In This Journey We Have Learned Gratitude

Posted on March 1, 2022March 1, 2022 by thediabeticjourney.com

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.

The Tribe Of The Unglamorous Heroes Of The Night

Posted on February 23, 2022February 23, 2022 by thediabeticjourney.com

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.

We Are Not Letting Diabetes Win Anymore

Posted on February 22, 2022February 22, 2022 by thediabeticjourney.com

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.

Trying To Manage a So-Called Manageable Disease

Posted on February 21, 2022March 12, 2022 by thediabeticjourney.com

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.

A Heartbreak Like No Other

Posted on February 21, 2022February 21, 2022 by thediabeticjourney.com

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 sugar…it’s 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

Posted on February 18, 2022February 18, 2022 by thediabeticjourney.com

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.

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.

You Are Proof That Miracles Do Exist

Posted on February 12, 2022February 12, 2022 by thediabeticjourney.com

My Dearest Daughter,

It has been four years since the moment I met you. Four Years! They weren’t kidding when they said ‘time will fly by’. And it sure has. It’s all very bittersweet. It’s such a privilege to watch you grow up. To watch life blossom before my eyes. To see you become your own unique person. And while you have grown, so have I.

You see, when I knew you were coming into this world I was somewhat terrified. I always wondered how I would be as a mom. If I would be any good at it. But more so, I wondered how diabetes would play into my pregnancy and motherhood. With this disease that I’ve had since I was a kid, I was told could not only cause harm to me, but also to you if I wasn’t diligently on top of it. However, knowing the risks and everything involved, I wasn’t going to let diabetes stop me from my hopes and dreams.

Believe it or not, you saved me. In every which way. You were and ARE my driving force. I had to take a step back and see the bigger picture. It was no longer about me. It was about how I needed to take this challenge, and work harder than I’ve ever have before—and for many years to come. Because in order to give you the best life, I HAVE to be here. You broke down my walls, and helped me face my biggest insecurities, doubts, and fears.

It was because of you that I started on an insulin pump. I traveled 2 hours every other week, and 2 hours several times a week later on in my pregnancy just to hear your heartbeat. To be honest, it was actually a blessing to be able to get those extra scans and capture those special memories. I would lay awake at night to feel kicks and count them, I would test my blood sugars 10 or more times a day, and I hardly slept much at all. But all the extra work I put in for you to be here—was SO worth it.

I remember being so excited to find out you were a girl. I always envisioned of having a girl first. I guess god knew exactly what I needed. Now everyday when I manage my diabetes, things don’t seem that bad. I see your interest. I hear your concern over what my blood sugar is. Or if I ate something recently. And you realize that it’s a huge part of my life. It breaks my heart to have to explain this disease to you. That one day, you will have to know what to do in case of emergency. I never wanted to put this burden onto you, but it’s amazing how you embrace it, as if it’s all you know.

With you—my faith has grown stronger. I wake up everyday and am truly grateful that despite this ugly, cruel disease you have made me a mother. You are my first child, my only daughter, and you will always hold a special place in my heart. You have given me a new perspective on life. I no longer think of the short term, I think long term. I hope that I can set an example for you growing older to never give up, to be strong, to be compassionate, and to always believe in yourself.

Because you have shown me that miracles do exist.

I love you—forever and always

What It’s Like Being a Type 1 Diabetic Mother

Posted on October 7, 2021April 2, 2022 by thediabeticjourney.com

What It’s Like Being a Type 1 Diabetic Mother

(Guest Post)

(I guess this is not as much a story as it is a ‘thank you’. Thank you for shining some light on parents with diabetic children, and what it’s like being a type 1 diabetic mother.)

Working full time, being at every event of your child’s, tending to the house, cooking meals, laundry.. all is tiresome, but being a type 1 diabetic mother makes it so much harder! And those who are not diabetic don’t seem to understand. On the outside, I look healthy and happy, but on the inside, I have a body which is constantly attacking itself.

I worry constantly, not only will I be alive long enough to see my now 4 and a half-year-old son grow, but the possibility of him one day carrying the burden I do. I would love to have more children, but knowing how demanding and troubling this disease is on my life — I can’t bear to think of it.

I’m so lucky that to my son understands that ‘mommy taking shots and poking her finger is normal’, but what will he say to his friends? What will his friends say to him? I am trying to teach him to not be ashamed of it and that all people are different and it keeps me alive.

I remember vividly when I was a child, I wasn’t allowed on school field trips or to play with some kids because parents thought their child might catch it — Yes.. like the flu. I have been told it’s all my fault because I was FAT. Fat, me? I was an all-star volleyball player who was also on the swim team and wore a size 4 and was mostly muscle. I was not FAT when I was diagnosed at 3 years old. It has been a constant struggle that many don’t seem to understand.

There is so much more than what’s on the surface.

I feel guilty when i’m too tired from highs and lows to play with my son. I feel guilty when hes begging to show me something and I have to wait while i calculate and give myself a shot. I feel guilty that I don’t know what the future holds and I want to see him grow old and become a man. I feel guilty, and I have no choice but to teach him about this disease when he’s only a child.

(But again - I thank you for making me feel not so alone.)

I’m a D-Mom Battling Type 1 Diabetes Alongside My Hero

Posted on October 6, 2021January 29, 2022 by thediabeticjourney.com

I’m a D-Mom Battling Type 1 Diabetes Alongside My Hero

a heart set on pilgrimage (Blog) | Instagram | Facebook

I am a woman.
I am a daughter.
I am a sister, a cousin, a niece, a friend, a ballet teacher, a one-person business owner.
I am a wife.

And twelve years ago I voluntarily signed up for motherhood too. I am the mom of two beautiful girls. I adore being their mom. But one year and four months ago, my previous notion of motherhood underwent remodeling and I involuntarily got signed up for a title I wasn’t even aware existed.

I became a D-Mom.

I wish I could say that the D stood for something like Dazzling or Diligent or Delightful or Dynamic or Darling or Desirable or…

Instead, the D stands for (daunting, dangerous, defiant, depreciating, disheartening) DIABETES.

On 9 March 2015, our eldest daughter was diagnosed with Type 1 Diabetes. And just like that, our family of four got to wave our pre-diabetes lives goodbye. Together we set out and embarked on a whole new, unfamiliar and scary journey.

A good deal of who we were and where we were heading changed…at the same time much of all of that stayed the same. We still are altogether the same people we were before my daughter’s diagnosis…except…we are…altered.

Redesigned. Revised. Modified. Remoulded. Expanded. Evolved.

On a daily basis all four of us get to cultivate bravery and courage; fight battles against worry and all-consuming fear; display our best mathematical skills; employ our finest planning and administrative abilities; pray for a cure…and enough grace and strength to get us through the present day; speak a language stained with medical jargon; fight battles against worry and all-consuming fear… Oh. I already said that.

The moment Type 1 Diabetes, an incurable, chronic, autoimmune disease, arrogantly waltzed into our lives, our lives were altered forever…on various levels:

Even on the level of Motherhood. I went from being a Typical Mom caring for her flock to being a typical mom AND an on-call day/night nurse AND a medical supervisor AND a nutritionist AND a worrier aspiring to become a warrior instead AND a mathematician AND an assistant pancreas AND an advocating voice AND an awareness spreader AND a cheerleader AND a night time blood glucose checker AND a silent crier in the shower AND a researcher AND an educator AND a calculator AND a well timed clock AND a prayer warrior AND a diary keeping track of doctors appointments AND a prescription fetcher AND a co-glucose-tabs-and-snack-carrier AND a double checker of all things T1D related in our household AND a triple checker in that regards AND a quadruple checker for just in case AND an occasional tired and emotionally drained individual.

Yep, I became that mom. I became The D-Mom. My husband became The D-Dad. We became D-Parents. Our youngest daughter became The (supportive and encouraging) D-Sister. My oldest daughter became The D-Warrior. We became a D-Family.

The day my daughter was diagnosed I met Type 1 Diabetes face to face for the very first time. I didn’t know a single person with this disease. I didn’t know a single thing about this disease. Boy, has that changed…

I have learned that Type 1 Diabetes:

Is time consuming;
That it requires daily maintenance 24/7, 7 days a week, 365 days, non-stop, no breaks, zero time off, no prospect of a vacation…ever;
It is a bulk of never ceasing math;
It is quarterly trips to the endocrinologist and a list of specialists you have to work your way through every year;
It is uncountable trips to the pharmacy;
It is struggling with health insurance companies;
It is constant loads of info;
It is to wave certain aspects of freedom goodbye;
It is coming to terms with a chronic disease that will never go away;
It is seeing your daughter prick her finger up to 10 times a day;
It is trying to figure out how stress, a growth spurt, puberty, illness and allergies, heat and vigorous exercise might impact her blood sugars on a single day;
It is to watch your daughter stick a needle in her leg or stomach and give herself 5-7 shots of insulin daily;
It is to hold her and cry with her when she has had a hard day;
It is tiring;
It is chaotic;
It is frustrating;
It is emotionally draining;
It is lonely;
It is hard;
Sometimes it is very scary;
It is ridiculously expensive;
It is to mourn and grieve the loss of a life without diabetes;
It is to stare fear in the face every new morning and then to choose to not be overwhelmed or be defeated by It…Until the next morning when we start this battle against fear all over;
It is a phone call from the school to inform you to come fetch your child because her blood sugar is too high and it won’t come down;
It is to get up at night to test your child’s blood sugar when she is sleeping;
It is to know how quickly you can find yourself down in the valley of the shadow of death, and it is to cry for those families who made one last trip there and came out having had to leave someone behind…

For weeks after my daughter’s diagnosis:

I functioned on auto pilot. I was numb. I was stunned. I was completely overwhelmed by every aspect and detail of this disease and the implications it held for my daughter. The impact it had on her daily life was heartbreaking for my mommy heart to bear witness to. Every day I get to watch my daughter live with a complicated and high maintenance autoimmune disease. Every day she is presented with challenges and demands that comes with this disease. Every day she has to manage this disease in order to stay safe…and alive. Every day. Not some days or most days. But. Every. Single. Day.

BUT, before it gets too depressing…

Being a D-Mom is:

To watch the bravery unfold;
It is to witness courage manifest;
It is to see a fighting spirit being cultivated;
It is to know that there is Grace enough for the steps of each day;
It is being “hard pressed on every side, but not crushed, perplexed, but not in despair”;
It is to hear a small young voice being taught to advocate, direct and teach;
It is to experience the expansion of one’s boundaries of understanding and heartfelt empathy for other parents and families whose children are living with unseen chronic diseases.

I am very aware that we are not alone. There are thousands of brave children doing Type 1 Diabetes around the globe. Every day. And there are thousands of D-Mom ‘s and D-Dads who care for and support their children day in and day out, finger prick by finger prick, shot by shot, pump site change by pump site change, endo appointment by endo appointment.

Even more so there are millions of people who live with other unseen chronic diseases. I never used to know that almost 80 autoimmune diseases existed. Most of these diseases I haven’t even heard of. And for every single one of these people living with one (and sometimes even more than one) of these diseases, there was that moment when they heard their diagnosis for the first time; and a journey that began which they never imagined they will embark upon. There are millions of people with stories to tell. I remind myself of them often. Because my heart has embraced a new level of empathy I never knew was possible.

I’ve learned so very much these past 16 months. I’ve met incredibly brave little people fighting big health battles. I’ve met brave D-Mom ‘s and D-Dads, D-sisters and D-brothers, D-Warriors – young and old. And they are all so much more than this disease. Our family is more than this disease. So is my daughter. So am I.

I have discovered that I still am that Typical Mom I used to be – in spite of the perception that I lost her somewhere. That Typical Mom who loves, and hugs, and disciplines, and lose her temper, and give little backs back rubs at night, and sing wake-up songs in the morning, and oversee (low carb) lunchboxes, and buy groceries (and testing strips), and kiss little cheeks (and little poked fingertips), and whisper I-love-you’s, and reinforce the importance of manners, and bark at clothes lying on the floor, and cuddles her babies… Yes. I still am her. Perhaps an altered and evolved version of her, but I still am her.

I am a woman.
I am a daughter.
I am a sister, a cousin, a niece, a friend, a ballet teacher, a one-person business owner.
I am a wife.

I am a D-mom.

Mother Of a Type 1 Diabetic (My Mother’s Perspective)

Posted on July 22, 2021January 15, 2022 by thediabeticjourney.com

I asked my mother to write about my diagnosis and the years following. I’ve always wanted to get her perspective as being a mother of a Type 1 Diabetic. Now that I’m a mother, I can empathize with a mother’s love and how far it will go. I wanted her to share her thoughts, fears, and doubts. Now that I’m older and wiser I’ve been able to mourn the loss of the life that didn’t consist of diabetes—and close that chapter in my life. Finding out that diabetes has made me who I am. That when I thought I was handed the wrong card, it actually led me to where I was meant to be. It’s made every success, achievement, or victory just that much sweeter.

Mother Of a Type 1 Diabetic: (My Mother’s Perspective)

As a mother your first instinct is to love and protect, that is what I sought out to do. From the day she was born, I felt an overwhelming sense of obligation to fulfill.

But nothing prepared me for what life had in store. In 2002 when she was at the age of 12, I woke in the middle of the night to my child rocking in our recliner. I found it quite odd and I asked: “Brittany what’s wrong”? She replied, “mom I have no saliva and I’m very thirsty”. I knew then something was terribly wrong.

I took her of course to the emergency room. We sat there for what seemed like an eternity. I was told she had to be transported to All Children’s Hospital. Her blood sugar was over 900! By the grace of GOD, she didn’t slip into a coma. That was the day that changed our lives as we know it—even more so for hers.

It felt like someone ran me over. “Type 1 diabetic?” I asked in disbelief. “For how long?” Forever I was told. I didn’t know what to do. I was now a mother of a Type 1 Diabetic, and trying to process all of this at once. I knew nothing about this disease, for this was all new to me. This child that I vowed to protect, I couldn’t protect her from this. I felt like I had failed her and gave her this burden. I didn’t know quite how to feel. I was angry, hurt, and utterly scared for her.

It was life changing. I didn’t know how to keep it together but to see her face look at me, all I knew was that she needed me for strength. I watched her sleep every night, I set my alarm clock because I had to wake her to make sure her blood sugar didn’t drop. I was terrified! This child is my world and I learned quickly how serious this was.

As she grew older of course, like any teenager would she resented being a Type 1 Diabetic. It’s hard enough trying to understand life especially when you’re coming into your own. There’s enough pressure on kids and I tried understanding the pain of what she was feeling. No one her age that she knew was going through this. Having to take injections every day and checking her blood sugar several times a day. Being a mother of a Type 1 Diabetic was hard especially when she was growing up. I knew how difficult it was for her during these years being a Type 1 Diabetic. I wanted to take this from her but I couldn’t.

She was rebellious as all teenagers but more so in the fact, I don’t think she felt normal or understood. I watched her go into the very dangerous low numbers. It was tough because she was incoherent, I couldn’t get her to eat or drink anything. I would call the paramedics and it would take sometimes 20 min. for my baby to come back. There’s nothing more frightening in the world to fear that your child could slip away from your fingertips in the blink of an eye.

It is an absolute life changer, however, it’s not a death sentence. I’m truly grateful we survived those close calls. Looking back I wish I had educated myself more, was involved in support groups and learned more about diabetic cooking tips. I could have never planned for this, but I dealt the best I could and stayed strong for her.

My beautiful daughter has overcome huge obstacles and knows the adversity and the many challenges of this disease. I admire her for her strength and her ability to turn a negative into a positive. Her beauty not only radiates on the outside but on the inside. Her devotion to this cause is not only helping those who need the support, education but also striving for a cure.

I know that because of her energy and drive, she’s going to make a difference. I believe she has found a purpose in this life—that some of us search for in a lifetime.

Category: Parenting