Friday, 18 January 2013

Moving Out

Cheeky was five months old when he moved out of our room and into his own room.  I was devastated.  The weeks were whizzing by and he was growing up so fast.  All the books said he should be in with us until he was six months old, except perhaps for Gina Ford who, if I remember correctly, expected babies to be in their own room from birth, sleeping through the night at two weeks and practically sitting up and feeding themselves at a month of old.  Although, I might have made that bit up!  Anyway, he was my first child and if the books said six months then six months it should be, but Cheeky wasn’t sleeping well in our room – he knew we were there and would wake up looking for attention and entertainment in the middle of the night.  It made sense to move him out.  I just wasn’t ready.  It was the right time though and he slept so much better in his own room.

Little H is two years and ten months.  He finally slept in his own room for the first time last night.  It was the right time for him and, I think, the right time for me too.

Reflux and projectile vomiting at odd hours of the night was the first thing that prevented Little H moving out of our room.  Unable to move his head out of the line of fire he would vomit all over himself and risk choking on it.  At about six months old, when he ‘should’ have been ready to make the move to his own bedroom, I was regularly jumping out of bed at the slightest sound, dragging him from the cot and tipping him over while he threw up half the days feeds onto the layers of towels waiting expectantly on the floor.  The washing machine was on constantly and it wasn’t unheard of to be stripping the bed two-three times a night and putting loads of washing on at 4am. 

The next issue was chest infections.  Many a night was spent sat in the bathroom, perched on the closed toilet lid, with H coughing and wheezing away in my arms, the shower on full blast filling the room with steam.  My hair, during those times, was a constant state of frizz and I developed an ability to doze sitting upright on a toilet – an impressive skill indeed.

By far the biggest issue preventing Little H from progressing to a big boy bedroom though was his epilepsy.  Without any warning he would stop breathing and turn blue for minutes at a time.  No sudden movements, no warning noises; silently he would stop breathing and it was just a matter of time before the unthinkable could happen.  We lived in a constant state of high alert, adrenaline coursing through our veins.  Night time provided no respite, relying only on a sixth sense we would leap from the bed, one starting CPR while the other set the timer (to ensure we administered midazolam – his emergency medication – at three minutes) and switched on the oxygen.  It was an unimaginable way to live.  Most of the time H slept in the bed between us.  Sudden stiffening of his limbs indicated the onset of a seizure and too exhausted and terrified to trust a sixth sense would wake us, we relied on this subtle movement to warn us in time.  When he wasn’t in bed with us, his cot was at the foot of our bed and we slept the wrong way round in the bed so that our heads were only centimetres away from his.  I often slept with my hand pushed through the bars of the cot holding his so I would know instantly if a seizure started.  I must confess there were times I was so exhausted from the lack of sleep that I didn’t wake, but luckily the times I missed it, Mr. M woke and vice versa.  Many a morning, before opening my eyes, I would pray Little H was still alive. 

Eventually we were given an apnoea monitor but it failed to work as throughout the seizure H continued to have tiny contractions in his stomach muscles which fooled the apnoea monitor into thinking he was still breathing – clever eh?  So after much fighting and letter writing to Doctors and Consultants, a charity funded a SATs monitor for us so his oxygen levels could be monitored overnight but it took us months and months to trust it.  To be fair, many a time we woke before the alarm started, showing that our sixth sense worked pretty well after all, but it was good to have the back up just in case.

Little H continues to have seizures but thanks to the Ketogenic Diet hasn’t stopped breathing during a seizure for ten months.  Considering it was happening around 25-30 times a month this is amazing and has transformed our lives and his.  Gradually, as the gap between seizures grew, we moved his cot further and further away from our bed.  It’s not a big room so that’s not very far in real terms but emotionally it was a huge leap.  The next step was to get him into his own room and that finally happened last night.

(Not so Little any more) H spent last night in the rather large profiling bed that was delivered yesterday rather than cramped and squashed in a tiny cot.  He slept from 11:30 until 7:30 – which is mostly unheard of unless he is ill.  In the room next door, I checked the numbers on his SATs monitor (the benefits of a tiny house is that the lead is long enough to have the monitor in our room) and watched him sleeping on a video monitor.  I actually slept really well too.  I’m not ready to let go completely just yet, but the wonders of modern technology mean that H can have that little bit of independence and make that next step to his own bedroom and I can trust that he is safe and that I’ll be alerted should anything untoward happen.  Cheeky is determined to have a sleepover with his little brother too and since the bed is big enough for the two of them, I think that should be possible. 

My little boy is growing up, little by little, and I am so proud of him. 

Monday, 14 January 2013

Cyber Friends

Feeling lonely?  Join Facebook. 

You too could have 500 friends

For a long time I held the belief that relationships and friendships built online are based entirely on lies; fat old men, paedophiles on the prowl, sad lonely spinsters all hiding behind their computer screens typing lies about their age, weight, interests and how attractive they are to convince unsuspecting fools to fall in love with them, befriend them or give them tons of cash.  At best it provided those who were too shy to go out and meet ‘real’ people a place to be themselves, but for the most part I looked upon it with derision and suspicion.  I remember my younger brother talking about friends he had met online and I openly mocked him for his stupidity and discounted them as neither real people nor real friends.  The advent of social media sites like myspace, bebo and facebook passed me by for some time before I took the plunge and signed up and even then it was only so I could nose at other people’s photographs.  It irritated me to see people with 500 “friends” because clearly these people weren’t their real friends.  Real friends pop in for coffee, or you meet them for a drink after work.  Real friends are people you’ve known a long time, that know your family, that you went to school with, not some random that friend requested you and you were too embarrassed to ignore them.

When it became apparent that Little H’s difficulties weren’t just a passing phase or that he’d catch up, I found solace in the internet.  It was my way of helping him, of doing everything within my power to make things right, of keeping myself sane.  I googled  every medical term that was ever mentioned about him and searched internet sites for hours with lists of symptoms and characteristics certain that I could diagnose him myself.  Most new mum’s sign up to the Bounty Website – the go-to place for all pregnancy and child related questions, and I was no different.  On a forum there, I begged if anyone recognised some of the medical terms that H had been branded with (hypotonia and microcephaly I think) and a lone voice replied, a beacon of light in the darkness, that Little H wasn’t dissimilar to her son and that he too remained undiagnosed.  Finally, I found I wasn’t the only person in the world who had an undiagnosed child; there was at least one other out there!  She pointed me in the direction of Swan UK, I joined the facebook group and the rest, as they say is history.

The group was much smaller then, though it has grown rapidly since, and I quickly became ‘friends’ with the members on there.  It was a place to ask questions, to share fears and joys and I no longer felt alone.  H’s health deteriorated and we lived through some truly terrifying ordeals and experiences.  The friends I had grown up with and shared first crushes with, who had moaned about school with me and danced through many a drunken night with me struggled to support me now.  It was my virtual friends that sent me messages of hope and strength and positivity.  They were the ones emailing when H was rushed to hospital while we were on holiday, they were the ones texting to wish me luck for appointments.  It was these online friends, people I’d never met in person, which knew more about my deepest, darkest, most depressing fears at that time and it was them that pulled me through it. 

Early on I was asked if I wanted to blog about our experience but it seemed a little too self important.  Although I enjoyed writing generally, who on earth would want to read my ramblings and did I really have anything worth saying?  At 4 o’clock one morning as I watched the sun rise over the hospital car park from the window of the isolation unit in the high dependency room, the flood gates opened.  With the steady beep of the sats monitor in the background and the oxygen machine whooshing rhythmically I began to write.  The words came stumbling and tumbling out; my fears, my frustrations, the loneliness and emptiness, spilling from my brain onto the tiny screen of my blackberry phone.  I barely proof read it before emailing it to Lauren at Swan UK.  My first ever blog post. And finally, at about 5am feeling lighter and as if a huge weight had lifted from my shoulders, I slept. 

From that point on, blogging was a release and a means of ordering my thoughts.  All the worries and fears that churned around my head could be placed neatly, in arial font, online.  Those words and thoughts I couldn’t bring myself to say out loud could be typed instead.  I could finally breathe again.  I never really expected anyone to read it and I avoided sharing it with family and friends.  But my online friends read it and every step of the way they were with me, offering words of encouragement, nods of agreement and lots of virtual hugs.  I didn’t really start writing to raise awareness, which would have been a much more noble thing to do, it was more to help me process all of the thoughts milling round my head.  I viewed it as an online counselling tool, a way of stopping myself going completely mad.  However, one of my proudest moments was when someone stumbled across my blog and finding similarities with her own child then accessed support from Swan UK as well.  To have helped just one person find support and feel less alone is amazing.
Feeling the love, cyber style

Through Swan UK and through blogging I have met some of the most wonderful people.  Some of them share similar challenges to me and some of them don’t.  Many of them live hundreds of miles away but I have contact with them daily, whether that be through facebook, or text, or twitter, or skype, or the good old fashioned telephone (we’ve not regressed as far as letter writing just yet).  Some of them I have met in person and some I am hoping to meet soon.  The wonder of making friendships online is that by the time you do meet face to face that you already know so much about each other that there is no time for awkward silences, (except for the initial awkwardness when you’re not really sure if its them as they don’t look quite like the glamorous pictures they’ve been posting.  Maybe we should revert back to wearing red carnations in our lapels?)

All in all though, since none of the friends I have met online have turned out to be psychopaths (as far as I know) and most of them aren’t perverts either (you know who you are) then I shall have to retract my earlier statement.  I have genuinely met some of my best friends online.  

I guess that means I owe my little brother an apology too!


You can visit the SWAN UK website to read more about undiagnosed children and their families by clicking here:

To celebrate the diverse and creative blogging community, and to tie in with the celebrations of ‘Undiagnosed Childrens’ Awareness Day’ on 13th April 2013, SWAUK will be hosting its very own blog awards.  Nominations start on 21st January.  You can find out more here .

Saturday, 12 January 2013

Ode to Epilepsy

Epilepsy tried to steal my child.
He crept in and caught me unaware,
Leaving behind a limp and lifeless body;
A blue the colour of the deepest, darkest, coldest ocean.

He tried again and again,
To take my baby from me.
In the dead of night, He’d come,
Robbing the air from his lungs,
And taking a piece of my heart with him each time.

I didn’t recognise Him at first, this Demon,
He wasn’t the epilepsy I knew.
He lurked unseen in the shadows,
And without warning would pounce.
Nowhere was safe.
We lived in fear.
Feeling His evil presence,
Ever near; ever watching; ever waiting

I begged Him to leave;
But He wouldn’t listen.

I pleaded with Him to go;
But He remained.

I sobbed.
I screamed.
I cried.
I waited.
But Epilepsy wanted my child.

Piece by piece He took him,
Hoping I wouldn’t notice as he slowly started to fade.
He took his spirit.
He took his passion.
He took his smile.
And He ripped my heart right from my chest.

But my child is stronger than that Demon.
He fought with all his strength.
And little by little,
He came back to me.
His smile, the sun, warmed my blackened heart and helped it to grow.

And together we stand strong
And determined in the face of Evil.
His disguises have changed;
This dangerous Demon.
But I am no longer scared of the shadows.
I will stand and fight.

You will not take my child.
you WILL NOT take MY child