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Growing with Type 1 Diabetes

Managing Type 1 Diabetes, can be a very lonely existence. Especially when you are managing it for your child. Without being engrossed in the care that is required, it is easy to watch the care being given with judgmental eyes.

People ask me all the time when Carter will grow out of Type 1 Diabetes. When I tell them he won’t they ask me when it will all get easier. The answer to this question, again is it won’t.

It’s difficult to wrap one’s head around the effort that is poured into managing a Type 1 Diabetic, it’s impossible to bring to light all of the variables in one conversation.The majority of the time, days are OK, and manageable. But there are those days where everything changes on a dime and care becomes almost impossible. An uphill battle that feels like you are climbing up the side of a glacier, barefoot.

We are rapidly approaching the time when Carter starts kindergarten. I will have to relinquish control of his care to the team at his school and I am extremely nervous. I am face to face with a mountain that I am not ready to climb. Allowing someone to care for my son, and having the trust in them to make the right decisions, in a moments notice is daunting.

Type 1 Diabetes is not a play by the book disease. It is an illness that changes minute by minute, based on many factors: activity, insulin on-board, excitement, fear, basal rates, growth, being nervous, food, or lack thereof, and the list goes on and on.

This is a milestone that we need to get through, a hurdle that must be traversed, but my heart isn’t ready. Beyond the exhaustion associated with Carter’s care which spans twenty-four hours a day, every day, the preparation for Carter’s entrance to school has me stressed.

I have faith that my son will be adequately cared for, with proper training, I will relinquish control and allow my son to take more accountability for his health.  It is amazing, as I am reminded yet again, how Type 1 Diabetes changes every aspect of life.  One hurdle at a time, that is what is required when managing Type 1 Diabetes.

Advocating for your Type 1 Diabetic Child

IMG_1250The day my son was diagnosed with Type 1 Diabetes, I became his biggest supporter and his advocate. I was determined to make this seem “normal”, familiar, less invasive than it inevitably was.  Yet advocating for your Type 1 Diabetic child is easier said than done.

Carter was diagnosed when he was 17-months-old, which was bittersweet. On one hand, he was so young that essentially this way of life would be all he knew, yet the terror that invaded me was numbing. He was so small, so fragile, and I didn’t know how to get through this catastrophic event, especially since I knew nothing about Type 1 Diabetes prior to his diagnosis.

I have found, that is the norm, most know not much about the autoimmune disease that affects more and more people each day. Type 1 Diabetes has been on the rise and the reasons as to why, remain a mystery. My personal journey, compelled me to educate when I could, mostly in an effort for my son to grow up in a world that knows more than before about what he carries so bravely each and every day.

Everyday is a new opportunity to educate those around us, those who know us, and especially those who are strangers. I have checked Carter’s blood in aisles in the grocery store, in line at Disneyland, in restaurants, basically anywhere and everywhere it is necessary. I also dose him anywhere and everywhere.

We recently were on vacation, and while waiting for our food, my children had made friends with a boy who was running around the grassy hills, he too was waiting for his meal. The boy was around 5-years-old, sandwiched nicely between Ashleigh’s six-and-a-half-years, and Carter’s four. The kids ran around and played for a good 10 minutes before both tables food arrived.

The boy visited our table often throughout our meal, and happened to be standing right next to Carter when I pulled out the shot of insulin and injected him. The little boy wretched back in panic as I dosed Carter and screamed, “What are you doing!?” I calmly explained that my son was a Type 1 Diabetic, that his body doesn’t make insulin anymore and he needs to inject it to eat and to stay alive. Though still affected, the boy seemed to understand.

Every action is education, my husband pointed out how I scared that little boy and my response was that I wouldn’t hide and shame our son in dealing with his condition. At the end of the day, those around us need to adjust. It can be done, it has to be done. I will never adhere to society and how uncomfortable those around may be, when my son’s life is on the line. THIS is our normal, this is what my son does to live. I am proud of his daily sacrifices to live and each poke, whether it is MDI (Multiple Daily Injections) or his Inset site changes for his pump, is a deceleration of his survival.

I had a brief conversation with the boy’s mother, and she was eager to quickly learn what Type 1 Diabetes meant and we discussed the signs. Small victories, as I advocate for my son. Spreading awareness is the most important tool we have to assist those in understanding this disease. Allowing those to see what our hero’s endure, is the first step in tolerance, a bigger step toward compassion, and an overall guide in breaking the perception that surrounds Type 1 Diabetes.

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 Impact of Type 1 Diabetes

Carter and Daddy beach June 2015It had been two days since I’d showered, standing in the bathroom in the same clothes I was in two days earlier when we took my son to the Emergency Room when he was then diagnosed with Type 1 Diabetes, I looked at my tired face trying to convince myself everything was OK.

It’s manageable, I told myself, nothing will change, I told myself….I was wrong, everything changed.  Everything continues to change.  Relationships,  outings, our daily routine, car rides, meals, baths, fun days, days filled with lethargy, too much activity, not enough activity, NOTHING is ever the same.

Having a child with Type 1 Diabetes is a lot like being the only married couple in your group of friends who has kids.  There is no common ground anymore,  ground where you can relate with what your other friends are going through.  Human nature propels you, when in this situation, to find new friends who have kids and you somewhat leave your old, single friends behind as you grow.

The same is true with a Type 1 Diabetes diagnosis, you are living a different life, in a different world, where relating with your daily reality as a caregiver to a Type 1 Diabetic child is difficult to understand.  People think you’re overreacting, or a helicopter parent as you monitor your child’s every move, every morsel they consume, in order to calculate the insulin dose they need to cover what they have ingested.  Too much insulin, they die, too little they die, it’s all too much to explain to someone who doesn’t know what it is like to live without a working pancreas.

Extended family, old friends, new friends,  there is so much to explain, all of the time,  so much to be judged on by the unknowing  eye.  In an effort to remain protected,  you disconnect.   Everything is too exhausting, and it’s too much to explain to those who have never gone through this crisis.

It’s refreshing when you surround yourself with those who have been through the dark tunnel you have.  Those who know what it feels like to always have the hair standing up on the back of your neck, those who reassure you that you’re not being overprotective, or ridiculous, or irrational, those who know what it is like to walk in to check your child’s blood sugar and breathe a sigh of relief when you pick up their hand and it’s warm.

The reality is that having a child with Type 1 Diabetes, death is always shadowing you.  Miraculously the disease is manageable, yet the effort poured into managing your child’s health is often overlooked.  Type 1 Diabetes, for all intents and purposes is a silent disease.  One that isn’t visible, and  one that shrouds the care that is necessary in mystery, but for those who live it.

As I sat there in that hospital bathroom, looking at my tired face, watching the lines being etched, and the grey hairs forming, desperately trying to convince myself this was all doable, manageable, I was unaware that in those moments I was shedding who I used to be.  That week in the hospital we were given the armor we needed to navigate through this life with a diabetic child, but we weren’t trained on how to navigate the existing relationships who had no way of understanding what we needed.  We didn’t even understand what we needed to survive.

Finding your new path while working feverishly to maintain some semblance of normalcy, leaves hurt feelings in the wake of your diagnosis.  It takes some time to be OK with those who judge or wallow in the hurt of being left behind.  After all, there is a bigger purpose here, a bigger calling.  Let those who don’t understand find their path, your time is filled, navigating the path toward those who do understand and who stand at the end of the tunnel with open arms to embrace you.

 

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.

Type 1 Diabetes and PTSD

Carter HospitalWhen your child is diagnosed with Type 1 Diabetes, you are left with scars. Scars you don’t even realize are there, until the scars get ripped open again.

Sick days have come and gone throughout the course of this past year and a half of managing my son’s Type 1 Diabetes, all without incident.  This week, everything changed.  The dreaded return to the hospital inched closer and closer.

Carter started a fever on Wednesday afternoon, an afternoon where we happened to be on our second day of a mini vacation and 300 miles away from home.   I monitored his symptoms and fever, and Thursday morning his ketone strip showed he had large ketones.  Carter hasn’t had ketones since his diagnosis in November 2013.

At first I panicked, then I called Carter’s Endocrinologist.  We walked through the care I needed to provide, and we headed home.  By Thursday night I had reduced his ketones from large to moderate.  By Friday morning his ketones were back up to large.  It was then that I decided to take him to the Children’s Hospital.

Since this was the hospital he was diagnosed at, walking in after almost two years was rough.  I felt a twinge if PTSD as we entered the hospital.  Being in the ER was new, but when we were admitted, walking onto the peds floor, the smell of it took me back to November 2013, Carter’s diagnosis.  I was overwhelmed with heartache.

Being a parent, especially one to a child with a disability, carries an extra heavy weight with it.  The decisions we have to make aren’t always the easiest ones, often times they involve admitting our child to the hospital where we know there will be pain and suffering in order to catch up to survival.

Watching my now 3-year-old struggle with fear while we sat waiting for the IV to be put in was horrible.  I wanted nothing more than to scoop him up and walk out of the hospital and go home.  I knew that wasn’t an option.  I knew if my son had any chance of getting over this virus without entering into Diabetic Ketoacidosis remaining and getting an IV was the only solution.

Being in the hospital with the year and a half’s worth of knowledge we reluctantly have learned made this stay extra frustrating and difficult.  Knowing the specific things that worked for Carter within his care and having pushback from the nurses who weren’t familiar with managing Type 1 Diabetes in such a young child was unbelievably frustrating.  Yet it reminded me that no matter the situation, even with medical staff, I am always my son’s best advocate.

Reliving what we went through at diagnosis, thankfully on a smaller scale, brought back so many old feelings, and unwrapped scares I thought I had successfully allowed to heal.  I started to get angry, but decided to pour that anger and sadness into fighting harder for a cure.

Although our latest overnight stay at the hospital was difficult emotionally and physically draining, it was necessary for Carter to get well.  It also allowed us as a family, included Carter to grow when it comes to managing Type 1 Diabetes in him.  We are now all acutely aware of new ways to assist in reducing a hospital stay, and were reminded how quickly things can change when it comes to life with Type 1 Diabetes.

Discharged

Ashleigh administering Carter's insulin - May 2014
Ashleigh administering Carter’s insulin – May 2014

When your child is in the hospital, there is no better word than “Discharged.”  I remember when Carter was finally on the Pediatric floor and out of the PICU, all I longed for was to be discharged and be heading home.  I asked everyday, when they thought we would be able to go home.  I was so tired of the hospital, I was tired of watching Carter’s frustration as he sat in a foreign bed, in a foreign place, without his sister, his toys, his comforts.  Then the day came, five days after the whole ordeal named Diabetes began, the nurse and endocrinologist walked into Carter’s room and notified us that we were to be discharged that afternoon before dinner.  The relief and excitement that poured over me was immense.  I immediately began packing up Carter’s room, called my sister who was watching Ashleigh and let her know we would be there that afternoon to pick her up.  I was elated, and when the nurse walked in with Carter’s care package filed with insulin, needles, lancets, test strips, etc. fear pummeled me.  I was lost in a sea of doubt, uncertainty, and hesitation.  I joked with one of the nurses that I would pack her secretly in my suitcase and take her home with us to administer the shots to Carter.  I wondered if I honestly could manage this monumental task that weighed heavily on me and my family.  Everything was riding on my success, based on my training, and retention of it as we walked out of the automatic doors of the hospital,  to our car.  Carter was overcome with joy when the outline of our car came into his view.  I remember picking him up from the wagon we transported him in and he hugged and kissed me repeatedly.  We drove home, I watched Carter looking out the car window, discovering the world for a second time.  He almost didn’t want to blink, in case he missed something.  He needed to see what in the world had changed since he had been hostage in the hospital for a week.  We quickly stopped by the store so I could grab something to make Carter for dinner, on his new “exchange diet.”  When I walked out of the store from my 2 min. shopping trip, Greg hurled the car toward where I was and with the window rolled down yelled out: “Carter’s blood is 500!”  I jumped in the car, we raced home, we had already failed.  Downtrodden we raced inside and gave Carter insulin and some milk while I quickly made him some dinner.  When we checked him 3 hours later he was finally in the ballpark of 160 and the sense of accomplishment was immense.  We had done it, without a nursing staff, without a doctor under our roof, we had safely brought our son back where he needed to be with the help of our training.   It was then that I realized I had it in me to properly care for Carter, we were given everything we needed to equip us in order to be successful.  The mix of emotions at the beginning of a diagnosis, as we muddled through were exhausting.  It’s through trail and error that we learned of long distance car rides and how the inactivity generates a higher blood sugar.  When I look back at those first few weeks and the trepidation I experienced, yet the perseverance I searched for, and see where we are today I see the confidence I have gained.  Carter now is assisting in managing his own blood, and Ashleigh is helping administering shots.  The word discharged shouldn’t hold with it fear, it should be the boost of confidence that it is meant to be.   Realizing that those who have been trained to save lives, at that point trust that you are able to step in and take their place on behalf of your child.  Expect that you won’t have all the answers, you will stumble, but you WILL find the answers, and you will prevail.  Confidence is a funny thing, most times it comes after one has been knocked down, yet once confidence starts building, the climb only intensifies.  “Discharge” was the beginning of our new lives, or new independence, and Carter’s health.