I have no time


Hi all,

I was just putting my baby to bed and began guiltily thinking of this blog, how I haven’t checked the email address associated with it in so long, and how little time I have.

This is what’s new with me.


I am busy. Really busy. I have been working longer and harder than I ever have done in my life. I got made redundant from that bank job I’ve been working all these years, which actually worked in my favour. I kind of saw it coming, and as soon as the funny business started and I began to suspect I was in line for the chop, I went into overdrive.

The story goes a bit like this. For a couple of years, I had half-heartedly dipped in and out of my writing, feeling disappointed at the rejections, feeling like it was never going to go anywhere, so I sort of gave up. How long could I keep chasing a dream that just wasn’t happening? As if to convince myself I went around telling everyone “I’ve decided to stop chasing the journalism thing. I have to be realistic. I have a family to raise.”

A while later, I was sat in Leto hospital, looking into the face of my second son, and I thought “What am I going to say to these kids? I wanted to be a journalist, but I didn’t make it? Chase your dreams, make them come true? How will I tell them that if I didn’t do it myself?” I resolved to give my writing one last chance, all or nothing.

That’s kind of why I haven’t had any time to blog. I set up a new, grown up blog under my real name, plus I joined the Twitter (do you know the Twitter?) and I worked, and I worked, and I worked. I sent emails endlessly, I made phone calls to US newspapers at 11 and 12 at night when my children were asleep, I wrote for nearly nothing late into the night, often not sleeping before 1 am. I pitched myself like the world would end tomorrow. I nearly ran myself into the ground, I got made redundant, but by the time that happened, my relentless efforts had started to yield some results.

Yes, I had a family to raise, and no I couldn’t really afford to be chasing a dream, which is why I had started saving in advance. But when life threw such a curveball at me as the one I had with my older son’s diagnosis, I thought “Fuck it! What else have I got to lose?” If my one last big effort didn’t work, I’d accept defeat, I had a small buffer in the bank, and I’d find some other way to make a living.

And I sort of made it. A few days ago, I emptied my bank of everything in it to go pay some bills. I was broke, but everything in that account had come from writing. I have two steady writing jobs, plus a ‘day job’ as a copywriter. And just this week, I did five live news reports for the BBC on the Norman Atlantic. Some of you might have even seen me.

I don’t know if this is long term. I hope it is. I’ll keep trying through exhaustion, through working around the waking hours of my children, and maybe I will well and truly get there.


I’ve been okay. This year in terms of my mental health has been hard. It’s been a bad year considering the bouts of depression, deep, dark depths where I nearly picked up the telephone and begged the authorities to come and get me, put me away, because I can’t bear any more. I came to the brink of a nervous breakdown several times. I often hated the strength of my mind in those moments. I wished it would just go ahead and snap already so I could get over with it, check out for a bit and come back to the world when the storm in my mind had blown over.

I write a diary for my children. It acts like a map of my mental health. The missing patches show when I’ve not been well. There are no entries in the 2014 diary from September onward, none. Not even one.

I spent swathes of the year in a bad state, trying to find my way out of the dark, being a terrible mother to my children, yelling and screaming at them. Finally I went back for more therapy to a different therapist, and it did help. I’ll keep going back from time to time to stay on track with my well being.

Now I am okay. I have even been happy for the last month or so. I plan on doing the work I need to keep that going.


Other stuff:

I have about 3 kgs to lose from the birth of son no. 2. I need a car. Mr Zeus got fired two days before New Year’s eve. It took him 1.5 years to find that job in the first place, which was a real bummer. My first son is doing okay, at some point in the future we have to start steroids for him. In the mean time, we’re enjoying normality. I was hugging him the other day when he stroked my arms and said “You need to take this off, it’s dirty.” He meant the hair on my arms. Great. Thanks for the support, son!

My second son, a little creature I only began to enjoy some time around September, is wonderful. He is hilarious. He loves to dance. And, funniest of all, he has blue eyes and blonde hair, unlike me and unlike Mr Zeus.


The view from here:

Like I said, since having two kids and working about 3 jobs, my time has shrivelled up like a grape in the August sun. Once, there was so much of it, my time was plump and juicy and abundant. Now, it’s barely there. I don’t have time for the gym, I don’t have time for bellydancing.


I considered closing this blog, but I think since I find it therapeutic, I think I’ll hold on to it. In the meantime, you can find me at my grown-up blog, and on Twitter, officially blowing my cover. If you want to ask me anything about things I’ve talked about on this blog, you can reach me on the email address connected to those accounts.


Thanks for still reading and visiting!


The way things are


Hello pumpkins, so where was I? Oh yes, telling  you all about last year.

So by March, things were pretty bad for me. I was so depressed that I struggled to get out of bed in the morning and had riotous morning sickness. I never had that with the first kid and would smuggly swan around, my book on tribal pregnancies in one hand, spouting gems like “Morning sickness is undocumented in tribal societies you know, so that means it’s psychosomatic. I don’t believe in it, and so I have none, you see?”

I would have gone back in time and smacked my own face in with a dry cracker as I sat hugging the bathroom sink and dry heaving. I couldn’t tell anyone about the pregnancy except the very nearest and dearest. This was because I had to get a CVS procedure done to make sure that I wasn’t a gonadal mosaic (google it, I can’t be bothered to explain). So I looked this CVS up online and everyone discovered it as uncomfortable but that’s it.

I went and got it done by the good people at Alexandra maternity hospital, Athens, and I was shitting myself I can tell you. I really did not want to get it done. Due to the state I had got myself in (I have, understandably I think, lost control of my emotions in recent years) I nearly died of horror when I was told I couldn’t have Mr Zeus in the room with me. Standard procedure. One unsuccessful try later, I was sent off to tank up on water which I did with shaking hands and floods of tears. To be fair, the lady who did the procedure could see how scared I was and she commented on my age, which made me low risk for needing a CVS. I told her about the Duchenne thing and she was really nice to me. She tried to show me my baby on the high-res monitor, but I didn’t want to look. I didn’t want to see the baby until I got my results.

Mercifully, lady Luck took a day off from being a total bitch to me, and my baby’s results were fine. To my intense surprise, the baby turned out to be male. I was absolutely convinced I was having a girl. With Mini me, we had opted not to learn the sex. No such luck going forward, we are obliged to learn the sex for each future pregnancy. To tell you the truth, I am kind of all surprised out anyway.

So then baby was born and, perhaps due to the intense stress I was under during pregnancy, he just cried for the first 3 months and I just cried with him. Seriously, you’d think it would be easier the second time round but no such luck. The birth was quite a funny story and yes, I am going to share it with you because all people ever share are their near-death horror birth stories, and I’ve luckily had two great births.

Two weeks before my due date, pickled and lumbering, I went for a midwife check up. No summer hols for us this year on account of bubs being due in mid September. I had been all up in everyone’s face in the beaches around Athens with my belly just hanging out to compensate. If you saw an extremely pregnant woman in a don’t-give-a-damn bikini and a toddler in tow, that was probably me. The midwife was joking and laughing about me going swimming until she examined me, upon which she told me to go home, put my feet up and do nothing to see if we could steal a few more days of pregnancy because one false move and that baby was practically going to fall out of me.

The delivery itself ended up being like something out of those cheesy American slapstick comedies, me waddling out of the front door after my waters broke at the end of August, not September, sipping on a can of coke and pissed off as hell at having to give birth that day, while my mother in law stood at her door crossing herself repeatedly and saying Panagia moy, The moy sose like I was going to war or something. Less than an hour later, with me shouting “WHERE THE FUCK IS MR ZEUS” because that baby wasn’t waiting for NO ONE, Hans was born. I’ll call him Hans here because against all the odds this kid has been born to me with blue eyes and blonde hair, so my mystery Swedish boyfriend is everyone’s joke now.

The delivery was really fast but then I had to stay in hospital for 5 days because of the ebola virus. Just kidding, Hans developed jaundice and everyone was like “You can remove this child at your own risk!” I was rooming with a girl and her sugar daddy who slept in the same room and snored all night. He also liked to watch TV till 2 am and eat crisps. You get the picture. I was ready to fucking punch him in the face by day two of this nonsense. The other girl in the room was a first timer too, so at visiting time, our room was like Grand Central Station.

By the fifth morning and having managed around 2 hours sleep in three days, not because of Hans, but because of the trelokomio that maternity hospitals are (imagine you’re in a room with two other people you don’t know and three noisy, incontinent room mates, and all night people coming into your room “Suppository? Your baby needs changing? We need to take his blood sugar. Here, breastfeed him and let me see if you’re doing it right”) I signed myself out.

So that’s what I’ve been doing. These days after going through everything that I have been through with my darling son’s diagnosis, I decided I am making a break for my freedom and have been working really hard trying to get my writing off the ground. I’ve had some success, I could do with more. So wish me luck. By the end of this year I hope to be living off my words. Life is good, I have two kids now and am working on getting myself back on track mentally. If my plans all work out I will be glad, because life is really too short to be in a job you don’t care about.

I’m still alive y’all


Every time I log into the email account connected to the blog and start dusting off the cobwebs, I find so many emails that I could have, should have replied to. My apologies for this. I had another baby, you see, so I am a bit swept off my feet.

So this is how it panned out for me in 2013. In January, I found out I was expecting, and I was all like

Within days, I received the worst annual review of my career (something about my lack of focus, blah blah blah, which might weirdly have something to do with, you know, how I’d just been told my child had a terminal condition) and within a month Mr Zeus got fired from his job with the reason being given as “Just Because” and I was all like

So things were very, very upsetting, stressful and shitty for months and months. They’ve not got spectacularly better since, but I am a bit pressed for time so I will very soon tell you all about my adventures in Crazy Hormonal Pregnancy With Ridiculous Amounts of Stress and A Very Bad Bout of Depression Land.

Love and  a  happy 2014!

ERT! I Just Died In Your Arms Tonight



So there we have it. On Tuesday evening, while we were harmlessly flicking channels and watching the idiot box, ERT became their own biggest news story and were shut down live on air. The reason? The government says they lack transparency and are far too wasteful an organization.

As opposed to the government itself, I suppose. A Greek government organisation that’s wasteful? Is this some kind of sick pre apocalyptic joke?

What’s not to love about this story? After 6 years of a crippling debt crisis, the Greek government magically decides that the only TV outlet not stuffed to the gills with 15 minute add breaks, split-screen screaming matches cunningly disguised as news reports and mindless viewing junk food is too wasteful to keep running and without any debate or negotiation, ERT is given the chop. As for other wasteful state bodies like all of the public sector, DEH or OTE, let’s not mention it and maybe it’ll go away.

Since then, there has been a blanket strike on Greek TV, meaning we’ve had to get our news from satellite channels.

Now, there are two things to remember when the shit hits the fan in Greece like this. Someone somewhere will always find a way to say it’s either got something to do with the foreigners or the Turks.

I was watching Euronews and I must applaud the old Greek papou who was quoted as saying “What are the Greeks on the islands going to have to watch now? Turkish television?”

Heaven forbid! I hate to tell you this, gramps, but with the sheer volume of Turkish soaps on Greek television, Greeks on the islands and the mainland are already doing that.

Then of course there’s our good old dash of hatred, Golden Dawn, who took time out of their busy schedule of immigrant-beating and found the perfect chance to play a game of The Good Greek Next Door by ranting and raving in parliament about how undemocratic the move was and that politicians should get a pay cut, blah blah blah. Don’t you have brainwashed old grannies to be escorting to ATMs or something? Stop pretending like you care!

As for what the government did, the journalist in me was horrified. Samaras was quick to point to the inflated pays and cronyism going on at the state channel, without pausing to remember that ERT has long been a job factory for chums of the government. Those who kissed the right backsides got the top jobs. I’ve heard stories of fantastical salaries of EUR 15,000 a month for some presenters. I have no way to verify if they’re true.

And so now we have no state TV and just got downgraded to emerging market status.  I love the smell of a meltdown in the morning.



I went through a truly Greek rite of passage a few weeks ago and crashed my car. As of late I am exploring some job options which takes me to Maroussi a few times a week before my ‘day job’ hours kick in. It’s a bit crappy that I have to go all that way as with my driving it takes me around 40 minutes each way, but beggars can’t be choosers in this economy. And anyway, I at last decided to leave my job and am doing something about that, but that’s a story for another post.

One particular day, I was driving back from Maroussi when I found myself in a tunnel on the highway. To cut a long story short, I got spooked by the actions of another driver and overcompensated on the wheel, causing me to run into the tunnel wall and scrape alongside it, screaming and trying to work out what happened at the same time. When I regained control of the car, I pulled over the first chance I got. The nice thing was that several other cars pulled up to check if I was okay. From behind, I must have looked like I was on a suicide mission, or had fainted at the wheel or something.

Luckily I didn’t cause any damage to anyone else. And even more luckily the little man wasn’t in the car with me. I was not hurt at all and the major damage to the car were dents, scraped paintwork and a lost wing mirror.

And then in a stroke of genius I decided to make up a grand story for Mr Zeus to save my own embarrassment of not being careful enough. It went something like this:

Me: I crashed the car
Mr Zeus: Okay, how?
Me: This guy just bashed into me as I was getting on the motorway! He took my mirror off and everything
Mr Zeus: Did he stop to give you his details?
Me: No, he just took off.

This is quite unusual in Greece and caused Mr Zeus concern so he went to check the car and came back grave faced.

Mr Zeus: That guy was on a mission to kill you or something
Me: Tell me about it!
Mr Zeus: I’m going to the police. CCTV must have caught him if you were getting on the highway.
Me: ….

Mr Zeus left and called me a few moments later from the insurance brokers, and at that point I had to come clean and admit it was all my fault. Which was a billion times worse than just having admitted it in the first place. See what I mean about not acting like myself lately? I don’t know what possessed me to tell such a fancy lie!

Anyway, long story short is I am still driving to Maroussi every few days, without one wing mirror, and trying to ignore the hefty sum my lapse in concentration is going to cost us at a time when hefty sums are in short supply. Besides, I think the bashed up car is making other drivers keep their distance from me, which can only be a good thing!

It was inevitable that driving in Greece I would eventually have a crash. At least it was all of my own doing. Greece regularly used to come at the top of the table for annual European road fatalities but in recent years has dropped to fourth, as sign of the crisis perhaps with people driving less?

Anyway, Bubble Pop! It’s Friday!

Spring and Other Things


I think about this blog a lot even if I don’t write that much any more. The truth is I have been meaning to, but only just managed to crawl back out of the deepest depression I have ever experienced. It struck in December, when my life seemed to be turning into one slow train crash. All I could do was watch as the carriages crumpled into each other in slow motion and think “How did I get here? How do I get out?”

Under the unbearable strain of facing your own child’s mortality, work and money troubles piled their ugly faces in and before I knew it I didn’t even know who I was any more. I went through the very classic getting up in the morning and wishing I hadn’t. I didn’t want to get out of bed for anything or anyone. I cried all the time. I still cry very easily. Simple questions like what to have for dinner made me feel like my brain was going to explode. I stopped answering my calls. All the plants in my house died and I didn’t notice them dying until I began to feel better and said “What happened to the houseplants?” To which Mr Zeus replied “You happened.”

It was as if my brain had looked around and said “You know what? Fuck this shit. I’m taking three months off.” I lost all ability to make decisions, to plan, to think beyond the next five minutes. Not taking time off work during this might not have been the greatest idea. But I knew no other way to cope.

It was horrible, terrifying. I don’t know if it will happen again. I’m hoping it won’t but I am ready to anticipate the signs if it does.

So what have I been doing since? Not much. I rarely have time for my usual hobbies of dancing and trips out with friends. I’ve been watching a lot of TV and making bitchy comments at MasterChef. You know that episode where they were set a challenge to cook Indian food? I said to Mr Zeus “I would have been done in about 30 minutes and sat back doing my nails”. Yeah, try doing the same if they assigned Ethiopian food, smarty pants. It reminded me of this slot from a show I used to love in the UK, Goodness Gracious Me:

Oh hilarity! For those of you born after 1995, this is what MasterChef used to look like before they tried to make it sexier. The presenter they have this year on the Greek MasterChef should just stick to her day job, which is as a music presenter on MAD TV. If I were a contestant, I would happily have shoved her face into a pan of roasting chillis every time she whined “Guys, you’re running out of time, faster! I don’t think you’ll manage!” Thanks for the support, love. Please, just don’t talk and remove your dead-pan eyes from before me.

In an amusing turn of events, the cast rode through the show to the semi final episode, and then all went on strike because they haven’t been paid. Fair enough. By the time the final airs, I doubt either semi finalist will even care any more.

I also went back to the Home Country, taking the little man and Mr Zeus with me. I haven’t been back in six years and the urge to go would not leave me alone any more, so I went. And it was great, we all came back without getting malaria, kidnapped or blown up. That’s always a bonus. One of the first things that Mr Zeus noticed is that Pepsi have totally swiped the market in the Home Country, leaving Coke lagging far behind. Not surprising when I caught site of a few bottles with their new feel-good coroporate bullshit, like “Share with Someone You Don’t Know” or “Smile at a Stranger”.

Hmmm, is market research a term you’re familiar with, Coke? That’s some of the dumbest advice you can give in the Home Country. You can’t just take an add campaign and run it around the world without any thought to local ideologies. How about “Don’t be a Terrorist” or “Stop burning effigies all the time” or “Sort yourself out with some democracy and not the same old recycled idiots that have ruined your country over and over again”.

On the day we visited the country’s art capital, which is usually more relaxed than the rest of the country, a political rally was taking place. The guy holding it had bussed in people from the most conservative areas of the country, transforming the city into what looked like a Taliban congression. I wanted to visit a certain shrine, and didn’t even get close enough. “The city doesn’t usually look like this” my cousin said apologetically to Mr Zeus. Later when we sat down for dinner in a restaurant, the younger cousins complained that their mobile signals were jammed. This is a common practice in the Home Country at political rallies, to stop bomb detonations by mobile phone, or something. “I have a signal!” shouted Mr Zeus. I checked my phone. So did I! There you go, trouble makers of the Home Country. Just get a foreign SIM card and your woes will be over.

Towards the end of my trip, which was all too short at only 7 days long, we spent a little time in my village. The sun had begun to set and after I prayed at the graves of my grandparents and uncles, I stood watching the fields of wheat swaying in the breeze. These were my childhood sea breezes and waves. There also used to be a vast river where we’d go for day trips and play in the sand. But the river has dried up completely now, the source being in a neighbouring country that has dammed it off. This river runs no more. But we had a sea of wheat. It was hard standing there under the mango tree I’d climed as a child, thinking of how much has changed for me, and fearing for the future as well as daring to be hopeful for it. It was like going back to zero and resetting my compass. I let the tears flow freely.

Well, I’m back now in more ways than one. I hope I’l be blogging more often.

Troll Ovaries… You Mad Bro?


I’ve started seeing a psychotherapist. How American is that? It came about after I suffered an epic meltdown on holiday. I thought I’d been coping well, but I fell apart on holiday. When we got back to Athens, I decided to get some help. I want to move forward with my life and be strong for my son, so I thought the quickest way to do this was to get professional help. And so I ran straight into the arms of the only psychotherapist I ever met, a wonderful woman who used to give seminars at Eutokia where I attended pre-natal classes. Hers is a touchy feely approach which works for me. I’m just one of those people that needs to be held when I cry.

Along with psychotherapy, she also does energy work. In our first session, we talked a lot, I cried a lot and she listened, hugged and did various energy cleansing exercises. Her conclusion made me wonder whether to laugh or cry. “Bollybutton, you are very very angry with your ovaries”.

Say whaaaaa??? But then I had to admit that she was right. I had given my body a job to do, to create a child and keep it safe, and it had failed me epically. So my first step was to reconcile myself with my body and for us to be friends again. The second was to deal with my anger. I’m apparently bubbling away like a slow-cooker of venom because I don’t lash out when I should lash out. She has a point on this. I have a habit of swallowing my first reaction rather than letting it out. Her opinion is that it will be healthier for me to express it. Better out than in. I’ve been working on that.

If Chrisi Avgi start ranting about bloody immigrants having meltdowns in supermarket lines, you’ll know that yours truly is to blame. Strangely, I do feel much better once I have reacted in the way I should rather than slinking away and thinking “Never mind”. Because it does mind. I have enough to deal with without some idiot deciding it’s her job to teach me manners while waiting at the checkout. I hope the therapy works. Therapy is frickin’ expensive, and there’s a recession going on!


As it turns out, I may well have been trolled by my ovaries. We recently visited the same geneticist who diagnosed our son to find out what we should do when it comes to baby number two. Now, I’m putting this information out here because it amazed me, and I had a sneaky suspicion most mothers tested as non-carriers of Duchenne are simply told it’s safe to go forth and multiply.

In case you’re wondering, it’s not that simple. I was tested via a blood test. In non-genetic cases of DMD, there is a very small chance that the mother could be a mosaic carrier (germline mosaic or gonadal mosaic), which basically means you have been trolled by your ovaries and your eggs are a random mix of fresh and rotten. This leads to the horrific scenario of mothers given the all-clear ending up with a second afflicted child. All I could think was ‘THANK GOD WE ASKED!” The chance is small, but seeing as I already beat some shitty odds, I ain’t taking it. It was generally a much jollier meeting with the old doc than any of the previous ones we’ve had. I also noticed he had lovely blue eyes. I’d never noticed that before. We won’t ever again have the luxury of waiting for the surprise of finding out the sex of our unborn children, but I’m sort of all surprised out anyway so I don’t mind.

Anyway, since I don’t want this blog to turn into a sob story, let’s have a song, shall we?

A Wing and a Prayer


There are moments  when your foundations are shaken to the core. Moments when you realize how frivolous your life up until now has been. In those moments you yearn to go back to the yesterday you so recently complained about, where your biggest problem was unpaid bills, or how you never managed to get through your pile of ironing. Those moments humble you. They come at a terrible cost, but the only way to keep going, the only way to not just fall on the floor and wish you could simply evaporate, are to believe that you’ll come out on the other side. Somehow.

For me that moment came three months ago sitting in a chair of a docto’rs office, and I wished I could run away back to the previous week where my biggest heartbreak had been listening to my son scream in terror outside the room where he had had his blood taken every day for nearly nine days. I was not allowed to be with him. Standard practice to stop hysterical parents from interfering with important procedures I suppose. I stood outside that door and wept, every fibre in my body screaming to be with my child.

It should have been so ordinary, so routine. He had a stomach bug. He kept nothing down. We grew afraid and raced him in the middle of the night to Paidon hospital in Athens’ centre. One day passed. Two days. Three. Children around us came and went. We remained. One aspect of a blood test was wildly out of the normal range. They tried various things. Blood was tested daily. They wouldn’t let us leave. “It’s probably nothing” everyone told us.

We all hoped and waited. My son played with his toys, annoyed by the drip in his hand. It’s probably nothing. Armies of paediatricians visited. They poked and prodded. When students appeared alongside the doctors, I grew increasingly worried. Make him stand, make him sit. Does he walk? When did he crawl?

It’s probably nothing…

By the seventh day, I was growing hysterical. I walked the corridors endlessly with my son in his pushchair, singing to him as I tried to get him to sleep. I still have dreams where I’m back there walking those corridors, trapped and unable to leave. When the cardiologist refused to give consent to discharge us, saying we were free to do so at our own risk, I don’t remember how I got outside, but outside I fell to the floor and howled in terror.

The hysteria passed, but each doctor who visited looked over the blood tests, frowned and advised staying put. I clawed at my arms. They ended up covered in red welts. I dug my nails into my scalp. I was losing it.

The stomach flu passed. We were still there. Finally, with no change in the blood results, we were allowed to go home. And there I enjoyed three days of bliss. Those were the last three days of life as we knew it. Something inside me sensed it. I kept saying “It’s probably nothing. The rest of the tests will come back fine.” Something in me didn’t believe it.

On a sunny Monday morning, I sat opposite a grey haired geneticist, a kindly man. I was there to hear good news. I felt sorry for how many times this man had to tell parents something terrible.

“I’m afraid the news I have for you is not good.”

My stomach plummets. I get a strange sensation I’ve never felt before. I feel like I am falling into myself.

Stop the ride. I want to get off. I don’t want to hear the next sentence. I want his mouth to stay shut. I want to pick up my son, thank him for his time and walk out of there. I don’t want to know. Normal slides away, and I have no choice but to watch it slip from my hands in the next few seconds.

My son has Duchenne’s muscular dystrophy. I don’t know what this means. I don’t dare ask. I stare at the doctor. “What will his life be like?”

“I’m afraid I can’t tell you.”

We often hear people say their heart broke, or their world collapsed. You don’t know what those words mean until it really does happen to you. I was in pain, my chest crushing in on itself. I wondered how my heart still beat. I wept in the doctor’s chair. The future I had imagined for my son vanished. I was left with nothing, just a big question mark, darkness and questions I was too petrified to ask. My tears didn’t last very long. Shock took over and they dried. “Pick up your son” the doctor gently advised.

I went to him, this precious, perfect, wonderful creature. I lifted him up. I looked at his beautiful puzzled face. I hugged him and breathed in his delicious smell. This was the creature I loved more than I could ever imagine, so much that  a lifetime with him was not going to be enough. Now, I am probably not even going to get that one lifetime. He couldn’t say it, but his expression asked all the questions. Why are you crying? What’s wrong? I’m bored.

My sweet angel. The little soul that had given me the gift of motherhood. I had wanted everything for him. I would have done anything. But no money in the world could buy him a new set of genetics. I kissed him. Save me, I silently, ridiculously, begged my little boy. Save me.

The months since that awful day have passed slowly. We have educated ourselves and began an aggressive round of visits to doctors in Greece and the UK. It’s not easy, because our son has developed a terrible fear of doctors after his nine days in Paidon. We fight on. We fire off emails. Friends trawl the internet for leads of new therapies. It sometimes feels like a search for a figment of our imagination. Mr Zeus and each other make light of what’s happening. We push each other on.

As time moves on, we really do have more good days than bad days. But when the bad days strike, I feel exhausted already and we’re only at the start of the road. I feel tired. I feel so so old. I cry like a wounded animal. I cry for my child and what his future does or doesn’t hold. I cry tears of panic – I can’t do this, I’m not strong enough, I can’t raise a child I will most likely lose if no cure is found in the next years. I cry because a mother’s first job is to protect her child, and I couldn’t save him from this.

I get selfish and weep angry tears. Why him? Why my child? Why us? Weren’t we good enough? Haven’t we always been decent people? Haven’t we always helped the needy? Why, why, why? I torture myself with these questions, knowing that they’ll lead to nothing.

In the end, there is no answer to this question. In our case, the why will never be known. My son’s case of Duchenne’s was down to a random mutation. I am not a carrier, which is a relief because I have three sisters, and Duchenne’s carries down from the mother. When the news was broken to us, my older sister had just got pregnant after many years of agonized failed attempts. I was immediately sent for testing to see if I was a carrier based solely on my sister’s pregnancy. My test was pushed to the top of the pile and the results rushed through, in case she too would need testing.  Luckily, I was clear, which is a blessing because she is expecting a boy.

Amongst the darkness though, there are rays of light. I found a strength I never knew existed in me before. I have said it before. I’ve had an easy life. Nothing has really ever tried me. The first time I was in hospital was to give birth, the second was with my child. I’ve always been shielded from the harshness of life. I never imagined I would still be standing after this. The crushing pain in my chest is not there anymore when I wake up each morning. We check where we are on a grotesque ladder of genetic conditions, and morbidly console ourselves saying at least it’s not this or that.

I try to exude positivity. Some very promising therapies are being worked on right now. This disease may affect my son’s body, but his mind will remain intact. He can still use his intellect to be anything he wants. I found a drive I never possessed before. I retook and finally passed a mathematics-laden financial exam my office had been badgering me about for years and which I had convinced myself was too hard to pass.

Mr Zeus and I work hard at untangling our messy heads. We never imagined this would be the path our life would be on eight years ago when we met under the blazing Athenian sun. He is my rock, and every day I thank God that I have him in my life. There is no one else I would rather have next to me in this battlefield. We talk and make action plans. We fuel each other’s positivity in the face of impossible statistics. There are no miraculous getting out of the wheelchair and walking moments with this disease. There are no “I beat Duchenne’s” T-shirts.

But most of all I get my strength from my son. He gives me endless joy and hope for the future. I know he has a strong spirit that will see him through, because in the end the ultimate trial is his, not ours. When I watch him sleeping, his beautiful limbs sprawled out like a starfish, I want to kiss him endlessly. I rub his hard muscles, the early sign of this syndrome. I hope he is not in pain. I wait for the morning when he rolls out of his cot onto me with a smile and a delighted “Mama!” as if returning to me after years away. I try to remind myself of how precious our time together is when he has a tantrum or insists on chocolate for breakfast.

This post has been hard for me to write. I have cried and relived moments that still cause me enormous pain. I have been composing it in my head for months, I just couldn’t bring myself to write it. I hope you managed to find your way here to my blog today, the new home of Big Fat Greek Life, because Google has locked me out of my old blogger profile. I can’t get onto the old blog even to monitor comments, but it is still out there at http://bigfatgreeksummer.blogspot.gr/. As soon as, if ever, they manage to tell me how to retrieve access to my blog, I will link up to this new one.

I hope you don’t think it was oversharing. Writing this has helped me order my chaotic thoughts. But most importantly, I wanted to make people familiar with the name of the disease. This is what I always ask of friends when they want to help – make noise, donate, raise awareness. The more people know, the more funds are raised, the faster we get to a cure.

Throughout our journey to this point, we have been cared for incredibly well by the Greek public healthcare system. We have been treated with great care. Every procedure followed met the current recommended international standard. We were from the start treated with a lot of kindness and patience. The doctors working in the Greek public system are heroes. They do an excellent job with limited resources. Even after being awake all night and dealing with the madness of overnight admissions that often overflowed into the corridor, they were still ready to patiently answer the questions we had about our son’s progress.

We are now primarily in the care of the Muscular Dystrophy Association of Greece. Once again, we have been treated very well and with a great deal of sensitivity. This organization runs on donations alone. I give their site below. Donating even one euro will make a difference.


Thanks for reading. BB.

The New Home of My Big Fat Greek Life


Hi all, bollybutton here. I’ve got a bit tired of Google’s arsing around lately so as soon as I can get back into my blog (because Google has decided I can’t have my blog and it’s gone from the dashboard but still live online) I will link up to this site. A lot has happened lately, unfortunately none of it good. I hope blogging will help me get my head back together.

The old blog is still at http://bigfatgreeksummer.blogspot.gr/ 

Stay spicy!!