Tag Archives: Diabetic Toddler

Barely Hangin On

Carter 4. 2016I’m not quite sure what landed me at this edge, feeling like I am barely hanging on. In a way, it feels familiar, like I have camped out here before, frequently.

Maybe the gateway to this campsite is illness. Any sickness that Carter contracts brings an anxiety that is difficult to describe. Most minute illnesses we get through without any issue, then there are those that land my son in the emergency room. This past Thursday was one of those times.

We had been battling the stomach flu, it began with Natasha, my 11-month-old, worked its way to Ashleigh, my six-year-old, and finally latched onto my three-year-old Type 1 Diabetic son. Both my daughters threw up twice, replenished fluids and rested and recovered within a full 24 hours.

Carter, began throwing up at 8:00 am and by 6:00 pm he had thrown up 8 times. He couldn’t keep anything down. It was at that point that I called the endocrinologist. Although his blood sugars were good, I could see the beginnings of something brewing. Dehydration, Diabetic Ketoacidosis (DKA), when Carter’s eyes started to look sunken in, I knew it was time to take him in.

Lately, I feel as though I am starving for mercy.  It has felt like one thing after the other as I struggle to hang on to the edge of the cliff I fell off of three long years ago.  Watching my son battle Type 1 Diabetes has been humbling, heartbreaking, and unequivocally stressful all at the same time.

I am tired of the guess-work that it requires to keep my son alive.  I hate that I can look in his eyes and see that he’s heading toward a low, or a high blood sugar, yet at the same time I am grateful.  Grateful that through immense trial and error I now know how to see it in his demeanor before it strikes.

I’m sad that the hospital is a close comfort, because I know that they have everything at their disposal to save my child.  I hate watching my son be brave for all the pokes, all the site changes, all the IV’s, and all the scar tissue which is evidence of his condition.

Being on the brink of a breakdown seems to be where I have set up camp.  I don’t know how long I will stay, or if my camp will ever move on to acceptance.   I do what I can to find a way to survive where I am, never having all the answers, always having to fight, not just for my son’s life, but for understanding from the non-diabetic community.

Those who don’t live this life, 24/7 don’t understand the difficulty.  In a way, I feel it is my duty to report what we go through.  Maybe to raise awareness, but mostly to raise empathy.  I would hate to watch my son navigate through an environment where no one knew what Type 1 Diabetes entailed, and had no idea how hard it was to live in a world that requires constant vigilance and monitoring.

Carter was released 5 hours after being admitted to the Emergency Room, luckily that is all he needed this time.  I caught him in dehydration, and the beginning of DKA.  I’m glad that I caught it, I’m happy that I stopped DKA in its tracks, but angry at the same time that my son is continually haunted by the possibility of an illness where he is worse off than his sisters because of a misunderstood autoimmune disease that doesn’t play fair.

I would be remiss, if I didn’t document these trails, if I didn’t talk candidly about the world that the majority of Type 1 Diabetics live in, just on the brink, the brink of  life, which consequently also is the brink of insanity.

I believe that is the cliff I have been hanging on for the past 2.5 years, the brink of insanity.  Knowing at any moment my son could land in the ER, knowing that my tireless efforts throughout the day, are futile, knowing that even though I live in “groundhog day” the outcome of each day managing Type 1 in my son, always delivers a different outcome.

It’s unfair, it’s inconsistent, but it’s our reality.  It’s our hell, it’s our purgatory, until there is a cure.

The Vulnerability in Type 1 Diabetes

I hopeVulnerability, it’s not something we as human beings embrace. Vulnerability has been linked to and associated with weakness, obligation, onus, all descriptive of feelings that are capable of haunting someone. The vulnerability in Type 1 Diabetes is hard to escape. I have been vulnerable since my son’s diagnosis in November of 2013. It feels like feeling vulnerable is the norm, and feeling secure is a fleeting feeling that I experience once in a while.

Being so fragile, constantly, is exhausting. I work continually to clamber back toward who I used to be, overtly confident, non-affected, gliding through life seeming to have it all together. Now if I can make it to my kids bed time without a major break down, I have conquered the day.

Living life under a microscope, essentially in a pressure cooker, the majority of the time, I feel like I am about to burst from all the pressure. Most days, I feel like I am barely hanging on.  This has been exacerbated this week, as Carter started the pump on Tuesday.

We had finally, in some ways, fell into a routine.  We knew how Carter reacted to dosages of insulin, how much he needed at any given time, and would just inject him to correct a high, or to dose him to cover what he was about to ingest.  His a1C was good in October 2015, 8.0.  I was thrilled, but at the end of the day, it all could be better.

I decided I would get Carter the pump, mostly because it would mean less pokes.  I envisioned the ease of dosing him remotely, letting him graze throughout the day to his heart’s content, and allowing him that milk he pleads for at 2:00 AM at his night check.  After all, it would just require a quick press on the remote, and he would be dosed!

I didn’t account for the complete change that starting the pump introduces.  I came home from our appointment Tuesday, the appointment where I had to put in my first infusion set.   I succeeded, but felt suffocated by the feelings of vulnerability that took over, and not only have they not left, they have grown in the 4 days since we began this new journey.

At the end of the day, it feels like Carter was diagnosed all over again.  I wasn’t prepared for the emotional toll starting the pump would take on me.  Waking every 2 hours through the night to check his blood is exhausting.  I feel so tired and so defeated, but I cling to the understanding that once I master this learning curve everyone is going to be happier.

Dealing with failed sites, an infected site, and every other issue known to happen when on the pump within the first week has been overwhelming.  But I watch the joy on my son’s face when he looks down at the pump as it vibrates, injecting insulin.  He beams, and lets me know he’s getting his insulin.

Being able to have the freedom to not get so many pokes, I watched Carter start to eat more.  The unspoken toll that this all takes on the diabetic is heartbreaking.  It is so hard to comprehend what they go through, and not get so caught up in the emotional toll it takes on the caregiver.  At the end of the day, feeling vulnerable doesn’t hold a candle to the peace my son feels being on the pump.

If I have to learn a difficult new task every hour of every day to ensure that my son feels as normal and happy as can be, I will do it in a heart beat.  Watching his happiness grow, along with his appetite, makes this transition less anxiety ridden, and more exciting for the possibilities Carter now has to live life to the fullest, despite having Type 1 Diabetes.

 

*My son is using the Animas Ping Pump.  For more information, visit Animas.com

Tired of Type 1 Diabetes

www.wrha.mb.ca
www.wrha.mb.ca

I’m tired.  Tired of the blood checking, tired of the dosing, tired of the mathematical calculations, but most of all, I’m tired of watching my son battle this disease every minute of every day.

I’m tired of the constant changes, tired of the not knowing, tired of the what ifs, tired of grieving.  I would love a break, it’s something I fantasize about, dream about, something I know is not a reality.

I think back to those first 17-months of my son’s life, it was a different time back then.  It was a time where we took every minute of every day for granted.  We were carefree, before I even had a concept of what the word carefree really meant.  We lived “normal” lives, with the “normal” worries.  What we were going to wear that day, what we would eat for dinner, where I would take the kids to get them out of the house.

Now there is so much effort put into Carter’s care.  It’s exhausting.  We went to look at insulin pumps today, and I wasn’t prepared for the emotion it would bring to the surface.  It wasn’t long ago that we were thrust into this life, with no choice, now here I was looking at technology strewn across the table, and presented with the choice of which small device I wanted to pick to assist me in keeping my son alive.

I am grateful for the insulin pump, which will allow greater freedom for Carter to be a child, though connected to a device, he won’t have to slow down to get a shot.  This in turn will allow him to not get poked multiple times throughout the day, it will be one bigger poke every 3 days and then but for the cell phone shaped pump he will harness to his clothes, Type 1 Diabetes will be somewhat less invasive.

For all intents and purposes, today should have been a joyous occasion, well as joyous as picking out hardware for a disease you hate could be.  But as we sat and listened to what training would be required, how the pump differs from multiple daily injections, the risk of Carter being able to unlock the pump and dose himself enough insulin to kill him, the weight of this change hit me.

All in all, I know this is the right choice, the right change, it will carry with it a learning curve, as any change that sustains your child’s life should.  I know I will have better management of Carter’s numbers, he will be in range more, he will be free enjoy being a kid, etc. etc.  Yet there are aspects that are a scary new.

As I sat tonight meditating on the choices ahead of me while out to dinner, I sat at the table with Ashleigh and Natasha while Greg took Carter to the restroom with him.  As we sat at the table, across the way from the bathroom, I heard Carter’s screams and yells.  I looked up and met Ashleigh’s sad eyes as she said to me: “Carter just got his shot.”  It was affirmation that I’m making a better choice for my son.

I hate Type 1 Diabetes, and ultimately, I’m just tired.

Heartbreak Heard Around the World

Know the symptomsHeartbreak, disbelief, anguish.  These are the feelings I had this weekend when I heard news of Kycie Terry’s passing.    For six months I have followed the story of the beautiful, bright-eyed 5-year-old who won our hearts with her story of courage, and strength on the day she was diagnosed with Type 1 Diabetes in January 2015.

Followed the next day with the passing of another angel, David Brown II at the age of 4.  Another story of Diabetic Ketoacidosis (DKA) that could have been avoided had they been checked at the hospital with a glucometer.  David’s blood sugar was 770, which tragically ended his life when his brain swelled, and his kidney’s eventually failed due to the time with such high blood sugar.

These two tragedies arrive on the heels  of a week riddled with frustration within the diabetic community.  The CrossFit slander campaign, which incorrectly linked sugar to all diabetes diagnosis, was an exhausting hole to dig Type 1 Diabetes out of.  It’s incorrect information, such as CrossFit was spreading, that promotes the tragedy that is DKA.

People don’t automatically think their child could be suffering from the early onset of Type 1 Diabetes, because they don’t know the signs, they equate the disease to sugar intake and they couldn’t be more wrong.

Extreme thirst, immense urination (more than usual), significant drop in weight, sleepy all the time, these are a few of the symptoms that would be a reason to go to the ER and have your child’s blood sugar checked.

Diabetic Ketoacidosis is becoming an epidemic, my family is so fortunate to have made it through a DKA diagnosis.  Carter’s blood sugar was 880, higher than David’s and Carter was so much smaller.  My heart aches for these two families who lost their children this past weekend.  I can’t imagine the grief and anguish they feel, seeing how close we were to losing Carter, or having life altering complications, make me see how miraculous it is that Carter has had zero complications from his stint in DKA.

There is no excuse for doctors to not have the ability to check blood sugars with a simple prick to the finger.  One drop of blood makes all the difference, one drop of blood could save lives.  Misinformation needs to be corrected, and not just by the diabetic community.  It’s the responsibility of doctors to get behind this cause, we need to guard our children better.

The heartbreak heard around the world this weekend, was unnecessary, and due to misdiagnosis.  Now is the time to make changes, advocate for the children who aren’t able to advocate for themselves, it’s not just their health that is at stake, it’s their lives.

To the families of Kycie Terry and David Brown II, my most sincerest heartfelt condolences for the loss of your two precious babies.  Kycie and David will not be forgotten, their lives have meaning and they will help fuel the necessary changes that need to be made in order to protect future children from this horrible disease.

WE NEED A CURE.

 

Coping with New Changes

Ashleigh Carter and Natasha June 2015It has been 6 weeks since we brought our newest bundle of joy home, our daughter, Natasha Marie who was born at the end of April.

Her birth was obviously anticipated, and we were so excited to welcome her, my husband and I, but none more than our oldest two Ashleigh and Carter.  They couldn’t wait for her arrival and when she finally was born they never wanted to leave her side.

To say I was ill prepared to manage life with not just 3 children where the oldest is 5, but also with a 3-year-old Type 1 Diabetic in the mix is the understatement of the century.

I thought back to bringing Carter home, the transition seemed so fluid.  He was just a welcome addition to our home and though the adjustment period lasted a bit, soon we were a well oiled machine just with one extra amazing addition to the home.

Adding a third child is challenging, but adding one into a home where their closest sibling is a Type 1 Diabetic is difficult.  There are many times that I feel as though I gave birth to twins.  My newborn needed me that second, as did my type 1 diabetic son.  The choice was easy, take care of the diabetic first, as consequences of making him wait a second longer could lead to catastrophic results.  It went against every instinct that my recently launched into postpartum self knew.

Waiting with my Type 1 Diabetic son, and lately having to coax him to consume carbs and sugars to fix low blood sugars, is unbelievably difficult with a crying hungry newborn in tow.

However, we have adjusted.  Carter is learning to take a more active role in his care, Ashleigh is learning how to be the best helper ever, and Natasha is learning how to have patience with me when unforeseen circumstances arise.

As stressful as it is, through working together, we have all found a new routine.  What I find interesting is at every doctor appointment since Carter’s diagnosis, my blood pressure has been uncharacteristically high.  Just more proof of the hidden price we as parents of Type 1 Diabetics pay.  We are continually under stress, every situation can change in an instant and we are fighting for our child’s life.  Cut to a split second later when all has been fixed, we are celebrating our success.

This life is a definite roller coaster ride, filled with many highs and lows, and I’m not just referring to blood sugars.  With every defeat and with every victory, there are lessons.  Stopping my life because we were handed an unforgiving disease wasn’t an option.

We choose to live and not survive, and part of living is growing our family and giving my children a new wonderful sibling who can join our constant fight and advocacy against Type 1 Diabetes.  Natasha is so small, and has yet to realize the strength of her big brother and big sister.  In her short 6 weeks of life, she has proven, already, to have the same fighting spirit.  A spirit that will reign supreme when it comes to assisting in making sure Carter’s rights aren’t forfeited, or that he is treated differently due to his disability.  Yes little one, you fit on just perfectly and are already such a blessing.

The Ups and Downs of Type 1

maybeI hate today, actually a better statement would be, so far, I hate this year. When it comes to the management we have endured pertaining to Type 1 Diabetes, 2015 hasn’t been handed to us on a silver platter.

A lot of this is to be expected when you have a young child with Type 1, especially as they go through growth spurts and the like. Teething, growing, illness, these are all things that affect the way Type 1 Diabetes behaves on any given day, at any given hour.

Today, we have been fighting low blood sugars. I’ve always said that battling high blood sugar numbers is aggravating, and battling low numbers is terrifying. When Carter’s blood sugar is low, a different kind of care is required.  More vigilance, more supervision, and this is required whether it is daytime or nighttime.  More so if it is in the middle of the night.

Tonight it seems no matter what I do, I can’t get his blood sugar to rise.  Luckily he is hovering in the 80 range, which for a person without Type 1 Diabetes is a perfect resting blood sugar.  Tonight however, I’ve fed Carter a peanut butter teaspoon, 8 oz. of milk, and half a juice box and he is 88.  This means, without the carb loading I’ve done with him this evening, he would most likely be reading at a blood sugar of 50.

Now he is full of liquid and food, and I have to check his blood every hour, making sure that he doesn’t dip too low and become hypoglycemic.  This turn, is deadly, especially in the quiet of the night.  So I will set my alarm for every hour and monitor my son, making sure he makes it through the night.

I think this is one of the biggest misunderstood measures that is rarely discussed outside of the diabetic community;  beyond the frustration, beyond the exhaustion, we are responsible every second of everyday to keep our child alive.   Failure isn’t an option, and discovering that with each minute, the stakes change.

Truth be told, it is so difficult to bring understanding to those who don’t live this life day in and day out.  Hearing the horrific, difficult issues we as Type 1 Diabetic parents face daily, doesn’t resonate with the proper mind numbing fear that we experience throughout our days.

The feelings of helplessness, fear, anguish, anger, determination, pride, joy, all overlap and it’s hard to realize which feeling you are in from one minute to the next.

But the one feeling that is never missed, is once you are out of the woods, and you get the blood sugar reading you have been working so hard for, there is an overwhelming feeling that washes over you.  It is welcome and sought after continually, and is known as relief.

Type 1 Diabetes and Anger

diabetesthoughts.blogspot.com
diabetesthoughts.blogspot.com

“Don’t hurt me mommy!” This is the new phrase that comes out of my son’s mouth lately when I check his blood or give him a shot of insulin.

Type 1 Diabetes and anger walk side by side, and as Carter gets older he is manifesting a hatred for the life he has to lead.  I understand, to a degree, his anger.  I work hard to not be angry daily dealing with this disease.

It’s harder lately, as Carter pushes back when it comes to his care and the management of this horribly frustrating disease.  As his mother my heart breaks into pieces hearing him plead with me not to hurt him.  Then I am stuck with the difficult task of trying to explain to my not even 3-year-old son that in order to live I must poke him.

This year has been really hard so far, we have battled illness continually in some form since January, and feeling crummy already, then having to get pricked and poked in order to make sure DKA doesn’t add fuel to the fire was rough for Carter.

There have been many days this year that I have wanted to throw in the towel, but then remember I can’t.  Type 1 Diabetes never clocks out, there is never a down time.  The only options you have is to find ways to push through the exhaustion and the disappointment that greets you daily.

My prayer is that Carter will understand soon how because I love him so much I monitor his care so closely.  I know he will grasp this concept eventually, yet now there is an added dread to the blood checks and shots that exist throughout our day.

I watch my son wince when I grab his hand, just to hold it.  Every time I touch him, he anticipates a poke.  I take every opportunity to just hold him and cuddle with him, in an effort to reinforce our bond and connection minus the diabetic care.

I know this phase will end at some point, yet being in the midst of it is trying…to put it nicely.  I don’t know if my anger toward Type 1 Diabetes will ever completely subside, and now watching my son’s anger grow is a hard thing to witness.  I remember that his journey is much different from mine, and I must allow him these feelings in order to move past them.

“The forces that tend for evil are great and terrible, but the forces of truth and love and courage and honesty and generosity and sympathy are also stronger than ever before.”

Theodore Roosevelt