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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.

How Life Changes after Diagnosis

struggleAfter the immediate devastation of a Type 1 Diabetes diagnosis for your child, the ebb and flow of the severity of how life changes after diagnosis is difficult to describe.

On one hand, the diagnosis brings a determination you didn’t know you had.  A determination to enjoy the fullness life has to offer, a thirst for the faith you may have haphazardly thrown on the back burner, a newfound purpose, and all of these are found at the bottom of the hole you are forced to attempt to crawl out of.

As we approach our three-year mark of Carter’s Type 1 Diagnosis this November, I look back and see that I have been through the many stages of grief many, many times.  These days, it’s not really clear what brings the grief stages again.  Maybe it’s the after summer blues, maybe it’s watching your son explain what his insulin pump is to those who stare at the beach or the pool, maybe it’s the built up exhaustion, who knows, but I do know that some season’s suck more than others.

Watching your child grow up, carrying this burden is bittersweet.  I remember standing in the hospital during diagnosis week, and wishing for the day when Carter was able to understand, when he would then be able to  take an active role in his care.  That day has arrived, and it’s more heartbreaking than I anticipated.

Watching your child realize they are different from their peers is hard.  Birthday parties, getting together with their friends, going to the beach, going to the pool, having to constantly interrupt his fun to do a blood check, or correct puts a damper on his fun.

I don’t think the change is a one time event, I believe after a diagnosis of that magnitude, we are ever-changing, always evolving and taking on what comes next.  We are always growing, individually and as a family as it pertains to Carter’s care and management, most often within each moment.  No one day is ever the same, and the worries that each day bring are always different, and changing.

The hardest days for me, are the ones where I can sense Carter is tired of it all.  On those days, my heart breaks just a fraction more.  I would give anything to take this burden from my son.  It affects our whole family, as my daughters are left with a shell of a mother most days.  Lately, exhaustion takes over and I walk through the day an ill tempered zombie.  Always tired, always worrying, always only half present in what is going on as I watch Carter like a hawk.

Will it get better?  Until there is a cure, I don’t think so.  We have decent days, and have fallen into a routine that works for us, but it isn’t void of immense effort and complications.  The frustration and disappointment are too much to bear some days, but we preserver and move on.

My son and daughters, exemplify the forbearance of those who know where this path leads.  We’ve traversed this road more than once, and we know that we come out of these trials stronger.  All in all, I see how their brothers health worries them, especially Ashleigh.

We fall down.  We pick ourselves back up.  We cry, we laugh, we are like any family, we just cling a little closer, because we are faced with the threat of possible loss every minute of everyday.

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.

Switching to an Insulin Pump

www.medtronicdiabetes.com
www.medtronicdiabetes.com

Researching insulin pumps is bittersweet.  It’s exciting knowing that there will be more freedom for your child, yet at the same time, it’s a daunting task.  Searching for the best “device” to keep your child alive, was never something I thought I would have to do.

I look at the features of these insulin pumps and am impressed with how I will be able to remotely dose Carter from another room, as opposed to having to chase him and nail him down to inject the insulin up to eight times a day.  Then of course, the stories from other pump users about the tightening of numbers, better A1c numbers, etc.  The pro’s seem to negate the cons.

Yet the closer I get, my nerves make me wonder if I am strong enough to go through with it all.  Learning a new system, one which may take up to a month to fully understand and tweak to get Carter’s ratios right, it all seems counter-intuitive.

I am comfortable with Multi Daily Injections, but deep down I know Carter isn’t.     Carter is who this is ultimately about, although I know the one larger poke every 2-3 days will take some getting used to, Carter will enjoy being more “normal” while walking through the most not normal circumstances, having to manage his Type 1 Diabetes.

Carter’s health and well-being are the most important thing to me, no matter what I have to do to accomplish that.  Yet, I feel like I am yet again grieving this diagnosis, though we are almost 2-years into it.  Up until now, Carter’s Type 1 Diabetes was virtually an invisible disease.  One that was only noticed when I would check his blood or dose him.  Now, wearing a pump, it will be an advertisement of his condition.

All this makes me realize how fragile I still am.  When we started giving Carter shots, we didn’t have a choice.  It was a necessity in order to keep him alive and have him survive.  Now I have a choice, it’s odd making life saving choices for your preschooler; and honestly given the choice, I would choose not to have to deal with Type 1 Diabetes.

Ultimately,  all I’m trying to do is raise a healthy and happy little boy who doesn’t feel held back.  Right now I believe the pump will give us that.  It’s hard enough having Type 1 Diabetes to manage, I’m striving to give my son just a little bit more freedom, and hopefully through this new learning curve and process it will help me feel less broken.