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: diabetes and illness
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.
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.
If you are a die hard Deceivingly Normal follower you’ll already know that our dear Bean has suffered for a long time (from the age of 4) with GI issues, tooth enamel defects, low weight gain and bad sleeps leading to, but not totally guilty of, extremely dark circles under her eyes.
If you are not a die hard follower – than you can catch up here.
In any event: We suspected Celiac.
We pushed for a biopsy to be done, even with the risks of false negative results. Her GI doctor agreed, but only if there was a change on her blood test results. The change could be minute, it could still read negative by medical standards, but it had to be there. She didn’t want to put Bean through a procedure for nothing. I understood but this was awful. Not only was she clearly affected physically by consuming gluten (she was on the “gluten challenge”), but no matter how long she stayed on that damn gluten challenge, her blood results never differed. She never showed any positive antibodies to say she might have Celiac. We even tested her for an IgA deficiency that would cause her to be showing false negative results, but alas she did not have it. In other words, she was only showing physical signs of a gluten intolerance, but her medical results claimed different.
Blood test after blood test on my anxiety ridden kiddo, and nothing to help us get to the next step. I was becoming frustrated and impatient. Convinced I was right, but feeling like an overprotective and paranoid mom at the exact same time. In fact, exactly as I had felt when Bear was ill with T1D and I knew something wasn’t right, but continued to doubt my instincts.
We had her give blood every 6 months to test for those damn antibodies that might indicate that she might have CD. She was clearly ill, I might go as far as to say deteriorating in health (her teeth which had once improved were worse now, her eyes darker, her sleep worse, she began to get headaches daily) she wasn’t giving the Doctors what they wanted to see there was no good reason to validate the need for a biopsy.
Back to the books (internet) I went. More research, more sleepless nights finding the information I needed to get my child properly tested. I had done this once before with Pups. When she was diagnosed with Guttate Psoriasis. I had researched it till I discovered a woman who had “cured” herself of this painful full body rash by having her tonsils removed. I took my evidence to the hospital and got them to remove Pups tonsils (no, not on the spot).
And guess what? It worked.
My child was suffering, I was good at research, so I researched, and I found this:
“Some patients test negative for celiac disease and turn out years later upon repeat testing to have celiac disease. Repeating your blood test may be an important first step. Some individuals also take advantage of genetic testing to determine whether or not they have certain HLA DQ genes that are necessary for developing celiac disease. If you do not have these HLA DQ genes, your symptoms are likely related to a condition other than celiac disease. The HLA DQ genes associated with celiac disease are present in up to one third of the population, so the tests are only helpful in excluding celiac disease as a diagnosis.”
I decided to get Bean’s DNA tested to find out if it was even possible for her to have Celiac. It was.
Determined to follow through with my instincts. I brought a folder full of evidence to show that Bean had more than just a slight chance of having CD and I demanded (asked really strongly) that we give her an endoscopy. The doctor agreed relunctantly. Even going as far as to tell me of a little boy who had complications due to a simple endoscopy being done. With a big gulp and butterflies (not the good kind) in my belly I ‘neverminded’ it and pushed ahead. I knew I was making the right choice.
We were booked for the endoscopy and awaited the date.
Bean was nervous, of course. And so was I. When we got to the hospital the doctor who was going to do the procedure came in to speak with me. Like Bean’s GI doc he too lectured me on the unlikelihood that this endoscopy would show any signs of Celiac in a child whose blood tests had all come back negative. He looked down on me (seriously, he was standing above me – I was sitting on the bed with the Bean) and his eyes read “Lady, this is not going to turn out the way you hope it will”. Which was totally useful at that moment in time seeing as Bean was two minutes from going into the room to get the endoscopy done.
When we were left alone, after all the many different visits from all the different nurses and doctors and residents performing studies they wanted to know if we wanted to be a part of, Bean just sat quietly in my lap and held my hands tightly.
I don’t get a lot of these moments, so I cherished it for exactly what it was.
Finally the time came for her to go in. They let me join her and hold her while they sedated her. She sobbed and screamed and panicked and then, like a light – she was out.
Afterwards, while she was coming out of it and recovering, the doctor came in with an “I told you so” look about him and said that everything looked normal but that we would get the results of the biopsy in 4 to 6 weeks. Glad it was over with I let out a big sigh of relief. At least now I could say I tried everything. And now that it had gone so well, and was such a short procedure (I’m talking 10 minutes) I knew we could do it again in a few years to come if we felt we had to.
Two days ago we got a call from Bean’s GI doctor. The results were in.
You guessed it – she has Celiac.
Now we are working out exactly what that means. Other than the obvious – gluten free – we also need to get a separate chopping board for her food to make sure there isn’t any cross contamination. We need to figure out how much we tell people…do we announce it to her class so that the kids don’t share food with her? We need to figure out if gluten free toothpaste and shampoo is something she should have or if it is just one of those marketing schemes for the gluten free gullibles…and we need to throw her into this and hope that she will not cheat at school.
So, on we trudge. The family with the best chance of earning the “most amount of invisible conditions in one household” award (if it existed).
Shit, does that exist? Cause we could use an award right about now.
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 don’t know why I do this.” He whispered to me through his tears.
My heart ached for him.
He had just spoken to me like I was the worst of the worst. He swore, he dis honed me, he called me mean, a monster, “stupid fucking mama!”.
He said he hated me.
My heart sunk, but I held on to him, loving him harder.
My heart sunk, but I looked at him with soft eyes and understanding.
My heart sunk, and I sat there wondering if this was really making him hate me.
I walked away for a minute, respecting his wish for me to not touch him, not look at him. As he sat at the table writhing in anger I waited. Waited for him to take a breath. And when I saw it from the corner of my eye I asked him gently if he wanted a hug. “Yes” he sobbed, then he collapsed into my arms and whispered “I don’t know why I do this”. I held him tighter and said that it was ok. That I *did* know why he did this, and it was ok. He was allowed to be angry, to be furious. I told him that I understood he didn’t really hate me.
“I hate diabetes” he said.
“Me too” I responded.
I have since started saying “you don’t hate me, you are angry with me.” And, “you hate diabetes and getting needles, not me”. He will often immediately agree, he’s a reasonable guy that way. In fact the other day he replied with: “I do hate it. I wish it was gone from me. Not given to you, or to Pups, or to dad, or Tig or Bean…just gone from me.”
I get it baby.
This whole experience has been surreal. Every time I change a lancet in his “finger poker” or start prepping the insulin pens I think: “No, this can’t be real. How can Bear have Diabetes? This wasn’t supposed to be his story.” When he started having nightmares right after being diagnosed about dying when he was six years old I couldn’t help but fear the future. Sure, it was just a dream, I knew that deep down and that is exactly what I told him – but my lungs were tight and my hands clenched tight for many weeks until I could convince myself of the same thing. I’m still scared, to be honest.
He caught strep and the diabetes reacted. His blood sugars jumped up to extremely high levels. We had to “correct” his doses of insulin by giving him extra shots during the day and night. We had to check his blood sugar levels every two hours. Five days of this till his levels finally dropped. Our first illness + diabetes. We made it through.
Last night, when he dropped to a dangerously low blood sugar level (twice) and would not wake up at first and then, once awake, refused to drink the cup of juice we had for him – we were struck with the realization that we might be forced to give him a shot of Glucagon (a fast acting sugar kind of like an epipen’s fast acting adrenalin dose). We were scared. Thoughts of coma and death rushed by my mind through my instinct as a parent to get this kid to drink some damn juice. This disease was becoming ever more evident, more prominent, more real. Now it was taking over our nights, not just our days. I couldn’t sleep anymore, not when I knew I was getting up at 12am and 3am to check on him.
He finally took the juice, and as vehemently as he had refused it – he now drank it. He turned his back to me saying that he hated me and would never look at me again and then he drank. And with gusto as if he had been without water for days while trudging through the Sahara, he drank. He drank like a hungry newborn nursing after hours without its mother, ingesting the liquid like he might never drink again. I took a breath, satisfied that he was giving himself what he needed, finally.
Through the massive gulps and swallows he sobbed.
My heart broke for him.
As his body shook with weeping I quietly reminded him it was ok, that I loved him, that he would feel better now. He ran into my arms and wept some more.
My skin, like a Rhinoceros, is thickening, toughening. I am getting through more and more of these moments. And as the doctor so eloquently put when we first met him a couple of months ago “you will get used it. It will all become a new normal.” Fuck him, he was right.
I hate this normal.
Now it looks like Bear might have conjunctivitis accompanied by stuffed up sinuses and a cough. With Diabetes, it is dangerous when he gets sick. His body’s immune system has been compromised by the diabetes, he doesn’t just ‘have a cold’ anymore, his blood sugar levels rise unexpectedly to dangerous and potentially life threatening highs. We are on high alert, we watch, we listen. We are getting wise to this disease. Noticing when his little body is shaky, even when he doesn’t, even when he can’t – even in his sleep. We are noticing the extra giddiness when he is high and the moodiness when he is low. Illness, blood sugar levels…we cannot dismiss these things anymore. There is no safe zone but the safe zone.
We work our hardest to stay at a blood sugar level of between 6 and 12. We push for 8. It isn’t easy to figure this all out. We have no choice, we must try. If we can, we must succeed.
I am sleeping with him tonight. He is snoring horribly through his stuffed sinuses. He kicks, he grinds his teeth, he steals the blankets. I won’t sleep well. But if he starts to shake, I’ll notice. If he goes pee more than once, I’ll notice. There is no safe zone but the safe zone.
We must stay in the safe zone.
And if he wakes up from a nightmare, I’ll be there. Right there. No matter what he says to me, because for him – I am the safe zone. And I will stay the safe zone no matter what, that much I can ensure.
That much I will succeed in as long as I can, as long as he’ll let me.