The Magic Of A Mother -or- Dead Birds

 

 

My mother left me a total of 4 times.

 

The first time she left I was 2 years old. She had tried to leave a few times beforehand but had been met with the end of a butter knife by my 9 year old sister. I’m sure she was impressed by my sister’s hutzpah and as an avid feminist decided to give her a win. But hutzpah can only delay the inevitable for so long and eventually she left all the same. It wasn’t in her nature to be nurturing. She was tough and way too smart for her own good. She loved us in the only way she knew how. Which didn’t much seem like love at all. Certainly not compared to the way my father and sister and grandmother loved me. Too young to know anything different I only discovered that I longed for a mother’s touch and comfort when I spent time at my friends houses and watched their mothers mothering. But how I longed for it when I witnessed it, the magic of a mother. That gentle way about them, how they always seemed to know how to help and how kind they always were to me. As if they knew. And they probably did.

 

My father raised us without her and he raised us to be tough. Not tough like our mother, but tougher than our mother. Or that was the hope. My mother was paranoid schizophrenic and our father feared that her “crazy” might one day become our crazy. And so I think in his fear he tried to stifle any part of us that resembled her. To protect us and to protect himself. He always told us not to cry. If we cried we had to be bleeding and if we were bleeding – what good would crying do anyway? And so we learned to stop crying. Tears became less and less of an issue as we figured out how to roll up our sorrows and fears into hard tight fists and trade them in for anger, anxiety and drive instead. As a sensitive child, this was a hard lesson to master, but I practiced. 

 

You can do anything with practice. 

 

It was no secret that my mother had a mental illness. My grandmother and father spoke about it together, and even with me, often. My father openly referred to my mother as “sick” in an effort to take any blame off of who she was as a person and lay the blame instead on her illness. In my mind I switched the word “sick” to “crazy” because crazy didn’t feel as permanent or infectious as the term “sick”. Hearing my mum described as sick, or crazy, struck the loudest during the summer of my fifth year when she introduced me to the dead birds she thought were being left around the city as a warning that the FBI was watching her. At first, when I was still very young, I would openly describe my mother as crazy to others, using the term as more a term of endearment than anything else. As the years grew on I would begin to describe myself as crazy. Romanticizing the idea that “crazy” meant I was like my mother, who no matter what, was my mother. A woman I looked up to and adored.

 

During the summer and winter breaks my sister and I visited our mother. This was a treasured time. My mother would take me on long adventures through the streets of Montreal. We would explore museums and old churches all the while obviously keeping a watchful eye out for dead pigeons. She taught me to appreciate old architecture and the art of speed walking everywhere. We went to new parks and strange new book stores. She took me to festivals and toy shops. She loved art and photography and writing. She made me love it all too, and I wanted to be just like her. She was fun, so fucking fun. Her short black hair and lipsticked red lips, the way she always wore a beret like she really was French. She wasn’t.

 

But with her I also learned that not all women, not all mothers, were cuddly and kind, and sweet. Not all mothers are magic. Or at least, they are not always the magic you expect them to be, or think you need them to be. I’m not sure she ever held my hand, except to cross the street. Although I desperately tried to slip mine into her’s at every chance I got. My father hugged me all the time, but the closest I ever felt to my mother was when she would begrudgingly lay beside me at night to help ward off the nasty pirates that hid beneath my bed. She had large soft breast and a squishy belly that I would press against with my head in an effort to be as close to her as possible. I hoped I could be swallowed up inside the folds of her skin and rest with her forever. She often left the bed before I had a chance to fall asleep. My clingy obsession with her and my insistence that she love me better only worked to keep her moving further away. Later, while snooping in my father’s desk, I would come to find a note he’d written to my mother practically begging her to consider having a child with him. That child was me. In that moment I knew my mother had had me for him, and not for them, not for herself. I wondered if deciding to have me might have been the catalyst for what had led to her ultimate departure.

 

The second time she left me I was 9 years old. She didn’t exactly “leave”, she sent me a letter. Or maybe she called my dad. I only remember that she didn’t tell me in person. She had decided that I was safer without her. She lived in a bad neighborhood in Montreal and used “keeping me safe” as her excuse for no longer being a part of my life physically. It was Christmas time when she told me we couldn’t see each other again. I was visiting with my aunt and uncle in Montreal at the time and remember vividly weeping at the big window of her town house, looking out onto the snowy streets while warm tears soaked my face. Here I was in the same city that my mother was in, so desperate to see her and convince her to keep me, but unable to get to her. Helpless. This was the first time I had ever felt heartbreak. True rejection like no other. Like a broken hearted lover in need of a replacement I found myself clinging to the mothers of my friends in hopes they would adopt me. 

 

Rebound mothers. 

 

The third time I was 12. I had gathered all my courage and asked my aunt to take me to my mother’s house to surprise her. I figured if she was surprised by my visit she couldn’t deny me the opportunity to see her. I was right, she was shocked enough to let me in to her apartment. I probably should have known this was too good to be true. I went in alone as my aunt waited in the car. She didn’t have to wait long. I knocked on my mother’s door and she opened it with a look that should have warned me this was a bad idea. She didn’t hug me even though we hadn’t seen each other in years. Even though I was her daughter. I nervously invited my mother to my 13th birthday party – a bat mitzvah of sorts. After all, it was her DNA that made me a Jew at all, it was her who had told me I was Jewish, I assumed she might want to be part of this special coming of age celebration. I was wrong. She reacted differently than I had fantasized she would. Than I had hoped. She kicked me out. And again my heart broke. In retrospect it is easy to see how someone with mental illness might not do well in a surprise situation where they are being asked to answer a request they were not prepared to get. But children don’t think these things through. And even though I know better now, I might make the same mistake again. The heart wants what the heart wants.

 

When I was 16 years old she flipped the tables on me and decided to reconnect. She wanted to come back into my life. Or at least that’s what she said. I was suspicious of her motives and convinced this was a trap. Sure that I would be swooned into the fantasy of finally having a mother that wanted me and then having her promptly leave me again. I wasn’t wrong.

 

She stuck around for a year. It was one of the most emotionally turbulent years of my life. I was euphoric and suspicious. I was hopeful and angry. And like the broken hearted lover who remains obsessed with a life and love once lived, I realized I had never stopped loving her and I was more desperate than ever to reconcile our relationship. But reconciliation didn’t come without my need for honesty. So I confronted her about the abuse and neglect I had suffered at her hands. It had been difficult to gain the courage to do so since I knew doing so would be to chance her leaving me again. In fact I was convinced she would leave again after being confronted with this. At least, I told myself, this time if she left it would be on my terms. At least, I thought, I’ll be ready this time. I gathered my own hutzpah and I described to her all the things she had done and how they had made me feel. I wanted her to feel remorse and to apologize to me. I wanted to forgive her. 

 

She denied it all, but in a surprise move she did not run away. I was angrier than ever at her, but I could not give her up. Not when I had waited to be reunited with her for so long. Still, I couldn’t conceive of why she would deny me this truth. After all these years, after all I had lost. But I was not a mother at the time. I was still a child. I hadn’t yet felt the reality of what it is to be the keeper of another person. Of how much responsibility and sacrifice is demanded of you. Of what the world expects of you as a mother and what it will not accept, what it will not forgive. Of how it might have broken her to admit that she had been hurting me so much for so long. Nobody tells us that motherhood is a test that you will fail over and over again. They only tell us not to fail. They only tell us that to fail is to fail your children. But the deck is never stacked in our favour. How can it be? Life is about lessons. About mistakes. And all the in-between.

Nobody tell us how much motherhood strips you of your own identity or at least the only identity you ever knew. Of how you can lose yourself if you aren’t careful to care for your own needs too. Of how terrifying it is to love someone as much as you love your child. Nobody tells you about the fears that accompany motherhood. Will my child live? Can I keep them safe? And how much anxiety this creates that festers inside you, especially if you can’t calm these thoughts. Especially if you are also grappling with mental illness. What if you don’t trust yourself to be a good mother? What if you believe your children are better off without you? A mother only ever wants the best for her children.

 

And now that I am a mother I know how hard it is to admit you might have hurt your child, someone so precious to you, someone you love so deeply. You might ask yourself how I can believe that she loved me at all. I didn’t for a long time. But the more I grew and lived and loved and faltered in my own life, in my own motherhood, the more sure I am that she loved me. It couldn’t have been easy to hear how I saw her, to hear what I said she’d done to me. Whether she believed it or knew it or not, she knew I believed it. She knew it was my truth and that must have been enough to break her heart.

 The fourth time she left I was 4 months away from my 18th birthday and only weeks away from giving birth to my first child when, with all the leases of every apartment she had ever lived in stuffed in her backpack, she threw herself in front of a subway train. Being 9 months pregnant and having decided to forgive her with or without her acknowledging the abuse I had been through, I threw myself into the excitement that my mother would be at the birth of my first child and forever in my life here thereafter. And even though I had suspected something like this would happen, hearing of her passing shocked me and threw me into a tailspin. I had given into to hope, even with mistrust beckoning me back to reality, and so although I had had years and years of preparation for her untimely death, it hit me hard and I reeled from it. They weren’t kidding when they said that hope springs eternal.

 

My father was the one to tell me. I can only remember seeing my hands reach for the car door handle as we drove down the highway. The baby was kicking like crazy inside me as my father pulled over as quickly as he could in an effort to stop the car before I hurled myself out of it. Of course I didn’t want my unborn child hurt, but I wasn’t thinking about hurting anyone, I was thinking of escaping. Escaping this intense and uncontrollable pain that was vibrating inside me. In my father’s face, in his desperate eyes, was all the agony a parent has when their child is hurting a deep desperate torment like no other. One that he could not solve or help. I have felt this pain, the pain of the parent that must clean up the pieces. The parent that has to be more because the other won’t be, or can’t be. The helpless parent that can only watch while their child writhes in anguish. It cannot have been easy for my father, but then again – it wasn’t easy for my mother either. She didn’t live a life of leisure, happiest without us. I know this because she told me right before her death that her biggest sadness was leaving my father, leaving us. And I guess that’s all I needed after all, not for her to admit her wrong doings but for her to tell me she missed me. Because I missed her so much.

 

Society, so accustomed and accepting to men leaving their families are shocked to learn that my mother did. Many people in my life couldn’t come to terms with how a mother could leave her own child, refuse to see her, reject her. But the answers were always simple. She just left. She just couldn’t. She just did. As a mother, I know now how much this must have torn her apart. Every single time. Sometimes courage and resolve look a lot like cowardice and desertion.  

 When I look back now, passed the pain and the demons and the sorrow, I can see the love and care and kindness in her actions. I can see that my mother never left us alone.

 

She’d left us together. 

 

 

Edited with BlogPad Pro

Nothing Happened, But It Almost Did.

Nothing happened
But it almost did
I am carrying that
Almost
In every step
In every breath
I am having a difficult time
Figuring out how to handle the grief
Of an almost

My daughter Shai wrote that.

Like her, I too am having a difficult time.

It’s been exactly one week since it happened. My body is tense today even though I can’t picture it. I have no residual memory of that night, not in pictures anyway. I can still hear it, but I can’t remember what he looked like that night anymore, or how raw and wretched the whole experience was.

But I can still hear it.

Every scream and cry. I can hear the sounds of Kevin pleading with the 911 operator to hurry and Nava yelling out “HOW CAN I HELP!?” And “I DON’T KNOW HOW TO HELP!” And “WHAT CAN I DO!?”.

I can even hear my own desperate yells into the abyss begging the 911 operator through Kevin to “please please hurry!”

I know what happened because while I sat beside his hospital bed listening to the sounds of the machines monitoring him I wrote it all down. But I can’t see it in my mind’s eye. Kevin and Nava are a different story. They can’t ‘unhear’ it or unsee it. Photographic memories are common with people on the spectrum. Nava can’t even talk about it. Who knows if she’ll ever be able to.

Like Shai’s poem, I don’t really know how to feel these days. I’m sitting in a strange limbo where I grieve for the son I didn’t lose over a moment in time I can’t even properly remember. And to my unfortunate surprise, that grief doesn’t dissipate even as the days pass, though he still lives. Instead it sits in the air, a heavy humid air, filling my lungs and holding down my heart. A sadness that doesn’t make sense for all intents and purposes because I should just be happy, because he lived.

And all this over a Sprite. He just wanted a Sprite.

He was 10 years old now after all, and the rule always was that when you were “double digits” you could have pop sometimes. Of course this was the general rule for all our kids, who we rarely allowed pop to anyway. But Jax had diabetes so the rule folded and wrinkled for him differently than it did for his siblings.

Yes, Jax *could* have pop now, but he still had to abide by the diabetes rules we had set upon him and “wait till he was low”. We thought this was a reasonable request, especially since he’ll likely get more pop in his entire lifetime from addressing low blood sugars than his younger brother Phineas ever will. We thought we didn’t have to explain further, this was just “the way it was” for Jax, didn’t he understand that he was just different?

Perhaps he thought that with perfect blood sugar readings he was entitled to a treat. Perhaps he WAS entitled to a treat!

Perhaps I should have considered that a treat is ok every once and a while. Wasn’t I the spokesperson for him and his disease, always touting that he was allowed to have anything he wanted as long as he gave himself insulin for it?

Perhaps I should have been teaching him all the ins and outs of diabetes instead of taking over the reigns and waiting till the “right time”, till he was older, to properly educate him. Why hadn’t I taught him about overdosing yet?

Perhaps I was afraid that this child, my child, who already had to deal with so much on the daily might be scared if faced with even more reality. The truth about his own mortality and how close to death this disease keeps him to it. Always.

His blood sugar readings had been perfect all day.

I mean perfect.

I’m surprised a tiny diabetes fairy didn’t appear to grant us a free wish – that’s how perfect his numbers were. And when he came in from playing hard at soccer and asked “can I have some of this Sprite?” I said: “no, wait till you go low”. And when he went to get a snack from the kitchen I said: “don’t give yourself any insulin for that snack, you’ve just played soccer and you’ll go low”.

In telling him why he needed to avoid the Sprite I gave him the information required to get that Sprite. But in all these years I never gave him the information and the autonomy of his own disease that he needed to keep himself safe. I told him the insulin would make him “go low” and he wanted to “go low” to attain that precious Sprite. I didn’t ever tell him that insulin was as dangerous as it was necessary. I didn’t think I had top, not yet anyway.

I gave my impulsive, often unthinking, 10 year old the tools for his own demise.

At bedtime Kevin had tested his blood sugar and was pleased to see a perfect blood sugar reading of 6.2mmols. Without extra technology (like a CGM) to inform us otherwise (like double arrows pointing downwards warning of a dangerous low to come) we assumed Jax was alright. Better than alright, perfect.

A mumble. That is all we heard, and barely at that. We would have ignored it if something inside us hadn’t said “better check it out”. Instincts I guess.

“Get down here and help me” Kev called up the stairs. His voice slightly panicked. I was immediately reminded of the night Jasper had a seizure when he was younger. There was a pause in my thoughts where my own panic set in briefly as I caught myself thinking “could this be another seizure?” but I dismissed the thought as quickly as it had appeared.

When I got in to the boys room Kevin asked me for a juice box. They were right on the dresser so I was surprised he required my help for such a simple task, but he was fumbling with the meter case looking for Jax’s blood testing kit and saying something under his breath about how he hadn’t been able to find it where he left it.

I came towards Jax with the juice box, slightly annoyed that my husband couldn’t complete this task by himself, but could tell immediately something was wrong as soon as I looked at Jasper. He wouldn’t look at me and he refused the juice box. His eyes stared straight ahead in a terribly frightening gaze. He jerked away from me as I tried to push the juice box to his mouth and as he began to shake and tremor I saw the disconnect happen in real time. This wasn’t like the other seizures I had seen before, I began to panic now too.

I knew the juice wasn’t going to get into him, though I did continue to try while I yelled at Kevin to get the glucagon ready. Kev handed me the syringe and glucagon powder.

And then *I* fumbled.

And then I bent the fucking needle.

To add insult to injury I then went on to contaminate the sterile needle by clumsily and absentmindedly attempting to straighten it with my bare hands. Realizing what I had just done as soon as I’d done it I yelled at Kevin to get the only other one we had in the house. The one in my purse.

Jasper’s body was now contorting and stiffening – he stopped breathing and twisted into weirdly uncomfortable positions. I watched him gasp and then turn blue again. I watched him foam at the mouth and grit his teeth together as if he were being executed by electric shock.

Everything was so much what you expect death to look like and feel like. I kept thinking if I didn’t move fast enough I would lose him.

I had no idea how much or little time I had. This was the most violent and gut wrenching seizure I had ever witnessed. I was positive that I was watching his last moments.

I had already begun to weep fo him. For the loss of him.
I didn’t know how to save him.

I worked much more slowly and methodically with the second glucagon set while still thinking “how can this happen? How can I not save him? How can I watch him die!?” If ever there was a moment of all or nothing, this was it. I took a deep breath and filled the vile of glucagon powder with the water solution and shook that into a combined mixture. It seems strange to think that in a moment of such chaos and emergency I would have to slow right down and focus on this task. With shaky hands and baited breath I successfully filled the syringe with the life saving mixture and felt more confident about the situation till I turned around to discover he was wearing a fucking onesie and I needed his thigh!

As I struggled with pulling the onesie down to expose his thigh his head jutted back and stretched his neck long in an unnatural way. His eyes rolled back and his mouth gaped open. His hands stiffened into permanent reaching claws and his legs folded into himself as if he were still in the womb. I thought I was too late but I had to try anyway, so I stabbed him in the thigh.

After the glucagon injection I tried to hold him down with my body. This was what Kevin instructed me to do as per the instructions of the 911 operator. But also I was trying to soften him because he was so stiff and I wanted to hold him one last time while he was still alive if I was going to lose him that night. So I held him on his side and I squeezed hugs into him and sobbed. And his body began to tremble as the glucagon kicked in. He began to moan and flail – so I excitedly tried the juice again, but he spat it in my face. I knew we weren’t out of it.

I kept screaming “WHERE ARE THEY!? WHY AREN’T THEY HERE!?” To which Kevin would respond: they’re coming. I promise. Try to calm down, he can hear you.

Maybe he could hear me. My begging pleas of “stay with me” and “ please don’t die”. But how could I calm down? I didn’t know which breath would be his last.

That is how close to death he came.

We stayed at the hospital all night. They admitted him and kept him on heart monitors and IV bags filled with glucose that were being replaced as quickly and often as he went through them. He kept going low and we couldn’t figure out why. The Doctors and I came to the assumption that his pump must have malfunctioned. We wondered briefly if maybe Jax had accidentally overdosed himself, but decided that he couldn’t have – wouldn’t have – in the end.

We were wrong.

He told me, after I had decided that I was going to rip off the “defective” insulin pump (burn it) and sue the company, that it was actually him who had given himself almost 16 units of insulin. I must have looked shocked and dazed because he continued of his own accord: “I wanted the Sprite mum, so I gave myself insulin when you told me not to. And when I still wasn’t low by bedtime, I gave myself more insulin.”

In fact he gave himself 7.90 units the first time and an additional 8 units half an hour afterwards.

In fact he wouldn’t have made it to midnight if we hadn’t heard that quiet mumble.

In fact his heart would have stopped.

In fact he would have died.

Dead In Bed Syndrome they call it. They don’t know much about it except that the diabetic is found dead in their bed by morning. They believe their hearts stop when they go untreated for hypoglycemia.

A CGM could not have prevented the lows he suffered that night as he had quite vehemently overdosed himself. But it would have alerted us that something was wrong and then kept alerting us till we did something about it. If we had missed that tiny mumble, as would have been easy to do, the CGM would still have sent the alerts to our phones and alarmed and alarmed and alarmed again till we dealt with it. In fact we likely wouldn’t have put him to bed as we would have been preemptively dealing with the lows.

Kevin told me later that Jasper was speaking or groaning or making any sounds when he first went down to check him after hearing that tiny mumble.Jax was lying on his stomach staring at Kevin wide eyed. And then his leg jerked.

The silence of his seizure was deafening.

This means that if we hadn’t heard him during that first seizure so many years ago that the likelihood he would have died that night was just as high. Especially if we didn’t religiously check his blood sugar at midnight and 3am every night.

Our doctor once told us that seizures don’t happen to all diabetic children, that they were rare, and not to worry. Our nurse had told us to stop checking him at night so we could rest. She said, he’ll wake up and let you know if he’s low. She promised us this. The group of parents of type 1 diabetics that we met with in support groups when Jasper was first diagnosed told us different.

The diabetes community, not the doctors or the nurses, but the parents and diabetics themselves said “stay alert” and “don’t listen when they tell you not to check them during the night”. They pleaded with us “check their BG’s twice a night no matter what anyone else says because this disease is insidious, unpredictable and all too often deadly.”

But that was 5 years ago. Today we have the tools to predict these things, the tools to save their lives before they are in too much danger. If we had had a CGM Kevin would have seen more than just a perfect BG reading at bedtime. But CGM’s are expensive and not covered by OHIP. Those of us with low or one income families must learn to live without it or must ask for help (beg) from others to gain access to these incredible life saving devices.

Had the tv been louder, or the AC on, we wouldn’t have heard him. Had we listened to all those medical professionals when they had told us not to worry, and that it wouldn’t happen to us, and to sleep throughout the night…we might very well be a family of 5 and not of 6.

But the parents who had lost their children, or come close like we did this time. They fucking knew.

As I struggle through the PTSD of that night I see more clearly than ever the enormous amount of people suffering with TYpe 1 Diabetes that are still so misunderstood and neglected by society and the government. I find it difficult to grapple with the fact that the Canadian Government (in Ontario) only JUST started covering life saving prescriptions for diabetics (and only prescriptions not all the overhead that also has to be purchased to manage this disease) and that this only covered those under 25 years old. And this is in Canada where healthcare is amazing, so you can only imagine how much worse coverage (or lack there of) is for Americans.

And I wonder to myself, as many of us do, how can a life saving device such as a CGM be widely and openly recognized as life saving, but then not be covered by our governments who claim they hold the best interest of their people at heart. Especially as not all children with type 1 diabetes can be educated properly about their disease as we had wished we had done preventatively with Jax.

Although we are now telling him everything about his diabetes, we know their are children with Type 1 that are not able to care for themselves or be properly educated about it. These children do not have a voice in this system and would, more than anyone, be helped by CGM’s.

So why would the government deny the needy?

The uncomfortable answer is: This is classism.

The poor are left to luck, the middle class to debt and the wealthy to the ignorance of their safe nests.

I once wrote Justin Trudeau pleading with him to help cover the costs of CGM’s. I thought “he has children! He’ll care! He’ll understand!” But i forgot to consider that he is wealth. If one of his children got type 1 diabetes he wouldn’t wonder what tools he could afford to get to keep his loved one alive. He would simply get all the tools available. He wouldn’t ever have to decide between bills, groceries or life saving equipment.

So yeah, I am having a difficult time.

Disengage.

I spent my 45 minutes in therapy talking about it. I was going to meet her at the Tim Horton’s by my appointment. I chose the place because I wanted to have spent that hour beforehand taking it out with my therapist. She was late, which made the anticipation of the upcoming break up awful. When she got there she ordered a drink and sat down across from me on the uncomfortable stool at the ridiculously high round table I had chosen by the window. I let her do the talking, having nothing to add myself. After all, this was her schtick, not mine. I would have carried on for years with her outwardly hating me and me desperate for her love and approval. What can I say, I have a knack for this kind of stuff.

She used words I can only assume she got in her own prep therapy sessions on how to end our friendship. Words like “disengage”. And I’ll be honest, even in my moment of pain at her ending our friendship I paused and thought “did she just say ‘disengage’?” – and immediately pictured Picard comedically yelling “DISENGAGE” from his enormous chair on the bridge of the USS-Enterprise-D.

Although this came as no surprise, it stung badly, and I ran away sobbing after quickly “disengaging” form the situation by excusing myself to exit the building. I’m not sure when I knew. I certainly knew before the day she told me. I had been talking about it for the last few months with others before that fateful day. But let’s be honest, I had known for years. There was always a feeling of dread that accompanied our friendship. I could always tell that she wasn’t completely committed to me as her friend. She looked at me with such disdain so often, worse was when she looked at me with pity and regret. A look that rang with loud undertones of wishing she had never met me in the first place.

We were friends for 6 years. And in that 6 years I always wondered why she hated me so much.

She was my best friend.

I was not her’s.

I’ll admit that I am a high maintenance friend. I’m a loud talker, a complainer by nature and a chronic interrupter. I have baggage, so so much baggage. I have ADHD, Anxiety and BPD. None of which make it easier to be my friend. I’m emotionally irrational at times and way too sensitive most of the time. I take too many things personally and I too can be cruel when given the opportunity. However at the time we met I wasn’t going through any of the REALLY heavy shit that was about to hit the fan yet, and I was relatively stable. In fact (at the time) I was going through my most stable and happy time in my life. I had just had my third child and was spending most of my time at the parenting centre (that we met at) just hanging out and enjoying life. All my kids were happy and healthy and I still had a job to return to after maternity leave. It was a time in my life that I can sincerely say I was at my most authentic. At least most authentically happy. Relaxed and grateful and without heavy burdens, I could talk easily about my interests and goals. In fact I was interesting! I was creative, I had energy (albeit limited by being the mother of a young baby), I was easy going and I was fun. She had the loudest laugh I had ever heard and a fierceness to her that I fell into with both envy and adoration. She made me laugh, God was she funny. She caused me to question anything and everything. She was the part of my youth that I skipped when I had a baby at 17. She was mischief and brutality, she was excitement and beauty. She was brave in ways I had yet to witness and she made me feel more alive when I was with her.

I fell in love with her.

To me she was one of the coolest people I had ever met. She was a photographer and a musician. A feminist and an advocat for anyone who was in a minority. She taught me about strength and independence in a way that I had never known before. She educated me on white privledge and truism. She inspired me to learn about politics, to listen and read about the World today. To look at the world through clearer eyes so that I may see it for the first time in a way I had never seen it before. I can never know for sure, but I can only guess that I offered her a younger version of herself, and someone who looked up to her and idolized her. Someone who had lived a very similar damaged upbringing and whose damage still hung there like a coffee stain in a favourite shirt that you wear anyway.

I was a clean slate. A slate on which she and I could create the image of what I should be. I made her laugh and I drank in everything she said and did. The undying flattery I offered up to her perhaps gave me a small place within her heart. Though I’m not quite sure if she ever liked me, she did love me I think, in a dysfunctional way. It’s hard to know for sure because she was as cruel to me as she was kind.

She could never have known what was to come, neither could I.

As soon as we had established a strong bond – my life began to unravel. About 2 years into our growing friendship I ended a friendship with my then best friend, I had a new baby (my fourth), just bought our first house and my sister was diagnosed with breast cancer. My second eldest had been showing signs of being more than just a “Spirited Child” (if not for my efforts at buying every single book that would/could/should diagnose her otherwise). Obsessive by nature I started to research any and all potential reasons for Bean acting out in the way she was.

My friend was unimpressed and most definitely uninterested.

Every time we spoke I wanted to discuss my findings. I wanted to understand what was going on and avoid thinking about my sister who I was ridiculously worried about. I was convinced Bean had ADHD and determined to get her assessed and in some sort of therapy to help us with the challenges of parenting a child that was “more”. My friend poo pooed my efforts with things like “labels are bad”. She rolled her eyes when I wanted to chat about it and even more so when I expressed concern about my kiddo. I noticed, and I tried to hold back and I tried to open the conversations to things going on with her. But it wasn’t just that she didn’t want to talk about me, she didn’t seem to want to talk about herself either. I spent most of our friendship wondering if I talked too much (I probably did), wondering if I was interesting (still up for debate) and I constantly felt as if I was taking advantage of her, or too clingy, or too open, or even too weird (ask me about the time I changed my baby’s name over and over again…). The more I tried to chip away at her wall, the more it grew. It left us with nothing to say to each other, nothing personal or substantial to a close friendship. She didn’t care for my life and my struggles and she didn’t like or trust me enough to care to talk about her’s.

I second guessed every move I made and prepped myself before every visit to remember not to talk about subjects she wouldn’t like or might mock me about. Some visits were so obviously awkward and uncomfortable that even I sometimes considered if it was time to break ties. She began to bore me, and I can only assume I had been boring her for years. I was never quite worth the trouble or worth the time. One might ask themselves why she bothered at all? I was definitely the weak one in the relationship, she could have easily broken my heart at any time. Maybe that was the power I carried. The power of an easily broken heart. In my darkest moments, when I went through my nervous breakdown shortly after Bear’s T1D diagnosis, I considered dark things and expressed them to her. Maybe it was at that moment that she decided she could no longer be my friend. And though that is fair, of course it’s fair, it doesn’t explain the previous years of insidious cruelty she acted out upon me. When we were out with friends, even very early in our friendship, she mocked me openly at every turn and even when we were alone she always had the incredible ability to assure me that I was uneducated and naive. Probably she wasn’t all wrong. I’m sure she wasn’t.

She was the friend that doubted my worry at Bear’s increasing issues with pee accidents and his change in personality. I’m sure I know why, because at first I related it to ASD. She hated my fixation with ASD, especially my need to write about it and openly publicize it in my blog. Exposing myself and my kids in this way lost a lot of respect from her. I can only guess that she felt I was victimizing myself and romanticising the condition. In truth I was in a way. I was also worried, and interested. I was also struggling with what this meant for my child and what it would mean for me as a parent.

I wanted to talk about it. To reach out to those that understood. But my worries, my valid issues and need to relate to others, were trumped by her critiques of me. In the end, I suspect that to her, all I was was an obsessive attention seeker with a need to expose my children for my own benefits.

Today a mutual friend of ours posted a photograph to Instagram that my ex friend had taken, and I decided to check out the ex-friend’s page. I wondered if she had ever posted any of the photography I had done for her. In fact she had. And though she always prided herself with being a morally sound photographer who asked people before she took their pictures and never posted anything without permission, she did not credit me to these photographs. I assume she never thought I would see them since we had blocked each other from each other’s profiles long ago. Alas, I have multiple accounts and was able to access it through the account I was on when I was scrolling my Instagram. I wasn’t angry, but I also wasn’t having it. In the first time in years, I contacted her and called her out on it. She apologized and said she had removed the images, which in my opinion was a bit extreme and unnecessary.  After all, all I asked for was recognition. Her crediting me my work did not mean we were now best friends again. Seriously, I just wanted credit on my photographs that were clearly being liked by a large audience. But hey, deleting them worked too I guess.

After our brief communication about the photographs I decided to write her again. This time I sent her an email detailing my feelings about our past friendship and our “break up”. It may seem trite, or pathetic even, that I chose to do this, but – like the steps an alcoholic takes after they quit drinking, this was something I felt I needed to do to move on. Something I felt she needed to know.

That she never fooled me.

That she wasn’t a very good friend to me and that I always knew she didn’t respect me.

That despite it all, I loved her anyway.

That there was a lot of good that I gained from our relationship.

That I didn’t ever regret it, any of it. Even the end.

That even through her obvious dislike of me, she inadvertently caused me to love myself better. She caused me to question why she treated me that way and whether I would ever allow anyone else to do the same.

And I did learn to love myself better. I learned that just because someone thinks you aren’t worth the trouble, doesn’t mean you aren’t. I learned that it’s ok to talk about your struggles and even to expose them. Because it’s also ok to want the world to know. It’s ok to search out others like you. I learned that even bad relationships have worth if you can find the worth in yourself. I learned that you can love someone so much, and that doesn’t mean they’ll love you back. But more than that I learned that I can be ok with that, I can move on without regretting any love I gave even when I was alone in it.

Perhaps her best lesson to me was that life is too long and too short to carry grudges.

I walked away from her sobbing, yet still I was a stronger, more independent and more confident person just seconds after she said goodbye. The best thing she ever did for me, though it might have been selfishly motivated, was to end our relationship.

What she saw as a weakness in me might actually have been strength. Maybe loving someone anyway, through their shit, isn’t always the wrong move. Maybe it means that my heart is forgiving, and kind. Maybe it means that I am a good friend and that my heart isn’t so easily broken after all.

Edited with BlogPad Pro

Before You Knew Better

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.

Before.

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

But I know better than before.

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

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

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

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

Before it mattered to me for him.

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

Edited with BlogPad Pro

This boy’s life.

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

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

Shit.

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

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

I got you baby.

I check his blood sugar, 1.9mmols.

Fuck.

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

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

But who cares. I’ll just get stronger.

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

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

15 minutes later. He’s acting normally now.

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

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

How did we fuck up? We ask ourselves.

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

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

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

Safe Zone.

“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.

Sixteen Candles.

My daughter just got the party of her life. It was grand, it was big, I’m redundant, it was awesome.

I didn’t throw it for her.

I’m not upset about this. Seriously, I’m not. She’s lucky she got anything at all! Hell, I’m not a “throw a sweet sixteen” type of mom. I’m a “get you your first tattoo” type of mom. So sue me.

First of all, let it be noted that I never got a sweet 16 party.

I’m not sour about it, I just don’t know anything about throwing this type of shindig. Well, other than what MTV has taught me…

But I never expected a sweet 16. That wasn’t our style anyway (my family) – and in any case my NanaNat had thrown me an extravagant and expensive Bat Mitzvah when I turned 13 (as only a waspy blond shiksa might), complete with me getting “secretly” drunk with all my closest and not so close friends, really long and boring speeches made by myself and my family, and many – MANY – family members and family friends of whom I had no recollection of but who all said “Oh look how much you’ve grown! A young lady now!”. This party was the start of a new tradition within our very waspy family (though my sister and I are technically – yes actually – Jewish, by birth right) where every child who turned 13 was given a special ‘coming of age’ party. It began with me, went on to my cousins and eventually it came to Pups. I did not throw her an extravagant party though. Instead I invited all the most important and influential women in her life at that time and we all shared stories of coming of age and how we were connected to Pups in one way or another. We spoke of womanly things and memories and lessons we learned along the way through our various stages and ages. And Pups, as is her style, took it all in grace. I am positive that this was not the most thrilling ‘party’ she had ever had, in fact I am willing to bet that her Easter egg hunt parties when she was little far surpassed this get together of women. Still she exuded the elegance and stature of a true hostess and grateful daughter. I was not only proud of her, I was in awe of the future her, the woman that I got to see in her that day.

And what an experience it is to see someone grow and change and learn and blossom. Yup, I said “blossom”.

She was born on a beautiful Wednesday filled with sunshine and warm breezes. It was 2:38pm when she arrived and the weather channel reported it was a high of 13 degrees outside. I remember that. I watched the day pass from the hospital window, the sun shone in and filled the room with vitamin D. She was born big – 8lbs 6oz – and round and red! She looked like a little Buddha.

She was perfect.

16 years have passed and I have been witness to a baby turn into a girl and that girl turn into a young woman. A young woman with dreams and aspirations of dancing and becoming a chemist. I have watched her childlike curiosity turn to real life experiences that teach you and even, sometimes, age you. From an innocent child to a woman with a sense of her own sexuality and a strength in her beliefs and morals based on fairness and equality. A yearning to never stop learning, so much like my sister and mother. An openness to new things and the courage not only to recognize right from wrong, but the courage to do something about it.

Seriously…I got to watch that all happen right before my eyes guys!

It’s weird to know that my baby, my first, is 16. That I have been a parent, a mother, for 16 years. For half my life I was a teenager, and before I even grew up I was a parent to someone.

Half my life a child, half my life a mother. We grew up together she and I. In many ways she kept me young and I matured her before her time. For a long while we were more like sisters than mother and daughter. So much so that her respect towards me does not come from a natural and expected respect of your mother, but a mutual and earned respect that enabled her – from a young age – to call me on my faults. She has no idea how much she changed my life, or how much she changed me. She was the best mistake I ever made. Because having a baby at 17 is a mistake, do not doubt that. I stunted my education, my career, my young adult experiences that are so vital to grow into someone wise. But having her, well let’s just say that as hard as it was, I have never, not for one millisecond, regretted her. She truly is the best mistake I ever made. She grew me up and taught me how to live.

Her story is so different from my own story, and because of this she is so different – better – than I was then. I can say that, not only because it’s true, but because it really is true. She is SO smart, too smart. She is SO beautiful. Too beautiful. And she is witty and funny and elegant. She is nerdy and goofy and opinionated. She not perfect at all which adds to her awesome. She always has been, and I’m pretty sure she always will be: awesome.

Unless of course she becomes some crazy psycho killer or something… but I think that is highly unlikely, she hasn’t drowned any kittens yet.

So, with all that said, I have to admit – that although I am not a “throw your kid a sweet sixteen” type of mom, I am so appreciative that her step-mom is. In true Filipino style and tradition her step-mom and her dad threw her a giant, extravagant, expensive, super fun, “sweet 16!”. And they are awesome for it.

Because if anyone deserves a really big and super-fun party, Pups does.

Happy birthday Puppy.

In a couple of years I’ll take you for that first tattoo. That’s how this mommy rolls. 😉

The Cube

It breaks me every time.

I hold strong and tape myself together messily with some imaginary duct tape, but still the cracks appear and I weaken with every move of my body, with every breath and bend.

He is a ticking time bomb. Of course he is. His life just got really shitty as far as he can tell. As far as we can all tell. He has no control, he keeps being poked and prodded. 4 needles a day. Count to ten while the insulin goes in. Count to ten while he struggles to get away, to break free of my grip. Count to ten while I hold him down. Wrestling him. Hurting him as gently as I can so he’ll keep still. Just still enough. So the needle won’t break off inside him while I count.

Count to ten.

As I pull out the insulin pens and prep them he asks me every time if he has to have them again today. Yes baby, every day. “And what about a ‘cube’ mama? If they find the cube I won’t have to have the insulin anymore right?” He means cure, and I laugh to think that his world of superheroes and magic cubes has mixed itself together with the reality of his diabetes. A cube, how cute. “If they find a cure, yes, then you will be able to stop taking insulin. > But (I add) they may never find a cure. And if they never do we will always have to do this. But >> (another But is added) they will keep trying to find a cure and hopefully they will find one soon.”

It’s a harsh reality, but the truth is sometimes as important as the dream.

The pens are primed and ready, he pulls out the Buzzy Bee that helps to distract from the pain. We talk about where we will give the shots. He chooses his legs and goes through the order of where the next shots will be given. He likes to make lists and keep organized, I’m not totally unconvinced he doesn’t have high functioning ASD.

Before I stick him he quietly says to himself: “I’m cool.” Yes baby, I say, you got this.

And then it all goes to Hell. He starts to dodge away quickly whenever I get close. The tears start. He begs “not today mumma!”. He keeps saying he isn’t ready. But we both know he will never be ready. I try to give him a minute or two. I can’t wait too long, he has to stay on schedule. I try to explain how important the insulin is. “THEY WILL FIND THE CUBE!” he yells through tears. “AND I WILL NOT TAKE ANY INSULIN UNTIL THEY DO!”

It isn’t cute or funny this time when he says ‘cube’ instead of ‘cure’. To him it means the same thing. I wish there was a cube too, baby. He screams that I am mean. That I am stupid. “Fucking stupid lady, you are not my mom! You are NOT MY MOM!” Tears rush out of him and his body shivers, but he isn’t cold. He is just so angry.

And I am angry.

I never fully recover from the last time we did his shots. I stay trapped in a state of tension, bracing myself for the next time. Knowing full well it will be replayed in just as much horror as the time before – no matter how many ridiculous things I buy to distract him. I feel myself breaking beneath the pressure. I scan websites and books on how to make this all ok again. It will never be ok. It will become normal. It will become manageable. He will stop fighting the insulin shots…eventually. But it will never be fair, or fine or ok. All I want is for this to be over, and it’s only just begun.

What I wouldn’t do to find the cube.

Bear’s new Medic Alert Bracelet.

That NanaNat

 

Today marks the first day we start giving Bear his diabetes treatments. On our own.

Today my grandmother died.

If ever I could have used her sound advice or dry humour. Today was the day.

Instead I hold onto the image of her memory. Her long straight hair, her bangs. Her gold posted bed and velveteen curtains. Her scent. That wonderful Opium perfume scent. The scent that brings me back to her every time I smell it in the air.

My grandmother and I were close, sometimes closer than I wanted to be. She was an instrumental part of my life and my upbringing since before I can remember. My allegiance to my mother however (who hated my grandmother, or appeared to) left me confused and not wanting to be forced to spend time with her. But whether I wanted it or not, my grandmother helped raise me after my mother left, from the time I was two years old. And no matter what my mother said about her, or how much I fought it, whenever I spent time with her, I loved it.

I loved every minute of it.

I was pregnant with Bear when my grandmother went in for her heart operation, the operation that changed her so completely. When Bear was born my grandmother was not the same woman I knew growing up, or that Pups and Bean had the fortune of knowing. She was only ever the woman she had become, a frail and subdued version of herself.

My issues with change created a barrier in me towards this new grandmother that I could no longer recognize. I didn’t know how to and couldn’t relate  to her anymore. But even though I couldn’t get past this new version of my grandmother, Bear adored her. After all, this new NanaNat was the only one he ever knew. When he was old enough to speak he would ask about her, ask to see her. When given a choice about whether to stay home or join me on a visit, he always chose to join. He would sit as close as he could to her and rub the soft aged and wrinkly skin on her arms with tenderness. He would listen attentively to what she told him, and when we would leave he would always mention how much he liked “that NanaNat”.

Her very last days I had stopped visiting. Truth be told, I already didn’t visit as often as I should have since I found that when I did visit I was always struck with an immense sadness at the loss of the person she used to be, at the wild and fierce spirit that I knew as my gramma.

She had been dying for some time now, and we had all said our goodbyes in some way or another. I am lucky that my goodbye happened on a visit with Pups around Christmas in which my grandmother was still mostly aware of our presence. Though she was convinced that I had become a “very buxom” actress in life, of which I am neither buxom nor an actress.

Bear had unknowingly said goodbye to her last summer when we went and had a lunch with her and one of her lovely caretakers. The lunch was wonderful, seeing her at her liveliest for a long time. Bear sat beside her at the table and she sang him silly songs and let him lean on her and pull at her skin. His memory to be left filled with the image of a funny old woman at lunch, with the softest skin imaginable, called NanaNat.

I dread telling him she’s gone. Him, of all my children, most of all. Tig, at the age of two, will not understand of course and Bean will react in her way, matter of factly. Pups has said her goodbyes and long ago prepared herself for this day, but Bear will likely react, whether immediately or throughout the course of a few days. I anticipate questions asked and memories retold. I anticipate a sort of sadness about him that only the closest people to him will notice.

I like to think that in her passing she left a bit of that wild spirit of hers alive in all of us. Spreading it out evenly among our giant family. For myself and my sister, my children and my nephews, my aunts and uncle, my cousins and my dad. And that her spirit will live on within all of us and give me strength right now in a time that I might need it most. That her spirit might give Bear a strength he has yet to know so he can push through these trying times.

If I close my eyes I can feel her, beneath my chest, deep into my heart and in my bones. A fire of energy and spirit, of strength and courage. She is there, in me, stronger than ever before

Manageable

Well, it’s done. Day #1 of Diabetes Daycare is complete.

And I feel like puking.

Maybe it’s the hospital food I ingested ever so willingly. Or the millions of coffees I drank to sustain my energy throughout the day – or maybe it’s just that I feel sick because my kid has a terrible disease, a manageable but terrible – chronic invisible disease. Whatever it is, I feel pukey.

The day was long and though it was certainly educational to the hub and I, to Bear it was boring with a few sides of unwanted f’ing needles…not to mention we had promised him some time in the play center they have there, and by the time we got there it had closed. That was a hard moment. But we persevered, learning about Bear’s failing pancreas and the amount of time that it will take for the remainder of his insulin, 5% – 15%, to wear off – on average 6 months – they call this the “honeymoon period”. Right.

Some honeymoon!

We were shown his diabetes ‘equipment’ (for lack of a better brain to give me a better word at this moment). Pens – that are not pens, but needles for injecting the insulin. A Glucose meter, it’s many strips and the “finger poker” to check his blood sugar levels. The pee sticks to measure the ketones in his body and the pamphlet on what we can feed him, what we can’t, when we can, how much we can feed him and the ‘free’ foods he can eat. We also got a list of the foods that are dangerously high in carbs. We were explained, in detail, what was happening to the cells in his body and that none of this was our fault. They made no claims that this was, in any way, an easy disease to deal with. Nor one we could ever have any room for error with. They did say however – as the books say, and as my friends and family say, and as many times as they could say – that it is ‘manageable’.

Yes. I know. It’s manageable.

But I don’t want to hear that it’s manageable. I know it is, it has to be – or how would he have a chance at surviving? I want to hear about the stuff that isn’t manageable. The bad stuff. The scary stuff. Because I know it exist. I know it because of the letter template that I downloaded for the school. No letter goes into that much detail, with so many warnings and instructions and allowances (that Bear may need to take at any given time in the school day) if there aren’t some serious, scary, dangerous and potentially fatal aspects to this ‘manageable disease’. This disease that has literally fucking destroyed the use of an organ in my small boy’s body.

So forgive me if I don’t want to hear that we will manage it. I know we will, we have to. And I know that friends and family who say it are saying the right thing. Really the only thing that they can say to us at this time. Forgive me if I don’t accept hearing it from the nurses and doctors over and over again. From them I want everything. The good, the bad and the ugly. I have to know everything because I have to be prepared and I have to know what to watch for. I refuse to walk around with rose coloured glasses saying “it’s ok > it’s manageable”. I need my eyes sharp and at the ready, because that is really the only way I can guarantee that it will stay ‘manageable’. That is the only thing I can really offer him that feels like it’s from me during this time when our lives have been taken over with ‘equipment’ and medicine to keep my child alive.

Knowledge is power and that is how I will make sure I am always going to be one step ahead of this disease at all times. I will protect this boy, my boy, fiercely. Even – and especially – at the risk of finding out that the ugly, is really fucking ugly…and scary…and perhaps even – not so manageable.

In the meantime I will manage some sleep, or I hope to. And I will manage going in for day 2 of Diabetes Daycare (which, incidentally, is nothing like a daycare – it’s just a shitty little room). And I will manage my overwhelming emotions of fear and confusion, desperation and despair. Because what I do KNOW is that it isn’t “manageable” – what it IS is that it must be managed. For him to survive, for him to have a chance. 

And yes, I know that we will manage it. Because we must.

Heading home after a long day.