Tuesday, 20 January 2015

Kids, things that are just not on

Dear children,

I once had to write Daddy a letter to remind him of the rules, which he was flouting far too frequently for my liking. It is with sad regret that I now feel that I have no choice but to also remind you three of your contractual obligations as well. When I signed up to be your parent I did so with certain caveats. A simple ruling system was set up to be adhered to at all times. Lack of understanding and generally being small children are not deemed to be suitable reasons for non adherence.

As previously stated:
  • These rules are communicated telepathically.
  • They are also subject to change at any given whim.
  • The list will be ever growing and infinite.
  • They can be made up on the spot.

Given the seriousness of the breaches I have again no choice but to formally stipulate in writing the terms of our alliance. Further violations will result in withholding of Peppa Pig and muttering of swear words under the breath.

I have decided to devise a list of things that one or the other of you (or all three at the same time) have done recently clearly taking advantage of me being distracted by Facebook my chilled out parenting approach.

Things that are just not on


  • Crying in the middle of the night just as I enter a lovely dream involving Bradley Cooper and a converted loft (don't ask - it made beautiful sense at the time).
  • Refusing to settle in your own bed and then finally nodding off in a diagonal fashion in my comfy setting giving Mummy a generous 3cm to slumber in.
  • Doing a sneaky 4am poo (to add insult to injury) so my newly laundered bed sheets smell like a sewage plant on a sweaty day.
  • After all those shenanigans, deciding to renege on your role as a human wake up call and arising one hour after the time we need to get up resulting in crazy morning chaos.
  • Yelling mummy at the top of your lungs from the other side of the house 106 times. Then when I get there asking me something 'urgent' like how do the telephone wires work.
  • Asking me, in fact, loads of questions I just don't know the answer to. Honestly I really don't know how words go down the telephone line or how mobile phones work (mind is blown thinking about it).
Mummy, mummy, mummy, MUMMY.
How does petrol make a car go?
Man alive - who cares!
  • Taking 40 minutes to eat one Weetabix and three seconds to demolish Star Bursts (before I can steal one).
  • Peeing all over the toilet seat (especially just before Granny arrives).
  • Telling your teacher that mummy always cooks beans on toast for tea. It is just every now and again (ssh).
  • Coming with me to a posh shoe shop where I already feel like a scruff and shouting loudly that your bum is itchy.
  • Picking your nose and eating it as I stand chatting to that cool mum at the school gates.
  • Hiding pasta down the back of the radiator so you don't have to eat it (it will stay there until mummy can be bothered to scrap it off the wall as a reminder of your misdemeanour.
  • Being a general fussy gang of picky eaters. I'll have you know my sausage casserole is yum. And no the sausages don't need to be brown (I think!)
  • Asking mummy if there is a baby in her belly as she is about to go out with the girls (and thinks she looks foxy).
  • Doing a plank impression when you need to go in the car seat/pram.
  • Asking to put 'our programmes' on as soon as I sit down with a brew and Revenge thinking you are all busy doing various mischief somewhere.
  • Needing the toilet as soon as my food arrives in a restaurant. 
Is that meal that has just arrived lovely? Good. 
Can you take me the toilet now.
  • Wanting to play with playdough (it ain't happening here).
  • Pretending every single day (after day) that you have brushed your teeth and me every single day (after day) having to go check that your tooth brush is wet (and nice try running it under the tap - I am now on to that. All the effort it would be quicker to actually brush said teeth).
We have brushed our teeth. Honest we have. 
  • Saying any of the following more than once a day: "can I have a snack?" "Do I have to?" "I'm bored." "What are we doing next?"  "Just what is in your tummy mummy?"
  • Mimicking mummy's voice is just not on. Ever. The end. No don't repeat "ever, the end" like that. Oh I give up.
Please refer to appendix 1-4356 for further sub-clauses of these rules.

Thank you

Your ever-loving Mummy







And then the fun began...

Monday, 5 January 2015

5 reasons why I am glad the festive fun has finished

The decorations have come down (to the heartbroken tears of one little boy); the selection boxes put up high out of reach (to the heartbroken tears of one little girl); the DS3, iPad and Wii are all back on rationed time (to the heartbroken tears of one bigger boy) and the empty bottles of Prosecco have been recycled but not replaced (to the heartbroken tears of one Mummy).

Christmas was aces. On toast. With jiggle bells on.
We all had a blinkin ball. But tomorrow the children are all back in school and it's time to hit the ground running with work. And fitness. And diets. And the 365 resolutions that will hopefully last more than 365 minutes.

Its overrrrrrr!!
Again. For another 10 months (we all know it starts in November as soon as we have washed off the fake blood stains from our clothes). As much as I have enjoyed it there is a big part of me happy to take down the tinsel.

The top 5 things I am most looking forward to are:

1. No more sweating over Christmas lights

We love a Christmas light in our house. We had every surface covered in twinkling lights of every description. Even the lack of plug sockets did not hold us back.  No sirree. Since the advent of the battery-powered fairy light (what an invention) we have had a no holds barred approach to lumination. With approximately 10 battery-powered fairy lights on the go, it presented a daily dilemma. Who is worthy of the battery power? I didn't want to spend billions on batteries so each evening would laboriously be spent putting on the battery lights and turning them back off when the kids were in bed. Except for Christmas eve when I allowed the husband to enjoy the flashing fanfare. It seems the Christmas lights are more attention grabbing than toddlers during Yuletide. In addition to the battery quandary, there was the nightly stand off each evening on who would unplug the rest of the display before bed. Then there was the "have we turned off the Christmas tree lights?" and "will they set the house on fire?" dread every time we stepped outside the front door. Oh the joys!

2. No more keeping the house tidy in case of guests

Did you do that thing? You know were you are relaxing post bacon butty with a open box of Celebrations on your lap when you panicked that someone might just call to visit and catch you in mismatched PJs amid toy Armageddon? Many a moment was ruined by such paranoia. And do you know what? No one turned up when the house was spick and span. Oh no. If anyone did indeed come (not sure who I was expecting) it was just after I had changed a nappy or when I was having a lie in and the husband was in charge downstairs alone (think dens, discarded night wear and undergarments mixed in with the breadcrumbs of a million four slices of toast).


3. No more eating everything you see

Mini hero? Yes please. Peanuts? Go on then. Turkey and cranberry sandwich? Crisps with a selection of dips? Mince pie? Weird beef wellington bites? Why the hell not. Pickled onion? More cake? Roses? Curry in? Curry out? Pizza? Chinese? Fish and chips?  Another roast dinner (with the works)? Ah well bring it on. It's Christmas. As lush as it all was I am slightly over the gluttony now. Yesterday the hubby asked what I wanted for my tea and do you know what I craved? A boiled egg with toast. Better still a bowl of tomato soup. With water.

4. No more being jolly 24 hours a day

Merriment, laughter, mirth and a sprinkle of hee hee and ho ho. It was good while it lasted but I am now a bit fed up with festive cheer. You are not really allowed to moan in December (otherwise Santa won't come) and there is only so much organised frivolity and fun one can take. I've really missed my whine with wine and my bitch with beer. Naturally cantankerous, I now come into my own in the bleak mid winter when everyone is lamenting and filled with woe. Fantastic stuff.


5. No more shopping

My Fridays off will no longer be spent in retail parks or growling at strangers over parking spaces. No more stressing about whether I have spent £50 to get my £7 off in my weekly shop (damn you enticing supermarket vouchers). No more purchasing a daily tub of Celebrations. I don't have to look at another sparkly top for a year and wonder if I'll look fab or like a bejeweled fool. Nor do I have to spend my waking moments cursing Walt Disney for only making two Elsa dresses and one Olaf doll just for sheer sport as if he was bored of raking in millions.

Christmas, I will miss you. 
You did me proud. 
But I'm off to grumble and gripe on the phone to my mate whilst eating my plain eggy soldiers in my filthy house with only one bulb to light my way. Happy days.

Gabe says: "Mum did you get any cream eggs in the shop today?
Only 89 days to go!"




Tuesday, 23 December 2014

The greatest gift of them all

I was distracted the first time a physiotherapist told me that Gabriel may never walk.
He was 10 months old at the time and as floppy as a rag doll.

The distraction was my pre-school daughter who, bored with the appointment, was applying my lipstick to her face. I remember the day was hot as hell and I was wearing a clinging tee-shirt. Her words drifted past me as I simultaneously tried to not lift my arms for fear of a dreaded sweat patch and grab items from his older sibling who was starting to resemble a horror version of a beauty pageant contestant.



It was only when I got home with my babies that I processed her words and grieved.

The following week we had a consultant appointment. Bad news was to become a trend. With a sad smile she informed me that she didn't think "we were going to get away with this" and to prepare ourselves for a "specialist education" for him.

I was livid rather than upset and vowed to walk him into her room at the next appointment.
That didn't happen.

For a time I asked every healthcare specialist we saw (and we saw a lot) whether he would ever walk. I just couldn't get my head wrapped around a life with a child in a wheelchair and all it entailed.
It was like a scab that I kept on picking and the wound just got deeper and deeper.

Mr odd socks


By the time he was referred to wheelchair services a few years later and won a place in a coveted special school I had begun to embrace his fate a lot more. So much so that I was surprised how knocked for six I was when the wheelchair first arrived.

Walking seemed more of a rumble of a promise when he started to bum shuffle and his standing improved. But as he was showing no comprehension of the mechanics of stepping or indeed enough strength in his upper body, it remained just that a vague rumble.

But then last week his school physiotherapist invited me into school.
She said she had something to show me.
Something they had been working on.

And there it was...


video


video


The greatest gift of them all.

Tuesday, 16 December 2014

The Nik Naks Nark

It was just a normal Saturday.
It was just a normal shopping trip.
It was just a normal supermarket shelf.

*Oh sorry this is to be said in a blockbuster action movie trailer voice. You need to go back and start again...*

They thought this would be a food shop just like any other.
They did not know what was about to happen. 
And how it would change their lives forever.

No one saw it coming until it was TOO LATE!

THE NIK NAK NARK

Scene one: Nik Naks for 99p

The hunky husband and his wonderful wife are partaking in a basic boring Sainsbury's shop when the husband stops short in amazement.

Hunky husband: "Nik Naks. Six for 99p. Nice and Spicy ones too. I am amazed."
The husband pulls a face to show he just can't believe it.
Hunky husband: "I just can't believe it. Just what I feel like. Let's put them in the trolley."
They put them in a trolley and smile in mutual happiness.

Scene two: Knocked off the conveyor belt or something more sinister

The scene cuts to the hunky husband and the wonderful wife loading their shopping on the conveyor belt. The Nik Naks are no where to be seen. Cue dramatic music.

Scene three: The unloading

The duo are unloading the shopping at home. The husband pulls a face to show he just can't wait to have a bag of Nik Naks.

Hunky husband: "I just can't wait for these Nik Naks."
He searches through the bags but cannot find the Nik Naks.
Hunky husband: "I cannot find the Nik Naks. They must have fallen off the conveyor belt or something more sinister. NOOOOOOOOOO!"

Scene four: Falling down



We all have them. Our Nik Naks narks. That little something that is quite nothing really but can randomly become a huge thing. The hunky husband in this particular tale stomped off and kicked a plastic bag in the air in frustration and it took him a good ten minutes to calm down and laugh at his behaviour. Now when either of us has a random melt down we mention the words "Nik Nak nark" and it has a soothing, disarming effect. 

So far. 
I can see the words "shove your Nik Naks nark up your bum" getting flung out into the ether eventually. But for now it is working a special sort of magic.

As a woman and a mother I reserve the right to have Nik Nak narks more regularly. Just this week  I have Nik Nak narked at the following:
  • Banging my head on the kitchen cupboard that someone left open
  • The person who had ten parcels in the post office when I was waiting behind them
  • Daughter taking 40 minutes to eat one Wetabix
  • The expenses receipt I was keeping somewhere so safe I can't find it
  • Getting lost on my way to meet a friend AGAIN and being 40 minutes late.
  • Feeling too hot after a hot bath.
Most of us are hardly at the level where we need anger management help from Graham from the Jeremy Kyle Show but boy do we let some small things get to us. The festive season tends to bring out the worst in us. Wrapping pressies through gritted teeth, cursing people as we write Christmas cards, crying as the children change their Santa lists again and pushing grannies out of the way to grab the last £4 Celebrations tub (or is that just me!).

Therefore I have the answer to a stress free, relaxed Christmas.
Get plenty of Nik Naks in.
Simples.

P.S. You know the something sinister mentioned above? Well I might have put the Nik Naks back on the shelf as a joke and then by the time we got to the end of the shop I forgot about my funny joke and didn't retrieve them. Don't tell the husband though or he'll might have another Nik Naks nark. And the world doesn't need that.

Gabe says: "You two are bonkers. Everyone knows Nik Naks taste
almost as bad as the orange mush you force on me!"


Tuesday, 2 December 2014

10 most boring things you will say this Christmas

I've written before about how boring I have become since popping out three little people. The things that my mind now ponders on would send the most insomniac person into a coma.

It is just that there is now so many tedious tasks and chores that must be completed to make it to the end of the week - from remembering to buy toilet roll to thinking about washing out the wheelie bin.

Motherhood has rendered me vapid with a capital V. Unless I have had three glasses of wine then I am basically annoying awesome. Oh yes I am. Anyone will tell you!

Christmas seems to bring out the worst in me. I am a one women juggernaut of commonplace conversation. My chat is more ho hum than ho ho ho!

10 most boring things I will say this Christmas
  1. Are you all set for Christmas? (to everyone I meet; said from November 10th)
  2. Where are you having your Christmas dinner? (to everyone I meet; said from November 10th)
  3. Do you have any Elsa dresses? (to everyone I meet; said from November 10th)
  4. I need snowman kitchen roll.
  5. I am going to write my Christmas cards tonight.
  6. What is so and so's baby boy called? You know the one they had five years ago. Begins with a P or an S? Or was it a girl? (to the husband whilst writing Christmas cards)
  7. I'm off to buy a sparkly top.
  8. If I go to (insert supermarket) and spend £390 then I get £3 off. 
  9. Do you want to see what I've brought? (to the husband every day for everything purchased from November 10th; even a box of Twiglets)
  10. What is this reindeer food that everyone is making?


10 most boring things I will think this Christmas
  1. Will I look like a tramp if I put second class stamps on the Christmas cards?
  2. Will I look like a tramp if I don't send Christmas cards?
  3. Where did I put the decorations?
  4. Oh yum peanuts.
  5. Oh yum Mini Heros.
  6. Oh yack dates.
  7. Why don't they just make some more bloody Elsa dresses?
  8. If I don't go the shop at 5.30am all the turkeys will be sold out (like the Elsa dresses).
  9. Should I buy this sparkly top that looks so very like the sparkly top I got last year and the one the year before?
  10. How the blinkin' heck do you make reindeer food?

10 most boring things I will do this Christmas
  1. Spend 156 hours looking for a Christmas present for Granny before buying her another scarf
  2. Hoover and mop the floors for Christmas 23 times
  3. Tidy up for Christmas 38 times
  4. Go to 67,890 shops looking for an Elsa dress
  5. Wrap presents early and then forget what they all are and have to unwrap and start again on Christmas Eve
  6. Buy a Radio Times and highlight all the things I want to watch
  7. Cry at Christmas adverts. Still! After the 90th viewing!
  8. Research turkeys on the Internet
  9. Buy a Celebrations tub for a mate, eat it during X factor final, buy another one, eat it. Repeat. Repeat.
  10. Google reindeer food

Then there are the awesome things I will say this Christmas...
  1. Who wants another Baileys?
  2. Oh is that Sara Lee Double Chocolate gateau?
  3. I've just finished work for two weeks
  4. Who likes my Christmas pyjamas and socks?
  5. Another Baileys anyone?
  6. No mummy is not spunk drunk. 
  7. Darling, yes it is okay to change your mind about an Elsa dress two days before Christmas. Santa won't mind.
  8. Of course I'll take that Crunchie off your hands. They only put them in the selection boxes for the mummys.
  9. More Baileys? 
  10. See you in the pub in half an hour. And YES I am wearing a sparkly top.
Gabe says: "It is the season to be jolly mundane"


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:






Therapy.
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.

BIBIC

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.

Brainwave

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?

Sleep 

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.

Feeding

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.
x




Post Comment Love