All posts tagged illness

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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by elishevasokolic on June 17, 2013  •  Permalink
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Posted by elishevasokolic on June 17, 2013

https://elishevasokolic.wordpress.com/2013/06/17/a-million-cupcakes/

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. 

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by elishevasokolic on May 21, 2013  •  Permalink
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Posted by elishevasokolic on May 21, 2013

https://elishevasokolic.wordpress.com/2013/05/21/a-letter-to-the-experts/

A break, in blogging at least.

I’m back, after over a week of lying pathetically in bed (when possible) and joining my 16 month old in whining and crying with the worst virus I’ve ever known. And technically, seeing as this is by double the longest I havent blogged in, I should have plenty to say. I should be bombarding you with witty anecdotes about my family and relationships, choosing only the best and funniest bits of the past 10 days, making you leap to press that alluring follow button. But truthfully, I have been feeling better since Friday, but have been suffering from a bit of writers block.

What being ill for a whole week has shown me, is that it is so easy to start doing nothing. It is highly addictive to just stop. When we are healthy, we never stop. As mums, we are always busy, always tired, always doing something. Stopping is a luxury we simply can rarely afford. Not that we dont get the odd cup of tea, or hour in front of the TV, or even afternoon off once or twice a decade, but even during the rare body breaks, our minds are still working overtime.

What’s for dinner? Is the washing dry? Was that the baby? Did x bill get paid? Even when we arent physically doing the chores themselves, they murmur incessantly in our heads until we give up on any notion of ‘Me-time’, and settle for a mere shadow of the ideal.

But then we get ill. And suddenly the only space in our heads is “Pass the Nurofen..Plus.” And someone else will have to pick up the baby, because we cant. And supper will have to get sorted, because the idea of food is making my stomach hurt even more. And washing? Cleaning? Bills? The office? They will have to wait, or disappear, or something, I dont really care.

How enlightening. The idea that if we dont do everything, things will still get done. Yes, one week later and I have a laundry pile which resembles a ski slope, and the carpet has disappeared under a sheet of cheerios, but look- we are all still here, fed, clothed, thank God, healthy, and starting a new week. The world didnt end because I disappeared for 6 days.

So why does it take being deathly ill for me to take some ‘me-time’? And now that I’ve discovered it, why is it so hard to start again? Jobs which would have disappeared without a touch of complaint now seem like huge tasks, and just browsing my work emails is tiring me out. I feel like I’m 15 again, struggling to get out of bed for school after a summer of 11am lie-ins.

I know the ideal. To be able to take some of this newfound freedom, and the knowledge that the world doesnt fall apart if I give myself a break, and put it into my busy hectic life. To work hard professionally and as a wife/mother, and also give myself some time for me, and not just when I have a 103 degree fever. But it’s definitely easier said than done.

Maybe thats why we all work so hard. Because the shiny prospect of not doing anything is too tempting to even entertain for a half hour of alone time. Perhaps the world is full of women, who if given half a chance, would jump back into pyjamas, turn on Desperate Housewives, say screw it to the housework and office jobs alike, and let the men, business and babies fend for themselves.

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by elishevasokolic on February 13, 2012  •  Permalink
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Posted by elishevasokolic on February 13, 2012

https://elishevasokolic.wordpress.com/2012/02/13/a-break-in-blogging-at-least/

On Dealing with Tragedy

The first time I had to deal with death I was 8 years old. I don’t remember a huge amount about it, but a favourite Aunt of mine died suddenly and tragically young with no warning. I remember being truly devastated, in the way that only a child can be, and I believe it has shaped how I feel about tragedy and death in general.

When I was 12, both my grandmothers died within a month of each other. The first, I found so painful that for years I couldnt think about it without crying, and the other, passed me by in the shadow of the former. From that point, without any conscious choice, I began to believe that anyone more than one generation above, was not safe. Even though 70’s and 80’s is young by some peoples standards, to me, if someone had reached their 70’s, it really was only a matter of time.

What a horrible way to look at life and death. And unfortunately, once again, I have to look at how mortality was viewed in my house growing up. I remember a conversation I had with my own mum when I was about 13.
“What will I do when [insert favoured family member of the older generation] dies?”
“… I know.”

As a child, wondering about death, having lost two grandmas in such a short space of time, I was thinking about older people and death and I suppose needed some reassurance that old isnt the same as ill, and that I didnt have to worry. Instead, the two word reply I got, (followed by the instructions that I had to be brave) not only confirmed that they were in fact, old enough to worry about (At the time this person was about 66) but also meant that pretty much the last decade or so since then has been spent waiting for them to get ill and die. If R asked me the same question, I have no doubt that my response would be along the lines of “Well that’s not something to worry about! X is perfectly healthy and not even very old yet!”

And so I spent my teenage years not really being affected by the loss of Great Aunts and Uncles, however much time I had spent with them, or by hearing of people young and old who had been lost. For me, it became a harsh reality, that still stung once in a while, but was just part of life.

And then I lost my Dad, the week I turned 19, and suddenly everyone elses tragedy was mocking me. I saw adults crying at their parents funerals, and became angry. How ungrateful they were to all the extra time they were given with their parent? When my own Grandfathers died soon after, I couldnt relate to my mums grief, because hers seemed fair, to lose a man in his 90’s, and mine so unjust in comparison. I was and still am shocked at people my own age with all 4 grandparents, much the same way as I would gawk at a two-headed creature on display at a fairground.

Before this, I had always found it difficult to relate to death around me. But at age 19, I became cold to it. Don’t get me wrong, I feel grief and sadness, for me and for others, and it’s horrible to watch anyone suffer, but I also know that my mind quickly switches to ruthless thoughts and drifts to other topics, and the tears dry up far quicker than they once did.

Maybe that’s just adulthood, and as we grow up, we find it so much easier to face death and illness and not fall apart. Or maybe losing a parent, at whatever age, gives us such a real glimpse into grief and mourning, that we are just better at handling it from that point on.

It’s hard to know what I would want for my own son. He already has just 3 out of 4 grandparents, and I feel a loss for him in that he will never know his Zeida. While obviously as a parent I pray that he is protected from grief for as long as possible, I also want to be able to meet that grief together with him head on when it comes, giving him a realistic yet optimistic view of life and death, and helping him through it, in a way that I never really feel I was.

The main thing is, that I don’t want him to have the same hang ups and mixed up feelings on the topic as I do. After all, here we are, he’s 1 year old, and all his grandparents are in their 60’s. And yet I’m kind of preparing myself for it already. What a huge effect the way we grow up has on every aspect of our lives. And how to stop history repeating itself?

Yet another work in progess.

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by elishevasokolic on January 26, 2012  •  Permalink
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Posted by elishevasokolic on January 26, 2012

https://elishevasokolic.wordpress.com/2012/01/26/on-dealing-with-tragedy/

Baby-Flu (grow up and go to bed)

Babies and Adults are different. I know, it was a shock for me too. After all, they are in essence just tiny little grown ups, who can’t do very much by themselves. They look just the same as us, only minature. They eat, they sleep, they get upset and happy. In fact, they are in many ways better than adults, because they are a simpler version. When they’re upset, they cry. When they’re happy, they laugh. Adults on the other hand have more complex ways to show their emotions. Sometimes, when we’re upset, we smile anyway. Sometimes when we’re happy or pleased, we pretend not to be. Weird, a baby would say.

Anyway, the difference that’s on my mind today, is Illness. I don’t mean real illness, or hospitalisation or other serious maladies. Nothing quite that dramatic. I mean, the sniffles. A slight fever. General feeling of uchy and achy. We all get it from time to time. There is no need to call a doctor, no infection of any kind, no rash to proudly display as a war wound, probably not even a reason to call in sick for the day. But it’s not fun. Under the weather some would call it.

Let’s say an adult has the rare opportunity (no job, no kids.. [I hate you]) to not just power through and get on with their day. Let’s call it a Sunday for arguments sake. Here is what I would do. Whinge a little, go back to bed, cover myself in snuggly blankets, make myself (or get someone to make me) something delicious to eat or drink, and sleep off the fever, dosed with some Nurofen related product. Mm.. I want to do that now and I don’t even feel ill.

WHY DOES MY SON DO THE OPPOSITE?

The only thing he has down perfectly is the whinging part. He has not stopped moaning since 7am. He doesnt even have the decency to make it a proper cry. At least then I would take him to the Doctor. But I know that he’s fine. He has a slight temperature, probably teething, feeling a bit bleuch. If he were a girl baby, I’d make him suck it up and get on with the day as planned, but as a boy, I presume he has the ‘man-flu’ gene, and so I’m taking it easy on him. No outings, no making him go out in the cold, just play and inside games all day.

But my son does not understand this. He wants me to hold him. All day. This was something I found hard when he was a newborn, all 7”13 of him. But now? At knocking on 2 stone? No thanks R.

I would be tucked up in bed by now, fast asleep. But he has decided that sleep is no use. Not only did he wake up earlier than usual, but he won’t nap. To add insult to injury, he wont stop yawning and rubbing his eyes. If you’re tired… sleep! But even walking past his cot is evoking the kind of screaming I would reserve for spotting a known murderer running towards me with a weapon.

I would want to be left alone. Unfortunately, he wants all of my attention. All of it. I cannot get a drink, I cannot sit on the sofa, I cannot send a work email. No no. That would impose on his whining schedule.

At what age to kids become adults in this respect? When will he decide that lying down and having a rest, or sitting quietly by himself with a book, are much better tonics than temper tantrums, round the clock entertainment, and refusing to eat and sleep? 5? 15? 50? (Shock realisation.. could it just be that he is male?)

All help gratefully recieved. If any loyal readers happen to be in the Farringdon area, pop into my husbands work and send him home?

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by elishevasokolic on December 6, 2011  •  Permalink
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Posted by elishevasokolic on December 6, 2011

https://elishevasokolic.wordpress.com/2011/12/06/baby-flu-grow-up-and-go-to-bed/