Toddler Changes His Own Dexcom on TikTok: Advice From His Mom

TikTok has become more than just a place to dance along to the latest trend; it has become a platform for advocacy for many issues, and diabetes has received increased exposure thanks to this social media app. I couldn’t believe my eyes when I saw a TikTok of a very young boy putting on his own Dexcom G6! And he did it with confidence, bravery, and pride. I wanted to share Daxon’s story in the hopes that it inspires others as well. I reached out to his mom who was gladly happy to chat.

Hi Cassie, thank you so much for taking the time to answer my questions! I would love for our community to get to know Daxon a little better! He is such a great role model for other children living with type 1 diabetes (T1D)!

At what age was Daxon diagnosed and what were the symptoms?

Daxon was diagnosed exactly 1 month from his second birthday at 23 months old.

He started to get a bad temper spring of 2019 and we never understood why. He would get so upset so easily and we just thought it was because of terrible twos. In July, he threw up twice one morning for no reason and out of the blue. He started throwing up at nighttime multiple nights in a row and only at night. I took him to his pediatrician, and they told me “it’s probably the stomach bug, it’ll pass” but I told him “but randomly like that? It doesn’t make sense”.

After about two weeks, it stopped until August. He threw up one more time in the morning and then stopped. Once again, we had no idea why. At the end of August he started drinking and peeing excessively. What really gave it away was that he was drenched from head to toe in pee after a 2-hour nap period one day and that was it. I checked his sugar and it was 461 mg/dL (borderline DKA).

How did you as a family adapt to your new normal?

Honestly, we are still trying to adapt. We take it day by day because it is always changing. The one thing about diabetes is that no matter what, it is different each day. Even if you do the same exact thing, sugars will change.

Did you change Daxon’s and/or your family’s diet at all? What are his favorite go-to foods that don’t wreak havoc on his blood sugars? I’m sure lots of moms could use some tips!

I did not completely change his diet, but I do swap stuff out for healthier carbs and a lower glycemic index. He does low-carb bread, cheese, and crackers instead of mac-n-cheese, Go-Gurts, Two Good yogurts instead of the higher-carb ones, chicken meatballs instead of chicken nuggets, Fairlife milk instead of others  (because of his milk allergy, but it is better carb-wise also), keto-friendly cereal because others spike so much that I cannot get it down for hours, keto-friendly bread only because the GI level is so much better. There are some other changes, but the family has not changed any really. He does still eat candy, it is just more in moderation than before.

His go-to foods are pork rinds eggs, a brownie bar called “Good to Go”, keto-friendly ice cream, yellow bell peppers, broccoli, really any vegetable, cheese sticks, pepperoni, lollipop suckers. Any time we are out Chik-fil-A, grilled chicken and fruit are a must. That is all I can think of right now.

Photo credit: Cassie Daniels

At what point did you start using the Omnipod and Dexcom G6? How did Daxon handle that? 

The Dexcom was a month after being diagnosed and he did not handle it well at first. We would have to hold him down to get him to let me put it on. It was a nightmare but once he watched a friend of ours put her’s on and she told him “you have a robot just like me” he got used to it and now it is normal. When his phone tells us it’s time to change it, he’ll tell me “robot needs changed” and he will 100% do it solo now which is amazing.

The Omnipod was a little different. His first endo wouldn’t approve it because they thought he would take it off, so we had to wait but once we switched to a different hospital, they got him on it right away; so, he was about 7 months in when he was able to get the pod. At first, once again — NOT a fan and it was horrible — but once he learned it meant “no more shots” he was perfectly fine with it (sometimes). We will scream — and I mean scream  — the song “Baby Shark” so he will not hear the clicking for the needle and that seems to help also. He is currently working on putting the insulin in his pod so he is super excited about that.

I know I personally prefer shots, but am often intrigued by the control some pumpers get. Do you find using the pump helps make blood sugar management easier?

The pump for us personally is a lot better for different reasons. Omnipod allows such a small dose, so even 1 gram of carbs he would get some insulin, but with shots, we would have to round up or down, which meant [more fluctuations for him]. Also, in the middle of the night, being able to give him insulin without even touching him has been great. I hated waking him up to poke him with a needle. Also, when on the go we can dose from the front seat of the car. However, if he ever decides that he wants to stop the pump and go back to shots I will support him and what he wants 100%.

@cdaniels2015

95% completely solo 💙💙💙💙 He’s get the hang of this soooo quickly 😭🙏💙 #typeonediabadass #BigBoy

♬ Bang! – AJR

I couldn’t believe my eyes when my diabestie, Hillary Emmons,  sent me this TikTok of Daxon changing his own Dexcom! I am so impressed and inspired! At what point did he express interest in doing that?

After about six months of being a type 1, he has always been curious about everything. He has been checking his own sugar with the meter since about 6 months in when needed to be checked. And recently he was really showing interest in the Dexcom and doing it solo. He did half of it one day and then the next change he did it completely on his own, all I did was hold it and help place it. I never asked him to do it because I didn’t think he was ready for that task yet but that day he told me “I do it” and that was it. Now he is showing interest in some of the Omnipod stuff, which is amazing because he feels in control.

I give you credit as a parent for letting him own his management and giving him the confidence to know he can manage his disease! What would you like to tell other parents about how to get children to want to be a part of their daily care?

Make it positive, make it fun, and make it normal. We have the JDRF bear and we practiced on that since being diagnosed. At first, we used it so he could understand more of it. We also got his big brother and all the other family members involved since day one. We check everyone’s sugars, so it is normal for everyone. All the children in our family (our boys and our 3 nieces) have been very curious about it since day one.

I see you are using TikTok as a platform for awareness and this one video alone got over 103,000 likes! Kudos! What would you like people to take away from your videos?

I want people to know the signs of T1D and to normalize it. I hate when I see people hide that they check their sugar or even giving their self insulin. I want to help parents have a voice for their children because doctors sometimes do not listen, and we need to be loud for our children and to follow their gut. I have a lot of people say that he encouraged their children to try putting the Dexcom on solo and I love that it is helping other children also. One of my TikToks potentially saved a child from dying. Her sugar was almost 1000 mg/dL and she was in DKA and doctors were surprised she wasn’t in a coma. Children should not die for people [not being able] to figure out what is wrong!

Does Daxon enjoy making the TikTok videos? I think “injecting” some humor and fun is the best medicine of all! And one you can all do together as a family!

Daxon loves showing people his stuff. He knows it makes him unique and he loves seeing others who are like him. So, when people duet his videos and they show their Dex or pod it’s helpful for him also to see that there are others like him.

Photo credit: Cassie Daniels

What else does Daxon like to do with his free time when he’s not managing his diabetes and TikTok’ing?

Daxon is a typical boy and I mean ALL boy. He rough houses with his brother, loves to color, help with dishes, cooking, loves to read books, play outside, ride his 4-wheeler, and absolutely loves cuddling with me. I think him being a T1D made our bond even stronger.

How does Daxon feel about being a TikTok sensation and knowing that he is helping to inspire many other children just like himself!

I have told him many times that he is helping other children and I don’t think he really understands what it means yet, but he always smiles and says “they have a robot like me” or he’ll go “yay that makes me happy”. I ask him “do you want to make a video?” and normally he’ll tell me “yessss let’s make a video”. I will never make him make TikToks so if he tells me no then I’ll leave it alone.

I ask this in every interview! Do you think they’ll be a cure in Daxon’s lifetime?

100% honestly I do not foresee a cure ever. They make way too much money from insulin (when it should be free, but that’s another story for another time). I wish there would be a cure, but I don’t see it happening.

Daxon

Photo credit: Cassie Daniels

What advice helped you? Can you pass it along to parents of newly diagnosed children?

My advice for parents is:

  1. Take one day at a time because it is an always-changing, never-stopping, headache of a disease.
  2. Do your best and never get down on your child for their blood sugars. That is the one thing I will never do to Daxon, anytime he has “bad” sugars, I never express it to him or show it on my face because it is not his fault, so I don’t want him to feel like he is failing.
  3. Always tell your child they can still do anything they like and never change activities. Just change foods to help [manage sugars during] the activities. For example, we took Daxon and his brother to a trampoline park and I knew his sugar was going to drop. He started at 170 mg/dL and dropped to 50 mg/dL. I was prepared with milk, yogurt, chocolate, and others, so he could still have fun and be a kid.
  4. Try not to have a fight if sugars are not in range, because everything is magnified if high or low. So what I do with Daxon if he is high or low and has a temper tantrum, I ignore it and let him do what he needs to do. Once he calms down, we discuss what happened and I explain I understand he doesn’t feel good but he doesn’t need to act that way.
  5. Treat them like you would any other child because diabetes does NOT define them.

Where do you see going with your advocacy and awareness on social media or elsewhere? Do you have other plans in the future?

I would love to bring more awareness to this disease. I would love for there to be a law that pediatricians must check A1c every year or every other year. They check your iron, and they check lead so why not diabetes? [Some] pediatricians think that younger children cannot get diabetes until at least six years old which is not true. It is ridiculous because a child’s death is avoidable if people were more aware of the signs and doctors tested when they should.

Thanks again Cassie, we really appreciate you taking the time! I look forward to continuing to follow Daxon’s journey and see how many kids he inspires along the way!

Source: diabetesdaily.com

Rare Until It Happens to You: The Kycie Terry Story

This content originally appeared on Beyond Type 1. Republished with permission.

By Jordan Jendricks

Jamie Terry doesn’t know what exactly it is about her daughter that resonates so deeply with people. But there’s something about the combination of her curly blond hair, striking blue eyes, and the circumstances around her unfortunate and preventable death that have incredible staying power, inspiring countless others to action.

“There have been many times that I’ve thought about that. There are sick children all over the world, why Kycie? But there’s something about her and I truly believe she was here on a mission. She’s still on a mission. I just think there’s a reason behind it all.”

Because even now, five years after her tragic passing, strangers from around the world still reach out to the Terry family about their little girl. They remember Kycie and her story, which has reached thousands and saved an untold number of lives. Kycie’s father, Josh, has lost count of how many other parents have thanked him, explaining they, too, might have lost a child if not for his daughter’s story.

“I don’t know why it went as viral as it did. I think she just has a face, too. And you can see how heartbreaking it was and how hard she worked to try and get back. If you lose a child or you lose a family member, to think that they died for nothing, it’s that much harder. To know that she’s made a difference in other people’s lives and helped save other people’s lives, and saved a lot of heartache and struggles, it’s more doable.”

Kycie Jai Terry was the second youngest of six children and the only girl. After four boys, Jamie remembers crying tears of joy over her fifth ultrasound and the realization she would finally have a little girl. She remembers her daughter as a vibrant child, who loved to dress up, ride bikes and catch lizards; who was a little bit of everything and unique, as her name suggests.

“I don’t think I realized at that time, but now I think there’s a reason that she has this unique name because you Google her and she pops up and it’s because she needed to make a difference in the world.”

Where Things Went Wrong

Kycie

Image source: Beyond Type 1

Kycie was diagnosed with type 1 diabetes on January 30th, 2015 while in DKA (diabetic ketoacidosis). Where her story differs from many who live with undiagnosed type 1 and go into DKA is that she ultimately experienced cerebral edema, a condition where fluid builds up around the brain, causing pressure and swelling. This complication was occurring unbeknownst to the healthcare providers treating her at the time, wreaking havoc on Kycie’s brain and nervous system as she slept in her ER room bed. Less than 1% of pediatric patients in DKA experience cerebral edema, making it rare, though this statistic was of little comfort to the Terry family. As Josh puts it, “It’s always rare until it happens to you.”

As he recalls, Kycie’s initial symptoms started with a headache, then a stomachache. It seemed like she might have had a stomach flu, then strep. But she didn’t get better with antibiotics; in fact, she worsened. She didn’t want to eat, she only wanted fluids, and she was suddenly remarkably skinny. The Terrys felt an urgency to take their daughter to the hospital as her condition only seemed to get worse. She was extremely lethargic once there, and Josh recalls her fruity breath, a tell-tale sign of ketones. Sure enough, the doctor quickly revealed the cause of the problem: “She has type 1 diabetes.”

But Kycie’s blood sugar was difficult to control. Later, the Terrys would learn that during this time in the ER, doctors were focusing solely on treating her diabetes without realizing that she had experienced any brain damage, or that it was growing worse. With blood sugar readings over 1,100 mg/dl (61 mmol/L), Kycie was in severe DKA and needed to be life-flighted to a children’s hospital five hours away. After landing, she suffered a seizure on the ambulance ride from the airport to the hospital. Four hours later, she was intubated, on a ventilator, unresponsive and in a diabetic coma.

An MRI was completed after Kycie was in a coma for over 24 hours, revealing for the first time the cerebral edema. Doctors told the Terrys that they didn’t expect her to live, but Kycie fought, ultimately coming to breathe again on her own before waking up. She spent the next 111 days in the hospital to relearn basic functions, after which she was able to go home and live with her family for another month and a half, though her life was entirely different. It was suddenly a feat for the five-year-old to hold her own head up, smile, or roll over by herself. Josh remembers feeling torn and heartbroken to see his daughter’s life suddenly so difficult.

“I remember sitting up there and thinking what a horrible situation she was in – a situation I wouldn’t want to be in. If I was in that place, I wouldn’t want to live that life,” he shares. “At the same time, she’s my little girl and it’s my job to protect her and my job to be there for her. It was a really hard place to be.”

Kycie

Image source: Beyond Type 1

The family continued on, taking care of their daughter and treasuring the few good times during otherwise long days. They documented their new normal, sharing feel-good moments and milestones on social media.

Kycie then caught a virus that led to pneumonia and another hospitalization, setting back some of her progress and making her less responsive. Though she was able to return home after growing stronger, in the early morning hours of July 11th, her oxygen levels were extremely low and her parents were poised to take her to the hospital yet again. Before they could leave the house, the second youngest Terry passed away peacefully in her father’s arms. She was a few months shy of her sixth birthday.

Her Legacy Lives On

Kycie is well-known now in the diabetes community, her story having touched so many all over the world. Beyond Type 1’s Warning Signs Awareness Campaign, which began in 2016, was inspired by her story and the reality that both misdiagnosis and missed diagnoses are problems that can be solved through education and awareness. Josh and Jamie both can’t underscore enough the importance of being able to recognize the signs and symptoms of type 1 diabetes.

“To get an early diagnosis is so critical. If you can catch type 1 before DKA, you’ve saved yourself the possibility of brain damage,” Josh explains. “And so that early recognition is so vital, not just because of the scariness of DKA, but because of the unknown that comes with it.”

Jamie reflects on her own lack of knowledge about diabetes in general and how Kycie’s situation truly opened her eyes to a chronic illness that affects so many on a daily basis.

“I knew nothing about it. And the thing that’s crazy with Kycie is it all happened so fast. Within five days, she had a traumatic brain injury,” she explains.

Jamie sympathizes with everyone who manages type 1 diabetes, having gotten a small taste of the complexity of the disease while caring for Kycie’s type 1 diabetes (T1D) the short time she was able: “That’s what is heartbreaking to me. Anyone that ever comes up to me and tells me they have type 1, the first thing I say to them is ‘I’m so sorry’ because it’s so much to take on. And we didn’t even get to.”

The Terry family now advocates for safe and early diagnoses of type 1 diabetes, sharing about Kycie whenever they can and working with local hospitals to help improve type 1 protocols. In Josh’s practice as an optometrist, he lectures others in his field on type 1 and the importance of recognizing changes in vision as potential signs. Their family is continually touched by the outpouring of love for their little girl and all they’ve been through, the community they’ve found through their loss and the surprising amount of good that has come out of an otherwise tragic situation.

As Jamie puts it, “There’s no greater title than ‘Kycie’s mom.’ It will always be hard to live without her, but part of the healing journey has been to know that she has saved and continues to save lives.”

Source: diabetesdaily.com

Realistic Goal-Setting and Avoiding Stigma: One Mom’s Perspective

This content originally appeared on Beyond Type 1. Republished with permission.

By Bonnie O’Neil

The title of the article arrests my attention, compelling me to read further. The Numbers of Shame and Blame: How Stigma Affects Patients and Diabetes Management. I shudder as I read the results of a study by the diaTribe Foundation. “Diabetes stigma affects 76% of people living with type 1 diabetes (T1D) and 83% of parents raising a child with T1D.” The statistics are so high.

Stigma. The word itself sounds uncomfortable on my lips. Diabetes stigma means carrying a sense of disgrace or shame because of having T1D, an unpreventable auto-immune disease.

I continue reading. “The majority of respondents who believe T1D is associated with social stigma identified the top three drivers of diabetes stigma — a perception of failure of personal responsibility, a perception of being a burden on society, and a perception of having a character flaw.”

I cringe as I read these findings. Does my son feel like he’s a failure when his blood sugars don’t cooperate and do what he wants them to do? Maybe he does. I know as his parent and caregiver I feel like a failure when his A1c isn’t what I had hoped it would be. Does he feel like he’s a burden on society? On his school? On his family? Oh, I hope not. I can hardly even reread that last driver of stigma on the list. Does he feel like he has a character flaw simply because he has T1D? My heart rises up to my throat.

How can I help my son navigate living with T1D in such a way that he doesn’t fall prey to the shame and failure associated with disease stigma? Rereading the statistics, I pause and ask myself another question. How do I as his parent carry disease stigma? The survey tells me 83 percent of us parents raising a child with T1D are affected by it. Am I a part of that 83 percent? When his physician suggests we make some changes to achieve better outcomes, do my reactions model for my son my own feelings of failure, guilt, or shame?

Whether overtly stated or simply implied, we all have goals in mind for our child’s T1D management. While I never announced my goals as clearly as I would my New Year’s resolutions, my son and I both knew what they were.

  • A1c at 7.0 or below
  • Blood sugars between 80-150
  • Not too many juice boxes in a day

Setting goals is important; it’s what keeps us moving forward as humans. During certain times of the year we’re especially focused on goal setting. Whether it’s January’s hopes for the new year, September’s back-to-school focus, or our birth month marking one more circuit around the sun, we can’t escape the human drive to set goals.

But in our best efforts to keep our child healthy and safe, how can we set reasonable goals that serve more as guard rails than leave us feeling stigmatized if the goals are left unmet?

Set Realistic Goals

It’s easy to slip from the hope and optimism of setting a new goal to feeling shame if those goals aren’t attained. Start small when setting new goals. Remember your child lives with this disease 24/7. Your eagerness to try a new approach to glucose management might feel like the addition of one more heavy weight placed on top of what your child is already carrying. Check in with your child. How does he feel about your goals? There’s a fine line between maintaining glucose control and contributing to diabetes burnout.

Hold Your Goals Loosely

Beware of the trap of stigma when we don’t hit our goals. Commit to living in the no-shame zone. The statistics reveal that 83% of parents raising a child with T1D struggle with stigma, meaning we parents struggle more with shame than even our children with T1D do. The next time you find yourself stressing over an unmet goal you have for your child’s care, recognize that the 83% is you. And it’s me. Let’s break the power of stigma in our own lives so we don’t model it and pass it along to our children. Offer grace to yourself and your child if the goals go out the window for a period of time. You can always get back on track once this season is over, so don’t buy into the failure narrative. Be good to yourself and to your child.

Be Aware of What You Reward

When my son was young, I would often take him to buy a small toy or gift after his appointments with his endocrinologist. It was a few years before I realized that I only bought him a treat when his A1c was at a level that met or surpassed the goal I had in mind. What message was I sending to my son? That I only reward what makes me proud? That my pride in him was linked to his A1c? Even well-intentioned gestures can leave our children feeling shame when they don’t reach our goals. Instead of rewarding only those times when the numbers match our goals, why not celebrate our child’s hard work and the joy of sharing life together after every appointment?

Watch Your Words

Goals like “Let’s do better with blood sugar control next year” imply a judgment that the past year was less than stellar. Your child (or you) may receive this message as a judgment that they (or you) were less than stellar last year. Words like better, good, and bad, which we use all too frequently when talking about blood sugars, are qualitative and can leave our child feeling stigmatized. Blood sugars and A1c’s are just numbers that provide us valuable information from which to make future decisions. Being careful with our language can help protect our child from carrying a sense of stigma.

Remember above all, our goal isn’t really about reaching blood sugar goals. Our goal is to build a healthy lifelong relationship with our child based on respect, encouragement, and love.

Source: diabetesdaily.com

New Target A1C Recommended for Youth with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Matthew Garza and Lydia Davis

The American Diabetes Association has lowered the A1C target for children to less than 7.0%, aiming to improve long-term health outcomes without increasing hypoglycemic events.

The American Diabetes Association (ADA) recently issued a new recommendation on A1C targets for children: youth with type 1 diabetes should aim for an A1C below 7.0%, rather than the previously recommended target of 7.5%. The ADA also emphasized that although this is a target for the general population of children with type 1 diabetes, it is important that each child’s A1C goal be personalized, taking into account hypoglycemia awareness, baseline A1C, and other health issues.

In 2018, the American Diabetes Association (ADA) reiterated its long-held recommendation that children with type 1 diabetes should aim to have an A1C of less than 7.5%. This target was designed to help prevent severe hypoglycemia (low blood sugar) in children. The ADA has revised that position in light of a recent review paper, which showed that elevated blood glucose levels can lead to significant complications during child development, including abnormal brain development, an increase in heart problems, retinopathy, and neuropathy. The review also showed that newer diabetes therapies and technology have resulted in a lower risk for severe hypoglycemia.

However, for certain groups of at-risk children, this new recommendation may not apply, and it may be safer to target an A1C of 7.5% or higher. Children with low hypoglycemia awareness, those who cannot alert others to symptoms of hypoglycemia, those without access to helpful diabetes technology (such as continuous glucose monitoring), and those who cannot test their blood glucose levels regularly should continue to aim for an A1C of less than 7.5%. Children with a history of severe hypoglycemia should aim for an A1C of less than 8.0%.

In contrast, children who are not at risk for hypoglycemia (for example during the often-experienced “honeymoon” period) should aim for an A1C as low as 6.5%.

The lower A1C goal of 7.0% will hopefully lead to a reduction in diabetes complications during childhood and throughout the lives of people with type 1 diabetes, without increasing their risk of severe hypoglycemia while they are young.

Source: diabetesdaily.com

Exhaustion and the Sleep-Interrupted Caregiver

This content originally appeared on Beyond Type 1. Republished with permission.

By Bonnie O’Neil

Nights are the most draining of all. With the weight of our daily work, parental responsibility, and type 1 diabetes (T1D) caregiving still heavy on our shoulders, at day’s end we long to lay our burden down, retreat to the comfort of our bed, and fall gently asleep. But once T1D breaches a family’s sense of well-being, nightfall no longer signals a time of stillness. For those of us in the trenches of T1D, nightfall ushers in a time of heightened readiness…

It’s basketball season for my growing nine-year-old son, so the past several nights I’ve had to test his blood sugar throughout the night. The sleep interruption has taken its toll. I’m bone-weary with no prospect of sleep anytime soon.

I’ve been testing my son’s blood sugar for hours, but despite my best attempts to elevate his blood sugar, his numbers still aren’t high enough for me to safely go to sleep. My noble efforts are no match for what his small body can do without a functioning pancreas.

By midnight I can stay awake no longer. His blood sugar is still not where it needs to be, so I slip under the covers, setting my alarm for thirty minutes. When the alarm rings, I struggle to get to my feet, wrestling with the slumber that keeps me pinned to the bed. Willing myself to think clearly, I make my way down the hall to my son’s room, prick his finger, and wait for the meter to complete its five-second countdown.

Sixty-eight.

Oh, come on. He has consumed five juice boxes by now. Drink one more, sweet baby. I will be back again in twenty minutes to check on you.

I crawl back into bed, setting my alarm for twenty minutes, and close my heavy eyes. Eventually, things begin moving in the right direction. I make one final test at 3:00 a.m., just to be safe.

It was a six-juice-box night. When the alarm rings at 6:30 a.m. signaling the start of a new day, I can barely lift my head off the pillow. Jittery and unable to think clearly, I move as if in a fog. This is not the type of morning fatigue a slow cup of coffee will remedy.

Love Till It Hurts

When sleep interruptions carry with them elements of fear, they take an even greater toll on us. Haunting questions jar us to attention. What if my alarm doesn’t wake me? What if his blood sugar drops too low and he has a seizure? What if I miss an eight-hour high and she awakens with ketones? Our fears are real, and they propel us to get up, even when our bodies cry out for sleep.

This is when we long for the pre-diagnosis days of sleep-filled nights and less stress-filled days. But when we continue to wish away our child’s illness rather than accept it, resentment blocks us from loving our child sacrificially.

One night as I sat vigil, when fear was at its greatest and my sense of control at its weakest, a new question emerged. Is my heart expansive enough to fully embrace that which I cannot change so I might unreservedly love the child I hold before me? Accepting how things are — even if painful — frees me to care for my child with an open heart rather than a bitter heart.

And wherever the heart is open, love can grow.

Genuine love always requires sacrifice. The hours of the night watch have taught me to love until it hurts. As I learn to love my child well — by accepting life as it is and doing my best to care for him at the moment — the real transformation can begin within me. When I practice loving sacrificially, I know hope is not dead.

Where there is genuine love there will always be hope.

Be Good to Yourself

Likewise, I must offer myself grace when I most need it.

The day after a sleepless night is especially challenging for us caregivers. Crushed by fatigue, our tempers are short, and we tend to overreact to people and situations. When I react out of sleep deprivation, guilt points a finger at me. You’re not doing a good enough job. You should do better. The accusations are deafening. But if I can get still enough to quiet this voice, another voice emerges.

Be good to yourself.

The words, barely audible, rose up out of my spirit one fatigue-drenched day after an especially difficult night. Be good to yourself today. Sometimes we need our inner voice to remind us that the nighttime work of caregiving may be the most important work we will ever undertake. When we choose to sacrifice our own needs for the well-being of our child, we are choosing love.

Don’t minimize this. Your vigilant care is the greatest gift you can offer your child.

Being good to myself means redefining some of the expectations I may have for my day. In the busy seasons of life, it is especially important to reject the tyranny of what the culture says we should do and to choose instead to focus on what is healthy for us to do. That may include reevaluating our calendars, postponing appointments that can easily be rescheduled. Looking for ways to say no to optional activities that take more of our energy and focus, and yes to activities that are in some measure restorative. Accepting offers of help from friends or fifteen minutes of quiet to catch our breath. Above all, we can offer ourselves the grace to go slower than usual.

Accepting this offer of grace creates the space we need to re-center.

Be good to yourself today is now my constant refrain. I hope you’ll make it yours.

Source: diabetesdaily.com

Why This Picture Makes My Mother Emotional

This content originally appeared on Beyond Type 1. Republished with permission.

By Esi Akyere Mali Snodgrass

When I was in the 4th grade and attended Roosevelt Elementary School in Iowa City, Iowa we had a school-wide science project called ‘Operation Egg Drop’. The challenge was to have each class pull together their best ‘engineers’ to build a contraption out of edible materials that would be wrapped around an egg that would withstand it being dropped from our school’s rooftop. Marshmallows, powdered doughnuts, Twinkies, snowballs, small cinnamon rolls, and a lot of other edible padding was donated by the local companies and provided in bulk to each class. I squished each individual item in my hands to guess which arrangement would be most successful to protect the egg on impact. Many of the items I had never actually held in my hands. When I opened each package, their scent was overwhelming, and unlike anything I had ever experienced. It lingered and hung in the air.

Sweet Creations

On the big Egg Drop Day, the entire school stood outside and watched as their best attempts were tossed over the side of the building. Each student cheered for the other classes in the spirit of true sportsmanship. My class lost, but it didn’t matter, it was a lot of fun; I remember it to this day. The leftover edible materials that weren’t used for the Egg Drop were divided amongst the students for them to enjoy. I took mine home to my siblings.

A few weeks later, I walked into the classroom and the now familiar, overwhelming scent of sweet packaged materials had filled our classroom once again. Our teacher Mrs. Saunders decided to continue the edibles-turned-building-material theme with a new project. She told us that we were to build a gingerbread house out of cinnamon graham crackers, assorted candies, and frosting. Since our class didn’t win the last event, I was so excited to be given the opportunity to redeem myself from the Egg Drop and to make something great. I was ecstatic and began to sketch my idea out on the provided paper plate. In my mind, I was drafting a blueprint and building a tiny yet deluxe home from Hansel and Gretel.

I had an absolute mansion in mind and used the sugary goop to connect the gumdrops to the walls and to withstand the decorative attic and chimney I planned to add. I was so enthralled with the activity that one would have thought I was building something humans would actually live inside. I delighted in the entire experience. Mrs. Sauders scanned the room, attempting to encourage the frustrated faces of the students who wanted to eat the materials and those who didn’t or couldn’t see the edible materials as anything other than… edible.

Once Mrs. Saunders made it over to my desk, I was giggling to myself with excitement and pure pride that my imagination had built something that was so grand in my eyes. She laughed and took my picture at that moment. Once we had all finished and done what we could do, she gave us all Saran Wrap to cover our creations to set on display for the next two days. Most students had a pile of confectionary rubble and were frustrated from the entire process. On the day we were to consume our creation, Mrs. Saunders gave me this picture to take home. Reinforced with globs of frosting and standing strong on its paper plate, I kept my house wrapped in its Saran Wrap to take home to my siblings to enjoy.

Just a Kid

Decades later, this picture resurfaced and all the memories and feelings of pride, accomplishment, determination, and happiness flooded back to mind. When I showed my mother grinning, she looked teary-eyed and emotional. Confused, I asked her why the picture gave her such a reaction.

‘You didn’t lick your fingers, Esi… You didn’t even lick your fingers…I don’t know how you were able to resist doing that… You were a kid, that’s the most fun part…’

I looked back at the picture, trying to understand what she meant, and I saw the frosting: white and goopy hanging from each of my fingers. I grinned and laughed.

‘Lick my fingers? I was all about building a Hansel and Gretal house, why would I eat my mater-‘

It hit me at that moment, in all the years to that point that I had lived with type 1 diabetes, refined sugar was so far from my consumption experience that I had never, ever thought of eating any of the ‘building materials,’ I was playing with that day myself. It never crossed my mind. It was as foreign of a thought as eating paint or wood. My mother saw her baby girl missing out and wished she had supplied me with sugar-free options or asked the teacher to give me an equally fun yet alternative activity; I saw a goofy kid having an absolute blast.

Perspective Can Determine Our Joy

I say all this to say that perspective can oftentimes determine our joy. There are so many things that many of us humans cannot do: fly without assistance, breathe underwater without assistance, move as fast as a cheetah without assistance, or even process glucose without assistance. Whatever it is that each of us cannot do, it does us no good to sit in the ‘can’t,’ to settle in the restriction. It is futile to focus on the endless lists of things that we are unable to do or experience when there is so much we can enjoy and accomplish… What can you do? What can you enjoy? What brings you joy? How do you turn your pile of ‘edible materials’ into a Hansel and Gretel mansion? How do you turn your lemons into refreshing (sugar-free) lemonade?

Source: diabetesdaily.com

Parenting Your Homebound College Student with Type 1 Diabetes: Empathy Above All

It was early August and we were making the final preparations to send our son with type 1 diabetes (T1D) off to college for the first time. Like so many parents, the newly purchased necessities like cozy bedding and fresh pillows were ready to be loaded for the car ride. Unlike most parents, the stockpiles of pump supplies, insulin, and juice boxes for lows were piled high and deep. My husband and I would have a two-hour window to get him moved in due to COVID-19 restrictions, and we had to plan for where our younger son would wait during this bittersweet process of seeing his brother off.

Jack, who was diagnosed with T1D at age 11, was headed to his dream school in his favorite U.S. city. Still, there was an undercurrent of trepidation that contained our enthusiasm. It felt surreal that a packed up car was going to pull out of the driveway in a few weeks while a pandemic was sweeping the nation. Jack knew this uncertainty first hand since his dad is an intensive care unit physician who had been on the front line treating people with COVID-19 since March. It turned out that Jack’s school elected for a virtual semester. Jack took the news better than we did because he expected it all along. Such is the resignation and resilience of kids with T1D; they have lived with levels of disappointment and daily adjustments since their diagnosis.

College did unfold here within the confines of our home and relationships commenced with new friends from all over the country via online learning. So did an internship in local government with long hours spent masked up for his and others’ protection. “Adulting” was starting and many new routines emerged, including a necessary shift in our parenting style.

Embarking on college for T1Ds, whether they were diagnosed as babies or at any other time in childhood or adolescence, signals a vulnerable time for parents who have kept a steadfast watch on their children’s tricky condition. No matter how independent your child is, it is daunting to think of them living away with no opportunity for you to respond to a low that they are sleeping through, or assist them with a pump change when they are tired and weary from a long day at school or work.

So, with tremendous guilt, I did utter a small sigh of relief when I learned that Jack’s milestone leave-taking would be delayed for a while. However, as both a mindful parent and a psychotherapist, I knew that perspective-taking and empathy would be essential in my response to Jack’s disappointment. If I stayed stuck in the comfort zone of my old routines and behaviors, thus clinging to my relief, I would be invalidating Jack’s feelings, potentially alienating him from me, and thwarting his self-actualization. What I did not realize is that I would be short-circuiting my own development as a parent.

This was a golden opportunity to shift our entire family into a new configuration of having an adult child in our constellation and this required a new rule book. Early on, we fell back on familiar parental scripts with admonitions about staying up too late or eating certain foods too close to bedtime when blood sugars are likely to fluctuate harshly disturbing his sleep. None of this landed well for Jack who was trying to adjust to college and an internship while processing his disappointment over not being on campus. Truly, we were adding insult to injury, so something had to give.

I kept being reminded of one of my brilliant grad school professors at the University of Pennsylvania, Dr. Sharon Ravitch, and her writings at the beginning of the pandemic. “Flux pedagogy” was her trauma-informed characterization of how to thrive amid constant, and often frightening levels of change and threats. Dr. Ravitch applied this to teaching and learning, but I borrowed from it heavily in terms of my parenting. Taking an “inquiry stance” as she said, would allow me to back off of my usual burdensome need for control. As Ravitch emphatically suggests,

“Now more than ever, it’s important to situate yourself as a learner, to examine yourself and your practice through a reflexive lens that helps you to engage, understand, and relate with others through your own curious humility about yourself and your ever-changing practice.”

Being a learner permitted me to focus less on the alleviation of my insecurities about sending Jack away soon with his diabetes, and more on his perspective on his world. I could enhance his life by intentionally giving him the space to be an adult, or I could make his world smaller and more claustrophobic by my hovering with constant focus on his glucose monitor readings, among other things. If I did the latter, I would be thwarting so many wonderful aspects of Jack’s transition into adulthood such as self-efficacy, problem-solving, and autonomy. During an already stressful time with COVID-19, letting Jack succeed on his own would only make his goal attainment more satisfying as well as grit-promoting for his future endeavors.

So, I bit my tongue when I saw the light on at 2:00 am. My guiding principle would be to ask myself, what would he be doing in college right now? He certainly would not want to be answering an annoying or intrusive phone call from his parents. I remain very careful not to show sympathy to Jack which can come off as condescending or to voice to him any platitudinous hidden benefits of him being home. In this vein, author and researcher Brené Brown cautions us that when we impose our “at least” statements or “silver linings” on others we distance ourselves rather than build connections through authentic empathy. If there are any upsides to Jack being at home now for college, I have left them for him to discover on his own.

The result of my flux pedagogy parenting mindset has let me bear joyful witness to Jack’s management of his T1D as well and independently as ever. Balancing work and school while seeing friends in a socially distanced way, he has practiced “adulting” while living with dignity and privacy among other adults, his parents. There is solidarity from a shared experience with empathy, a top of mind practice in our home. In my psychotherapy practice, I have shared this mindset with clients and their families as they adapt to life under the trials of COVID-19.

For T1D parents, be guided by the principles of flux pedagogy by showing compassion to yourselves and your young adult children during this stressful time of uncertainty. We can parent capably through the fog, and as anyone who has driven through fog knows, you need to slow down. If you turn up the intensity of your headlights, it will only obscure your vision. Instead, just decelerate, listen more, empathically join your kids, and your families will emerge from this chapter stronger and more connected.

Source: diabetesdaily.com

One of the Lucky Ones: A Timely Diabetes Diagnosis

This content originally appeared on Beyond Type 1. Republished with permission.

By Mila Ferrer

How It Happened

Fourteen years ago, my youngest son was diagnosed with type 1 diabetes. He had all the classic symptoms. But neither my husband nor I knew that all the signs my son showed meant that our lives would change drastically very soon. I am pretty observant and I did notice that my son was urinating more frequently, but I thought it was just a urinary tract infection. Fortunately, my son’s pediatrician at that time was a friend of the family, and on top of that, her sister has lived with type 1 diabetes since she was little, so she had personal experience with it. I took the liberty of calling her doctor on her cell phone while she was on vacation, and thankfully, she answered the call right away.

When I told her about the symptoms my son had, she immediately said, “I hope I am wrong, but he has all the symptoms of type 1 diabetes. As soon as the pediatric emergency clinic opens, take him in and ask for a blood sugar test. Call me when you have the results.” I was skeptical and baffled, and I told my husband what the doctor had said; I went online to read about type 1 diabetes, but I still did not think that would be the diagnosis.

As soon as the emergency clinic opened, we took Jaime in, we discussed the symptoms with them, and told them about my conversation with the pediatrician. They checked his blood glucose level, and indeed the correct diagnosis was type 1 diabetes.

Kid

Image source: Beyond Type 1

The instructions were very straight forward: “You have one hour to go home and get the necessary clothing for a safe hospitalization.” We left the urgent care with a referral to the pediatric hospital, with our hearts pounding out of our chests and thousands of questions. Jaime was seen by the doctor quickly once we got to the hospital. The next day, we started diabetes education, and two days later, we went home.

Counting Our Blessings

Although my son’s diagnosis was surprising, I confess it was not traumatic, and although we had doubts and fears, we were able to resume our new life quite quickly. That experience led me to believe that all type 1 diabetes diagnoses in children were like ours. What I did not know is that that was very far from reality. I assumed that all primary physicians could identify the symptoms and begin the necessary treatment and education to stabilize the patient’s glucose.

The sad reality is that I was very wrong and once I joined the online diabetes community, I learned about the stories of misdiagnosis. I could not believe it! From that moment on, I could not help but thank my son’s pediatrician for sounding the alarm and telling us what steps we needed to follow. From that moment on, whenever I had the opportunity to educate others about the symptoms of type 1 diabetes, I did not hesitate to do so. As parents, we know the signs of many common illnesses and can quickly identify them, but I had never heard of type 1 diabetes symptoms.

That is why I am so passionate and why I value Beyond Type 1’s Warning Signs Awareness Campaign so much, as it seeks to help identify new type 1 diabetes diagnoses and prevent diabetic ketoacidosis (DKA) from occurring. I feel very fortunate that my son was not in DKA and that his diagnosis had no complications.

Even if type 1 diabetes has already reached your home, I want to invite you to help us by educating your friends and family. We must be observant, educated, and proactive parents, and if the symptoms of type 1 diabetes show up at any time, it is necessary to seek medical help right away. If your story is like mine, you should feel fortunate and be thankful to the healthcare professional, friend or whoever guided you. Join our efforts, share the #T1DWarningSigns and let’s prevent misdiagnosis or missed diagnoses from putting the lives of others at risk.

Learn more about our Warning Signs Awareness Campaign and help prevent missed diagnoses and incidences of DKA at diagnosis. Want to get involved now? Sign up to receive a free awareness kit here.

Source: diabetesdaily.com

Can We Rethink Delivery of Essential Medicines?

By Inyang Ebong-Harstrup, Ph.D

The COVID-19 global pandemic has altered the way in which people with chronic illnesses interact with the world. While for most this means virtual doctors’ visits or increased emphasis on social distancing measures, for soon-to-be 13-year old Peter Anzovule Lagu and thousands of other children with type 1 diabetes in Africa, COVID-19 means a treacherous but imperative search for insulin.

Every month Peter leaves school and undertakes a costly six-hour journey by bus, motorcycle, and on foot to the Gulu Regional Referral hospital in northern Uganda in order to obtain the insulin that keeps him alive. However, Uganda like many other countries, responded to COVID-19 through nationwide public transportation shutdowns. This left Peter with a 70-mile walk as the only means of procuring his insulin and had to ensure that he could heed the 2 pm curfew that was in place. For a boy with erratic blood sugars and limited access to glucose, this journey could be dire. Peter is just one of many children with type 1 diabetes in Africa for whom the inability to access insulin would be and often is fatal.

Project Boda-Boda by SNF

Photo by SNF

In light of this urgent need, the Sonia Nabeta Foundation (SNF) promptly launched Project Boda-Boda (Boda-boda is a local term in Uganda that refers to a motorcycle taxi). This motorcycle delivery system mitigates against transportation closures and medical supply chain disruptions during COVID-19, by delivering essential medical supplies to children with type 1 diabetes (aka warriors) in even the most remote of villages. Through a small blue cooler attached to the back of a motorcycle, insulin is able to arrive at a diabetic child’s doorstep without putting them at risk of the current pandemic and the difficulties involved in their insulin procurement.

Project Boda-Boda by SNF

Photo by SNF

Concurrent with the transportation closures throughout Africa, the public-school system, as in many other countries, has been closed since March 2020. Moreover, the digital learning experience available to many in the developing world has limited use in the African context. This means that when everyday life resumes again, children throughout Africa might be a grade or two behind in school.

While this will be detrimental to the development of children throughout the continent, it will be especially harmful to children with type 1 diabetes for whom education is a major determinant of health. It has been proven that in the absence of leading medical technology that is accessible in the developed world, literacy and numeracy skills are essential in monitoring and controlling the complexities of type 1 diabetes.

SNF understands the importance of education in type 1 diabetic children’s health and therefore has been sponsoring the education of a group of children through a program called Project Mishra. SNF has found a way to continue these Mishra warriors’ education during COVID-19 through Project Boda-boda, using the same motorcycles that serve insulin delivery to drop off teachers during the educational shutdown.

Teachers commissioned by SNF travel to each Mishra warriors’ local village 3 times a week using these motorcycles. There they use the classrooms that SNF has rented to tutor warriors, like Peter. For Peter, who dreams of being a doctor, continuing his studies in science gives him hope that he will someday live a normal life and help warriors just like him. While children throughout sub-Saharan Africa have been deprived of an education during COVID-19, SNF’s Mishra warriors have been able to continue to progress in their studies, which is paramount in managing their type 1 diabetes towards good health outcomes.

Project Boda-Boda by SNF

Photo by SNF

Project Boda-boda’s success allows us to imagine what an Africa would look like if this model of educational and medical accessibility through motorcycles was exported throughout the continent. Imagine an Africa where the education system was reconstructed around trained, proficient, and adequately paid teachers being deployed to even the most rural and impoverished communities. Imagine a future for children, like Peter, where the chance to escape the poverty they were born into and become a doctor as they dreamed is possible.

Imagine an Africa where inadequately managed medical supply chains or pricey bus fares do not dictate whether a child has reliable access to lifesaving medicine that is so readily accessible in the developed world. Imagine an Africa where this model of access inspires partners and governments to rethink how to dynamically and innovatively bring medicine and teachers to children, no matter their affliction, throughout Africa and the developing world.

In Uganda, a country that is home to over 1 million boda-bodas, SNF intends to maximize this resource and scale up this program beyond the crisis situation that was COVID-19.

Source: diabetesdaily.com

From Coping to Healing (and Everything in Between): An Interview With Michelle Bauer

This content originally appeared on Beyond Type 1. Republished with permission.

By Makaila Heifner

If you ask us, Michelle Bauer is about as badass as you can get. An Iron Man competitor, a newly published author, and one of the biggest hearts in the diabetes community, she’s the definition of a game-changer. Michelle recently sat down with Beyond Type 1 to talk more about her journey through grief after losing her son, Jesse, her work thereafter to create the support hub for T1D loss, Jesse Was Here, and what’s on the horizon now that she’s published her book.

Beyond Type 1: What were you doing before you got into diabetes professionally + how did you come to get so involved in the community?

Michelle Bauer: I started my own at-home business, doing medical billing for mental health clinics. I had no interest in diabetes, even though I grew up with five aunts and uncles that grew up with type 1 diabetes. It didn’t really resonate with me until Jesse, my son, was diagnosed when he was three years old on March 3rd, 2000.

I pretty much dropped everything to volunteer for JDRF. Doing the JDRF Ride to Cure became something I was really interested in, and I became an Executive Director for them. From there, I did Ironman Wisconsin and got interested in trying to find people with type 1 diabetes who wanted to do Ironman. I filmed and produced a documentary in 2008 about 12 people with diabetes doing Ironman, called “Triabetes.” Back then, nobody was doing that.

From there, I was doing the Riding On Insulin snowboard camp for kids with type 1 diabetes. And once Jesse passed away, I dropped everything even more, and then became a director for Riding On Insulin and helped develop camps all over the world for kids to snowboard and mountain bike.

Today, I work full-time at Diabetes Daily, as their Sales Director.

BT1: What was it like when Jesse was diagnosed? Did you have any prior knowledge about type 1?

MB: I had a knowledge of it, but my knowledge was basically based in the 1970s and ’80s. I’m kind of wowed by it and I look back at my grandmother, who had multiple kids with diabetes so long ago when there wasn’t even blood glucose testing. They were peeing in vials that would change color and they had one kind of insulin.

I was very familiar with it, but they were all so independent. Everybody ran high because you didn’t know what your blood sugar was at any given point in the day, so there weren’t a lot of low blood sugars. It was a lot of high blood sugar and complications. When Jesse was diagnosed, I didn’t know as much as I should have, but it was different. The insulin pump was a new thing, and it was hard to get him on it when he was five. I had to fight to get him on a Medtronic pump. Continuous Glucose Monitors (CGM) just weren’t a thing yet; it was just a lot of finger pokes, and regular and NPH insulin back then.

Can you talk about what losing Jesse was like?

Take it back to 2010: I was very active in the diabetes community, and back then, nobody talked about people passing away from type 1 diabetes. Our diabetes educators never really talked about it being a possibility. All I ever heard was, “Oh, they’re fine. They’re going to live a healthy life. Don’t even worry about it.”

When he passed away, it was very sudden and unexpected. I was known enough in the diabetes community, from the documentary, that people knew who I was, so it put everyone in kind of a panic. That if this could happen to my family, it could happen to theirs. In the early days, the panic went the wrong way. People didn’t want me talking about it, they thought I was scaring the newly diagnosed families, and it wasn’t a very well-received conversation.

When I lost him, there was this feeling of dread – I thought I was going to lose my community. I’d spent so much time working in diabetes and all my friends either had type 1 diabetes or their kids had type 1 diabetes. I was thinking, “Well, who’s going to want to hang out with a mom who lost their kid to a disease their kids have?”

What happened was actually the exact opposite. My friends really rallied around me. They wanted me at events. They wanted me to talk about Jesse. I felt that the piece that was missing for me was wanting to know other people who were going through what I was going through. I started reaching out to other people and talked more and more about my loss, and slowly but surely, started the Jesse Was Here network. I just found it was really cathartic to talk to these other people who understood, who’d been in my shoes, and could relate to my pain.

Is it hard to be constantly reminded of Jesse through the work you do + how you cope when those feelings come up?

What I’ve learned over the ten years is that everybody grieves differently. My way of coping was to talk about him constantly. I found the more I talked about him and being involved with other people, I felt like he was living on in my life. People just want to feel like their loved one is still part of their lives and people don’t forget them.

It was very cathartic. When I look back, I went from coping to healing without even realizing it. Because I was coping every time a new mom called me that had lost their child and I would sob. I would stand in their shoes, I would feel the pain all over again. Now, it’s more of helping and healing. I don’t have to go back to that day every time I talk to somebody who’s lost, because now part of my healing is helping other people. But there are always days where I see a little boy who looks like Jesse or the smell of insulin sometimes gets me.

What are other ways you’ve commemorated Jesse’s memory?

Just weeks after he passed, I got an essay by him in the mail from a teacher. I was feeling really distraught, feeling sorry for myself, and trying to figure out what my path was going to be outside of diabetes because diabetes was no longer in my life. The essay could have been about anything he wanted, and it was just called, “My Mom is Courageous.” He had detailed everything that I had ever done for him in diabetes. He had detailed all of these things that he was proud of, like Ride to Cure Diabetes and Ironman. I knew, right then and there, I would continue on the Ironman route. I created the Riding On Insulin Endurance Team, where there were 63 of us who did Ironman Wisconsin. 36 of our teammates had type 1, which was probably one of my coolest moments.

Every year since he’s been gone, we have a rock concert called Jessepalooza, where we get local bands together and do auctions. It’s really an excuse to get together, to celebrate him. He played guitar and he played drums. We do that every summer, and we’ve had ten of those.

I was very involved in the JDRF Ride to Cure Diabetes when Jesse was alive. The year he passed away, I decided to go back to Death Valley, California and ride in his memory. The JDRF Ride Director, Allie, and the coaches at the time knew me very well, and they advised me that mile 23 was going to be a mile of silence from then on, in memory of Jesse; they came up with 23 because he died on February 3rd. And so Mile 23 has morphed into this amazing thing, where at the beginning of the weekend they talk about how there are 99 miles, to celebrate all that we’ve done towards a cure for type 1 diabetes, but there’s one mile to remember those we’ve lost. It’s meaningful to way more people than just my family; it’s in memory of everyone.

Talk to me about the book…

I have to pinch myself that it’s a real, tangible thing. About a month after Jesse passed away, I started writing. I felt like, “Well, maybe I’ll write down how I feel, for the first six months and maybe my writing will help somebody else not feel alone.” The book was supposed to just chronicle the first six months, but I kept writing. At the five year mark, it was ironic, because I was looking back, saying, “Wow. How I feel changed. I need to write about that.” At the ten-year mark, I thought, “Even more so.” I started to find joy in my life.

There’s a lot of satisfaction knowing that people have gotten their hands on my book and it’s helped them. There was a point where I was wondering if it would ever get published. But I was giving this draft copy to people as they were losing children and I knew it was helping them.

Then, a friend of mine who I kind of lost contact with saw me post on Facebook, and, when he realized who I was, told me he’d started a publishing company and that we should talk. That was in February, and by April 23rd, he had launched it. Since then, it’s been number one on Amazon in a couple of categories. We’ve sold a lot of copies, and what I love most about it is not only are people who have type 1 reading it, but a lot of first responders in the country are reading it. In Wisconsin, it kind of went out to all of the Wisconsin police as a resource for them. That’s one of the most rewarding parts, that it’s helping those beyond the diabetes community.

What are you hoping that people get out of your book + what have you learned about yourself through the grieving process?

I hope that it helps people who are grieving a recent loss to have hope that they can find joy again; that they’ll be allowed to push a little bit of the guilt aside, and that they feel their loss, but allow themselves to find happiness again, because that is what the people who are gone would want.

I’ve learned you’re not the only person going through something. You can’t just walk through Target and think that the grandma ahead of you is just living life with a grandchild on her hip. A lot of people have lost something big in their life. I’ve become a little bit more compassionate with other people, their losses, and their grief.

What’s next for you + Jesse was here?

We’re really hoping, through the Jesse Was Here program, to reach more siblings, and get them talking to one another. We do a really good job with parents, but we haven’t really done a great job with siblings. I’m also hopeful to re-engage public speaking in the T1D community and beyond.  I’ve been a keynote speaker on many occasions and hope to inspire others with a “Don’t Waste Your Pain” message of why it’s important to get involved.

Source: diabetesdaily.com

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