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.
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.