Category Archives: type1diabetes

Before You Knew Better

The picture you see below, in the crazy cute Moo shirt, is of Bear – before.

Before his hair turned from ginger to blond, before his happy, dirty face had the soot wiped off of it, and before his little body began to turn against itself.

The picture dates back to the days before I knew anything about diabetes. The days where the most knowledge I had about diabetes was from visits to the midwives and having to drink a super gross, ultra sweet, orange liquid to check for gestational diabetes. The only other information I had about diabetes was that a friend of mine had passed away from it at a young age, having fallen into a coma alone in her apartment and found there three days later. I didn’t know what kind of diabetes she had, nor did I know there were so many different types.

These were the days before. The days in which I would have thought Jimmy Kimmel’s “diabetes joke”, though not a funny one (it just wasn’t funny), was just a joke. The days when I, like so many, felt people took themselves and things too seriously.

Before I knew better. Before it happened to my child.

So often the case, nothing is as serious or as dangerous or as important as when it happens to you.

I once got a call from the school because Bear had dropped his lunch on the dirty school floor after giving himself the required 5 units of insulin needed for this particular lunch, on this particular day. This was a dangerous situation. So dangerous in fact that I asked him if he was willing to eat his lunch anyway…the lunch that had fallen on the floor. Luckily someone was able to share with him half a sandwich and the remainder of the day was left with watching him closely.

In the months before my son was diagnosed he wasn’t himself. He barely smiled, he barely moved…we had to force him awake every morning and he no longer seemed to have much interest in anything. What’s more, he was aggressive, constantly irritable and he began to have pee accidents all the time, especially at night when his little body just couldn’t wake up to go to the bathroom. He was so hungry, but he could never satisfy his hunger, nor his thirst.

   

Unaware of what T1D was we thought it might just be a phase. He had just started school…he had a new baby brother. It seemed legit to think that he was perhaps simply rebelling, or at the very least regressing.

Little did we know.

Inside Bear a war had begun between his immune system and what it had mistakenly taken for an enemy – Bear’s pancreas. He began to lose weight as his body grasped for any attempt to save itself from dying. This is what is known as DKA, or diabetic ketoacidocis. Bear’s cells weren’t receiving the necessary sugar for energy, so his body began to break down his fat and muscle to get the energy it needed to move, speak and function. It was and is, an imperfect attempt at survival. The body doesn’t know this, it does what it can to survive, even at the cost of its own demise. It was Winter, he was 4 years old. In my (then) 14 years of parenting experience when a child seemed thinner it was likely due to a growth spurt. After all, he was eating verociously.

If that one doctor that I had taken him to for an ASD assessment had not said anything about being concerned about how much Bear was urinating, I very likely would have instead chosen to listen to my closest girlfriend about how I was definitely overreacting and that Bear was just going through nothing more then a typical bout of early childhood regression. If that doctor had taken the time to tell me why the excess urinating was of concern to her, I would have, with surety, taken Bear in to get checked out immediately. As it was, I hemmed and hawed about it for another few weeks before finally deciding to see if perhaps he had some sort of bladder infection. I have read enough accounts of undiagnosed children dying before ever seeing a doctor, or even after having seeing one (and been misdiagnosed with a flu) to know how lucky we are that my heming and hawing did not cost him his life.

When I think back to February 26th, 2013 – diagnosis day – what I remember most was my confusion. The day I took him into the Pediatrician’s, and within minutes after (over) filling the standard urine sample cup, a nurse was frantically poking his tiny virgin finger tip with a lancet and drawing blood to see if what they suspected was the case.

If I look back into my minds eye view, I can see the tight corridors of the pale blue/grey doctor’s office closing in around me. I must have been faltering in my stance, swaying perhaps, as I remember the doctor standing uncomfortably close to me while she said “we have to get him to a hospital immediately, we think he might have diabetes”. Images of standing at my friend’s funeral, learning for the first time that she had had diabetes and this is what she died of, flashed in the creases between my thoughts of “what do I do now?” And “what does this all mean?”. Squeezed into the emergency room at Sick Kids hospital the word ‘might’ that our doctor had uttered stayed stapled to every move and action that happened here after. Every doctor that entered was met with my denial and insistence that they offer up a different, more acceptable diagnosis to the one that they claimed “might” be it.

How could they know that I related diabetes to a death sentence? How could they know that with every “but the doctor said ‘might'”  (that I annoyingly reiterated to every doctor or nurse that entered) that I was begging for them to tell me my child would live. That I was asking them to reassure me that he wouldn’t die in his 20’s, alone in his apartment, like my friend Kate. Then again, maybe the desperation in my voice and in my eyes was enough to make it clear that I was in distress and needed reassurance, but who among them could promise me anything? Diabetes is mostly about paying really close attention, playing catch up, and trying to balance it within your life’s needs and wants. I mean, it’s more science-y and diet related than that implies – but you get it.

It’s an unpredictable disease that is affected by almost every action and inaction you take in life. Your medications, or lack thereof, your diet, your stress levels, your hormones, your growth, your immune system, even the weather…these are all components that can send someone who is diabetic from a good healthy moment, to a dangerous one. In seconds.

Each and every morning that a kid with type 1 diabetes sleeps in, there is a parent who walks the long walk to the edge of their child’s doorway hoping and praying that the child hasn’t somehow passed in the night from “dead in bed syndrome“. When you send your kid who just had the flu to school a bit earlier than you should, remember you might be sending a diabetic child to the hospital in turn. And when you choose not to vaccinate, remember you are choosing to put people with immune compromised systems in danger. You might even be taking their life in your own hands. I used to believe that my life and my problems were my own. I used to send snotty still quite sick kids to school because I had to work. I used to delay vaccinations, and cherry pick the ones I thought my kids should get, when I didn’t know better.

Before.

When the world was mine alone and my life and my choices and my opinions were for me only. When a joke was just a joke, and so get over it already – why don’t you? Right Jimmy?

But I know better than before.

Now I have suffered and watched my child suffer. I have read the stories of healthy diabetic kids dying in their sleep, of diabetic children dying from exposure to someone else’s illness. Now the fear of not seeing my child wake the next morning, or of spending time in the hospital because your kid had to go to school and tough it out while you went to work – now this fear is real to me.

I know now the reason you don’t joke about cancer is the same reason you shouldn’t joke about diabetes. I know now about all the different types of diabetes, gestational, type 2, type 1, whipples.

I don’t know everything, but I do know better. Better than before.

I wish I could have seen beyond myself before it had to affect me so personally. I wish I had thought to care about others before it mattered to me for me.

Before it mattered to me for him.

Today is World Diabetes Day. I hope you learned something you didn’t know before.

   
    

       
  

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Filed under diabetes, diabetes and illness, T1D, type 1 diabetes, Type 1 Diabetes, type1diabetes

This boy’s life.

Bear is giggling in the yard. Tig is too. I take a peak, Bear laughs and rolls on the ground in the dirt, he calls out “mommy!” He’s still laughing. He looks drunk.

“Mommy, I need you” his perma grin is infectious. Both Tig and I are laughing now too. Through his smiles and laughter he says “mommy, help, I need you. I’m feeling really really low”

Shit.

I run for the juice box, one left. ONE LEFT!? No matter, deal with that later. I toss it to him while I rush back for his meter.

He is still flopping around and laughing. But he’s not happy. He’s scared. “I can’t walk mum. I can’t see”. 

I got you baby. 

I check his blood sugar, 1.9mmols.

Fuck.

He finishes the juicebox in seconds flat. He is no stranger to this lifesaving technique.

“I need something. Something more” he says. I grab him three cookies and help him to sit down. How hard will it be to help him walk when he’s a big tall man? I wonder.

But who cares. I’ll just get stronger.

Tig, who is 6 years old, says “how can I help?” Just sit with him. Just sit and wait it out with him. We are all trained to help once we recognize that it’s a low, once the meter tells us so. But it’s hard to take Bear seriously when he’s still laughing and fooling around, especially when his blood sugar hasn’t yet been tested. So hard not to think he’s faking with that goofy smile plastered across his face and the exaggerated wayhe clumsily wanders around.

I’ve seen what happens on the flip side of those lows. When the smile turns to panic and his eyes glaze over. When he is no longer “drunk” but now he’s hallucinating and seizing. 

15 minutes later. He’s acting normally now. 

His blood sugar is good (4.4 mmols). He’a back to his old self  again and it’s as if nothing even happened. Just a moment in a day, not unlike most other moments in most other days. 

Sometimes he has great blood sugars throughout the day, and we rejoice and wonder what we did right to accomplish that. And other days we work really hard at keeping him out of emerg and we pick apart and analyze every move we made that day. 

How did we fuck up? We ask ourselves.

As parents of type 1 diabetics we spend our days walking this insane tight rope that we can never perfect or predict. Sometimes the emergencies are small, like this one was. But we all know that seconds are all that stand between these kids and possible seizure, coma, death.
It takes something out of you to live so precariously perched on the edge all the time. To always be waiting, watching, wondering – when will the next emergency happen?

He doesn’t know this, but this disease is breaking me. I am cracked and taped up again inside. 

He doesn’t know this, but he’s the tape.

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Filed under diabetes, T1D, type 1 diabetes, Type 1 Diabetes, type1diabetes

About A Boy. A Sweet Boy.

There are boxes piled up in the mud room. Empty flattened boxes. Waiting for me to make a move. Literally.

The stress level in the house is high. We don’t know where we are going next. So far all we know is that we can’t stay here. Our home is sold and we have to be out by 6pm on April 4th. 

But this post isn’t about that, it isn’t about me. It’s about my boy.

In 4 days he will have his third “Diaversary”.  

 

—> Diaversary: The anniversary of your diagnoses date, aka the time you stick it to diabetes no matter what the blood glucose number is. ex “We’re having cake for dessert to celebrate your diaversary. You’re 250? Then we’ll just have to bolus extra.” 

Three years of us all ‘dealing with’ and him having this disease, Type 1 Diabetes. Diabetes Mellitus. Mellitus, the Latin for “honey” “honeyed” and/or “sweet as honey”. Diabetes, meaning to siphon. In other words, to siphon or discharge honey/sweets from your body. “The Sugar Disease”.

He’s come so far this sweet boy. From injections to pumping to counting carbs and recognizing his lows. From the moments of triumph where he didn’t even move or fuss at all when the inset was put in, to the moments of fear where he seized in front of us and we finally used the glucagon that we were starting to think was just a Diabetes prop. And all the moments in between. 

All those moments that pass as if we’ve always lived like this. The night checks, the tantrums over wanting a juicebox when his meter said he was normal, the way we watch his moods for signs that he is high or low, the way every bad mood or bad decision on his part is double checked with a blood test. The way we look at him when his blood is in perfect range and he was still acting like an ass. As if a 7 year old boy can’t just be an ass sometimes. The way his sisters ask him constantly “can you eat that? Did you check your blood?” – and they just care, I know how much it drives him crazy – but they just care. The way that all the kids in class got a small bag of treats and he was given a bag of stickers this Valentines, and how cheated he felt. How angry I felt at the parent who would make him feel that way. But he was angry at diabetes, not at the kid or the mother. He knew they had made this choice thinking it was the right one to make, not out of ignorance so much as out of caring. Though the two can look alike from the point of view of a mother bear who only wants her child to feel included. But he was angry at the disease. This disease that makes him stand out as much as it makes him feel unseen. And this is our normal. 

This week is especially hard for me. All the house stress aside, this week brings back all the intense feelings from that day he was diagnosed. I remember weeks beforehand my confusion. 

“Why is he so aggressive?”

“Why has he stopped waking up at the crack of dawn and now I have to pull him out of bed?”

“Why is he peeing his bed?”

“Why is he so thirsty?”

“Where did his energy go?”

“Why is he so unhappy all the time?”

Like any good mother I went to my mother Tribe and inquired. My best friend at the time offered this: “He’s just regressing because of starting school” “four year old’s go through phases” “This is normal, don’t let yourself get paranoid”. But I knew, somewhere deep inside, that this wasn’t “normal”. Though I had no idea what it was – so I went with what I did know, Asperger’s. It had to be something. And he was so sensory oriented these days and aggressive that I thought “perhaps this is what AS looks like in him?”. At the assessment for AS I non-chalantly mentioned his outrageous thirst and bathroom escapades. I thought nothing of it. The Neurologist who was assessing him said “I don’t think he has Asperger’s Syndrome…but I think you should go to the doctor for a check up”. She didn’t elaborate. I didn’t ask her to. I didn’t think much of it to be honest.

Still, I did finally decide to take him in. Against the advice of my “then friend” and assuming this *had* to be something other than a phase (I suspected a bladder infection). We went to the doctor’s office. They asked him to pee in a bottle, both he and I knew that the little urine collection bottle they gave us was a joke. We had been watching him pee buckets for weeks now. But we did it and we were lucky that his urine only skimmed the top and didn’t spill over. His urine was colourless and cloudy – as it had been for a while. The doctor and nurse looked, what I thought, surprised or amused at the extent to which he filled that bottle. What I know now is that their looks were of concern and shock. Things began to move very quickly then. A blood test with a lancet and a funny looking hand held device (meter) was done. They moved in and out of the room all the while giving us gentle smiles and acting so calmly that it appeared just that – an act.

In those moments all you want to believe is that the act is real and there is nothing to be concerned about. All the while your parental instincts are firing off like firecrackers inside you and you don’t remember how to do anything anymore but comfort your child and like them – act calmly and smile gently. “All will be alright”

The doctor stood very close to me when she came to speak to me, as if she was expecting me to fall. She said “I think it might be diabetes. You need to go to the hospital emergency room right away. I’ve called ahead and you will have a room waiting for you, do you need to call anybody right now?”

I didn’t really know what diabetes was, not really. A friend of mine had died from it years ago, falling into a coma alone in her bachelor apartment and being found three days later. That was all I knew. But she was an adult – he was a child – I said to myself as if that made any difference. But the doctor said “think it might be” so perhaps it *was* something else, something benign… 

I hoped.

Even at the hospital I kept asking “but what else could it be?” to the doctors who were working quickly to get blood from him and put an IV in his tiny arm. Finally someone answered me. “Nothing. It can be nothing else. It is Diabetes”. I remember fighting that they had said “might”. I remember fighting for them to do more tests. A doctor came up to me and said “we don’t need to do anymore tests. We know what it is, it is diabetes.” Denial is such a strong thing. I stayed stuck in it all through “Diabetes Boot Camp”. I stayed stuck in it even when I thought I wasn’t stuck in it. His seizure was the moment where the last of my denial was finally shed. Like snake skin my denial had grown thin and transparent and much of me was new and tough and connected to his disease, but until the moment the skin of denial fully fell off that night in his bedroom while I held him so tightly and realized with open eyes that he has Type 1 Diabetes, and that it almost killed him. Until that night I had not realized how important my job really was. I have to keep him alive. Not like the rest of my children, but medically. I have to walk the tight rope for him till he can do it himself. And there is no net if you fall.

I. Have. To. Keep. Him. Alive. 

That isn’t dramatic, it’s fact.

Three years. Just a small portion of a lifetime of this to go. But sciencitific discoveries and experiments are growing in the way of a cure, and perhaps in his lifetime he will be able to say “I had diabetes”.

This Friday we will not celebrate his diagnosis, so much as we will celebrate overcoming the sadness of his diagnosis and embracing what he is apart form his diabetes. We will celabrate his bravery and his strength throughout this 24/7 disease. We will celebrate that we, as his family are doing our very best, especially through the really hard times and that we’ve made it this far this well. We will celebrate his awesome A1C’s and we will celebrate it all in the name of all the other diabetics out there who are fighting the good fight. The fight to stay alive.

Happy 3rd Diaversary sweet boy.

 

                                     

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I Think We saved Our Child’s Life Tonight

Our last night before a cleanse for the week, we decided to get one last hurrah in and were quite intoxicated when, watching a show downstairs, we were suddenly surprised to hear the frantic screams of our child up in his room. 

It was hard to comprehend at first as it was fast, mumbled and repetitive, but we soon realized as we ran up the stairs that he was screaming “MOMMY, I NEED JUICE!”

The hub started to check his blood immediately as I dashed down the stairs at full speed for the sacred life saving serum – a juicebox. I paused for only the briefest of seconds as I stared at the three last juice boxes we had in the house and decided to take them all up with me. I couldn’t believe we had been so stupid not to have his room stocked. Or that we only had 3 juiceboxes in the house.

2.6 mmols. That’s what his blood glucose level was at.

Not that low.

Low, but certainly not as low as he’s ever been. This is a kid that didn’t notice that he was 1.5 mmols once. So I thought “this is probably just a combination of a night terror (though he’s never had one before) and a low”. But then it got weird and scary. He adamantly refused the juice now and was shaking violently. No words, just violent jerking and screams. I pulled out the glucagon and followed all the instructions layed out before me inside the lid of the kit. Insert syringe, fill glucose bottle with water, shake well, suck up glucose, remove from bottle, stab child in thigh. Having been warned about giving too much Glucagon I only gave him half the dose. The tremors and jerking didn’t subside. Though now he kept seeing images of nurses coming at him with needles and he was violently trying to keep them away. Periodically he would look at me and through his sobbing would ask “what’s happening?” His words were mumbled and his jaw was clenched. Unless he was asking me what was happening, he didn’t know I was there. His eyes looked right through me and he begged for me to come to him. As I sat in front of him trying to comfort him.

His body jerked unpredictably and constantly.

At this point I started to suspect what we were witnessing was a hypoglycaemic seizure, specifically a “partial seizure”. His symptoms covered almost all the signs and symptoms from the onset to the actual thing.

X – Sweating
X – Confusion
Feeling faint or too sleepy

X- Shakiness
X – Feeling cold or clammy
X – Hallucinations
X – Unexplained emotional behaviors
X – Uncontrollable crying
X – Unaware of surroundings
X – Changes in vision
X – Loss of ability to speak clearly
X – Loss of muscle control
Muscle weakness

X – Anxiety 
X – A trance like state
X – Eyes staring into space
X – Eyes blinking rapidly
X – Inability to respond
X – Uncontrollable bodily movements like jerking
X – Involuntary muscle contraction
Unconsciousness
 

All but a few, really.

I knew this was different than Bean’s Febrile Seizure that she had at 18 months old. That one was scary, but there was something distinctly different about this. The one very significant difference was that the blood sugar irregularities that can cause a diabetic seizure can also cause the diabetic patient to lapse into a coma.

We knew it needed to be treated as a medical emergency.

We knew that he was either already having a seizure or that he was quickly on his way there. I stuck him with the rest of the remaining glucagon as my 200+lbs hub desperately fought to keep him from moving.

We called 911.

His eyes, like saucers, filled with terror looked out to who knows where while his body danced badly and uncontrollably on the hard floor. In a moment of “clarity”, or at least in a moment where he realized the hub was with him, he begged his father to keep “them” at bay. So my sweet hub sat there cradling Bear with his arm stretched out warning off the invisible nurses who were attacking Bear with needles.

Finally the glucagon began to take effect. He started to quieten down a bit within the folds of my hub’s strong and calming embrace. He asked for me and he requested to finally drink the juice box. I was talking to the paramedic rep on the emergency line at the time and decided to cancel the ambulance. The entire ordeal lasted from 10:34pm to 10:42pm.

8 minutes. 8 minutes that stopped time entirely.

But it was over now,
for now.

As we prepped him to check his blood again the silent tears escaped me. He was too out of it to notice, I’m thankful for that as the warm drops fell hard onto his meter. It is all too real that seizures in diabetics can lead to coma, which can lead to brain swelling and brain injury and all to often to death.

“Diabetes is a serious disease and if blood glucose levels are not regularly monitored and controlled, multiple complications may occur. A hypoglycemic seizure is one of these complications. It is triggered by dangerously low blood sugar levels.This condition may lead toa diabetic seizure. It can be fatal if not treated right away.”

We witnessed too many of those exact types of deaths over the Summer through the media. A little girl, no older than Tig at the time, died of “complications” due to type 1. She fell into a coma (this time because of hyperglycaemia). A boy about Bean’s age died at Basketball camp because of the staff ignoring that he was diabetic when he began to vomit (extremely dangerous to type 1 diabetics). And the list goes on spanning from children to adults.

I’m sitting here as he lays beside me. “mumma, can I sleep with you?”. You better believe it.

I don’t ever want to let you go.

I know he won’t really remember this night, but I will never forget. I can only hope it never happens again. I had just finished telling someone that in the almost three years that we have watched him deal with Diabetes we have never had to use glucagon or to call an ambulance. He has never once had a seizure. That is, until tonight. Isn’t that always the way. Just as soon as you feel confident it will never happen to you, to him, ever.

Not sure I will be able to sleep tonight. I am about to check his blood again and will likely do so multiple times till morning. His face is covered in black face paint as his baseball cheek lines he got from the party he was at today have been rubbed all over him through the thrashing of the seizure. He looks like a messed up clown, and although all I want to do is clean his face…I will let him sleep. Dirty or not he is my sweet son whose disease made me question whether his life was in immediate danger. He can get face paint on my sheets and stick his elbow in my ear while he snores beside me as much as is possible, because he is alive.

Alive.

As far as we can tell, we just saved our son’s life. Or at least, we very likely did.

And I will never underestimate this disease again.

  

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