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 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?
And 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”.
I gave him all the information he needed. Essentially telling him that if he gave himself insulin he would go low. He wanted to go low now, of course, in order to attain that precious Sprite that sat in the fridge awaiting him.
I gave my impulsive, often unthinking, 10 year old the tools for his own demise.
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 yelled back at me to do it, reminding me I had done it successfully once before. Though at this point I was hysterical, I accepted this logic and began to get it ready.
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 and for no good reason at all other than my premature grief: my yelling intensified. So did Kevin’s, though at this point he was on the phone with 911 and was mostly yelling at me to calm down.
But I couldn’t calm down while my child was dying in my arms.
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.
Nava shouldn’t have seen any of it.
Jesus I wish she hadn’t of seen any of it.
I barely remembered she was there till I heard her screaming and sobbing through heaving breaths as she asked us repeatedly how could she help. I yelled at her to go away, out of the room. I couldn’t let her watch him die.
I was sure he was dying.
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 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. 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. Except for those nights when our bodies say “no” and sleep through the six alarms going off every 5 minutes that we’ve set up (because our bodies have said no before). The dread that accompanies you when you sleep through the 3am check and your kid is still ‘sleeping in’ is gut wrenching, let me tell you!
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.
We don’t even know if what we heard was words. It really was just a tiny mumble. Kevin later told me that when he first got down there Jasper wasn’t speaking or sitting up. He was lying on his stomach staring at Kevin wide eyed. And then his leg jerked. He didn’t make another sound after that. The silence of his seizure was deafening. The only other sounds were of everyone else in that room that night. Everyone but him and his little brother Phineas. Phineas, who was asleep throughout the entire ordeal in the bed beside him. He never would have alerted us to Jasper because he wouldn’t have heard it. He’s 7 and a deep sleeper, he would have slept right through it.
When the paramedics arrived to our home before we went to the hospital we were finally able to check his blood sugar, it was 2.6 mmols. I can’t imagine what it must have been beforehand because at this point he had already been given the glucagon. The paramedics asked me if we felt we needed to take Jasper in to the hospital or if we wanted to stay home. Though this seizure was different than the last I still assumed that it would play out like the other seizure had and that he would be fine now that he’d had glucagon. He wasn’t awake though and the seizure had been quite long and traumatic so I didn’t argue when Kevin insisted that I take him in and the paramedics unanimously agreed. In my defense for almost keeping him home: I didn’t know at that point that he had overdosed himself and to what extent.
If we had had a continuous glucose monitor Kevin would have seen more than just a perfect number of 6.1 mmols when he put Jasper to bed that night. He would have seen double arrows down giving a warning that something wasn’t right. But CGM’s are expensive and not covered by OHIP so those of us with low incomes or one income families must learn to live without it or must ask for help from others to gain access to these incredible life saving devices. Though clearly Jasper overdosed this time around by “human error”, the first time he had a seizure it was just happenstance that it occurred. It it was almost as quiet as this one.
Had the tv been louder, or the AC on, we wouldn’t have heard him. And they said not to worry, and that it wouldn’t happen to us, and to sleep. But the parents knew. The parents who had lost their children, or come close like we did this time. They fucking knew.
So yeah, I am having a difficult time.
Think CGM’s should be covered by OHIP? I sure do! This link explains why I believe they aren’t just an “added bonus” to diabetes equipment but a life saving tool:
Category Archives: death
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.
My mum, Jill, was the best mom a kid would never ever ask for.
My aunt, let’s call her “Jack”, was the best mom a kid could never ever ask for. Because Jack, you see, was already somebody else’s mom. Two somebody’s actually.
Jack and Jill were best friends. Once upon a time.
“Jack” is my aunt on my father’s side. It was through her that my parents met. There was a gang of them, all writer’s and artist and eccentrics. People with cool names like Norbert, Jan, Lorne, Lloyd and Ursula. People who threw big parties and wore cool clothes. The gang.
Jill was spunky and feisty and way too smart. Actually my impression is that they were all too smart. Both Jack & Jill had short dark hair and wore their sexiness and their wit like a casual shall. Never too obvious, always obvious enough.
Jill went nuts. Jack didn’t.
When Jill started spiralling deeply into the world of paranoid schizophrenia she not only began to disengage from reality, but also her loved ones. Jack was not immune. It was Jack who finally pulled the plug on the toxic friendship when Jill’s illness simply took Jill over and it seemed Jill, the real Jill – was lost forever. Jill took this personally, though it was directed at the monster within, not her. She never forgave Jack. And she never forgot.
Jack, who had been named my Godmother at my birth (though none of us are religious), had a connection to me that was deep and true. I longed for her motherhood to impress upon me. I wished I could slip through the cracks and become one of her kids seamlessly. Course I still, also, wanted to be my father’s daughter and my sister’s sister…so it was all a bit complicated in my 9 year old mind.
In the years that passed I continued to become more and more disconnected from my mother. She stopped letting me visit her when I was 9 years old (for my own good she claimed, maybe she was right). When I was 12 I went to live with Aunt Jack for a year and during that time we went to my mother’s apartment in Montreal so that I could invite her to my 13th birthday. It did not go well. Jack waited outside in her car, but the mere mention that she had driven me caused Jill to become enraged. She yelled at me for even suggesting she come to Toronto. She kicked me out.
I can’t remember if I cried while sitting in Jack’s car just outside Jill’s door, but I do remember that I learned a hard lesson that day.
I gave up any hope that my mother might want to see me again.
That was likely a pivotal moment for me. As an adult and a person who has studied psycology at various times in my life I can look back and see clearly that it wasn’t just my mum I gave up on…but perhaps I gave up a bit on me too.
Hindsight is 20/20.
For the next few years I went through phases of self-harm in the forms of cutting, various forms of drug use, running away from home in the middle of the night and some rather loose sexual exploration which included one abortion at the age of 15 and one pregnancy and baby at 17 (pups). In all fairness I was at *that age* (teenager) so my mother can’t be blamed entirely, but I’m not sure self-harm by way of cutting is a normal past time for teens, nor two pregnancies in two years before the age of 18.
At the age of 16, when I had almost completely accepted that my mother was lost to me, Jill contacted me. Not only was this event in itself a challenge for me, but it came shortly after I had just had an abortion and was still reeling from it. I became severely depressed for a long time after the procedure as I had taken a long time to decide on it and was 3 months pregnant by the time I went in for the abortion. And, as if on queue it was during that depression that Jill contacted me. She requested we reconnect. I remember standing at the sink in my grandmother’s house (where I was living at the time) doing the dishes and thinking “she’s just going to come into my life and make me love her again and then vanish”.
And in a way she did just that.
The reunion was awkward at first, but soon I had mostly convinced myself that she was serious about being my mother again. We started talking regularly and visiting. I was over the moon but still suspicious. Always a bit on edge. At 17 I became pregnant with pups and my mother seemed excited albeit a 17 year old, her daughter, was having a baby. As I neared the end of my pregnancy I finally trusted that Jill was sincere about our new relationship. I felt good. My mother was back. Better than back, she was new. My uncles had done an intervention on her where they had her institutionalized for a bit and she was assessed and put on medication. I liked the medicated Jill. She was very kind to me.
Before I had this newfound trust for Jill it was Jack who I had invited to be at the birth of pups. It was Jack who I wanted at the birth to support me. But when Jill reappeared I started to reject Jack. I didn’t realized it was rejection at the time, or why I was doing it – but it’s crystal clear now.
18 days before my due date Jill jumped in front of a subway train.
I wasn’t told for two weeks.
There is about a year of my life, after pups was born, that I cannot remember. Total black out.
My ex told me I woke up screaming in the middle of the night almost every night. I don’t even remember dreaming during that time.
Luckily there are pictures.
As the years passed I glued myself back together. Jill’s memory stayed with me, but the pain she had left me with from her dramatic departure faded. Through it all Jack never faltered in her love and commitment to me as a caring family member. As I grew I started to notice this finally, and appreciate it. I spent weeks at her home in the laurentians, almost yearly for a while there. And when it came a time where I could no longer afford it – Jack surprised me once again with her endless caring and treated me and my kids to a week at the cottage. For many years, even as an adult, I never quite shook that wanting and yearning that Jack was my mother too. I understood this was a fools wish, not only because it is impossible – but also because having her as an awesome aunt and motherly figure in my life should have been enough. I struggled internally with the guilt that I didn’t think my father was enough or that I would want something that belonged to my cousins, of whom I cared so much for.
Here I stand, a 36 year old woman. And for the first time ever I actually see my mother in me. I suppose this is because I only knew her from her 34th year on (till her untimely death at 50). And though I have always had a closer bond with jack, and a hope for us to be closer still, I like seeing my mother in me. I feel connected to her in a way that only mother/daughter DNA can offer. I see her in the way my body has filled out. The way I walk, the way I stand and the way I bend. I see her spirit within me. The good, the bad and yes – even at times the ugly. Her feist and wild side live in my heart and in my mind. Some of it brings out the best in me, some brings out the worst. And yet, however much I see in me the sides of my mother that in my past broke me over and over again as a child, I know that I can control them. I’m ahead of the game that my mother lost so tragically. My father, my aunt, and once upon a time my grandmother, have all had a hand in guiding me on my path to wellness when the edge was near. Jack most of all helped me when I had my nervous break down. She spoke with me daily and supported me. I used her and she allowed it. I needed a mother at that time and she stepped in as the best substition she could offer to be. In a turn of events, ever since I have started to see Jill in me, feel her under my skin and in my way of being, I have finally shed the need to have Jack as my mother. I am finally satisfied as a woman, as a daughter, as a neice, as a person – just to be me and to let Jack be Jack, who is not my mother. And to let Jill be Jill. Who is my mother.
After all this time my reality is finally is enough.
Today Bear turned 6.
And I marvel at the little boy who has come so far.
When he was first diagnosed with type 1 diabetes he was understandably terrified of the needles. In fact, he still is.
Every single shot is a traumatic event that leaves us all a little bit breathless and the hub and I a lot older and more exhausted. We breath, slowly IN and then slowly, OUT.
We sing “Let It Go”. And when the chorus comes we breath again and then we inject.
His body is speckled in bruises from the shots. His arms are hard to the touch because the insulin has created scar tissue there and now we must wait three months before we inject there again.
Nothing is easy and simple and taken for granted anymore. Especially not him. He isn’t just a little boy anymore. He is a boy who understands chronic disease, sick children, the real possibility of death.
He is also a little boy who has gained courage and strength I didn’t know he had, and who has helped me to gain it too.
I watch him give himself his shots and I look on with wonder at this little man so strong and so brave. I see the cupcakes he comes home from school with from some school mates birthday celebration, that he has had to pack away and has to wait till he gets home to indulge in, his face always a little bit sadder on days like that. Because it isn’t about the cupcake, we all know that. It’s about the reality.
The reality of this disease is that it controls his every move. This unpredictable disease that so many, too many, take for granted.
And the reality is that though he doesn’t have a choice he is taking it on like a champ. Making decisions, that are wise and beyond his years. Gaining empathy for others in tremendous ways and supporting others with a maturity only a child who has needed such intense support can know.
He has always been a lovely and wonderful boy.
But he is a better brother because of his T1D
He is a better friend because of it.
He cares more about others, because of it. Because he knows.
He is 6 today.
But he is 6 going on 30.
Last year, shortly after his diagnoses Bear came to me in a cold sweat one night with tears in his eyes. What happened? I begged to know.
Through sobs he told me that he dreamt that he died when he was 6 years old. I swallowed. Like a good mother I said all the right things:
It was just a dream.
You won’t die when you are six.
Sometimes dreams can feel real, and when scary things are happening we can dream scary things, but really truly, it was just a really scary dream.
You are ok. Mama is here.
I said these things, and I believed them.
I do believe them.
But it shook me. And for a year and a bit I have both anticipated and dreaded today. My sweet little boy. Faced with a life, a disease that he feels so alone with. Forced to find a courage little children are not supposed to know about. And it shakes me even more that all I can do is chase the rabbit down the hole, always trying to catch it – always trying to keep his blood sugar levels in balance.
Bear has what is called “**hypoglycaemia unawareness” a condition that can be common in children with T1D that prevents him from recognizing the signs of low blood sugar, especially in the middle of the night.
He’ll wake up – they said
He’ll have a nightmare and he’ll wake up – they assured us
But no, he doesn’t. He sleeps soundly through this incredibly dangerous blood sugar reaction.
This last week the nights have been heart wrenching and anxiety driven. JBear just can’t get his blood sugar up. And yes, as is typical of the diabetic with hypoglycaemia unawareness, he isn’t noticing.
No bad dreams or thrashing around waking himself up. In fact, even when we do jar him enough to get him to sit up half awake and recognize that we are there to save his life, he stays disoriented and becomes verbally abusive (like a bad drunk) and because of this he refuses to take what we are offering. He refuses the only thing that can save his life at that moment – juice. We must beg and threaten. We must force him.
And it’s awful. Just awful.
Yesterday he had trace ketones telling us that his body was not able to get any glucose (energy) from his cells so it was now attacking his fat cells. This can lead to DKA. It was scary – we tested and re-tested him all day trying to bring him to safe level.
Then last night his BSL dropped.
It was 4am.
I had a sinking feeling that I should check him. He was 4.0mmol (he should be between 6mmol and 12mmol). Luckily not too low yet, just low enough for me to squirt some maple syrup into his mouth via syringe and be relatively confident his BSL was going to rise to a good number. And luckily it did.
The thing was though, that his numbers were normal at bedtime and at midnight. Better than normal – he was 8.1mmol. His perfect number. The number we strive for. The number, that in the middle of the night I no longer trust because I have no idea if his BSL is going up or down from that point and why. Luckily the maple syrup did the trick. And I guess if we can put anything positive to this disease, especially from the perspective of a child, having to save your life by ingesting pure sugar as quickly as possible ain’t the worst.
In a situation where a child’s parents says “are you going to die if you don’t get candy? Eh?” he can actually say “yes, smarties can save my life”. Seriously.
So my beautiful boy is 6 today. And he is full of hope and love and courage. He no longer remembers that nightmare from a year and a bit ago that has burned itself in my mind. He is happy and glowing and full of dreams and wishes.
He is a marvel, this one.
Once, while rushing off to work from dropping my kids off at school I was called a “bad mom” by one of the staff because I wasn’t standing still for the National Anthem. I was shocked. I reported the incident to the principle because a teacher should never be allowed to treat a parent that way. Instead of apologizing to me for his staff’s immature and inappropriate behaviour, the principle defended her saying that we must all stand still for the National Anthem.
That should have been my first clue as to how awful a school this was. Treating adults, nay parents, like children they can lecture and insult should have been enough of an insight as to how they must treat the actual children at that school.
But I let it go. Never thinking that this Principle’s attitude towards the parents of the school (or at least to me) might reflect how he and his staff cared for the students of the school, namely mine.
That was back when Pups was still going there. And luckily for her she was not a child with special needs. She was of above average intelligence, kind, good natured, calm and easy going. And…it appears, that is the only type of students that this school can deal well with. Or, I guess, does not really have to deal with at all.
When Bean started attending the school I thought (wrongly) that it would be as good an experience as Pups had had. Alas I was mistaken. Adding to the pot some ADHD and Autism created a school environment that I was not expecting, nor was prepared to contend with. I didn’t make very many right moves. I allowed myself to be convinced by the administration of the school that they were doing all that they could to work and care for my child in order to help her succeed.
They lied. Or at least, they did not follow through.
What little they did do I thought was a lot. That was until I started to do my own research on the school board and its responsibilities in so far as special needs are concerned. I was shocked and even ashamed to discover that the school was doing the most minimal amount required to help and nurture my child, if even that. I started to become “that parent”. The parent that always had another complaint and request. The parent that was always in the office looking to speak with the principle or VP. I was the parent they tried to avoid. The parent that never left anything alone.
I was the parent without blinders on anymore. I was my child’s advocate.
One would assume that I was enough of a pain in the ass that the school staff would learn not to screw with me. That at the very least, THE VERY LEAST, they would make sure that I was appeased, my children properly cared for, in order to keep me quiet. They are either not that smart or truly don’t care about the well being of their students. I’m thinking they are a bit from column A and the rest from column B.
And this was when they were dealing with Autism.
If the child isn’t non-verbal apparently the school doesn’t seem to recognize it as actually being part of the autism spectrum, at least not “really autistic”. This was told to me by one of the head admin for the school.
This school originally denied Bean’s ADHD, they denied her AS. Even after formal diagnoses were brought in as proof they consistently told me what was AS and what wasn’t. They rejected my request for her teachers to be more sensitive to her conditions, especially her anxiety disorder. They were inconsiderate when it came to her suspected Celiac and diet restrictions – and that’s putting it mildly. They manipulated me in order to avoid giving her psycho-educational and cognitive assessments done. The numerous psychiatrists we saw for Bean had forewarned me that the school would attempt everything in their power to not assess Bean for any LD’s (learning dissibilities) she may have in order to save costs.
And then, as if all that wasn’t enough, I sent Bear (newly diagnosed with T1D) to that school.
I guess I thought that Autism was one thing, but a disease in which one depended on life sustaining meds was another. Perhaps all had gone badly with Bean because the school, the staff, truly saw a different kid then the one we knew. Perhaps their experience with AS in girls was limited or non existent. I convinced myself that although the issues with Bean were many, were constant, were not acceptable…that those issues would not fall on to Bear. Because Bear had diabetes, Type 1 Diabetes. A chronic disease. An autoimmune disorder. A condition that required, as mentioned, LIFE SUSTAINING MEDICATION.
Nope. All of that didn’t make a difference. The administration wasn’t taking his condition seriously, or they weren’t thinking of the implications it would have on them if he was hurt because of their refusal to care for him properly. So I wrote them a letter in hopes of bettering the care of the next child they encountered with Diabetes. In hopes that they would now know how to respond to the issues a student with T1D faces efficiently, safely, responsibly.
At the end of the letter I attached forms and documents that I encouraged the administration to read up on.
This did nothing.
This school that Bean and Bear attended had finally reached its limit of irresponsibility and neglect for me. I wish I could say “fool me once shame on you, fool me twice shame on me”, but in this instance it’s more like “fool me over and over again till I don’t know what else to do and I finally start looking for a way out”.
Shame on me.
This lack of proper care and smudging of the rights of my children at that school was astounding. And although I blame myself for letting so much of it happen without educating myself on my children’s rights – this school proved time and time again that it was not the right place for my children.
I really am saddened by this. I hoped my kids could go to a school close to our home. I hoped that this school would support my children and care for them.
In the end the best choice, the safest choice, was to remove my children from that environment. To hopefully find a school that will see them as sweet and smart kids who also happen to need a bit of extra care – and not see them as just another burden with a really bitchy mom.
I’m not sure what I’m running on these days. Is it possible to run on pure stress and get by ok?
If so, that’s me.
Add to our plate of Asperger’s, T1D we are now seriously looking into the possibility of Celiac Disease as the reason behind Bean’s GI issues.
It has been mentioned in a previous post that Bean is gluten and casein free. Or at least, she was until a few weeks ago. She is scheduled for a biopsy to determine if she has Celiac, so > in order to have accurate results > we must put her on a “gluten challenge“. Essentially making sure that there is damage done, “enough damage” to be able to find atrophied villi in her small intestine. It is as if, or maybe ‘exactly’, like we are starving her from nutrition in order to have a clear answer of the problem so that we no longer starve her from nutrition anymore. Say that 5 times fast.
It takes an average of 9 to 11 years to be diagnosed as someone with Celiac.
I am not kidding. That’s a real statistic.
9 to 11 years to get diagnosed.
People with Celiac are said to be diagnosed with everything under the sun but Celiac – until – after about a decade when it seems like that is the only thing left to try out. And, after about that long people with Celiac have sometimes caused so much damage to their small intestines that they are prone to a number of other diseases and ailments, including – but not limited to – osteoporosis, infertility and cancer. And, in the worst cases (cases that go undiagnosed or untreated for too long), it is possible that people can die from the other ailments/diseases that have come about from having Celiac disease. Yes, Celiac can lead to death if left untreated. Morbid, but true.
Bean has been showing symptoms, now that I know what the symptoms are, for as long as I can remember. From colic, projectile vomiting and short stature (in the lower 5th percentile) as a baby to severe constipation, dark blueish circles under her eyes, poor weight gain, enamel damage to her adult teeth and weak bones (elbow dislocated twice, and shattered once) as a child.
I’ll admit that in this time I have allowed her to have dairy again. Firstly because I’m not positive that she is actually casein intolerant, secondly – because if you are already going to suffer, you might as well be eating yummy food while you do it.
Part of the reason I am suspicious of her casein intolerance is because of the Hemocode test that she underwent. In the foods that she was tolerant of, there was the word: casein. Now I knew that since Bean had not been consuming dairy for quite a while it might have given us a false negative result since the protein was not in her system for the test to find it either tolerant or intolerant, but in the ‘Severely Intolerant’ list, there were things like ‘kamut’ and ‘rye’, of which I was pretty sure she had never consumed. There is also the controversy over whether these IgG tests are actually accurate or simply a sham. At that point in our life, with everything we had been through with Bean,, in as far as GI issues were concerned, we felt we had to take the $420.00 chance that it wasn’t a sham and that it might unveil some answers..
If Bean does prove to be Celiac, and dairy doesn’t affect her negatively, I will no longer wonder if i wasted $420 that day. But I will wish I had known more about celiac then so that I might have taken those results to mean more then just ‘intolerance’ (which, to be honest, at the time I felt wasn’t *that* serious an issue, whether true or not).
With all that said, it wasn’t till we were sitting in the emergency department with Bear the night he was diagnosed with T1D and they asked me almost immediately if any of our other children had celiac that I had given it much other thought. And in fact, to be completely honest, it wasn’t till their next question “…or any other autoimmune disease?” that I started to connect the dots. Yes, Pups has Guttate Psoriasis I said. And then, as if a light bulb went on above my head like some cartoon character: “and actually Bean is highly suspected of Celiac, but she’s had blood taken and the results were negative, even with all the other symptoms present”. Oh, said the doctor as she jotted it down on her piece of paper. And then: “we will have Bear tested for celiac since her has T1D. The two are highly correlated. It doesn’t mean he has it, but we will check as a precaution.” And now it was my turn: “oh.” I responded, feeling a brief moment of both “ah hah!’ and “oh fuck” when re-thinking celiac and what it might mean to our family.
So I began to research, as I do. I found that yes, T1D and Celiac are very similar autoimmune disorders. They both carry the genetic markers HLA DQ2 and DQ8. If you have celiac, you should be tested for T1D, and the same is true if you have T1D > you should be tested for celiac. There was even some evidence to suggest that if you found out you had celiac early enough and treated it properly and immediately – you might even be able to avoid developing T1D in the future.
So here we were, knowing (by internet research ‘chance’, and not by doctor related information given) that the autoimmune disorder that Pups has (Guttate Psoriasis) can be linked to Celiac, and that Bean’s suspected Celiac Disease, or ‘CD’, (which, we were now aware of because of the Dr in emerg) is actually an autoimmune disorder, and of course that Bear’s T1D is also an autoimmune disorder and can also be linked to Celiac in many cases. There was also a suspected, but unproven, link between people with an ASD and/or ADHD and Celiac. The symptoms related with Celiac were all too evident in Bean. From her serious GI issues and positive reaction to a mostly gluten free diet right down to her AS and ADHD diagnoses. Immediately I decided that something more had to be done to see if she had Celiac Disease. Another blood test (already in the works from before Bear’s diagnosis) revealed yet another negative result. But as Bear now had T1D, and blood tests with Celiac have proven to be unreliable in the past in correlation with false negatives, Bean’s paediatrician and I decided it had to be time for a proper test, a biopsy. As mentioned, even this test would appear as a false negative if not enough gluten was present in her system to do actual damage to her villi. So on to the gluten challenge we went. And that is when we started to see things like obvious defects in her teeth enamel and dark blueish circles under her eyes. She became lethargic and moody (more than usual). She was absolutely and obviously very ill.
So…more research later, I came upon a celiac home test kit. What the!?
That seems way too easy.
Since it was proven to be as accurate as the blood tests taken in hospital (and approved by Health Canada), and seeing as Bean had now been on her gluten challenge for 4 weeks, I decided to try it out. Maybe, I hoped, it would show a positive result and I could use that result to push Bean’s biopsy date up – especially as she was already so sick because of the gluten.
I did the test.
Do you see what I see? (<-Why do I always add a tune to that?)
The line is SO faint, it is practically not there.
Except that it is.
The hub and I thought that what we were seeing was just the test strip’s positive line reacting to any liquid wetting it. But still, the pamphlet specifically said “no matter how faint”. Could it actually mean *this* faint!? I had to know. The pharmacist assured us that this was a positive test. Saying that absolutely NO LINE, nothing, would appear if it wasn’t detecting the celiac disease.
I am of two minds about this. Wishing that Bean won’t have Celiac (of course), while wishing that her test is positive because of knowing that she very likely does > and hoping for a final and absolute confirmation.
Celiac is another challenge to add to our plate, to be sure. An expensive, vague, and chronic disease type of challenge that will undoubtedly lead to yet more grey hairs on this overwhelmed mumma’s head. But as only a biopsy will really absolutely truly give us confirmation about whether Bean in fact does have Celiac (and only if that biopsy is positive, because a negative biopsy actually doesn’t rule out celiac! I shit you not) then we must trudge forward through this gluten challenge diet and hope that it is not all for naught. At least if positive we will have a solution, however challenging, (and possibly difficult) to Bean’s painful GI issues so that we can finally start to work towards healing her body.
When I was 16 my mother, who had been, by her own accord absent from my life since I was 9 – decided to come back into my life. I immediately knew something was amuck. What her plan was I couldn’t be clear on except that I was certain the end result would leave me in pain…
I was right.
She became quite involved in my life for the next year. She visited with me at my home, something she had sworn she would never do because the city I live in was filled with the FBI and evil anglophones (schizophrenia, go figure), she met my partner at the time, invited me to her home in Montreal with my sister. She had me cut her hair! Which was both strange and nostalgic as I hadn’t been this close to her since my childhood and I was surprised she chanced me messing up her hair or that she trusted me with scissors. She was present enough in my life that when I became pregnant she was able to watch my belly grow and stretch for a short while – and although she didn’t come, she was in my life when I had a shot gun wedding (not my proudest moment).
It was a peculiar time in my life as I was completely overjoyed (in a little kid before their birthday party kind of way) that she was so committed to being my mom again and at the same time completely suspicious of her intentions.
Convinced this was not going to end well, I kept my back up. I stayed on guard. Never sure when ‘it’ would happen – when she would leave again. By the end of my pregnancy and after a year of reconnection that happened during my pregnancy, I had finally begun to trust that her intentions were sincere. Maybe she really did want to be my mom again. To be in my life. I was excited for her to meet her first grandchild, excited that she would be at the birth. Two weeks before Pups was due, 5 months before I was to turn 18, on March 8th, 1997 – International Women’s Day – (of course it had to be a day with some sort of feminist political significance) she packed all the leases from every place she’d ever lived into her backpack and threw herself in front of a subway train – or ‘metro’, if you are from Quebec.
That was 16 years ago. A day does not go by when I don’t think of how much she’s missed. Or how much I miss her. This year, on March 8th (which is never really a celebration of women around the globe for me but instead a reminder of the woman in my life that died that day – on purpose) I did as I always do. I wrote my sister an email, and I updated my status with “today I remember my mother”. But as the days grow closer to my eldest child’s 16th birthday, this anniversary of her death is more than just a memory of her but it is growing into a recognition of how important it is that a girl have a positive and influential woman figure in her life. Not just one from books, but one that you can touch. A real person to guide you, and argue with you, and love you no matter what. One that hugs you tight when times are tough with all the love she can muster, even if you say you hate her.
Even if you really do hate her.
When I was 16 my mother came back into my life and then promptly left it again. Leaving me feeling cheated and hurt, confused and angry.
In two days my child, the child that was in my belly at the time of my mother’s chosen demise, will be 16. In a way I can thank my mom for teaching me what not to be for my child. For teaching me the hard way how much a mother means to a child, even if she is never there. So I must make the most of all my time with my children. Not just because they are my kids, or they have anxiety, or autism or diabetes. But because I am their mother. This isn’t just a title, it’s a responsibility. More than that it is a gift. If these children end up fucked up – I’m pretty sure it’s all on me.
It really is too bad my mother decided to leave this world before her time, she was a really cool lady I’m told by her past friends. She was smart and sexy and neat. A peculiar sort of character that made you want to know her better. I think I would have quite liked her. I also think she would have really liked Pups.
I think she would have liked me too.