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The “D” World and What It Means To Be a Mother Of a Child With Diabetes

Posted on June 9, 2022June 29, 2022 by thediabeticjourney.com

The “D” World and What It Means To Be a Mother Of a Child With Diabetes

By: Ashlea Mello

When my son Landen was diagnosed with Type 1 Diabetes, I had a predisposed idea of what type of people were affected by diabetes and why they were diagnosed. I mean if you look around in America, everything we read is in regards to Type 2 diabetes. Along with ways to help prevent which include dieting and exercising.

Type 1 is the darkest corner of diabetes and when it becomes your life you become a passenger or a spectator in your own life; controlled by the darkness and fear that is Type 1 diabetes. And when it takes your child it is consuming and crippling.

Your whole life begins to revolve around caring for that child. Every waking moment with Type 1 Diabetes is consumed with my need to control, to manage, and to not feel what this diagnosis has done to my perception of myself in the walk of motherhood.

I went 10 years without so much as an emergency ER visit. Both of my children totaled maybe 5 antibiotics together in their lifetime and one day we woke up to a new reality. The reality that Landen’s body waged war on itself and he was no longer healthy.

He now had to inject into his body a man made insulin to stay alive because his body could no longer do its job to keep him alive. No one understands this loneliness like fellow D Moms.

They can look at this photo and see in their own life the depth of what I see and feel in this photo.

When I had this made it was to commemorate the closing on our new home. But Sarah happened to capture so much more. She captured how I have felt this entire year. I know I’m not alone in this fight against this disease, but the fight is isolating.

It consumes you and makes you question your capabilities, but everyday you prove to yourself again that you are capable. The fight is ever going, even when you close your eyes it doesn’t stop. Diabetes becomes more aggressive at night. While your guard is down it lurks in the shadows threatening the thing you hold most dear.

This photo represents so much to me. Calmness, loneliness, fear, separation, darkness… but there is light. Somedays I feel like all I’m doing is chasing the light. I feel I see it only to be drained from trying to obtain it. It slips my grasp and I am left exhausted and defeated.

Somedays I am there looking out the window of my life feeling the warmth of the light. Only to not fully be able to obtain it because we are trapped by the “D” world.

What It’s Like To Be a Type 1 Mom

Posted on May 20, 2022May 20, 2022 by thediabeticjourney.com

What It’s Like To Be a Type 1 Mom

Stacey Rose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Little Girl With The “Sugar Diabetes”

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

The Little Girl With The “Sugar Diabetes”

By: April Langston

Hi, my name is April and I was diagnosed with Type 1 diabetes when I was only 11 months old! Yes, you read that right 11 months! It was winter at the time and I was sick, the doctors kept telling my mom that it was just and ear infection, or just normal flu things that little kids get. They told her she was just an overly worrisome first time mother. Time passed and I continued to get more sick by the day until eventually, I wasn’t able to even recognize my own family.

At that point my parents rushed me to the doctor, my mom said that when the doctor was checking me over he immediately smelled a sweet odor from my diaper.. aka ketones. From there I was rushed to the hospital and then life flighted to KU Med. At KU I spent 11 days in ICU where my family learned how to check blood sugars, give shots, and count points (now known as carb counting). SCARY times!

Throughout my whole life there have been several people that don’t understand what diabetes is and to them I have been known as the little girl with the “sugar diabetes“. You know that kind that doesn’t make you fat, but the kind that you can’t have any sugar. Those of you with diabetes can relate to this I’m sure.

I am now a healthy 26 year old type 1 diabetic! I have gotten married, had two successful pregnancies with diabetes and have had the opportunity to work with other children going through the same struggles. I just celebrated my 25th diaversary!

There has been many ups and downs along the way. Teenage years were especially hard with diabetes. But I made it through. It’s a continuous battle daily, a battle that not everyone understands. Battling the shaky lows, the high blood sugars that make you irritated, the endless needles, and supplies, and blood sugar checks.

The battle is never ending. But we do it anyway. I fight not only for myself but also for my kids, my husband, my family, and friends. This disease may be part of my life, but it will never beat me. I will continue to fight day after day until there is a cure!

I think it is extremely important to raise awareness and to get the facts out about Type 1 diabetes. I also think it is important to know there are others going through what you are going through and that you have support!

With that being said….

To the worried mother or father of a diabetic not old enough to manage the disease themselves, THANK YOU. Thank you for being the rock that gets us through the day. Thank you for the sleepless nights and the endless worrying. Your hard work doesn’t go unnoticed.

To the fed up teenager that is just over it.. hang in there, I promise you one day it will get better. Do what you’re supposed to do to take care of yourself and embrace the fact that you are a little different than others around you. It will only make you a stronger person.

To the pregnant type 1 diabetic, constantly worrying about your blood sugars and worrying that you are going to do something wrong. I promise you that checking your blood sugar 10 times a day and constantly adjusting your insulin will soon pay off and you will be more blessed than you ever thought possible. Do the best you can do and know that it is all worth it.

To the diabetic just trying to get through the day. You got this! You will make it, you will kick diabetes butt and you have so much love and support in the T1D community!

Sincerely,
“The little girl with the sugar diabetes”

A Heartbreak Like No Other

Posted on February 21, 2022May 7, 2022 by thediabeticjourney.com

It’s a Heartbreak Like No Other

By: Jessica Hale

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

But the moment you realize that your child gets the fact that there is something not right with you and she tries to help. Everything that you’re supposed to stand for as a parent seems to be ripped out from under your feet, you are the protector, the comforter, the nurturer. But when that role gets flipped and you’re staring up at your 2-year-old who’s trying to help you with your low blood 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…

What Life is Like Being a Mom With Type 1 Diabetes

Posted on July 7, 2021July 26, 2021 by thediabeticjourney.com

What Life is Like Being a Mom With Type 1 Diabetes

Just like diabetes—motherhood is a lot of work.

Both are full-time jobs.

Not one is more important than the other.

For me— being a mom with Type 1 Diabetes, they both go hand in hand.

I get asked often ‘how do you manage?’ The kids—they mean.

Of course, that’s only half of the equation in my life.

Not many people realize the other half.

The half that I have to continuously battle every day.

Nobody understands how complex and intertwined diabetes is in every aspect of my life.

It’s certainly made me the strong mother that I am today.

But it’s also made me unlike other mothers as well.

—

I’m the mother who pricks her finger several times a day, and those numbers determining whether it’s safe to attend to my children.

The one who packs for an army to leave the house for a quick errand—but never being fully prepared enough.

The mother who has to take breaks constantly and has to eat the snack that my child wants desperately. Knowing that sometimes I have to come first.

The one who has to go to as many doctor appointments—if not more than my children.

I’m the mother who wants to vent to an open ear but doesn’t think they would understand.

The mother trying to lose weight, only to have a difficult time due to having to treat lows.

I’m one who carries guilt, wanting to be the best mother and not wanting diabetes to inhibit that in any way.

Having to steal a part of my children’s innocence by teaching them about this disease that I wish I could keep from them.

I’m the mother who worries about going to sleep at night—having the fear of not waking up in the morning.

Waking up some days feeling like I’ve been run over by a truck and just continuing to push through.

The mother who is constantly attached to devices, and always setting off alarms.

The one with erratic mood swings, an inconsistent schedule, and a low blood sugar peaking around the corner.

I’m the mother who carries around the weight of this disease on her shoulders every day.

Trying to care for others while having to care for myself first.

The one who worries every minute of every day—wondering if I’m doing this right.

I’m the mother who is concerned about the short term implications of this disease and having to accept the long-term effects that correlate.

The mother who works so hard every day at this disease so that I can see my grandchildren one day.

I may have diabetes—but diabetes DOESN’T have me. Diabetes has given me the strength to fight. But being a mother has given me the reason to fight.

Being a mom with Type 1 Diabetes — my life may not be ordinary, easy, or simple.

I may have my bad days, my setbacks, and my doubts.

But I go on despite them.

Motherhood and Diabetes - Not All Superheroes Wear Capes

Posted on May 3, 2022May 3, 2022 by thediabeticjourney.com

Motherhood and Diabetes

Becoming a mother has changed all our lives. We appreciate each day more than before. Every hug, every kiss, every “I love you mom“. Even though we make it look easy, it’s a constant struggle. We fight to be here, we fight for our health, for our future, and most importantly for our babies. Not a moment is taken for granted.

Not all superheroes wear capes. We often wear spit up, food, blood, tears, sweat, and even an insulin pump.

There’s never a dull moment being a diabetic mother. With all the difficulties that motherhood brings, we face diabetes on top of it all. But we continue to set the bar high, to do better, to challenge ourselves, and make our children proud.

They keep us going after all. Our children are our saviors, and we are blessed to be their mothers.

***

Happy Mothers Day

To the whole diabetes community for your strength, courage, and perseverance (you are all true diabetic superheroes).

Amanda

Being a type 1 Diabetic mom has made me realize how tough it is to raise a child that has diabetes…my poor mom and what I put her through….I only hope my daughters will not get diagnosed with it, but it is a worry that I have every day of my life…on the other hand, it never lets me forget how precious every minute of the day is and how much more I want to be in control of my sugars for the sake of my two daughters…I want to see them grow up, and they deserve to have a happy, healthy, mommy!

Katharine (Kathy)

Motherhood and diabetes has made me realize just how much of a miracle my son is and how much you can accomplish no matter what cards you have been dealt. On August 16, 2007, I was diagnosed with type 1 diabetes, just 2 months before getting married at the age of 26. I thought I would never forget that day because of my life changing diagnosis. For the following 5 anniversaries, I pondered on my new life while remembering with grief the life I lost. But on my 6th anniversary of diagnosis, my son was born. August 16th became the best day of my life instead of the worst. I had a rough pregnancy and even harder birth experience. And learning to care for a newborn while managing this disease was something I didn’t think I would find strength for. But then I realized my reason to go on, my reason for fighting this disease every day, was right in front of me. My son is now the reason I push through on the hard days. I do it for him. And I am thankful he gave me a reason to celebrate August 16th instead of mourning it. I am a diabetic mommy. And I am stronger person because of it.

Becky

Becoming a mom made me realize that I had to focus & start taking care of myself once and for all as I now had another person relying on me to be the best mum I could be. The hardest thing about being a diabetic mum is the niggling thought that my child could also develop the disease like me. I get terribly paranoid and often prick her finger in her sleep.

Crystal

Being a mom with diabetes had made me realize that not only do I need to stay healthy for myself but also my child who depends on me to take care of her. It’s gets stressful especially when your suffering from a high or low blood sugar and trying to take care of a little one at the same time and you get frustrated because you don’t feel good but at the end of the day you have that cute little face and slobbery kisses reminding you that it’s all gonna be okay and to stay strong. Some women don’t think they can do it. I know I didn’t but trust me you can and the outcome is definitely worth it!

Michele

Being a diabetic mom has made me…..stronger! I have been a Type 1 Diabetic since my son was 6 months and he is now 9…I also have a 4-year-old daughter. I am so blessed to have children who love me and watch out for me with my diabetes. They are trained on when I am high and when I am low…I have a Dexcom so they hear it go off and ask me if I am ok and if I need something. It has made me appreciate my family so much more because they care and do whatever they need to do for me. I have learned even though I am the only one with diabetes that it affects my family just as much as it does me. Some days are amazing…no issues…no highs or lows..great energy….and then there are the bad days…Where I’m unable to get the sugars to act right…moody…tired…but then I know I have to fight through those days to get to the great days ahead of me with my family!!! I HAVE DIABETES IT DOES NOT HAVE ME!!

Melissa

I think life as a diabetic Mom can be messy and unpredictable. The daily focus on T1D has shifted to taking care of another tiny human being. Both are so very important and seem to take over my world. Decisions often need to be made quick for both and without hesitation. Do I need to set my crying baby down while I treat a low or try to bring him with me in my arms while I can barely focus on unwrapping my fruit snacks. Do I need to leave Mommy and Me Yoga early while I am talking to a new Mom friend to grab a spare snack in my car? It has enabled me to become more aware, more empathetic, more cautious, and more scared. It has also taught me to live in the moment and really savor the small seconds with my son.

Beth

Being a mother is hard. Being a diabetic mom adds a level of complexity and stress that few other moms deal with on a daily basis. As a mother, with diabetes, of two children under the age of 3, I have learned a few things. I’ve learned that the adage of making sure you take care of yourself before you take care of your kids is important. Especially when your blood sugar is bottoming out, you’ve got two cranky & hungry kids clamoring for your attention and you don’t have enough brain power to parent, let alone treat the low sugar without going overboard and stuffing your face with half the pantry. Being diabetic & a parent has given me a darn good reason or two to take care of myself as best as I can so that those first & special moments my children will have as they grow up I will be able to enjoy them with my children and not observing from afar because it’s time for my dialysis treatment due to not taking care of myself as best as possible.

Jenni

Being a mother with diabetes has its highs and lows for sure. My daughter’s spunk, positive attitude, and kindness are worth all the struggles that come with battling a high blood sugar and just wanting to be alone or having to chug a juice box (or two) because we are in the middle of playing baby house. It’s not always easy but in the end, it’s always worth it!

Osob

Motherhood has its ups and downs and when combined with diabetes, the ups and downs come with a lot of highs and lows. I was diagnosed with type 1 diabetes at 2 years old, I am now 31 with two daughters both under the age of 5. I love being a mother but the hardest thing for me as a diabetic mum has to be the loneliness. It’s just me and the girls most days, the same chores and the same worries day in day out. Am I good enough for them? Are they missing out because of me being diabetic? What if I hypo? Who will help my girls? Diabetes is a lonely disease in its own right and having children has made me even more lonely. People tend to forget about you, the kids and the extra struggles you might be dealing with. I overcome this loneliness because my daughters need me. I love hearing their laughter, I enjoy the enormous smiles on their faces when they do something new. The innocence that I witness on a daily basis makes me feel appreciative to have them in my life. I can’t forget the hugs, kisses, and support that my daughter shows me when I am hypo. She gets me something to drink and is always aware of where my supplies are. Diabetes has made me a strong, independent mother. I plan in advance, make sure my daughters have a routine and in turn, this has made all of us happy and content. I’ve learnt that I am strong enough to carry children, to ignore the restrictions that people put on me and that at times, I need support and encouragement from family, friends, and professionals. My future is bright, even though I have type 1 diabetes, my children will be limitless to achieve whatever their hearts desires.

Karly

I have had diabetes for 15 years, I have one son, he just turned 2. Being a diabetic mom is an amazing challenge. Having diabetes has helped me to be a patient mother, a mother who knows that life is precious. Without my son, I can’t say how much longer I would’ve survived, but he saved me. He is why I test!

***Thank you to all the amazing ladies from the diabetes community for sharing their story***