BPD, what it is – and what it isn’t.

 

Recently I have been involved in a study that is attempting to prove that BPD is a genetic condition. In this study I have participated in very thorough testing.

I am so lucky to have been able to be a big part of a study that is *this* close to proving the genetic link to BPD. It’s a remarkable study and after being a part of it and seeing the results, not only mine but of other anonymous participants in the study, I am quite convinced that there is in fact a genetic link to BPD. I was shown random anonymous results laid atop my results. Those with BPD all fell within the same marks along the graphs. The fact that no matter how much therapy these people had did nothing to change these particular markers in those with diagnosed BPD is a clear sign (to me and the people conducting the study) that the brain of a person with BPD is actually, and simply, formed differently than those without BPD. Just as those on the Autism Spectrum have diffrent  neurology than people who are neurotypical. 

How then was I so easily misdiagnosed with the conditions of Asperger’s you might be asking yourself. Well as mentioned, AS/ADHD and BPD/GAD are all very similar to one and other and often co-morbid to one and other as well. It was as easy to get diagnosed with AS as it is to get diagnosed with AS instead of BPD – and vice versa. It was also easy to convince myself that I had Asperger’s (like Bean). 

For instance, I am hyper organized and have high anxiety when things are out of place, I have trouble with changes in routine and am not terribly affectionate or even empathetic – all traits I thought were a sure sign that I too had AS. But, as you can see from the (outdated) diagram below – are just as easily BPD traits.

Both AS and BPD could be argued as conditions that both cause emotional instability, however people with Autism are only ‘out of control’ of their emotional reactions when their environment proves difficult – as in disorder, private items touched, lack of personal space, overwhelming noise/actions…
People with BPD have intense reactions to what other people may consider trivial because the reaction is stemming from inner (and constant) mistrust, anxiety, fear and anger that runs much deeper than whatever may have just happened in that moment to cause them to explode. These fears and anxiety are constant – running through my brain every second of every day. They quickly turn to anger to protect myself from any vulnerabilty. 

http://www.bpddemystified.com/home/about-this-website/

These thoughts can quickly bring me to a feeling of being overwhelmed and suffocating. I begin to unravel fast, as anxiety takes hold so too the anger comes up like a shield, protecting me. Anger is easier for me than saying “I’m hurt, I feel overwhelmed, forgotten, burnt out, please help”. 

I’m always living on the edge between love and hate for myself and for others.

 

Any little thing can trigger someone who already has their gun cocked and ready to go. 

I have been in the DBT (Dialectical Behaviour Therapy) program for 6 months now. Once a week I attend group session for two hours and have a one hour session with my individual therapist. In DBT you are taught skills to manage when you are in “emotion mind” (a place that does not include logical thinking…as you can imagine). You learn to cope better, to apply skills to your life that will (hopefully) keep your vulnerabilty factor from overflowing, and even better – at a low. Luckily for me, with my drive to offer my children and my husband a more fulfilling life, a more loving me, I’m happy to say it is working. 
 
And I as I scratch at the un erasable self inflicted burn scars on my arms that itch whenever I’m anxious, whenever I’m tense, a real hope for the future, a healthy and happy future, is born within me. 
 
For the first time I can see myself as someone a little less unravelled.
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Filed under ADHD, Asperger's, Borderline Personality Disorder, diagnosed, General Anxiety Disorder, Mental illness, Uncategorized

That Endoscopy Thing We Did.

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.

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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.

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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.

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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.

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Filed under Asperger's, celiac, diabetes, diabetes and illness, diagnosed, Uncategorized

Bear Turns 6 and the curse of Hypoglycaemia Unawareness

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.

IIIIIIINNNNNN

and

OOOUUUTTT

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.

   
 I am so glad to have him as part of my life. I am blessed.

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World Autism Day

A day not unlike yesterday really.

But with the growing number of cases of ASD (even if just in my own friend circle alone) and the equally large number of “cures” and theories about diet, vaccinations and environment – and of course the accusations by others of BS diagnoses (and very likely the large number of BS diagnoses) – well I think this day is well worth mentioning.

Bean is a girl Aspie. In her case (from the view of general society) she has the upper hand of seeming “not autistic”. To the world – those who do not understand ASD – she very often and most probably appears quirky or disengaged, at the most, but not much more than that. 

Every day I see that she learns through her echolalia and mimicry how to be more like a “typical kid”, a “typical girl”. Her fashion choices have changed, not to the standards of her peers necessarily, but certainly it has evolved from only fuzzy pants and leggings to mostly fuzzy pants and leggings and even sometimes – jeans! – seriously. And, it’s true, she has adapted, and continues to do so. She is playing around with sarcasm and fibs. She is working on the right time to roll her eyes in annoyance at her brothers. Partially it’s really cool to watch her observe, take in and learn about her surroundings. Partially I miss the little girl who didn’t have any interest in doing any of that.

Of course I understand why, as a human, she must adapt to her best capability. We all must at some point, in some way or another. And I understand that she may not even be consciously choosing to adapt, it may truly be an organic change. One brought on simply by her subconscious understanding that in order to get further in life, one must fit in. My hope is that she doesn’t change too much. That she stays as quirky and as awesomely neat as she is for as long as possible while still finding a way to be happy within this world lead by “general society”.

In a world where World Autism Day is still something people look at as a day to acknowledge and be aware of the pain and work that comes with autism (Autism Speaks…ahem) instead of just a day to remember that differences are important and that autism is a way of being that the world should work better to understand not to condem. A day to think of the famous people with Autism that changed the World in their own ways and a day to think to the people on the spectrum who have never and may never do anything that would be considered spectacular – but that are no less important or awesome. And certainly a day to learn from our children, partners, parents, friends and neighbours with ASD that Autism is interesting and gives light to new ways of thinking and seeing the world. That taking the stigma out of ASD is creating a place where autism is just another way to open a door to acceptance.

So, this World Autism Day I remind myself that we should not be normalizing ASD for society, we should be normalizing ASD within society.

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Back On The Horse

Where to begin writing for this blog again? So much has happened.

From new jobs to being let go, to diabetes roller coasters to diabetes successes. From old schools to new schools and old (beloved) houses to new (not so beloved) houses and just about everything in between…

Though I promise to share it all, I’ll start by divulging about me. Me personally. Because, actually, I think it’s about time I do that again.

I have begun a treatment plan for my BPD. A year of intensive treatment.

It came at almost the exact right time. “Almost exactly” because it came right after I had a nervous breakdown.

Yup.

You read that right. I’ve mentioned it once or twice before I believe.

I had a fucking nervous breakdown. I won’t go into all the nitty gritty details – one never knows who reads these things – but I will say that I was past the edge. Not standing precariously by it.

It all just got to me and I finally buckled under the pressure. My mental illness literally went mental. I’m on the mend now, pills and therapy are my go to for the moment. And I won’t lie to you when I say that as happy I am to be on the mend, I feel shame that I even need it. It’s just that way I guess. Maybe especially because I am a parent and parents are not supposed to be this fragile.

My life now consists of going to therapy twice a week and taking anti-anxiety pills daily. If I start to act out aggressively in any way I usually get asked by any one of my lovely housemates if I have taken my pills today. That f’ing sucks.

But, in their defence, I do need my pills to keep my emotions stable. I really really do.

The great thing about this therapy is that it actually has a real hope of helping me. Giving me control over the stability of my emotions and helping me to understand myself better.

In a year, if successful, I should be as close to “cured” as they get (understanding of course that one is never actually cured but one can manage it without episodes for the rest of their lives if helped properly).

Man would that be nice. Especially as I have read the comment threads of children of mother’s with BPD who are now adults. Most of them have dis honed their mother’s.

My God. I can’t ever let that be my story.

So, for my children, for my hub, and certainly for me…

I go forth into this new world of therapy and self help. It ain’t easy. Actually – it’s really fucking hard.

Wish me luck.

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Why he wears pink

My little girl can walk into a toy store and be angry that there are “girl toys” and “boy toys”. She can argue the nonsense of girl sections and boy sections, and she will be looked at as a strong, independent, individual. Because she can play with anything and still be cool. Maybe she can even be “cooler” if she doesn’t conform to liking pink and baby dolls and barbies.

But if a little boy rides a pink bike to school, never mind that it is his fastest bike, or that he can do tricks on it. Never mind that his dad wears a pink tie sometimes or that his mother says “colours are not gender specific, people can like what they like”…his friends will make fun of him. They will ask him if he is a girl? They will say in teasing tones “do you play with baby dolls too?”

And maybe he does play with baby dolls too! But now, when he comes home and his mother is doing a sweep of what toys stay and what toys go, the beloved baby doll that he nursed at the same time as when his mom nursed his baby brother will be tossed, hesitantly, into the pile of “to go” toys.

He’ll start to test out these theories that boys don’t do “girl things” or like “girl toys”. And no matter what his mom and dad tell him, he will feel shame when he likes something he shouldn’t like. He will stop riding his bike, because it is pink.

Maybe, one day, when he’s older, he’ll realize that it is silly that he thought that way. That liking anything that might be considered a “girl item” would then make him lesser, weaker, “girly”. And when he is strong enough to be an individual and to remember his parents words “people like what they like, there are no girl things and boy things – there are just things” maybe he will start wearing pink again.

But until then it will be hard to convince this little boy that there is no shame in pink, or baby dolls, or even – dare I say it – being “like a girl”.

Enter Tig. This little dude wears pink all the time. In fact Tig LOVES pink. I mean he LOVES pink.

At the playground when he shoves himself into a group of little boys to see what they are doing and they twist around to wack him away, they always pause. Not sure if he is a girl because of his pink attire…and whether they can hit him or not.

And so, before he goes to Kindergarden and the awful shaming begins (and he starts to question his favourite colour) I am going to make sure that he gets to wear as much of his favourite colour as possible whenever he wants. When he gets dressed in the morning I let him pick his clothes, and by God, he would be dressed head to toe in pink all the time if I had enough pink clothes for him to do so. So before he goes to school and he starts to question his love of pink by the teasing of other little boys (and even the little girls and staff) who have also fallen victim to this hateful mind set of “girl things” – either by the influence of closed minded adults in their lives or simply by being aware and present in a society that separates boys and girls by colours and toys and sections – I am going to give him as much pink as I can.

Not just because I want him to be proud and happy in his clothing, and with his toys, but because his older brother is already in Kindergarden and it was his pink bike that he decided not to ride anymore, and his beloved baby doll that he gave away “because dolls are for girls mumma”. I want him to see his little brother being himself, a little boy who loves trucks and trains and pink.

And I also want him to understand that being like a girl isn’t an insult. That women are not weaker or less than.

But most of all I want him to know that there is no shame in liking things that typically girls are known to like, or any shame in wanting to be like a girl or feeling like a girl. There is no shame in being gay – that these words should not be used as insults! Girl, Girlie, Gay…And if he does than we need to examine what he thinks it means to be a girl and what it means to be gay.

If I can give my sons a voice that says “so what if I’m like a girl!?” Or better yet, if I can give them the strength to shoot back with “what’s wrong with being like a girl? Are girls bad? Is your mother bad? Weak? Less than?”

Then I will have done my job.

 Tig in a very awesome outfit. Boy knows how to dress.

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I’m Jewish, sorta.

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A friend of mine just wrote a great post about Interfaith families, well *her* interfaith family that is (check it out here), and all I could think was – yes! This. This is my family! (At least around the holidays.)

You see, we celebrate Hanukkah and Christmas in our house. And it’s fun, albeit busy and seemingly a never ending, yes – continuous – amount of holiday celebrating and organizing throughout the late part of November and all of December. But it is fun, and special to dedicate this time to being with our family. And I appreciate that my children are learning a bit about their Jewish heritage. A bit. Because as the Jewish parent, the mom (so yes, my kids are technically Jewish by birthright) I know very little about Judaism. In fact I know very little about any and all religions.

I am an atheist, and was raised that way.
Or maybe I’m agnostic, because though I am sometimes spiritually inclined, I do not (in any way) believe there is a God or higher power. Though at times I wish I did, because I am terrified of death, but anyway….

Because of my upbringing, I grew up celebrating Christmas in the most atheist/agnostic way.

It was: All. About. The. Presents.
Well that and tense family dinners complete with massive amounts of artery stopping, scrumptious, feasts.

Then, while I was still a young mom with only one child (so long ago) I was stopped by a Rabbi on Queen street while I was out on a date. The Rabbi asked if I was Jewish and I said, “no – not really” which created some curiosity and questions ensued. I explained that my mother’s mother was a Jew, but that she coverted to christianity after meeting my grandfather because his family (not him) was extremely predjudice against Jews (that and in addition to surviving the Holocaust as a child in a concentration camp was just too much for her to take at that point in her life). Of course, converting to Christianity did nothing to change their opinions of her…she was, after all, still a Jew.

But the Rabbi said to me “Well, my dear, you ARE Jewish!” and he explained that my Nana converting was not going to change that. He then handed me a small metal minora and some shamesh candels and sent me on my way to be, well, Jewish. That menorah sat in a box for many years in my basement, mixed in with our Christmas tree decorations and Christmas wrapping paper. I didn’t know anything about Hanukah, nor did I want to then. I was happy being an Atheist, proud even, and it felt (to me at the time) that celebrating Hanukkah was wrong. How could we do eight nights of presents without believing in Jewish religion (yes. I thought Hanukkah was about candles and eight nights of presents). How could we light the menorah when I didn’t even know which day Hanukkah started on! (This was before Google folks). So there it sat, at the bottom of our box marked “Christmas stuff” till one day Pups declared that she wanted to, and we should, celebrate Hanukkah. She had learned about the holiday at school and – through the incredible art of listening when we weren’t speaking directly to her – she had knowledge that she was, in fact, Jewish by birthright.

So, in the way that we celebrated Christmas, we did it – sans religious meaning and with no real clue of what we were doing, or why, we lit the menorah and gave gifts for eight days. Pups was loving it. First eight gifts and then more on Christmas Day. She had this holiday thing in the bag.

As the years passed, and we celebrated Christmaskah (or Hannumas) in our own way. We lit the candles, but there was no traditional Hanukkah food included, nor any prayers sung. And we broke our wallets giving eight gifts of Hanukkah and then doing Christmas shopping. Slowly I started to realize that perhaps I was doing this Hanukkah thing wrong. As if I was jumping in on something that I wasn’t supposed to be involved in. Like a man at a table of gay women claiming he too was a lesbian because he was attracted to females. There was common ground to be sure, but a man is not a lesbian. He just isn’t.

Side note: Yes, I realize that being an Atheist did not stop me from celebrating Christmas and that Christmas itself is *actually* a religious holiday, and I certainly didn’t feel guilty about that. *cough*. But Christmas wasn’t a religious holiday for me. For me it was a time to come together with family. To be especially generous and to believe in magic. It was tradition and spirituality mixed into one without the added God factor. And I admit, I love it.

But then something started happening. Without searching it out, information about this Jewish celebration started being given to me, in one way or another. At first I was unknowingly learning about the game of “dreidel” by overhearing a couple of co-workers chatting about it, and then I was told by a Jewish friend of mine that you don’t actually have to give any gifts at all during Hanukkah. That sometimes she did, and sometimes she didn’t. Seriously, she just sometimes didn’t! in fact she explained that Hanukkah (as opposed to Christmas in my atheist – but still lover of gift giving – eyes) was not about gifts at all!

Um…What the!?

“PUUUUUUPS!!”

Then we were lucky enough to be invited to share in our friends Hanukkah diner, and that changed everything. As her child sang the prayers before the candles were lit, and we ate an incredible amount of delicious latkes, I was struck with a feeling of something more. A realization that I could follow our own path within Judaism. That it wasn’t all about religion, it was also about culture, and tradition and community. My Aspie brain had always made it either black or white. I felt that without actually being Jewish in every way, everyday, we were not supposed to partake or to claim that we were Jewish. But something changed that night. I was struck with a sense of pride at my history and my culture. I decided that if we were going to celebrate Hanukkah, even as atheist or agnostic or whatever, we were going to do it right. Or at least as right as I could muster. So now, when we celebrate Hanukkah, we will also make the delicious food that comes with it. We read the stories, play dreidel with Gelt and nuts and we sing the prayers. And we don’t do it because we believe in God, or because we condone war and violence (The Maccabees against Antiochus), or because we believe in miracles because – the truth is, we don’t – we do it because we love coming together this way. Learning about our culture and our history. Celebrating our ancestors their dedication to the culture. Remembering that we come from a rich history full of trials and tribulations, but also of deep cultural traditions born from a community that stuck together and stood up for themselves.

Do we follow every single Jewish tradition? No. Nor do we go to church on Sundays or say thanks before every meal (though that one ain’t half bad and worth considering). But, every year we turn on the computer where we have bookmarked a page that has the prayers written out and includes a recording of a Jewish man who sings the prayers very slowly for the newcomers, the forgetful people, or any interested in these traditions (us). And in our way we celebrate the miracle of the oil that burned for eight days in the rededicated temple after the battle of the Maccabees and Antiochus.

Perhaps one day we will include more Jewish traditions into our household. We have started to read the stories from Jewish folklore and the Torah which has inspired in Bean a deep interest in Judaism. Perhaps she will be Rabbi when she grows up. Until then we attempt to work towards a simple goal: eventually knowing the prayers by heart and not having to listen to the slow monotonous voice of the Jewish man in our computer that leads us through the prayers…

Happy Hanukkah!

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