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What It’s Really Like To Have a Child With Type 1 Diabetes

Posted on June 6, 2022September 21, 2021 by thediabeticjourney.com

What It’s Really Like To Have a Child With Type 1 Diabetes

By: Angela Ameno

The last thing a parent wants is for their child to experience any pain. When they do, as this can often be inevitable in life, you help them up, dust them off and move on looking ahead to better days.

As the parent of a child with Type 1 Diabetes –

There is no bandaid, no kissing the pain away, no moving on without this disease in tow. That is hardest part of this. You can tell them they will be ok, tomorrow will be better but the truth is life is completely changed and there are no days off from this battle.

I will do anything for my child and have done everything I could to ease this burden since his diagnosis three years ago at the age of 9. I count carbs, weigh foods, make sure he always has his meter, snacks, and juice. The days march on without much thought to the routine of it all.

Your child looks normal to the outside world even though every second is consumed by this lurking burden.

Will his sugar be too high for test taking? Will it be too low for gym? Did I count lunch carbs correctly? It really can be a guessing game most of the time.

Then the night comes.

The nights are dark and it’s not always just because the sun has set. I still check his blood sugar while he’s asleep. Stumbling, trying not to wake him. 2 A.M. or 3 A.M…sometimes every few hours. Sometimes his tiny fingers poke through blankets as if he knows I’m coming and will keep him safe.

Other times I work to gently pry his arm from under his cocoon. Nights when he’s high he doesn’t even flinch as I find an open spot of skin for his insulin needle. There are nights when he’s low and the juice goes down quickly and others when he fights to suck on the straw and begs to go back to sleep.

It’s also in these quiet moments that it can hit me all over again. The uncertainty of it all. The forever of it all as I look at the hardened tiny fingertips spotted black from the thousands of needle pokes. I’m ok for now because I know I’ve got this, I’m somewhat in control.

But what happens when he’s grown and off on his own? Did I teach him enough about management? Will he wake up to check his own blood sugar? Where will the juice boxes or chocolate milk be? Would he know that although this is hard and constant that it should never stop him from anything?

This is probably the scariest part of it all. Teaching my child with type 1 diabetes to live with it and be healthy and confident will be my greatest accomplishment and give me peace.

However, my worry will never fade.

I have some more time for that so for now I’ll continue to find his little fingers under his covers and kiss him on the head a few extra times a night.

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.

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 It’s Like Being a Type 1 Diabetic Mother

Posted on October 7, 2021May 13, 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 he’s 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, 2021June 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. Remolded. 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) lunch boxes, 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.