December 26th he kept saying the symptoms were getting worse.

He told me his heart was raising so fast he thought it was going to jump out of his chest. He said he had a headache all day prior and he woke up with the same pounding headache. I remember saying to him that morning, “Boy, that really sucks to fall asleep with a headache and to wake up with one.” By this time I had gone online several times inputting symptoms and it kept coming back to Type 1 Diabetes.

On Thursday, December 29, 2016 Carter started drinking a lot of water, and I was happy because we wanted to flush this bug out of his system. So I filled up a 32oz water bottle with ice and water. He literally came back 5 minutes later asking for more water. I remember looking at this in disbelief and asked I him if he dumped the water out, because I just filled it up. He said no, “I drank it all and I was really thirsty”. So I gave him more water. I went about my work and didn’t even think that thirst was one of the symptoms of Type one diabetes.

That evening my husband and I were watching a movie when Carter came running out of my bedroom shouting, “I’ve lost 4 pounds!” Now you may ask yourself why is a 7 year old weighing himself.

Well, we all weigh ourselves and during this kids routine well child check in October the doctor said that he would prefer Carter not gain any weight because his hope is that he would grow taller and thin out a bit. He’s not a huge obese kid, but he is one of the youngest kids in his second grade class at 4′ 5″ and he’s also one of the tallest. He’s only about one foot shorter than his 11 year old brother. See my husband is 6′ 4″ tall so I was not at all concerned that Carter was going to be fatter then he was tall.

So it just meant that (his sucker for a mom had to tell him no, more than she said yes) we needed to cut back on sweets. Carter has a sweet tooth like his Dad. He loves Hershey’s chocolate bars and slurpees (aka: slushy or icee). I’m a sucker and I have a hard time saying no to Carter because he’s such a great kid! So we knew Carter weighed 80 pounds, he might fluctuate to 79 or 81 pounds but at 9pm he should be on the heavier side of the scale.

I asked him to repeat himself and he said, “I’ve lost 4 pounds.” I weigh 76 pounds now. At that moment I remember lifting my head from the couch, pausing the movie we were watching and saying to my husband, “I think he has diabetes.” My husband asked me why I thought that, and I gave him all the reasons why. I told him that tomorrow I’m going to call my grandma (who is a Type 2 diabetic) and ask if I can borrow her blood glucose monitor.

So the next day I went out to call on my accounts and I got so busy I forgot to call my grandmother because I just got busy. When I got home around 11:30am Carter was still asleep. He fell asleep at around 9:30pm the night before. I remember because my husband took as picture of him. He had passed out on top of my desk watching Netflix or YouTube on the computer.

 
So I tried to wake him up but it was really hard. He was groggy and didn’t want to wake up. Once he was finally woke up I told him that I didn’t want him to eat anything until I was able to get grandma’s monitor and test his blood sugar. He drank some water but understood what I was asking of him. He didn’t complain or cry even though he was hungry.

I called my grandmother and asked her to meet us at McDonald’s for lunch & bring the meter. I think it was around 1:30 or 2:00pm when we finally met up & took his blood sugar. I pricked his finger and he said ouch, then added the strip and ran the test. His blood glucose said 251 fasting.

I knew that was bad because when I was pregnant with him I had gestational diabetes. My blood glucose only ran about 120 from what I can recall, and I knew normal was around 100. I immediately started to panic. I was ready to leave and go immediately to the hospital and my grandmother said, “No wait, it’s probably just an error on the machine. Why don’t you let the boys eat and call your doctor’s office and tell them what’s going on and see if they can see him today?”

Reluctantly I took her advice, because for a moment I didn’t actually want my suspicion of diabetes diagnoses to be true. Later I found out that my grandmother knew that they was nothing wrong with the meter, but she could hear the panic in my voice and see the fear on my face when I read the number out loud. I immediately called the doctor’s office and explained the situation. They said I could get in at 4:15pm that day.

 
I took the appointment because I still had work to complete from the morning, and two hours is enough time for the food to digest, and to get a better reading on the blood sugar. After I hung up at with the doctor’s office I ate my salad and my son ate his chicken nuggets and drank his diet soda. I was so worried thinking what if, what if he has diabetes?

Before lunch was finished the boys asked if they could get an ice cream cone. I said of course you can. After about 4-5 licks of the ice cream cone Carter immediately said he didn’t feel good and said that he was going to throw up.

I rushed him to the restroom at McDonald’s and rubbed his back while he leaned over the toilet. He was dry heaving and he didn’t actually throw up but you could see the pale color in his face and the hopelessness look in his eyes.

He then used the restroom to urinate and I escorted him to the car hoping the fresh air would help. After I arrived home things were just as normal as they ever were. The boys went outside to play and I finished up my work.

Before I knew it, it was 4 o’clock and time for our appointment. The doctor’s office is just five minutes from the home so we dashed over there.  At this point I was almost questioning myself. Carter was literally jumping up-and-down couldn’t stand still and acting like a kid on a sugar high. Was he fine, was I overreacting, am I being a crazy parent? We got in the car and drove to the doctor’s office.

 
Once we checked in at the doctor’s office Carter was immediately very thirsty. I remember going down to the car and grabbing his tumbler from the car and filling it up with water in the doctor’s office. While we waited he drink 8 ounces of water over and over again in the course of minutes. While we were in the exam room Carter went to the bathroom three times.

 

The doctor came in and asked me what had been going on with Carter. I explained the situation to her and why I had suspicions of diabetes. She told me that she had treated children before who had diabetes and she said by looking at him today he looked fine. He didn’t not look like a child who had type one diabetes.

After many questions she said, “Ok, I’m going to have my MA come in and test his blood glucose, and I’m sure we will be sending you home for a nice long holiday weekend.” I thanked her for her time and again was doubtful that there was anything wrong with him.

She literally just told me he doesn’t look like he has diabetes. Oh great! Now they are going to think I’m that crazy parent who brings their kid in for any little thing. Later I would further understand what she meant when she said he doesn’t look like he has diabetes. What she meant was he doesn’t look like a kid who is in Diabetic ketoacidosis or DKA. A new term I will lean and hear more about.

 
It was right before the holiday weekend and the new year around 4:45pm Friday, December 30, 2017. The medical assistant walked into the room and said, “OK, we’re going to get your blood sugar now. Have you had your finger poked before?” She asked Carter. He said, “Yes, this afternoon my mom poked me.” She then poked his finger and held up the meter with the strip inserted and touched his finger.

We waited for the countdown 3,2,1. Silence filled the room, and nothing. Nothing showed up on the meter. I was so confused I’ve never seen a blood glucose meter not give you a number after reading. It only said High Glucose.

I looked at the medical assistant asked her, “Why doesn’t the meter give us a number, is something wrong.” She said, “The only time the meter doesn’t give a number is when it’s over 600, his blood glucose is higher than what the meter can read.”

The medical assistant immediately left the room, closing the door behind her. I knew right then and there that he had diabetes. My heart was racing and I was frantic but I waited there patiently for the doctor to come back into the room. It felt like forever.

She looked at me and put her hands on my shoulders and closed her eyes and said, “I am so sorry, but your son has Type one Diabetes and you need to take him immediately downtown to the Sacred Heart Children’s Hospital.

She uttered some words like I’m sorry I didn’t actually think he had diabetes, he appears fine. Children who are in DKA are usually very ill and non-responsive. I think we caught it early enough, now go.

My older son Tucker was at home with a friend and my husband was working at a wine tasting about 10 minutes from our home. I immediately left the doctor’s office and called my husband and told him that we were headed to the hospital and to meet us there. I almost forgot to tell him that he needed to grab our son who is still at home.

I remember driving to the hospital and getting there almost in tears but in disbelief and shock. I checked in and they said we were expecting you. It was only minutes before we sat down and we’re back in bed he emergency room getting vitals taken. I have to admit I did not know everything about Type one Diabetes.

I literally thought that some people just had diabetes worse than others. I knew some people needed insulin and others took pills to manage their diabetes.

I only had personal experience with gestational diabetes, and a close friend in my 20’s who was originally wrongly diagnosed with type 2 to only later find out she was a Type one Diabetic. I knew what her symptoms were because we were on vacation in Hawaii when she began to not feel well and was extremely thirsty and using the restroom a lot.

 
It’s probably that knowledge that helped me diagnose Carter as early as I did.

Having gestational diabetes for me meant I needed to check my blood sugar every day, keep track of my food intake while tracking my blood glucose and eating healthy and keeping the carb ratio down and taking a pill once a day.

 
Little did I know that there were no pills in Carter’s future. I had no idea what the future held for myself for my son, and for our family. When they tested Carter’s BG at the hospital it was 560 I believe, it had dropped a bit. It felt like forever that we waited for a room at the hospital.

It was no surprise he had Type one Diabetes, but the doctor who delivered the news said something like, “Your son has Type one Diabetes, you’re going to stay the night, probably the weekend and we are getting a room ready for you.

Do you have any questions?” Do I have any questions, are you kidding me, yes, a ton. But I didn’t know what questions to ask. Have you ever heard the saying – You don’t know what you don’t know? So while we waited from about 6:00-11:30pm I Googled T1D trying to learn as much information as possible about the disease.

I remember being irritated because from everything I was reading this was very serious, life threatening even, and my kids and husband were all playing video games on their cell phones and tablets. Maybe it was my husband’s way of dealing with a bad situation, just ignoring it, or maybe he didn’t care. Whatever the answer was I didn’t care.

I was in “mama bear” mode and I wanted to figure out what I needed to do to fix my son. I guess it made me mad because my husband didn’t make any effort to investigate what could be done to help our son.

 
We finally arrived to our room around midnight. Our family didn’t eat dinner because we had been at the hospital since 6pm that night and we just got to our room. My husband and children were starving. So they left to get food and came back to deliver me some sushi and drinks.

They gave Carter some string cheese and crackers and he fell asleep. I remember the nurses were so nice and kind. I asked a ton of questions and stayed awake with the lights on until probably 2am. Needless to say I couldn’t get much sleep at all. It was 7am before I remember falling asleep and my husband and oldest son arrived the next morning around 9:30am.

Who knew that this sleepless night was only the start of many sleepless nights to come.

 
Know the signs of Type 1 Diabetes.

What to look for: Symptoms of type 1 diabetes in children

One of the early signs of diabetes in children is increased urination and thirst. When blood-sugar is high it triggers a reaction in the body that pulls fluid from tissues. This will leave your son or daughter constantly thirsty, resulting in a need for more bathroom breaks throughout the day. Below are some other warning signs that you should be aware of.

 

Fatigue: If your child is constantly tired it may be a sign that his or her body is having trouble turning sugar in the bloodstream into energy.

 

Changes in vision: High blood sugar levels can lead to blurred vision or other eyesight problems.

 

Fruity smelling breath: If your kid’s breath smells fruity, it could be a result of excess sugar in the blood.

 

Extreme hunger and unexplained weight loss: When your son or daughter’s muscles and organs aren’t receiving enough energy, it can trigger extreme hunger. And sudden weight loss—especially if he or she is eating more—should not be ignored.

 

Unusual behavior: If your child seems more moody or restless than normal—and it’s in conjunction with the symptoms above—it could be cause for concern.

 

Disclaimer: The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health.


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mothers of type 1 diabetics

To the Mothers of Type 1 Diabetics –

To the Mothers of Type 1 Diabetics –

It’s often that we hear how heroic people with Type 1 Diabetes are, but it’s not very often that we give thanks to the ones behind the scenes that help us get to where we are today—which include the t1d mothers and fathers.

“This disease takes a team of people to manage it, and when it all seems to be falling apart around us, it’s thanks to you for holding us together.”

We couldn’t do it without the people who love and support us.

So this is for all the mothers of type 1 diabetics for Mother’s Day:

Thank you-

To all the mothers who’s hearts were shattered into pieces the day you heard the news of diagnosis but told us everything was going to be okay. The mothers who have found and continue to find the strength every day to fight this disease along with us—especially on the days we feel weak. The ones who get up throughout the night and instinctively check our blood sugars to make sure we make it through to the morning.

Mothers who advocate for us and give all of us a voice in this world. The mothers who get up every day exhausted and take on whatever the day brings, just hoping that our day is a little better than the last. The ones who encourage us to reach for the stars and never let diabetes stand in our way.

Mothers that are always checking up on us and letting us know that you care. The mothers who have to be prepared at all times on how to handle life threatening situations if and when they occur. The one’s who try to stay as calm as possible during difficult moments when deep down you’re breaking.

Mothers who have to fight tooth and nail for authorizations and approvals through insurances for—prescriptions, doctor visits, medical devices, and insulin. The ones who have to fight back tears when administering insulin, knowing that it’s the only thing keeping us alive. The mothers who always have to plan everything ahead of time. Whether it be our meals, snacks, in case of emergency essentials, making sure we have our insulin and at what time, sensor changes, and the list goes on.

Mothers who carry guilt from not knowing if you’re doing a good job – (but believe me you’re doing amazing)The mothers who are carrying the weight of the world on their shoulders. Day in and day out, 24/7, 365 days a year. Whether you’re new to this disease or you’ve been helping manage a type 1 diabetic for many years; what you all have in common is that you are all heroes. You are trying with everything you have at a disease that ultimately cannot be controlled.

You were unexpectedly handed a difficult challenge because you are STRONG enough to endure it. And you rise to the occasion every day without hesitation. There’s really nothing more you can ask for.

Thank you to all the mothers of type 1 diabetics from the bottom of my heart! You are all appreciated more than you know. HAPPY MOTHER’S DAY!!!

 

Sincerely,
A Type 1 Diabetic


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In This Journey We Have Learned Gratitude

In This Journey We Have Learned Gratitude

In This Journey We Have Learned Gratitude

Written by: Shawn Nelson

December 28, 2014….that date will forever be in my head.

A few weeks before, that is when things started to change for us. It started with what I thought was anxiety when we went out to eat. Christian, who had just turned 11 at the time would be doubled over in pain after eating meals. Saying it made him “feel funny” and he couldn’t explain it. That led to extreme fear to go to restaurants because he then associated it with feeling ill.

My heart broke thinking this was his life…and to let that fear take over crushed me. Soon after Christian all of a sudden had a burst of health awareness….we found him munching on celery, making great food choices, drinking water, and eating ice…lots and lots of ice. It was non stop. And for one split second I actually thought to myself, “something seems wrong.”

But every road I turned I had a reason for why he was acting in this manner. Christian then caught a “bad cold”….one that seemed to linger. He was lethargic constantly, he couldn’t even keep his eyes open to drive to the grocery store. But he just kept telling me, “Mom, I am fine. Just tired from being sick but I am getting better.” He was then invited over to a friends house to sleep over with his twin brother. I hesitated but he insisted he felt better. They were like family to us so I let him go, knowing they would contact me if there was an issue. Maybe this would get him out of his funk?

The next morning upon picking him up, it hit me. The door opened to the house and I knew something was horribly wrong. After not seeing him for 24 hours I really realized the symptoms such as how skinny he was, how tired he looked, and how black and sunken in his eye sockets had become.

The boys got into the car and when I asked them how the sleep over was, Christian couldn’t answer with out his words slurring into one complete mush pot. I tried talking myself out of any conclusion…he just had a sleep over. He was probably exhausted and just needed sleep. I went home to drop off his brother and told my husband we were running into the doctor. In the car on the way I called our family doctor.

It all of a sudden hit me.

He had lost a ton of weight, dark circles, eating ice non stop, sleepy, and his siblings were teasing him of not brushing his teeth and asking him if he ate Juicy Fruit gum. The RN in me took over and I told our doctor….he either has pneumonia or diabetes. In my heart I knew it was the later.

His tests at the doctor’s office confirmed it and we were in the car next driving to the nearest hospital that treated children with Type 1 diabetes. Upon getting in the car Christian was coherent and carrying on a conversation. Still a bit slurry, but still chatting. It took us about 30 minutes to drive to the hospital and by the time we got there he couldn’t walk. I ran inside searching for the triage desk. They actually gave me a mask to put on him and we were told to wait. I said, “He has diabetes, it’s not contagious” I refused the mask and was asked to wait.

The next part was a blur.

We were whisked into a bed immediately and I vaguely remember fighting to get him back there…which seemed like an eternity. I held this 11 year old body in my arms and his brother just draped himself over crying. Poor guy was so scared. Blood draws, oxygen, crash cart parked at the foot of his bed, and my poor baby was no longer talking. He was out….slipping away fast.

All I could do was stare. I went into nurse mode and needed to know every test they were doing, and every move that was being made. We soon were transferred to the PICU. My boy was breathing on his own, but I knew things were teetering on the other side. With my medical knowledge and the things they were prepping the room with…I just knew. Slowly we started to see improvements with him over the next few days. Glimmers of hope and even a smile once in awhile.

After levels returned to just about normal, and we were out of the woods of a coma or death…the education started. I was like a deer in headlights. Christian, on the other hand, was a rockstar. That boy just took everything he had in him to take control.

Fast forward to 2 years later.

He loves to go live on social media, he loves to teach. My once shy and quiet soldier has turned into a roaring lion. He tells me, “mom I don’t need to be around other kids that have T1 just to feel normal. I am normal, and this is just part of my life.”

He does have his days when being strong is just to much. And I can see it in his eyes. Those are the days when he gets really quiet and I will ask him….”Hey bud, you okay?” And all I get are tears. “I am so tired of this mom. When will there be a cure.” Together we hug and cry…and to be honest say a few curse words to let that anger out, which usually stimulates a laugh and a smile.

Deep down I know my warrior is strong, but all I want to do is take this away from him.

In this journey we have learned gratitude. Gratitude of all things around us. Life is amazing. We have gratitude for family, for our Dr on that scary night in the PICU, for our friends that ask questions before judging, our current Dr for his understanding/empowerment and education, technology (don’t know if as a mom I can live without a Dexcom), and immense gratitude for insulin.

Oh, sweet insulin. Thank you for keeping my son alive. And for those families out there that are fighting a chronic illness…stick together like glue. Surround yourself with nothing but positivity and people helping you to row your boat! It is true when they say you can find your heroes in your own backyard….because I certainly have found mine.


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The Tribe Of The Unglamorous Heroes

The Tribe Of The Unglamorous Heroes Of The Night

The Tribe Of The Unglamorous Heroes Of The Night

– Written by Michellè Dreeckmeier

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Last night I probably saved our daughter’s life.

It was not the first time I had done that.

And neither would it be the last.

Do you want to know what it feels like being dubbed a so-called ‘life saver hero’?

I’ll tell ya. It feels (unglamorously) TIRED.

My ‘heroic act’ – if you want to call it that – comes wrapped in a frenetic package made up of a malfunctioning organ, erratic sleeping patterns, math, carbohydrates, pajamas, insulin, alarm clocks, blood sugars, quiet wee hours of the night, a bad case of bed hair, worry, the promise of a manifesting head-ache the following morning and a young brave person who is inestimably loved.

I am the mother of a daughter who has a chronic, life-threatening, high maintenance, autoimmune disease for which there is no cure…yet. Without any warning our daughter’s body turned on itself and killed off almost all of the insulin producing beta cells in her pancreas. The result: erratic blood sugars which (drama alert) could potentially take her life without much notice. It was two years ago when we received this diagnosis which we wish weren’t: our 11 year old daughter was diagnosed with Type 1 Diabetes. In that single moment our lives changed forever.

Since that day our daughter has been called:

BRAVE.

COURAGEOUS.

A HERO.

A WARRIOR.

I too use these words when referring to my daughter. Because in my eyes she certainly is all of these things – as is every person living with Type 1 Diabetes.

Each day my husband and I act mostly as standbys – we offer our support wherever and whenever she requires or might need it. Our daughter prefers to manage this complicated autoimmune disease mostly on her own. She’s been like this forever. Independant. Self-reliant. Responsible. Conscientious. She is so (wait for it) BRAVE and COURAGEOUS.

At nighttimes, when she sleeps, we take over and monitor her blood sugars and keep her safe. She needs her rest and we are thankful to do this for her. And since a (much desired!) continues glucose monitor is not covered by our health insurance we get to be on ‘night time pancreas duty’ every single night.

My husband and I have been dubbed brave and courageous heroes as well. Yet, owning these words does not seem real and neither do we feel worthy to be even called that. Let me be clear, my picture of a hero most certainly does not match the tired individual with weary eyes who stares back at me in the mirror in the morning after one of those D-nights. None of our family pursue or aspire to the title of courageous, brave hero. We just do what we have to do to keep our daughter safe and alive.

What we do chase after, however,

is LIFE,

and the HOPE for a cure.

D-life is not about titles and labels and feeling brave and courageous and parading around like hailed surviving heroes. There certainly is no time for that! And even though I myself call my daughter a brave and courageous hero I am very aware that she more often than not does not feel like she is any of those things. In the end it comes down to LIFE and living it to the fullest, and enjoying what life offers us in the gift of FAMILY, the gift of TODAY, the gift of NOW.

Like me sitting here, in the NOW, typing these words while drinking a big mug of strong caffeine laden coffee. Because I am a D-mom. Who slept little last night and now own a pounding headache but, thank GOD, did caught an awful episode of hypoglycemia just in time before things got really ugly last night. This cup of coffee may as well be a glass of champagne. Because despite me losing hours of sleep each month thanks to Type 1 Diabetes I am so very thankful that I did caught last night’s unforeseen and unexpected hypo since I almost opted to not check her blood glucose during that specific time slot. I prefer to not ponder any further on the ‘what if I didn’t’ scenarios pertaining last night.

Right now, for a brief moment, I will silently acknowledge the following to myself: Last night I probably saved my daughter’s life. I fought Type 1 Diabetes and I won that round. And because of that my daughter woke up this morning and I am now the proud owner of war scars in the form of exhaustion which will last for the remain of this day. But thanks to the gift of coffee and GOD I will prevail.

During nights like last night I often like to remind myself that I’m not alone. Somewhere in the quiet of the night there are other parents who also fight for their child’s life, sustains them and help keep them alive and safe.

It might be a different disease or a disability or another condition but ultimately we are fighting the same fight.

And to that I raise my big coffee mug and declare:

Here is to us, the tribe of the unglamorous, reluctant heroes of the night who fight battles of life and death in our pajamas.


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We Are Not Letting Diabetes Win Anymore

We Are Not Letting Diabetes Win Anymore

We Are Not Letting Diabetes Win Anymore

By: Jodi Otis

10 years ago our lives were forever changed when my then 6-year-old son, Bailey, was diagnosed as a Type 1 Diabetic. I will never forget the day his beautiful brown eyes looked at me as he uttered the words….”Mom, am I going to die?

I swear my heart stopped for that moment in time. I saw his life flash before me in just a matter of seconds. The tears softly rolled down my cheeks as I promised him he was going to be OK, that no matter what, he was going to feel better soon.

Before we knew it we were off to Children’s Hospital where his blood sugar was almost 800 and he had large ketones but was not in DKA. We spent the night and as many T1D parents do—you admire them as they sleep. As I sat in the darkness and silence the tears fell like rain.

And I prayed—I prayed for him to find peace and the strength to handle this. He was six, 6. He should be worrying about if he was going to jump in mud puddles or ride his bike not what his blood sugar is. I knew we had a long road ahead of us.

The next two days we had training so we could take our child home with us and be experts in diabetes. I should have known he would have had the most amazing courage, he took the poker and meter from the nurse and tested his sugar all by himself. He really has no fear of anything!

4 years later, when he was just 10, his 14-year-old sister, Bree, wasn’t feeling well and he could see the telltale signs and he told her to take his meter and check her sugar and if my heart did not stop again….her blood sugar was almost 300.

I couldn’t help but feel anger—not towards her but for her. Anger that she will have to struggle for the rest of her life after seeing him go into DKA twice and be hospitalized. After seeing him have high blood sugars and low blood sugars and feel awful. After seeing him get sick with the slightest cold or virus sometimes. Seeing him have to adjust….EVERY…SINGLE… THING…HE…DOES….TO ….SURVIVE.

I knew she would have a hard time, she is such a picky eater and not a good sleeper, meaning she can sleep for 12 hours at a time, crazy teenagers! She went through a period of depression and I felt her slipping through my fingers and she used her diabetes as a weapon.

I was heartbroken and angry for so long, I felt like diabetes had won, it had taken over my family and my life. Until we decided that we are not just surviving anymore. We are not going to let diabetes win anymore. She had to find the courage to come out on the other side of depression, not an easy thing to do.

Bree has an amazing spirit. Her smile lights up the world. Bailey has the strength of a million men. His courage is far beyond words. Both Bree and Bailey have raced Motocross for several years. It is mentally and physically demanding. Diabetes could have robbed them from a sport they love but they never gave in or gave up. They are my heroes, they are my true warriors. We choose how we live each day, you, me, we choose. Not the disease.

Every day that we fight, we win.


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manageable disease

Trying To Manage a So-Called Manageable Disease

Trying To Manage a So-Called “Manageable Disease”

By: Amy Waddington

“It’s a manageable disease”. Yes, it’s manageable…but it’s also ugly, hard, and exhausting. From the time he wakes up till the time he goes to bed we think about diabetes, what we’re going to eat, when did he eat last, what are his numbers, why does he look so tired and worn out.

Oh nooo, I hope he isn’t getting sick. Navigating through high & low blood sugar throughout the day is SO much more then the number. It effects his concentration, vision, causes fatigue, makes him irritable, and have daily flu like symptoms, as his blood sugar fluctuates.

Every single day he battles and our days are full with “managing the disease”. Like the moment I suddenly realize I haven’t heard from my son for a couple hours and I’m 45 minutes away. So I check the app on my phone that gives me a peek at his blood sugar and there is no reading.

Not only is there no reading but there hasn’t been one for hours. How terrible of me to not catch this sooner. I desperately try calling him. But he’s not answering his phone, and I’m unable to get a hold of him.

The panic sets in…”is he ok?!?!” Is he passed out needing me to come to his rescue????” That’s the thoughts that go through my head. I call every single neighbor until one finally answers and graciously runs to the house to check on him, all while he is swimming in the backyard with his dogs.

Then there’s having to watch my teenage son turn away food because he wants to maintain his current blood sugar. He’ll sneak treats because all he wants is a piece of candy or a bag of chips. But knows he shouldn’t have it because at the moment he is “too high” and although he craves it, he can’t have it. It’s heartbreaking.

We’ll be enjoying a day at a Theme Park and my son will be under a shade tree because he is down with low blood sugar from all the activity. And now he needs to eat some more, rest and wait for it to go back up again. So he can get his color and life back in him and maybe enjoy a few more hours of fun he desperately needs.

Then there’s me sleeping with one eye open. Constantly peeking at my phone to reading his blood sugar because caring for a child with type 1 diabetes is 24 hours a day and 7 days a week. There are no breaks or end to my worry. So yes, “it’s a manageable disease” but please don’t tell me that because we already know. We manage it every single minute of every single day.

My heart behind sharing about Ashton’s Type 1 Diabetes is to educate people about the disease. My hope is that we would continue to be transparent and authentic while spreading as much awareness as we possibly can. If you know of anyone living with a chronic disease give them some extra grace maybe even take a few minutes to give a high five, thumbs up or take the time to encourage them.


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A Heartbreak Like No Other

It’s a Heartbreak Like No Other

By: Jessica Hale

It’s a moment of heartbreak unlike any other I have ever experienced in my life. That moment that you realize that your 2-year-old child gets it. She knows that you’re different and your lifestyle is different than any other person she interacts with. She’s 2 years old and she understands as selfishly as this may sound; that I have medical needs that sometimes require me to put myself before the wants and sometimes needs of my own child. That alone rips me to pieces inside.

But the moment you realize that your child gets the fact that there is something not right with you and she tries to help. Everything that you’re supposed to stand for as a parent seems to be ripped out from under your feet, you are the protector, the comforter, the nurturer. But when that role gets flipped and you’re staring up at your 2-year-old who’s trying to help you with your low blood sugarit’s a heartbreak like no other.

A Heartbreak Like No Other

I was in the middle of getting Chey ready for bed and out of nowhere I’m too weak to stand or walk. So I have to crawl my way to the fridge and sit there in front of it trying to stay coherent and not nod out of consciousness before the sugar has time to hit my system. While doing that I didn’t notice that Chey had moved a box over to the cabinet to where she could step on it and reach on top of the counter to grab my sugar kit. She brings it to me and says “here is your ouch momma” because she knows that it’s used to draw blood and it’s an ouch when you see blood.

And when she handed me my blood sugar tester and put her hand on my shoulder and asked “are you alright“? My heart broke in pieces I never knew existed. I can’t hide this disease at times no matter how hard I try to keep her away from it and as a parent, it hurts because you want to seem invincible; to never show weakness. But with a disease like mine, you get the shit knocked out of you sometimes, and your child is there watching you take that beating and it makes you feel like a failure.

But at the same time of the heartbreak, my heart also swelled with such adoration in the type of child I am raising. One who is 2 years old but with a soul as old as time, the one who already has her hand out to help another one up, and the one whose compassion shines through her very core. A 2-year-old that can show an adult how to be selfless at times and I can’t express to you how much I adore this child of mine. She’s my silver lining, forever and always…



How's God's Plan Helped Save My Daughter From Going Into DKA

How God’s Plan For Me Helped Save My Daughter From Going Into DKA

By: Jamie Smith

Most stories of diagnosis of Type 1 diabetes begin with a critically ill child and a diagnosis of DKA. Not my little girl, Mia. But to properly tell the story, I must take you back to 2001.

Long before she was ever even dreamed of. My son was born premature and his life was saved by Karen, a critical care transport nurse. Like most parents, I made deal after deal with God in exchange for my son’s life. I watched him fight while on a ventilator and heard God tell me to become a nurse. I listened.

I decided that I wanted to give back in honor of Karen and to honor the deal God had made with me. Fast forward 11 years, I was working as a critical care transport nurse. My daughter had just turned 2 years old. I noticed that she seemed to always want her sippy cup. Then she began waking up in the mornings completely soaked with urine. Her diaper would be full, pajamas soaked, crib soaked. I tried decreasing her fluids in the evening, but she was so thirsty.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

Early one morning, about a week after these symptoms had begun, I was getting ready to leave for a 24hr shift on the critical care ambulance when my nurse brain finally clicked: check her sugar. I happened to have a glucometer at home, so I checked her – she was 203. Hmmm… So I called my endocrinologist (I had Graves’ disease at the time) and told him what was going on with Mia. He reassured me, said it wasn’t high enough to be diagnostic, she could just have an ear infection and to check her again the next morning when I got home from work.

The next morning, I rushed home and Mia was still sleeping. Good, I thought, this will be a fasting blood sugar and it’ll tell me more. She was 436. I packed her bag, packed my bag, and we headed to our local ER. I called the transport company to give them a heads up about Mia’s inevitable transfer to Nationwide Children’s Hospital, I called the ER and let them know we were coming. I hadn’t even changed out of my uniform. I held my listless daughter on my lap and watched as they stuck an IV; she never even so much as whimpered. Her sugar came back at 462, but she was not acidotic.

In the meantime, the critical care transport company I worked for had been called on another run. Nationwide Children’s said they could send their critical care truck, but it would likely be 5-6 hours. The endocrinologist from Children’s asked the ER doc if he thought I’d be willing to ride in a regular medic truck as the nurse thus making it a critical care truck. He said yes, absolutely she will (I forgot to mention that I used to work as a nurse in this ER and knew the staff very well.)

So that’s what I did. It came full circle. The deal I had made with God about giving back and becoming a nurse had helped to keep my daughter from becoming critically ill with DKA. The endocrinologist at Nationwide Children’s gave me a hug and told me if I wouldn’t have caught it when I did, she would’ve been in DKA within the next 24 hours.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

My daughter was diagnosed with Type 1 diabetes at 2 years old. Today, she is an extremely smart kindergartener who is in the accelerated reader program. She wears an Omnipod and a Dexcom. She doesn’t let it slow her down and she has even made a YouTube video teaching others how to check their blood sugar. Her best friend is another little Type 1, Mady. She is an inspiration to so many and is loved by everyone who meets her.