Tuesday, 25 November 2014

Let's talk about therapy, baby!

The definition of therapy when you DON'T have a child with additional needs:

The definition of therapy when you DO have a child with additional needs:

I have a love/hate relationship with therapy.
Before Gabe the only therapist I had any contact with was a beauty therapist and even that alas was quite limited (there was also that hypnotherapist on holiday but that is a whole different story).

He was just five months old when he got the first member of Team Gabe - a physiotherapist - and to date has seen at least 30 more in various guises.

When your child is struggling with development and the experts start swooping in with their exercises and encouragement you feel like you are in the middle of a film. You know that one where the man has a car crash and loses the feeling in his legs but through blood, sweat, endurance and the love of a hottie woman, wins a dance competition a hour later.

At the end of every session I would be: "Hell, yeah. Let's do this. Let's get this dude walking. In yer face doctors". All to the backdrop of power ballads galore. Think: We Built this City and Eye of the Tiger.

Then after a few months my enthusiasm would be waning, the soundtrack more Running up that Hill and Don't Stop Believing with a little bit of The Climb thrown in the mix.

A year in and with so very little to show for all our efforts, the play list was becoming dire - I'm All Out of Love and Mad World.

No matter how much I rolled this baby back and forth, forced him to kneel on floppy little knees or strapped him into a suffering standing frame it was becoming a bit obvious that the dance competition was going to have to be in a MUCH later sequel (and the hottie female lead wasn't so hottie either).

What was the point? Seriously!

Comparing notes with other special needs mums we came to the conclusion that the NHS only provided physiotherapists to keep the antidepressant bill down in the early days - they lull you into a false state of mind to stay positive and believe that there is actually something you can do to make your child develop faster.* A therapeutic measure for all the family, so to speak.

Screw that, for a game of soldiers.
My therapy of choice was muttering excellent swear words under my breath at impatient drivers that cut me up (see you at the lights) and snotty sales assistants. That and wine chocolate. Not physio terrorists that made my child wail.

Someone help me please!

For a while, I went the other way and did no therapy whatsoever. I am a rebel like that.
I just got to know my child. My wonderful, beautiful child that was trying hard in his own special way.

Yep, all ready for physio.

Then with a bit of time, love and nurture (a period where we all chilled the feck out for a bit), he started making his own small strides.

Suddenly we felt ready to give it all a go again. And the twice-yearly episodes of NHS physiotherapy just didn't seem enough. He deserved more. So we started to investigate different types of private therapy.


We were lucky enough to access two Lottery-funded sessions with BIBIC. They made us look at Gabe as a whole child instead of one not achieving gross motor milestones. They assessed how his brain registers, interprets and uses information from the sensory systems – these include sight, hearing, touch, smell, body awareness and balance. Because he was not exploring in the way a typical child would we wasn't getting the right messages about his place in his environment so he kept getting freaked out every time his body moved. The era of vibration was born.

Yep, still pumped up for physio

By massaging his little body with vibrators and tickling him with feathers and the such (I know snigger away) we got him to recognise his body more and he started to know where it was in space. Before long we got him to sit with support without throwing himself back, which freed up his hands to play for the first time.

A wine glass is an excellent toy
Come on who has stolen my booze? Bet it was Mum!

Conductive Education

It was slow, don't get me wrong. Too slow, we thought at the time. When our funding ended we again got lucky and managed to get a free place in a local Centre for Conductive Education. This therapy was the opposite of what we had been doing. This service assumes a child will hit those big milestones and under their weekly input we got Gabe sitting without support and we got him (gasp!) standing.

That was an epic moment. We celebrated that achievement but it was double edged. Yes, he could stand but he couldn't get up or down. He didn't like it. It wasn't comfortable for him. In fact it scared the bejesus out of him. We needed to go back to the drawing board and fill in the gaps in between.


Like the tale of Goldilocks and the three bears, we found Brainwave.
This programme was just right.

It combined all the sensory elements of BIBIC rolled into a traditional physio programme. The sting in this particular fairy tale was that this therapy is expensive. So instead of pawning my jewellery (beads from Top Shop anyone, anyone?), we held a fund raiser. It was a cringe-inducing thing to do. But I am so glad that we reached out to our community who didn't let us down (thank you all again.)

Since we have started the Brainwave programme, therapy has for the first time started to make sense.
The power ballads are coming back on the Ipod. *hums Here I Go Again*

For the first six months we went right back and tried to fill in some of the missing gaps he had in his early development. We started those once annoying rolling exercises again, we threw him around the room (literally) and we roughed him up (so he got all that lovely feedback that toddlers get from flinging themselves around).

Yield, I say yield.
We giggled with him as he bounced on physio balls and we reminded him time and time and time again that those old hands were actually his and he could do with them as he pleased.

wow amazeballs!

And the prize? He starting using his hands to propel himself around and on the cusp of his fourth birthday, he gained independent mobility for this first time in the form of bum shuffling.

Now his therapy, both in school and through the Brainwave programme, is about gaining that core strength so his centre of gravity is strong. For the next six months the focus will just be getting up off the floor and getting back down.

Small simple steps to steps.

So therapy... after four years what are my take-home messages?
(I've given up on being the hottie female lead so I'll be the wise one in this film that uses words like "take home messages".)

  • Therapy is not a quick fix - you need the patience of Job (and his mate)
  • You are not a bad parent if it does not consume your waking day
  • You are not a bad parent if it does consume your waking day
  • There is always an element of a child will do something in their 'own time' no matter what programme you are using
  • Having fun and doing normal things is ace (and keeps you sane) 
  • Don't compete - there will always be that parent who is doing so much more than you
  • A typical child overtaking your baby is one thing, but another special needs child hurtling ahead stings like crazy. But they all get their moment in the sun eventually (honestly they do)
  • There is no holy grail - what works for one might not work for another
  • Ask around in support groups for programmes that might suit your child
  • Fund raising is always an option - it was not that cringey (honestly)
  • Lots of charities will help fund certain therapies (most are means tested)
  • Tomorrow is always another day... like the diet it can always start again on Monday

Gabe says: "I obviously find therapy totally exciting. What time is X-factor on?"

*I am obviously joking (everyone knows you have zero chance of actually scoring any antidepressants). 

P.S Mr Hollywood director can I play myself and can Bradley Cooper be the husband. Please. Thank you.

Ethans Escapades

Tuesday, 11 November 2014

The difference between us

To my dear friend

We've come a long way from discussing boys on the school playground, dancing to Abba before the student bop, drinking Pinot Grigio in our PJs whilst watching Friends box sets and yawning over coffee at the start of another working day.

We've done, seen, experienced a lot. Mostly good, some bad.

Now we are firmly entrenched in this new stage of our lives and the highs and lows it brings. I love sharing this part with you. Getting teary eyed as our babies take their first steps, as they start school in over-smart uniforms, as they muddle up their words in the school assembly but soldier on all the same. We've been on the same page as they've cut teeth at 4am and woke the dead with their wails. We've said over and over how much we love this journey and guiltily admit with a bashful giggle it's not always so easy. Often we're lost, not always in control, days can be long. We hark back to the time when our biggest worry was not being able to find a new dress to wear on a Saturday night, but we know we wouldn't change a thing.

It's nice to be one of the gang. To have our in jokes. To be in this world with little people as our epicentre. Encased, so to speak, in the shared experience.

Yet sometimes I stand alone.

Everyone has their own crosses to bear. Their own fears, worries, stresses - whether health, monetary or otherwise. I know that. Even that lady with the 'perfect' life (you know her at the school gate, in the office, the one who parks near you at the gym) might be a cauldron of insecurity and unhappiness. We are a complicated myriad of chemical compositions after all.

To quote Michael J Fox, we all get our own bag of hammers.

Gabriel is mine.

I am not saying my life is any harder than yours. It's not. But it is different. He makes it different. Good and bad different. I am still like you in so many, many ways but there will always be a difference between us.

As time passes, this will start to become more and more apparent. Will you leave me behind?


This has been our topic of choice for many years. The lack thereof. That bit was tough. Some days much more than others. We giggled a lot about it though. In it all together and all that. The rite of passage of parenthood. I bet now with older children you want to go back in time and whisper in your own ear. This shall pass. It won't always be thus. It just won't. I get that - my oldest two go to bed and stay in bed and actually have to be dragged out of bed some days for school. But my fear is this - I don't think I'll ever sleep soundly again. Gabriel does not do sleep very well and I've read a lot about how special needs children are prone to sleep problems long term. I want to joke about the 4am starts, his three-hour awake periods and how I sobbed in solidarity when he couldn't fall back asleep the other day despite being bone tired. Somehow it's just not that funny. No matter how I dress it up.


Again a subject of much frustration and mirth. They are stubborn little things these children. What they liked yesterday, they hate today. My daughter would live on chicken and rice cakes if you let her. We've laughed hard over the years about their diet choices as we give in yet again to another McDonalds or pizza. What joker declared 'if they're hungry, they'll eat', we'd say through gritted teeth. But my friend, with Gabriel we still struggle here so much. It consumes our day. He is little enough now that there aren't too many stares when spoon feeding him out and about. But what about in five, ten, fifteen years - will you will feel comfortable dining with us, meeting me for lunch as I wipe pureed mush from the mouth of a teenager? Will our get togethers still feel like fun?

There is much to juggle

I know it drives you mad when I don't return calls or texts, when I forget about stuff I am supposed to be doing. I know it's a little bit boring when I go on about school statements or hospital appointments (they are). But man, it's busy. I was distracted yesterday as I remembered I hadn't called school to rearrange an appointment for a sleep system assessment to protect his hips as he gets older but you see he had a double gastroenterology and endocrinology consultant appointment to review his medication (see told you it was boring). We still have many medical appointments so I am constantly juggling this old work-life-balance. Fitting in work when I should be watching Made in Chelsea. Then there is the therapy to slot in - the expensive, privately funded by our wonderful community, therapy. I feel if this child ever takes a step it will have to be because we walked a million steps with him first. If he ever picks up a fork, it will be because we have shown him, hand on hand, more times then he'll ever need. Time. There is never enough. And this makes me cross sometimes. But lovely person, there is always time for a natter and a laugh. For a glass of wine or two. Please keep asking.

I get that "pang" at times

Gabe is Gabe. I wouldn't now change him for all the tea in China. Fact, To me, he is the funniest little boy in the world. I never tire of picking up the DVDs he flings around the room. I'm happy to have In the Night Garden on loop (but man isn't it annoying). But you know it doesn't matter how far down the road of acceptance I go, that pang will come at the strangest times. I can watch your baby waddle or sing or jump a hundred times and it bothers me not a jot. I don't notice such is its normality. Then on that 103rd time the sad pang will come. The "oh we'll never have that" feeling. The "what will become of us" panic. But then it disappears and normal service resumes. Just pat me on the back, force feed me a Twix and I'm good. I'll be back on my way. You are always quite marvellous you know that.

A cold is never a cold

You must despair when I stress out in winter. It's a cold, you must secretly think as I fuss over a Gabe snuffle and cough. A cold alas is never quite a cold. A cold can become a chest infection, a chest infection can become pneumonia, pneumonia means no feeding, no feeding means becoming weaker, weaker means becoming static, static means collapsed lungs, collapsed lungs mean blue lights. Blue lights mean intensive care. Intensive care means... well... He gets stronger each year but he is no where near out of the woods - his body can't function well enough to feed, to walk, to do the most basic things. In acute illness there are no reserves, there is no hidden strength. And illness brings with it the cruel mechanisms of regression - that rob and steal that celebrated development.

We can't look too far ahead

Remember how we laughed that our boys would be weather men so we could see them every night on TV and be part of their working day. How we giggled that the girls would be pop stars as they murdered another Katy Perry number. With Gabriel, I look as far as next week. Not much more. His future is an open book and I'll just live each page as it turns. I can't do much more. I don't want to think about him being an over-sized baby in his teens, whether he'll reach adulthood. I don't like to peep at the prospect of adult disability services. I don't think it's good for the soul. What about even later? When we've gone? To whom will his care fall? 

No, I'll just take today.
Today as he giggles in the bath with his sister after eating up all his orange mush over two episodes of Iggle Piggle.
This moment as he nods off over a much loved bottle of Neocate and I lay him down for a sleep that doesn't ever last the night.
I'll celebrate now as I go downstairs and pick up the 48 DVDs, collect the Forbes Daily he manages to programme on my printer and read again the wonderful note in his school book about what a lovely day he has had.

I'll get up again tomorrow and look forward to the day with all my children. The children that bond us and the child that sets us slightly apart. 

And all will be well. Everything will be fine.

Because I know if it gets too heavy you'll help me carry this bag of hammers.
Just as I will always help you carry yours.

With much love.

Post Comment Love

Wednesday, 5 November 2014

Man the hell up woman

It started when I was pregnant with my oldest and a story was on the news about a penguin whose baby had been stolen from the zoo. They kept showing a picture of the mother pining for him.

Oh my days. I was a sobbing wreck before the day had begun.
The new husband was a bit shocked and scared truth be told.

You see I am a bit of a hardy lady and before children was not the most sentimental. I laughed at Valentine's Day, partied through Christmas and often forgot birthdays (and probably still do).

And you certainly wouldn't catch me breaking my heart over a flippin' (see what I did there) stolen baby penguin.

Now well... I well up at the stupidest thing.

Just this week I've shed a tear at the RSPB Give Nature a Home advert where a little girl builds hedgehog hotels and frog swimming pools.

What the hell! If I found a hedgehog in my garden I would probably freak right out (and move out). The idea of mini beasts makes me want to vomit. And a frog seriously or even a toad (shudder).  See you later alligator. Yikes.

Source: RSPB

Yet after watching this I was nearly pulling on my fake Hunter Wellies from Asda and setting up Disney Land for all things slimy and creepy and crawly in my back garden (and I don't mean ex-boyfriends boom boom!).
Source: RSPB

The week before it was the Coleman's advert where the Dad makes a cottage pie for his recently dumped daughter. It made me look forward almost to the day when my girl comes home after her first heartbreak. I will rustle up a pie and she'll smile and everything will be okay again (obvs she won't make sick faces at my cooking, slam the door on me and shout "I hate you and my life.")

Source: Coleman's
And those Lloyds TSB For the Journey adverts got me EVERY single time. They make me want to have triplets and keep buying houses (I am joking husband if you see this. It is safe to come home. I promise).

Source: Lloyds TSB

Do advertising executives know what they are doing to me? I am getting worse not better. Which leaves me in fear of how I am going to get through the festive TV period without looking like a overgrown panda. What must my children think?!

It is supposed to be the season to be jolly yet I always spend a proportion blubbering over Chrimbo adverts.

Well not this year. No way. Not a chance. I am manning myself up.
This year I will be immune. Nothing is going to get me all in an emotional fuddle.

Not the cute kid counting down the days to hand his parents a present (Thank you John Lewis).

Source: John Lewis

Not the hibernating bear and his bunny mate (John Lewis you again).

Source: John Lewis

Not the even the soldier coming home during his children making him a Christmas video (Sainsburys just stop it).

Source: Sainsbury's

Yep. This year I will scoff at the mushiness dressed up as magical advertisements.
I will.

What's that you say? They have already started playing the Coke adverts with the Santa train. Oh no.
Must go and find a tissue and start bulk buying Celebrations tubs. I just can't believe the Holidays are coming!!!

Gabe says: "Oh no I thought this orange outfit was bad enough.
I forgot about the snowman jumpers and matching socks. This is bad!"

Friday, 17 October 2014

The tale of the mad woman and the slaughtered phone

Once upon a time, there lived a beautiful princess called Alison.

*yeah alright you are going to have to use your imagination for this one - Jeez*

Like all ladies of her time she had an olde worlde device called a mobile phone. She loved this mobile phone as she used it to chat to all manner of friends (some she had never met and were probably just stalkers taken with her youthful beauty).

It was forever close to her and in random poppets of time she would access the world inside her phone for a few minutes here and there:
  • Waiting for the kettle to boil she would send a message on What's App 
  • Running late for school she would stop mid frazzlement and make her children pose by an interesting leaf for Instagram #interestingleaf #posingchildren #iamredinfacefromrunningtomakebell #shouldgetupearlier #butIlookperfectonInstagram 
  • Cooking up a mean stir fry, she would boast about her cooking endeavours on Twitter 
  • When tidying up the sloppy mess of mushy vegetables and chewy chicken that no one ate, she would hunt down new recipes she'd never make on Pinterest 
  • Skiving from the bath-time madness in the pretence of fetching a towel from the dryer, she would catch up on the vital 20 minutes she had missed on Facebook
  • And finally when all her children were slumbering in their beds, she would start boring everyone on her random musings on blogger - her mum and her sister were apparently fans (or so they said when pissed pressed!) 
Like every beautiful princess, there was a mean baddie out to steal her fun. In this particular tale it was a little boy called Gabriel.
The scary baddie
Gabriel would steal her phone at every opportunity and when he was bored of phoning all her friends and leaving heavy breathing messages and tweeting out pictures that looked like blurry bums (but were just interesting leaves) he would throw the phone and giggle as it smashed (mwahahahaahhaha).

The princess would be distraught as it would take at least three minutes for the scattered battery to load back up. Slowly, over time though the battered phone started to take longer to load back up, and its features became frailer and less effective. It was clear that it was ill, perhaps even dying.

First it stopped accessing What's App (it's too big for me now it said), then it would only load the first 20 tweets on Twitter (soz it sobbed) and recently it would flash error messages on Facebook (I feel so bad but it’s all too much, it wheezed). The end was nigh though when its volume control went and the beautiful princess would have to do a Dom Jolly impression - WHAT. I CAN'T HEAR YOU!? if someone rang on the street and a car passed.

It was becoming more of an ornament than a mode of communication.

She knew it was time to replace her faithful old friend but with a big birthday looming she held off on getting a new one in case any of her rich princess friends brought her the latest iPhone 6 (this is a fairy tale after all).

With no phone to play with in those spare moments in the day, the princess had to find other things to keep her busy. It was a strange old time. She found herself doing weird random things:
  • She started to get obsessed by storage and kept buying all manner of plastic boxes and Aldi ottomans 
  • She started getting house envy from buying posh interiors magazines and would bulk order from Next Home 
  • She would then spend the rest of the week arranging couriers to send items of furniture back (there was no room with the plastic boxes)
  • She painted the kitchen door - badly as she couldn't be bothered to sand it down so it had a snazzy marble effect
  • She organised the children's underwear drawers
  • She went to all five supermarkets in her area looking for bargains - and saved £2.33 (but spent £30.55 on posh magazines)
  • She managed to actually clean the bathroom a couple of times a week. She even scrubbed the grouting in the tiles.

The moral of the tale:

Life with no mobile phone is terribly dull and boring; having a clean bathroom and painted kitchen door is not the road to happiness; supermarket shopping makes you crave wine and there are no hottie courier men (only pissed off ones who are sick of coming to your house).

P.s. Houses look well crap with loads of plastic boxes everywhere. Timeless fact.

Wednesday, 1 October 2014

Patience: wherefore art thou patience?

Patience. It has left the building.

I knew it would eventually. Impatient git.

Although I have never been the most tolerant of women (think slow walkers and call queues), having children has tested me to the limits at times.

Take last night as an example. I had a grumpy little boy up in the dead of the night. He was outraged by the fact he had done a poo. But this was no ordinary poo. No. This was a stealth poo. It took half an hour of him wriggling and flicking me in the face for me to realise it was lurking underneath. After I had freshened him all up (not a problem my little gorgeous prince), I settled him beside me for some squishy, sleepy cuddles to help him drift back to the land of nod.

Or so I thought.
Replace squishy with kicky,
And sleepy with wide awake,
Cuddles with grumbles,
And land of nod with Isle of you are a fool if you think you are getting any more kip.

Three hours later,
My patience was wearing out.
What am I saying - my patience had picked up rational and gone and slept in another room.
It was a long night.

Since becoming a mother, especially a mother to a child like Gabe, I've had to dredge up patience from the pit of my stomach. But there is an overdraft - it just means that someone else like my husband gets the love later (the - do not even think of putting that cup on that mantelpiece without a coaster you big loser - type of love).

I can't be alone so I've devised this Just 17-style quiz just to see where all the other moody mummys are. Want to see what type of mother (or father) you are?

The Comp Gorg how patient are you really quiz?

Scenario 1

You are knackered (quelle surprise!) and fancy a little quiet sit down with a brew (you are an optimist after all) but your three children are simultaneously jumping from sofa to sofa, knocking all the DVDs off the shelves and telling you repeatedly that they are hungry. The jumping bean suddenly jolts the tea cup from your hand all over your new rug.

Do you?:
A. Smile sweetly, shake your head in a minor exasperated fashion saying: "these things happen" as you fetch the carpet cleaner. You clear up the mess with minimum fuss, before making a healthy snack for the hungry children and commencing sensory play for all three.
B. Run out of the living room and weep loudly in the kitchen until you have calmed down and can face the world again with the aid of a Double Decker.
C. Smile sweetly at children and then send angry texts to your husband. Because it is all his fault.

Scenario 2

You've done the school and nursery drop off by the skin of your teeth and now need to race to work. However, someone has blocked in your car in the nursery car park. You can see them through the window having a chat with the nursery teacher, now their child, now another mum, now a different mum. You were already going to be late. And with every creeping second, it is getting later.....

Do you?:
A. Put the radio on and enjoy the peace for a bit. Use the time to think of fun things to do with the children later like making puppets from the P45 you will probably get when you arrive in the office. Hey ho!
B. Start sobbing and hunt in your bag for that chipped Minstrel you noticed yesterday left over from a trip to the cinema. And there is a half chewed Refresher bar in the bit by the hand brake; that will do.
C. Smile sweetly at the woman and then send angry texts to your husband. Because it is all his fault.

Scenario 3

Your mother in law is coming around and you have tidied every nook and cranny and even sorted out the stored clothes under your bed. All you ask for is for the house to remain tidy for the first five minutes. After that you don't care. But daughter has decided now would be an ace time to play an epic game of card shop laying cards on every available space, son has weed all over the toilet seat, and the littlest one has pulled all the DVDs off the shelf (it is kind of his thing).

Do you?:
A. Tidy up the 507 cards, wipe the toilet seat (floor, walls, blinds: aim ain't great yet) and pick up the DVDs for the 309,876 time singing nursery rhymes before ruffling each child's head and calling them messy pups.
B. Flounce into the garden wailing, taking with you the Sara Lee Double Chocolate Gateau you've defrosted for desert and hide in the play house until midnight.
C. Smile sweetly at the peed up bathroom and then send angry texts to your husband. Because it is all his fault.

Isn't this a great game Mum. Shall we play every single day!

Mostly As
Do you have children called Topsy and Tim? Or is your name Granny Murray? Come on, you are not a real live person are you? Please say you are not. Please. No. You can't really exist. Do you do yoga at 5am, followed by Zen studies. Bravo. Hats off to you.

Mostly Bs

Welcome, my friend, to parenting. Tears and that chocolate cupboard are your only true friends from now on. My advice: always have Wispas. And wine. At a push Jaffa Cakes (if you are desperate). Embrace this new lifestyle and your fattening bum.

Mostly Cs

You are right. It is all his fault.

Gabe says: "So let me get this right, we are really called Topsy and Tim?"

Brilliant blog posts on HonestMum.com

Sunday, 28 September 2014

Cilla: surprise, surprise

A strange thing happened to me this week. I found myself sniffling joyfully at Cilla, the ITV three-part drama about Cilla Black.

I know. I know!

How can this be? Although I did cry at the Coleman sauce advert as well this week so my cheese-monitor can't be trusted.

Even though Sheridan Smith is just fabulous and the love story between Cilla and Bobby is really cute I was surprised (surprise, surprise) to find myself swept up in bittersweet nostalgia

You see the whole show reminded me of my Dad. My lovely Dad who I lost 13 years ago.

And I miss my Dad. Lots.

My husband thought I was a loon bucket as I sat there dabbing my eyes and saying stuff like "the unexpected hits you between the eyes!"

Anyone who has lost a parent will tell you that it is the silly stuff that catches you out. The unpredictable thing when you are least expecting it - that's the surprise you seesurprise, surprise (sorry! I'll stop!). Sometimes those memories can be painful but then at other times, they are worth their weight in gold.

The show took me back to a time when my Nan (my Dad's mum) had a stall in a local market selling fur coats and pink fluffy negligees (back in the day when both were acceptable). I loved going to that market. I loved the banter and bartering. I mostly loved going around the other stall holders, my Nan's mates, who would give me 50 pence to spend on the toy stalls. It was beyond ace on toast.

There was one stall holder that held particular fascination - a lovely lady called old Cilla - whose daughter hosted a show on a Saturday night that we could stay up for. I was in awe of the fact that my Nan was friends with her.

I would pester my Dad for information but she was just always Cilla from the block to him (before Jenny got in on the action). My Nan was not so shy and would regale us with stories - usually putting herself in the epicentre (she was pretty cool my Nan).

Cilla, Alan and Old Cilla. Source: Daily Mail

Getting a slice of your childhood handed back to you on a plate on a Monday night is quite a gift. Especially as I get older and my links to my Dad's family become less and less. His stories are not shared as they once were. But for two nights recently I've been thrust into them again and I felt like I had him in touching distance. Precious stuff.

So who is joining me for the final part of the series tomorrow? Look out for old Cilla's chums in her parlour.

If the unexpected brings a smile.
That's a big surprise.
Surprise, surprise!

Gabe says: "Anyone got any idea what she is talking about? Anyone? Nope! Nor us.
But I do like the sound of those pink negligees."

 photo 93142f35-6d39-479f-b3de-d94dbca68162_zps58499252.jpg

Thursday, 18 September 2014

Listen to the mustn'ts, then listen close to me

Listen to the mustn'ts, child. Listen to the don'ts. 
Listen to the shouldn'ts, the impossibles, the won'ts. 
Listen to the never haves, then listen close to me... 
Anything can happen, child. Anything can be.” 
Shel Silverstein

I stumbled on the above quote a couple of years ago when I liked to torment myself by trawling through special needs forum boards. A lady whose child had just been diagnosed with muscular dystrophy posted it. She said even though her boy had just been given one of the cruelest death sentences and they would have to watch as his active body slowly wasted away, she was not giving up. She was not giving up on believing in the impossible.

Waiting on test results for the same disease for Gabe, her strength and determination sowed a seed.

Anything can happen, anything can be

Our environmental conditions weren't right back then to make that seed grow. It was a bleak desperate old time. We struggled to put one foot in front of the other. Jobs, our beautiful other children, friends and family were just the backdrop to the relentless turmoil that was looking after Gabriel.

It physically and mentally consumed us. 

He was ill every day for the first two years of his life. His chest was constantly infected and a hacking cough would bring back every ounce of milk and every milliliter of medication (ironically needed to stop the vomiting and cough) within minutes. Then the process would have to begin again. Over and over, hour after hour. All day and all night. Every day. Every night.

There was no sign of it ever abating. 

It seemed back then that there was only one possible conclusion to this nightmare. It was suggested by the medics that this was something Gabriel would not be able to overcome. It wasn't just the illnesses, it was the inability to even hold up his own head or acknowledge his surroundings. He wasn't developing at all. Things, they hinted, would get worse before they got better. 

We took shifts to stay awake downstairs beside his cradle for the first year. He was in most pain and distress through the night. Sometimes we would nod off, then wake frantically to check he was still there, still breathing and hadn't choked on the secretions, which he had no strength to control. Prayed that we hadn't let him down by sleeping on our watch.

It became a new normal. But sometimes, in the dead of night while the world slept on, the injustice of the situation would be overwhelming. It felt like we were just delaying the inevitable, prolonging the torment and that every second with him was so precious but yet more painful.

The worse form of torture is one that is sustained, one that you know with certainty will begin again with each new day with little hope of an end.

The doctors were stumped. They didn't know what was wrong. Just that it was so very wrong. As predicted things did get worse. He survived two intensive care stays, we introduced a feeding tube, we continued mopping up his vomit with practiced hands and we waited on test result after test result. The joys of the lottery of life-limiting paediatric diseases. 

Listen to the shouldn'ts, the impossibles, the won'ts.

But then things gradually started to get better. Slowly and slowly. 
His milk protein allergy diagnosis was a turning point. There came many more.
It was as if the claws of the vicious cycle he had been in were slowly releasing him.
  • He started to put on weight, to show an interest in food, to go from refusing his bottle to swigging its remains and demanding more
  • He began to hold up his own head, then roll. Slowly he began to sit, discovered his flair for bum shuffling and just this week has learnt how to get himself up from lying to sitting. His first, but hopefully not last, transition through positions
  • He began to babble, then sing his lar lar lars. He deemed it important to master "let's go" and "no, no, no". He now shouts "hiya, alright?" as his dad walks through the door
  • He didn't at first realise his hands were his, would scream at the merest brush, then would spend hours admiring but not using. Now no reachable surface remains unflicked, untouched or explored

  • Unplayed with toys lay littered across the house, glaring remainders of inability. Now with glee they are being dusted, batteries sought. Three years' worth of birthday, Christmas and whim-based treasures are being introduced. With bursting hearts we watch as they are banged, bashed and discarded as designed.
The Forbes Daily that randomly prints each day from the tinkered with printer, the data usage always at critical status due to his phone-based shenanigans, the orange mush stains on my settee and the little bum that mops my floors, makes me very grateful every day. 

He still has a good way to go. Our life is governed by the mustn'ts and the don'ts and we have to work really hard at the shouldn'ts and the impossibles, but now we won't accept the won'ts.
Not anymore.
You see anything can happen, child. Anything can be.

Gabe says: "Just off to get my Forbes Daily, See ya"