But it almost did
I am carrying that
In every step
In every breath
I am having a difficult time
Figuring out how to handle the grief
Of an almost
My daughter Shai wrote that.
Like her, I too am having a difficult time.
It’s been exactly one week since it happened. My body is tense today even though I can’t picture it. I have no residual memory of that night, not in pictures anyway. I can still hear it, but I can’t remember what he looked like that night anymore, or how raw and wretched the whole experience was.
But I can still hear it.
Every scream and cry. I can hear the sounds of Kevin pleading with the 911 operator to hurry and Nava yelling out “HOW CAN I HELP!?” And “I DON’T KNOW HOW TO HELP!” And “WHAT CAN I DO!?”.
I can even hear my own desperate yells into the abyss begging the 911 operator through Kevin to “please please hurry!”
I know what happened because while I sat beside his hospital bed listening to the sounds of the machines monitoring him I wrote it all down. But I can’t see it in my mind’s eye. Kevin and Nava are a different story. They can’t ‘unhear’ it or unsee it. Photographic memories are common with people on the spectrum. Nava can’t even talk about it. Who knows if she’ll ever be able to.
Like Shai’s poem, I don’t really know how to feel these days. I’m sitting in a strange limbo where I grieve for the son I didn’t lose over a moment in time I can’t even properly remember. And to my unfortunate surprise, that grief doesn’t dissipate even as the days pass, though he still lives. Instead it sits in the air, a heavy humid air, filling my lungs and holding down my heart. A sadness that doesn’t make sense for all intents and purposes because I should just be happy, because he lived.
And all this over a Sprite. He just wanted a Sprite.
He was 10 years old now after all, and the rule always was that when you were “double digits” you could have pop sometimes. Of course this was the general rule for all our kids, who we rarely allowed pop to anyway. But Jax had diabetes so the rule folded and wrinkled for him differently than it did for his siblings.
Yes, Jax *could* have pop now, but he still had to abide by the diabetes rules we had set upon him and “wait till he was low”. We thought this was a reasonable request, especially since he’ll likely get more pop in his entire lifetime from addressing low blood sugars than his younger brother Phineas ever will. We thought we didn’t have to explain further, this was just “the way it was” for Jax, didn’t he understand that he was just different?
Perhaps he thought that with perfect blood sugar readings he was entitled to a treat. Perhaps he WAS entitled to a treat!
Perhaps I should have considered that a treat is ok every once and a while. Wasn’t I the spokesperson for him and his disease, always touting that he was allowed to have anything he wanted as long as he gave himself insulin for it?
Perhaps I should have been teaching him all the ins and outs of diabetes instead of taking over the reigns and waiting till the “right time”, till he was older, to properly educate him. Why hadn’t I taught him about overdosing yet?
Perhaps I was afraid that this child, my child, who already had to deal with so much on the daily might be scared if faced with even more reality. The truth about his own mortality and how close to death this disease keeps him to it. Always.
His blood sugar readings had been perfect all day.
I mean perfect.
I’m surprised a tiny diabetes fairy didn’t appear to grant us a free wish – that’s how perfect his numbers were. And when he came in from playing hard at soccer and asked “can I have some of this Sprite?” I said: “no, wait till you go low”. And when he went to get a snack from the kitchen I said: “don’t give yourself any insulin for that snack, you’ve just played soccer and you’ll go low”.
In telling him why he needed to avoid the Sprite I gave him the information required to get that Sprite. But in all these years I never gave him the information and the autonomy of his own disease that he needed to keep himself safe. I told him the insulin would make him “go low” and he wanted to “go low” to attain that precious Sprite. I didn’t ever tell him that insulin was as dangerous as it was necessary. I didn’t think I had top, not yet anyway.
I gave my impulsive, often unthinking, 10 year old the tools for his own demise.
At bedtime Kevin had tested his blood sugar and was pleased to see a perfect blood sugar reading of 6.2mmols. Without extra technology (like a CGM) to inform us otherwise (like double arrows pointing downwards warning of a dangerous low to come) we assumed Jax was alright. Better than alright, perfect.
A mumble. That is all we heard, and barely at that. We would have ignored it if something inside us hadn’t said “better check it out”. Instincts I guess.
“Get down here and help me” Kev called up the stairs. His voice slightly panicked. I was immediately reminded of the night Jasper had a seizure when he was younger. There was a pause in my thoughts where my own panic set in briefly as I caught myself thinking “could this be another seizure?” but I dismissed the thought as quickly as it had appeared.
When I got in to the boys room Kevin asked me for a juice box. They were right on the dresser so I was surprised he required my help for such a simple task, but he was fumbling with the meter case looking for Jax’s blood testing kit and saying something under his breath about how he hadn’t been able to find it where he left it.
I came towards Jax with the juice box, slightly annoyed that my husband couldn’t complete this task by himself, but could tell immediately something was wrong as soon as I looked at Jasper. He wouldn’t look at me and he refused the juice box. His eyes stared straight ahead in a terribly frightening gaze. He jerked away from me as I tried to push the juice box to his mouth and as he began to shake and tremor I saw the disconnect happen in real time. This wasn’t like the other seizures I had seen before, I began to panic now too.
I knew the juice wasn’t going to get into him, though I did continue to try while I yelled at Kevin to get the glucagon ready. Kev handed me the syringe and glucagon powder.
And then *I* fumbled.
And then I bent the fucking needle.
To add insult to injury I then went on to contaminate the sterile needle by clumsily and absentmindedly attempting to straighten it with my bare hands. Realizing what I had just done as soon as I’d done it I yelled at Kevin to get the only other one we had in the house. The one in my purse.
Jasper’s body was now contorting and stiffening – he stopped breathing and twisted into weirdly uncomfortable positions. I watched him gasp and then turn blue again. I watched him foam at the mouth and grit his teeth together as if he were being executed by electric shock.
Everything was so much what you expect death to look like and feel like. I kept thinking if I didn’t move fast enough I would lose him.
I had no idea how much or little time I had. This was the most violent and gut wrenching seizure I had ever witnessed. I was positive that I was watching his last moments.
I had already begun to weep fo him. For the loss of him.
I didn’t know how to save him.
I worked much more slowly and methodically with the second glucagon set while still thinking “how can this happen? How can I not save him? How can I watch him die!?” If ever there was a moment of all or nothing, this was it. I took a deep breath and filled the vile of glucagon powder with the water solution and shook that into a combined mixture. It seems strange to think that in a moment of such chaos and emergency I would have to slow right down and focus on this task. With shaky hands and baited breath I successfully filled the syringe with the life saving mixture and felt more confident about the situation till I turned around to discover he was wearing a fucking onesie and I needed his thigh!
As I struggled with pulling the onesie down to expose his thigh his head jutted back and stretched his neck long in an unnatural way. His eyes rolled back and his mouth gaped open. His hands stiffened into permanent reaching claws and his legs folded into himself as if he were still in the womb. I thought I was too late but I had to try anyway, so I stabbed him in the thigh.
After the glucagon injection I tried to hold him down with my body. This was what Kevin instructed me to do as per the instructions of the 911 operator. But also I was trying to soften him because he was so stiff and I wanted to hold him one last time while he was still alive if I was going to lose him that night. So I held him on his side and I squeezed hugs into him and sobbed. And his body began to tremble as the glucagon kicked in. He began to moan and flail – so I excitedly tried the juice again, but he spat it in my face. I knew we weren’t out of it.
I kept screaming “WHERE ARE THEY!? WHY AREN’T THEY HERE!?” To which Kevin would respond: they’re coming. I promise. Try to calm down, he can hear you.
Maybe he could hear me. My begging pleas of “stay with me” and “ please don’t die”. But how could I calm down? I didn’t know which breath would be his last.
That is how close to death he came.
We stayed at the hospital all night. They admitted him and kept him on heart monitors and IV bags filled with glucose that were being replaced as quickly and often as he went through them. He kept going low and we couldn’t figure out why. The Doctors and I came to the assumption that his pump must have malfunctioned. We wondered briefly if maybe Jax had accidentally overdosed himself, but decided that he couldn’t have – wouldn’t have – in the end.
We were wrong.
He told me, after I had decided that I was going to rip off the “defective” insulin pump (burn it) and sue the company, that it was actually him who had given himself almost 16 units of insulin. I must have looked shocked and dazed because he continued of his own accord: “I wanted the Sprite mum, so I gave myself insulin when you told me not to. And when I still wasn’t low by bedtime, I gave myself more insulin.”
In fact he gave himself 7.90 units the first time and an additional 8 units half an hour afterwards.
In fact he wouldn’t have made it to midnight if we hadn’t heard that quiet mumble.
In fact his heart would have stopped.
In fact he would have died.
Dead In Bed Syndrome they call it. They don’t know much about it except that the diabetic is found dead in their bed by morning. They believe their hearts stop when they go untreated for hypoglycemia.
A CGM could not have prevented the lows he suffered that night as he had quite vehemently overdosed himself. But it would have alerted us that something was wrong and then kept alerting us till we did something about it. If we had missed that tiny mumble, as would have been easy to do, the CGM would still have sent the alerts to our phones and alarmed and alarmed and alarmed again till we dealt with it. In fact we likely wouldn’t have put him to bed as we would have been preemptively dealing with the lows.
Kevin told me later that Jasper was speaking or groaning or making any sounds when he first went down to check him after hearing that tiny mumble.Jax was lying on his stomach staring at Kevin wide eyed. And then his leg jerked.
The silence of his seizure was deafening.
This means that if we hadn’t heard him during that first seizure so many years ago that the likelihood he would have died that night was just as high. Especially if we didn’t religiously check his blood sugar at midnight and 3am every night.
Our doctor once told us that seizures don’t happen to all diabetic children, that they were rare, and not to worry. Our nurse had told us to stop checking him at night so we could rest. She said, he’ll wake up and let you know if he’s low. She promised us this. The group of parents of type 1 diabetics that we met with in support groups when Jasper was first diagnosed told us different.
The diabetes community, not the doctors or the nurses, but the parents and diabetics themselves said “stay alert” and “don’t listen when they tell you not to check them during the night”. They pleaded with us “check their BG’s twice a night no matter what anyone else says because this disease is insidious, unpredictable and all too often deadly.”
But that was 5 years ago. Today we have the tools to predict these things, the tools to save their lives before they are in too much danger. If we had had a CGM Kevin would have seen more than just a perfect BG reading at bedtime. But CGM’s are expensive and not covered by OHIP. Those of us with low or one income families must learn to live without it or must ask for help (beg) from others to gain access to these incredible life saving devices.
Had the tv been louder, or the AC on, we wouldn’t have heard him. Had we listened to all those medical professionals when they had told us not to worry, and that it wouldn’t happen to us, and to sleep throughout the night…we might very well be a family of 5 and not of 6.
But the parents who had lost their children, or come close like we did this time. They fucking knew.
As I struggle through the PTSD of that night I see more clearly than ever the enormous amount of people suffering with TYpe 1 Diabetes that are still so misunderstood and neglected by society and the government. I find it difficult to grapple with the fact that the Canadian Government (in Ontario) only JUST started covering life saving prescriptions for diabetics (and only prescriptions not all the overhead that also has to be purchased to manage this disease) and that this only covered those under 25 years old. And this is in Canada where healthcare is amazing, so you can only imagine how much worse coverage (or lack there of) is for Americans.
And I wonder to myself, as many of us do, how can a life saving device such as a CGM be widely and openly recognized as life saving, but then not be covered by our governments who claim they hold the best interest of their people at heart. Especially as not all children with type 1 diabetes can be educated properly about their disease as we had wished we had done preventatively with Jax.
Although we are now telling him everything about his diabetes, we know their are children with Type 1 that are not able to care for themselves or be properly educated about it. These children do not have a voice in this system and would, more than anyone, be helped by CGM’s.
So why would the government deny the needy?
The uncomfortable answer is: This is classism.
The poor are left to luck, the middle class to debt and the wealthy to the ignorance of their safe nests.
I once wrote Justin Trudeau pleading with him to help cover the costs of CGM’s. I thought “he has children! He’ll care! He’ll understand!” But i forgot to consider that he is wealth. If one of his children got type 1 diabetes he wouldn’t wonder what tools he could afford to get to keep his loved one alive. He would simply get all the tools available. He wouldn’t ever have to decide between bills, groceries or life saving equipment.
So yeah, I am having a difficult time.
I spent my 45 minutes in therapy talking about it. I was going to meet her at the Tim Horton’s by my appointment. I chose the place because I wanted to have spent that hour beforehand taking it out with my therapist. She was late, which made the anticipation of the upcoming break up awful. When she got there she ordered a drink and sat down across from me on the uncomfortable stool at the ridiculously high round table I had chosen by the window. I let her do the talking, having nothing to add myself. After all, this was her schtick, not mine. I would have carried on for years with her outwardly hating me and me desperate for her love and approval. What can I say, I have a knack for this kind of stuff.
She used words I can only assume she got in her own prep therapy sessions on how to end our friendship. Words like “disengage”. And I’ll be honest, even in my moment of pain at her ending our friendship I paused and thought “did she just say ‘disengage’?” – and immediately pictured Picard comedically yelling “DISENGAGE” from his enormous chair on the bridge of the USS-Enterprise-D.
Although this came as no surprise, it stung badly, and I ran away sobbing after quickly “disengaging” form the situation by excusing myself to exit the building. I’m not sure when I knew. I certainly knew before the day she told me. I had been talking about it for the last few months with others before that fateful day. But let’s be honest, I had known for years. There was always a feeling of dread that accompanied our friendship. I could always tell that she wasn’t completely committed to me as her friend. She looked at me with such disdain so often, worse was when she looked at me with pity and regret. A look that rang with loud undertones of wishing she had never met me in the first place.
We were friends for 6 years. And in that 6 years I always wondered why she hated me so much.
She was my best friend.
I was not her’s.
I’ll admit that I am a high maintenance friend. I’m a loud talker, a complainer by nature and a chronic interrupter. I have baggage, so so much baggage. I have ADHD, Anxiety and BPD. None of which make it easier to be my friend. I’m emotionally irrational at times and way too sensitive most of the time. I take too many things personally and I too can be cruel when given the opportunity. However at the time we met I wasn’t going through any of the REALLY heavy shit that was about to hit the fan yet, and I was relatively stable. In fact (at the time) I was going through my most stable and happy time in my life. I had just had my third child and was spending most of my time at the parenting centre (that we met at) just hanging out and enjoying life. All my kids were happy and healthy and I still had a job to return to after maternity leave. It was a time in my life that I can sincerely say I was at my most authentic. At least most authentically happy. Relaxed and grateful and without heavy burdens, I could talk easily about my interests and goals. In fact I was interesting! I was creative, I had energy (albeit limited by being the mother of a young baby), I was easy going and I was fun. She had the loudest laugh I had ever heard and a fierceness to her that I fell into with both envy and adoration. She made me laugh, God was she funny. She caused me to question anything and everything. She was the part of my youth that I skipped when I had a baby at 17. She was mischief and brutality, she was excitement and beauty. She was brave in ways I had yet to witness and she made me feel more alive when I was with her.
I fell in love with her.
To me she was one of the coolest people I had ever met. She was a photographer and a musician. A feminist and an advocat for anyone who was in a minority. She taught me about strength and independence in a way that I had never known before. She educated me on white privledge and truism. She inspired me to learn about politics, to listen and read about the World today. To look at the world through clearer eyes so that I may see it for the first time in a way I had never seen it before. I can never know for sure, but I can only guess that I offered her a younger version of herself, and someone who looked up to her and idolized her. Someone who had lived a very similar damaged upbringing and whose damage still hung there like a coffee stain in a favourite shirt that you wear anyway.
I was a clean slate. A slate on which she and I could create the image of what I should be. I made her laugh and I drank in everything she said and did. The undying flattery I offered up to her perhaps gave me a small place within her heart. Though I’m not quite sure if she ever liked me, she did love me I think, in a dysfunctional way. It’s hard to know for sure because she was as cruel to me as she was kind.
She could never have known what was to come, neither could I.
As soon as we had established a strong bond – my life began to unravel. About 2 years into our growing friendship I ended a friendship with my then best friend, I had a new baby (my fourth), just bought our first house and my sister was diagnosed with breast cancer. My second eldest had been showing signs of being more than just a “Spirited Child” (if not for my efforts at buying every single book that would/could/should diagnose her otherwise). Obsessive by nature I started to research any and all potential reasons for Bean acting out in the way she was.
My friend was unimpressed and most definitely uninterested.
Every time we spoke I wanted to discuss my findings. I wanted to understand what was going on and avoid thinking about my sister who I was ridiculously worried about. I was convinced Bean had ADHD and determined to get her assessed and in some sort of therapy to help us with the challenges of parenting a child that was “more”. My friend poo pooed my efforts with things like “labels are bad”. She rolled her eyes when I wanted to chat about it and even more so when I expressed concern about my kiddo. I noticed, and I tried to hold back and I tried to open the conversations to things going on with her. But it wasn’t just that she didn’t want to talk about me, she didn’t seem to want to talk about herself either. I spent most of our friendship wondering if I talked too much (I probably did), wondering if I was interesting (still up for debate) and I constantly felt as if I was taking advantage of her, or too clingy, or too open, or even too weird (ask me about the time I changed my baby’s name over and over again…). The more I tried to chip away at her wall, the more it grew. It left us with nothing to say to each other, nothing personal or substantial to a close friendship. She didn’t care for my life and my struggles and she didn’t like or trust me enough to care to talk about her’s.
I second guessed every move I made and prepped myself before every visit to remember not to talk about subjects she wouldn’t like or might mock me about. Some visits were so obviously awkward and uncomfortable that even I sometimes considered if it was time to break ties. She began to bore me, and I can only assume I had been boring her for years. I was never quite worth the trouble or worth the time. One might ask themselves why she bothered at all? I was definitely the weak one in the relationship, she could have easily broken my heart at any time. Maybe that was the power I carried. The power of an easily broken heart. In my darkest moments, when I went through my nervous breakdown shortly after Bear’s T1D diagnosis, I considered dark things and expressed them to her. Maybe it was at that moment that she decided she could no longer be my friend. And though that is fair, of course it’s fair, it doesn’t explain the previous years of insidious cruelty she acted out upon me. When we were out with friends, even very early in our friendship, she mocked me openly at every turn and even when we were alone she always had the incredible ability to assure me that I was uneducated and naive. Probably she wasn’t all wrong. I’m sure she wasn’t.
She was the friend that doubted my worry at Bear’s increasing issues with pee accidents and his change in personality. I’m sure I know why, because at first I related it to ASD. She hated my fixation with ASD, especially my need to write about it and openly publicize it in my blog. Exposing myself and my kids in this way lost a lot of respect from her. I can only guess that she felt I was victimizing myself and romanticising the condition. In truth I was in a way. I was also worried, and interested. I was also struggling with what this meant for my child and what it would mean for me as a parent.
I wanted to talk about it. To reach out to those that understood. But my worries, my valid issues and need to relate to others, were trumped by her critiques of me. In the end, I suspect that to her, all I was was an obsessive attention seeker with a need to expose my children for my own benefits.
Today a mutual friend of ours posted a photograph to Instagram that my ex friend had taken, and I decided to check out the ex-friend’s page. I wondered if she had ever posted any of the photography I had done for her. In fact she had. And though she always prided herself with being a morally sound photographer who asked people before she took their pictures and never posted anything without permission, she did not credit me to these photographs. I assume she never thought I would see them since we had blocked each other from each other’s profiles long ago. Alas, I have multiple accounts and was able to access it through the account I was on when I was scrolling my Instagram. I wasn’t angry, but I also wasn’t having it. In the first time in years, I contacted her and called her out on it. She apologized and said she had removed the images, which in my opinion was a bit extreme and unnecessary. After all, all I asked for was recognition. Her crediting me my work did not mean we were now best friends again. Seriously, I just wanted credit on my photographs that were clearly being liked by a large audience. But hey, deleting them worked too I guess.
After our brief communication about the photographs I decided to write her again. This time I sent her an email detailing my feelings about our past friendship and our “break up”. It may seem trite, or pathetic even, that I chose to do this, but – like the steps an alcoholic takes after they quit drinking, this was something I felt I needed to do to move on. Something I felt she needed to know.
That she never fooled me.
That she wasn’t a very good friend to me and that I always knew she didn’t respect me.
That despite it all, I loved her anyway.
That there was a lot of good that I gained from our relationship.
That I didn’t ever regret it, any of it. Even the end.
That even through her obvious dislike of me, she inadvertently caused me to love myself better. She caused me to question why she treated me that way and whether I would ever allow anyone else to do the same.
And I did learn to love myself better. I learned that just because someone thinks you aren’t worth the trouble, doesn’t mean you aren’t. I learned that it’s ok to talk about your struggles and even to expose them. Because it’s also ok to want the world to know. It’s ok to search out others like you. I learned that even bad relationships have worth if you can find the worth in yourself. I learned that you can love someone so much, and that doesn’t mean they’ll love you back. But more than that I learned that I can be ok with that, I can move on without regretting any love I gave even when I was alone in it.
Perhaps her best lesson to me was that life is too long and too short to carry grudges.
I walked away from her sobbing, yet still I was a stronger, more independent and more confident person just seconds after she said goodbye. The best thing she ever did for me, though it might have been selfishly motivated, was to end our relationship.
What she saw as a weakness in me might actually have been strength. Maybe loving someone anyway, through their shit, isn’t always the wrong move. Maybe it means that my heart is forgiving, and kind. Maybe it means that I am a good friend and that my heart isn’t so easily broken after all.
The picture you see below, in the crazy cute Moo shirt, is of J – 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 J 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 J a war had begun between his immune system and what it had mistakenly taken for an enemy – J’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. J’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 J was urinating, I very likely would have instead chosen to listen to my closest girlfriend about how I was definitely overreacting and that J 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 J 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.
Jasper is giggling in the yard. Phin is too. I take a peak, Jasper 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 Phin and I are laughing now too. Through his smiles and laughter he says “mommy, help, I need you. I’m feeling really really low”
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.
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.
Phin, 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 J 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.
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”.
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…
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.
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 voice 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 saying: “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 – 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
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
All but a few, really.
I knew this was different than N’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 J with his arm stretched out warning off the invisible nurses who were attacking J 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,
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 to a 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 P 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 mucked up face paint as the 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.
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.
Depression can be a tricky thing. It was hard to convince me that I was depressed. Like people expecting people on the autism spectrum to look and be like Rainman, people tend to expect depressed people to walk around with an Eeyore persona accompanied by a very obvious dark cloud over their heads. These depressed people should never shower, or leave the house, or leave their beds. And they should cry – all the time.
If you look “normal”, or “not sad” by any capacity then you are clearly not depressed.
Of course, this is rarely the case. Most people with MDD (Major Depressive Disorder) live their daily lives as anyone would > but also with their depression. It accompanies them, like a shadow, following them. Attached to them. In unison with their every movement. At the ready to grow and take over. Sometimes taking over more than at other times.
It lurks. The black dog.
And sometimes, as with my mother, it wins. It almost won with me.
My therapist often told me to sit with the sadness. She told me this because I have a habit of disregarding the sadness and instead turning it into anxiety and anger.
It’s a protective measure that I have worked on and perfected, both subconsciously and conciously. And it worked for a while, but the problem is that it catches up to you. The sadness I mean.
Because the thing is that you don’t really disregard the saddness, you swallow it. And it sits inside you like a child’s urban myth, a cherry pit growing into a tree. The roots intertwine with every muscle and vein and it becomes so that you don’t even realize you’re sad anymore. You just are. You forget what it feels like to be sad because you cannot differentiate it from anything else.
If you’re like me you forget what it’s like to cry, you mask the sadness with anger. Mastering the art of pushing people away by validating your reasons for why they have ruined your project, your day, your life.
My therapist’s theory was that my emotional mind worked like this:
Sadness (though more often subconscious than not) = anxiety = anger = losing control.
The reason my sadness was so hard for me to see, to acknowledge, was because I was unable to process sadness. It didn’t offer control, and ultimately that’s what I was striving for.
Furthermore sadness weakened me.
As much as they told me this wasn’t true, that I wasn’t more vulnerable because I was sad, as much as I wanted to believe it wasn’t true it was a hard pill to swallow. Thankfully I made sure to raise my children to believe it wasn’t true in their cases. To instead to allow their sadness to be their strength in their times of vulnerability. At least I knew enough to do this for my children. But I could not help but see sadness as a deficit in myself. A deficit that did nothing to further my intentions and goals in my life.
With that said, my therapist wanted me to practice being sad. To practice allowing myself to be sad.
When I had a hard day a few months back while I was still in the safe confines of therapy I pushed myself to do as my therapist had requested.
It was no easy task as this was a particularily hard day.
I had had a pretty good sleep, I had had a pretty relaxed wake up. The sun was shinning, the weather was nice. But it was still a really bad day.
Sometimes it’s just that way.
And when you have mental illness, as I do, hard days can sometimes drown you. You have to work hard to keep your head above water. You sit between the depths of the black waters and the fresh air above in a sort of equator. An ‘in between’ that only you know. That only you live. A thick sort of air that isn’t in any way refreshing, but will at the very least keep you alive.
Keep you breathing.
And that day I floated on my back in my self made sea and breathed through my sloppy emotional mess of a day.
In and out.
It was hard not to just drop into the deep. To sink and let myself fall deeper into my own suffering. To pop on the tv and let my children’s eyes turn to tiny staring bulbs while I ruminated in my own discomfort. This is why I had avoided sadness for so long. How could I be sure I would be able to climb back out of it? How could I be sure I could experience it without becoming it?
But I didn’t fight back against the sadness that day. I didn’t because I allowed myself to feel it. As terrifying as that was.
I’ve felt it before. Long ago when I was still a child and was more honest with my feelings. Long ago when sadness was ok to feel. When it didn’t unravel me and pull me into the dark and heavy and painful creases of it. When sadness was just a feeling, like any other. Not one that needed an armour of anger and bravado to keep safe. To keep down.
But this time I let myself go into it. Not completely at first, because I found myself wanting to crawl inside it as soon as I felt it. I wanted to fold myself into a ball and hide within it. So instead I treaded lightly on the edge at first. When I realized I could walk through it, sit with it, and walk away from it till I needed to sit with it again I became braver. I let myself experience it more strongly than before. And it wasn’t that bad.
It may be that this was sadness, just regular homegrown sadness, I thought. Perhaps this was what sadness felt like.
I so often chose anger as my go-to emotion and reaction instead of any other emotion. I was simply not used to this. A feeling that nothing seemed funny or ok. A place I was scared to stay trapped in, where everything dripped with the heavy burden of sorrow whether you or others recognized it or not.
On this day it I told myself that even though nothing extraordinary happened, nothing substantially awful or hard happed, I was allowed to be sad simply because I felt it.
I held myself together as best I could. I took my meds. I drank my water. I avoided coffee. I ate at the right times and took my kids to the park. I watched a movie with N. But even after that I just feel spent. Emotionally spent.
I do think that taking care of myself did make a difference, it must have, right? I mean, I didn’t end up a sobbing puddle on the floor. I threw the ball for the dog, I coloured pictures with my boys and played catch with N. I went shopping with Shai. I taped myself together and even with sadness as a backdrop I parented and did the stuff I was supposed to do.
I laughed. I smiled. And sincerely. Because my kids are awesome and because even in sadness there can be joy and happiness.
It’s just – when I was alone. Being alone was the toughest because I couldn’t distract from that weight inside of me. My veins were heavy with the tar of my contempt and shame. The frog in my throat sat at the ready – waiting to leap into weeps and bellows if I had let it.
And that’s ok.
I must remind myself of that.
I needed to feel the sadness. I needed to acknowledge it. Not wallow in it. Not let it take me over so that suddenly I was the sadness. Just acknowledge it. As long as I could see it not as anything else. As long as I let myself be sad when I was sad then maybe, probably, I’d be free from it the next day. At the very least it offered me a way out of anger. Anger being a place I no longer wanted to allow myself to find comfort and strength in.
The sadness, which had always been there but hid so nicely under the anger and anxiety, was my gift to myself that day. My way of opening the door that had been locked for much too long.
Sadness, not depression, is ok. In fact, it’s important. If you allow sadness you might even be able to ward off depression. And depression is ok too, as difficult as that may be to accept. If you can find the care you need and allow yourself the freedom and acceptance of loving yourself through it.
The sadness is hard to bare but necessary, though it sometimes feels like you are wearing a wool jacket on a scorching summer day. Still, it detoxifies you.
At least – that’s what my therapist said.