A Million Cupcakes

Just a quick one to share a cause I think needs some more publicity. Two amazing kids that I have taught in the past have created http://www.millioncupcakes.org/ in memory of their grandfather, to try and raise money and awareness for Motor Neurone Disease, (MND) which they can explain on the website far better than I could. (Well done to the parents for such obviously brilliant discussion on a complex illness by the way!)

While the disease is terrible, and the idea, (of selling a million virtual cupcakes) is adorable, something much bigger touched my heart, especially while dealing with my own grief.

I’m sure we all remember the first time we lost someone important to us. I was Oliver’s age (7) and really that first grief was really more a first glance at the idea that people do not live forever, that those we love can be lost, and that there’s nothing we can do about it.

The next time I lost someone I cared about, I was around Ella’s age, (11) and this time I remember missing them so acutely that it hurt all the time. I wrote letters, I kept busy, but again, there is a helplessness about death that makes it seem hopeless, especially for a child.

Even at age 19, when I experienced a real loss for the first time, that sense of confusion and despair was no less prevalent. And it’s still there.

And I think that’s why I feel so attached to this particular cause. Yes, I know the children personally, and if it helps-they are both really lovely kids. But more than that, they are taking their grief for their grandfather, and removing the hopelessness from it. They are creating something wonderful and meaningful out of their loss, and if more people can share this cause, as well as this idea, they could actually change the world before they hit their teens, at an age where when faced with loss, most of us are just battling with getting up for school in the morning.

I’m impressed, and I think if you take the time to visit the website and check out the video, you will be too.

So what are you waiting for? Click the link, learn something, and send a delicious (calorie-free!) cupcake today, for as little as £2. And share share share!

http://www.millioncupcakes.org/

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On Loneliness and Grieving.

Seven summers ago I sat shiva. It changes you. People say I have a strange relationship with death; they’re usually people who thankfully haven’t had any relationship with it at all. But I don’t think that comes from losing a parent. I think I was always aware of the idea that people might not be there the next day. That trust was a hard gift to give when you considered the likelihood of being left alone at any minute without warning.

So when, indeed without warning, a matter of hours after happily hanging up the phone on one of several daily calls to my father, I was summoned almost wordlessly to his already dead body, no chance to say goodbye, I can’t remember feeling shocked. The often quoted feeling of  ‘this cant be happening to me’  never even crossed my mind. It almost made sense, somehow.

Back then, for whatever reason, I chose to focus on the positive in the situation for the most part. I felt grief, I tore my clothes, I cried what must have been buckets of real tears, don’t get me wrong. It was probably the saddest and most difficult period in my life. But I’m not sure I ever complained. I’m not sure I ever shouted and raved about how unfair it was. Anger didn’t come into the equation for me.

Not then anyway.

I’m angry today. With a lot of people. I’m angry that you didn’t phone me, even though I told you in advance what day it is. I’m angry that I had to tell you what day it is in the first place, and that I have to explain (even though you’ll never understand) why it’s important to me. I’m angry that you are allowed the immense privilege of not understanding, and I have to go through this, distancing me from everyone un-scarred and whole in my life.

I’m angry with you too. I can’t understand how you can let this slip your mind. How you can marry someone and have a child together, and never think she might end up in this position. And I’m so frustrated that now I’m here dealing with it, you can’t remember something as important as today and phone me up and see how I am. How can you tell me that this is all harder for you than me, if this day hasn’t even crossed your mind, in a fraction of the way it’s taken camp in my own these last few weeks?

I’m even annoyed at my family. For reaching milestones that he never will, for taking for granted relationships he will never experience, simply for not being his sons, his wife, his nephews, nieces, parents, siblings. Mostly for leaving me the only one who feels this, and giving me no outlet to satisfactorily share it, and in most cases for hardly trying. I can’t pick up the phone and ask for a memory that’s slipped just out of reach, because no one else shares it, or worse still, because the risk of blank faces is just too frighteningly painful. I just have to wait while it fades further out of mind, losing the very puzzle pieces that made up a man’s life. I can’t pop round anywhere to reminisce, because no one shared our relationship.
Ironically, this was the very fact I so eagerly clung to while I sat shiva at 19.

It was only me. I was so proud to alone walk my Dad out of this world with dignity, to do the customs and laws that a family member does according to Jewish law, all on my own. I felt I was really making a difference, really proving that our relationship had always been him and me, and that was no different in his death, no intrusions. It was almost sacred- just the two of us.

But now it’s the one of me.

So I’m angry with You most of all. Not for taking him away from me, that’s too easy, although as I grow up I realise just how cut short his years were, taken at 63. But it’s the way of the world after all, a child losing a parent. But mainly for the way You left me here.
My mother wasn’t his wife, my brothers weren’t his sons. My husband and my son never knew him, I have no uncles or aunts, no grandparents. To make things slightly crueller, there could have been a lifetime companion to share this grief with, miscarried at seven weeks. At one year old, I was destined to be entirely alone in this, and I didn’t even know it.

So I sit here, writing mainly to myself, the only person who has been feeling this day approach with a heavy heart, and the only one who woke up this morning remembering, and wondering what might have been.

Today would have been my Daddy’s 70th birthday. Not old, not really, but seven long years gone. My life is truly so changed since he knew it, that I wonder if he would recognise me at all. And yet the people in my life now, have moved on from even the memory of ‘him and me’ to the point where they can’t remember the importance of today even when I’ve told them directly, let alone out of care of me. It’s not their fault, why should they? It’s only me who is stuck in both times. Missing and living simultaneously. Both getting on with life, and coping with death.

Still, I cant help but wonder whether the burden would be lighter to bear if there were anyone else to share the load.

A Letter to the Experts.

Dear multitude of doctors / specialists / experts in your field that we have seen in the last 36 months,

Hello. I’m R’s mum. You might not remember who I am, although I generally see you biannually. That’s fine, you have plenty of patients, I’m sure only a handful stand out, and even less so by name. As a kid, I always took it for granted that my optometrists and the like knew my name and age, not supposing that the file on their laps acted as a subtle cheat sheet. It’s one of your many mythic properties, to remember and care for everyone individually.

But now I’m grown up, and my son is the patient. And while I don’t expect you to remember that he doesn’t like to speak in new places so there’s very little point you asking him if he likes cars, or that we don’t actually use that particular obvious nickname so he wont answer to it, I do expect a few things.

I expect you to remember what condition he has, and what you told us last time. It’s easy really, it’s all written on that very same cheat sheet. After all, we’ve been sitting in your waiting room for nearly two hours, another two minutes wouldn’t have hurt while you scanned your own spidery writing from six months ago. In contrast, I don’t need to be told as if for the first time that my son has Nystagmus, as that’s as obvious to me as you telling me his gender by now. I know his condition, I live it every day. That patronising explanation of what the condition means and what areas it may affect is a bit unnecessary, as after all, your notes would tell you that I have it too.

If I’m meeting you for the first time, there are a few ways to ensure we can be friends for life. Because I’m already your biggest fan, you’re helping my son. Anything you can give us in the way of advice, support and help is worthy of the boatloads of gratitude I continually give to the amazing people who work in our healthcare system. So it takes something out of the ordinary to shift my adoration in a first meeting. I’ll warn you from the outset so you can keep my boundless respect. Please don’t ask me “what’s wrong with” my son. Nothing is wrong with him. He has a condition. If he wasn’t too young to understand that comment, I would be outside drafting my letter of complaint right now.
Please don’t address my scepticism with I’ve been doing this for years… because all a mother hears is the silent …but not with my child, which is so easy to end the sentence with. Your years and your credentials mean nothing to me, if you cant try and get to know my kid as an individual.

Please don’t laugh and say “That’s the first time I’ve heard that one!” when I tentatively mention that another doctor has said something  that differs from your point of view. If I can’t trust them, then ipso facto I can’t trust you. And if I can’t trust any of you, and I don’t know who to believe, then you’re saddling me with decisions and choices that I have no way of making on my own, and taking away the pure relief of handing over at least the medical side to what should be wiser heads than my own.

Try not to judge me instantly. I’m a mother, worried and proud, but that doesn’t make me hysterical and biased. I work, and enjoy it, but that doesn’t mean I neglect my son or don’t want to put the effort in. I’m a person, impatient for progress, but that doesn’t mean I’m looking for a cheat or a quick fix. And if I am guilty of any of the above? That’s okay too, because you don’t know my whole story.

You don’t look at my son with my eyes. You can’t see him, tiny and blind, with parents hopefully cooing at his sightless face, hoping for a response that he even knew we were there. You didn’t sit at home with me, too scared to go on play-dates with other excited new mums in case they asked me why my five month old didn’t smile. You didn’t share my joy when the smiles came, the movement came, the speech and understanding came at long last.

So if I want more information than you feel like explaining to my layman’s ears? I want more time than the ten minutes you’re allowed to give me, or more estimations than you’re really supposed to divulge at this stage? Humour me. Answer me. Don’t try and distract me away from answers to legitimate questions which you’ll forget as soon you close his file. Because I’ll take them home with me to fill my evenings with, for six more months until I come back resolved to ask them all again. I’ll worry and stew over your poorly chosen words and ambiguous predictions for the year ahead, until my friends and family are bored of hearing the same confused summaries.

He’s just a file to you. I can’t make him be anything else, and I’m glad. I need you to make the cool headed decisions and uninvolved assessments that I can’t ever make, and wouldn’t want to. But I’m not a file. I’m a mother. And I’m still here when that file closes. 

Grow up, or don’t show up.

There are people in my life who exhibit unbelievably childish behaviour. One of those people is my two year old son. The other ones, are unfortunately significantly older. Here’s a list of what I feel is just unacceptable behaviour after the age of 6. All of which I’ve had the pleasure of experiencing this very week.

Hanging up the phone mid sentence.

Oh, I’m sorry. Do you not like what I’m saying? Have I upset you in some way? You have two options. One of them is to tell me what’s on your mind and let us have a conversation about it. The other is to say “To be honest I don’t think this is going anywhere constructive, can we pick this up again later?” On no planet is it normal to just hang up with no warning, especially when you preface it with “You’re being ridiculous.” The dial tone begs to differ on who the ridiculous one is.

Giving the silent treatment. 

We all need space from time to time, especially after a difference of opinion or an argument. You can even be forgiven for screening calls when you just aren’t ready to talk to someone yet. But please don’t show up at my house if you’re not going to answer a direct question. Similarly, the Muttering Treatment may be even ruder. Especially when I say “Sorry, what was that?” and you revert back to silence. Either the argument is over, (in which case, get over it) or it isn’t (in which case-let’s talk about it).

Walking away mid sentence. 

I’m well versed in this one, as my toddler loves doing it. I’m trying to explain something, or ask him a question and suddenly, “Hey, where’d you go?” It can be quite endearing in a 2 year old. But I would imagine your concentration levels are greater than 4 seconds, so please give me the respect of letting me finish a sentence.

Overreactions, or tantrums in response to absolutely nothing.

We’ve all been there with our kids. a 45 minute screaming fit over the sausages touching the peas on the plate. Or a variety of toys thrown at our heads because they wanted their socks put on before trousers today. Really R? If this is how upset you get now, what will your response be when I’m forbidding you a party on a school night, or making you get a job to help afford a car? Anyway, again-understandable (but no less frustrating)  in a two year old or even a teenager, but please grow out of it by middle age. Thanks.

Calling names

The old adage ‘sticks and stones,’ has never rung particularly true to me. And most adults will agree that while cuts and bruises heal, there is really no way to take back abusive and angry words. Whatever you think of someone, especially if they are family, you might want to refrain from labelling them too harshly (to their face anyway-we all need to vent from time to time). You cant honestly believe you’re going to be angry forever, and however much I may laugh and smile with you when it’s all over, and even though forgive and forget has to be the name of the game in any even semi-functioning family, I can’t un-hear you calling me a selfish spoilt cow.

Genuinely, I’m not sure what to suggest in response to the treatment I’ve had this week. Immature behaviour deserves the same response I would give a child. I can’t exactly put you in the naughty corner for a time-out, and anyway I don’t have the rest of my life free to wait for you to say sorry. I could take access to your favourite things away, and not let you see us, in the same way I might take away R’s Winnie The Pooh at bedtime if he didn’t touch supper, but I’m really not interested in stooping to your own childish level of playing games. I’ve pretty much been trying positive reinforcement ever since our relationship started, and short of actually making you a star chart, I’m not sure I could make you feel a more wanted part of our life than we already do.

So grow up. Because you’re in a privileged position that one of us has decided to be an adult for the time being. But there’s nothing like immaturity to make everyone around you regress themselves. And if I decide to start walking away as well, you might not find it so easy to get me to come back.

Holocaust Memorial Day 2013.

We will never forget.

These words have been everywhere the last few days, commemorating Yom HaShoah, Holocaust Memorial Day.

Amongst the six million Jewish souls who were brutally extinguished by the Nazi’s, were 1.5 million Jewish children, only one of whom I know the name of.

Edith, my namesake, was just a young child when her life was taken away from her, along with her mother Sabina, (my grandmothers sister) and my great-grandparents Chaim and Malka. And of course, countless others.

Edith was my mothers first cousin, the only one she would ever have, and yet her death came before my mother was even born. The easy family rapport that spans oceans and forgives absences and long silences was therefore never my mothers to experience. The large family gatherings of shared memories and relatives and marking anniversaries and birthdays together was just a fantasy to stand on the outside of, looking in.

Edith would have one day had favourite foods, books and games. She would have had teen romance and best friend quarrels and anxieties. Perhaps at her batmitzvah, in the forties, my grandmother would have been holding my aunt in her arms just a baby herself, dancing with her sister, Edith’s mother, and sharing the closeness that she would in reality only see secondhand in her own girls. Maybe my own mother and her sister would have been bridesmaids at Edith’s wedding, all dressed up in meringue dresses with giant bows in the dated style of the sixties. Maybe they would have been too old to be flower girls, instead dressing in modern gowns that my granddad wouldn’t have approved of but never would have said for embarrassment and fear of female confrontation. The cousins would have danced together excitedly, maybe best friends or maybe not, but family nonetheless.

My brothers and my cousins were born in the seventies, and never had second or third cousins to play with or visit. I have spent Jewish festivals since i was 8 years old, and many a happy memory, with my second cousins on my fathers side of the family, and I assure you, the words may sound distant, ‘removed’ or ‘third’ but they couldn’t be more kin to me than my own siblings.

Our walls are covered with the ghosts of photos which could have been. The unborn children who should have played and fought together, the hastily snatched dinners of her generation all together when babysitters or favours could be taken advantage of. Me, a little girl in the late eighties, celebrating Edith’s 60th birthday, perhaps covered in cake and smiles I would never remember. The six of us, our mothers children, surrounded by more blurred faces, our second cousins, maybe Edith’s own nephews and nieces had they been allowed a chance at life. As the decades go on, more colourful digital snaps, less spontaneous because we can now try as many times as we need to get it right. Edith, standing with her arms around our mothers at our wedding, me dancing dutifully with her and her children; aching to finish so I can grab my own friends. A shiny image of her holding our own R, her great great nephew a few days after his birth. She would be in her eighties now, vibrant and strong, unscarred by tragedy.

Every memory I’ve listed had the potential to exist. They aren’t fantasy, they should have been our history. They were stolen from her, and stolen from us as well. We will never know the make up of our family had Hitler not decided to murder her innocent soul, before she even took her first steps or said her first words. She was one child, one person, one story. In our own family we have half a dozen more stolen lives, and in our community countless more. As a nation, six million stories and lifetimes were brutally snatched from those of us left behind. Never forget? The true tragedy is that we were never given the opportunity to remember the memories which were rightfully ours.

May God ensure that their perfect souls are resting in everlasting peace.