Friday, 18 April 2014

Word of the week: Hope


I don't look to the future very much anymore. I barely plan next week let alone next year. I can drive friends insane with my vagueness when meet ups or other engagements are attempted to be made. The family calendar is only flicked through if it needs to be.

Gabriel has taught us all to live in the here and now. And worry about tomorrow, well tomorrow.

It has to be that way when you have someone like this dude in your life - because he decided from day one that rulebooks were for losers. Conventional guidelines and typical milestones are just not his bag.

With no diagnosis, Gabe's future is wide open (or not) and everything can be achieved (or lost).

It is not worth dwelling on as who knows where any of us is headed. Instead we celebrate every little moment, every golden nugget of normal.

But in the past few weeks, something has been bubbling inside - gently stirring and energising us as a family.

There is hope.....

It started with some shadows of improvement on his growth hormone treatment - extra strength in his legs, more alertness, fresh motivation to move, all sprinkled with added defiance and cheekiness (but hey ho!). Then school commented on how much more chatting he is doing. Trying to converse with his baby babble and trying out new words. Every day working hard to make himself heard - the child who just sat passively amongst us is very much the centre of attention - making us laugh with his antics and testing our patience with his temper toddler tantrums.

Gabe says: "Now I am big and strong I can duff you up!"

Then we took him to Brainwave this week. This is a neuroplasticity programme that we fundraised for because it is expensive but worth every penny it seems. For two days you have an experienced physiotherapist and play/cognitive expert assess your child and come up with a holistic programme to gently nudge them forward.

To be honest it was just wonderful to have the two days to play with Gabe. Our other two children were still at school and then at a sleepover at their cousins' house. They were very well taken care of so it was guilt-free golden time with the youngest.

Everything he did in those two days was scrutinised by the experts, debated and then fed back to us. It turns out the complicated gorgeous boy is not so complicated afterall.

They had seen his kind before. These delayed divas who are in no rush - thank you missus.

Things were explained that kind of made sense if only we had thought about it before. Missing vital development steps when he was a baby, either because of his low muscle tone or illness, has left him plagued with sensory issues - from forgetting his hands belong to him to not putting anything in his mouth. All of which can be overcome with the right intervention.

In the same way, his body forgot how to instinctively get to the next step. As his peers got busy with their blink and you'll miss it development, he was spending quality time playing "guess my ailments" with doctors and nurses.

We have seen a lot of therapists in the past three years - some better than others - but mostly they like telling you what's wrong and pursing their lips when we tentatively ask about the future. Brainwave is different because they focus on the positive and are not afraid to look ahead.

"There is no reason not to expect normal movement one day.
But you are going to have to show him how."

These are words we thought we would never hear. That is not to say that we are being naive - of course it is obvious that there is some sort of learning or motor planning issue amid it all - but the potential to move normally at some point is a gift to cherish.

It is time for us to get busy with this new programme. Time for us to knuckle down and work hard. We need to coax him to the next steps. Then the steps after that. And after that again. No matter how long the road is. No matter how tired we get.

The journey back from Brainwave


Because right now it feels like we can do this.
Right now we are filled with hope.





The Reading Residence

Tuesday, 8 April 2014

Mummy amnesia

The arrival of my brand new son seven years ago was a shock to the system let me tell you. I was woefully mentally unprepared. My brother was getting married around my due date and our best friends two weeks later. I had brought two little smart outfits for both a girl and a boy baby and a wrap around affair for myself. I didn't care what people said. I was going to those weddings. No matter what. All the bases were covered. How hard could it be. Just you watch me. So there.

Yeah, yeah, you know how this goes. I didn't go to either of those weddings.

I didn't go anywhere for weeks. Towards the end of the husband's paternity leave we decided we must venture out with this child before he was able to drive his own car out of there. It took us an hour to pack a bag, make up milk, put the baby in the car seat, take a wailing baby out of car seat, put baby in car seat, take wailing baby out of car seat, feed baby, change baby, put wailing baby in car seat before we left the house. We headed up to the retail park at the top of our road congratulating ourselves on our awesomeness. You would think we'd mounted Everest.

Smugly we sat down for a brew in M&S with a trolley full of food and essentials beside us. We are so fab I thought as I looked for my purse. We are so stupendous the husband thought as he looked for his wallet. We are so screwed we both thought counting out pennies from pockets before disowning the trolley and heading back to the car in shame.

It didn't end there. This failing to remember stuff has just gotten worse over the years. I can't be alone in this bypassing of vital bits of information. This random forgetfulness. Not sure what I am talking about? I mean stuff like this:
  • Turning up to a doctor's appointment a week late
  • Going to the supermarket, spending enough to justify a remortgage but not buying any actual meals
  • Putting a dirty nappy bag in the fridge instead of the bin
  • Forgetting about the pasta bubbling away until the smoke alarm goes off
  • Spending ten minutes looking for your half eaten chocolate bar before realising you actually ate it
  • Calling all your children by the wrong names
  • Asking someone to mind your pram while you have a word with the teacher then leaving the school playground without the baby
  • Getting weekly texts from school asking for dinner money
  • Ringing your lost phone and hearing it in your pocket
  • Calling your mate for a chinwag and dialling your mum by mistake
  • Promising to pick up a neighbour's children from school and having to run back up the road like Lightening McQueen when you pass their house empty handed
  • Only remembering you are on a diet after you've stuffed two pieces of shortbread in your gob
  • "Sorry it's late" appearing in every birthday card you send
  • "Sorry I'm late" becoming your default greeting to friends
  • Friends wising up and telling you they are meeting up half an hour before they are actually meeting up
  • Feeding the baby, getting distracted and then going back twenty minutes later to a room splattered in orange mush like the lift scene in The Shining
  • Returning library books a year later
  • Leaving your coffee on the car roof as you strap in the baby and then driving off
  • Knowing you are arguing a good point with your husband but forgetting what it is. Damn
  • Pouring orange juice on the cereal
  • Misplacing that piece of paper you cleverly (not cleverly) listed all your passwords on
  • Discovering again how long play dough takes to clean up after the children have played with it for 3.4 minutes
  • Only remembering it is your turn to drive home from the family party after you have finished your wine (oh well in for a penny..)
  • Driving on auto pilot to the supermarket when you wanted to visit a friend who lives in the opposite direction
  • Starting and not finishing 9 conversations with your mate at play group
  • Forgetting what a poo in a nappy smells like when the husband is about the house.

There was supposed to be more on this list but erm.. I've forgotten to remember some of the things I reminded myself to remember about the things I often forget.

Gabe says: "Don't worry guys. I know it's getting dark but it's not been that long.
It has only been an hour. She's been longer than that before looking for the camera."


Brilliant blog posts on HonestMum.com


Sunday, 6 April 2014

Love letters to my heart

I think if I was to become famous I'd be one of those people that forget the loyal fans that get them there.
You know the type who nearly run over their followers as they hang around the stage door hoping for a glance.
I'd sweep past not daring to look at the lowly enthusiasts with my entourage and refuse to sign autographs as it involves touching ordinary people's pens. Gag!

The details of my fame are a moot point. It will probably involve either an X-factor or Strictly Come Dancing win seeing as I am fantastic at both singing and dancing. I am afterall a living example of the hiding your light under a bushel parable.

*sorry excuse me a second - just got to push this sniggering husband out of the room as he reads over my shoulder. He wouldn't know talent if it bit him on the bum. Humpf...*

Anyway soz I digress. The reason why I think I would be an insensitive superstar involves the husband man marching into the house the other morning holding aloft a pile of paper.

What are you doing?

Of course, a swarm of secrets swept through my brain. He's found my stash of shortbread when I'm supposed to be on a diet. Or worse he's found the credit card bill. Yikes!! I knew I should have stayed out of French Connection.

How can you?

What? What? Good god man spit it out. I didn't mean to wash your suit trousers the other day. It was an accident. I'm not even sure how they ended up in the dryer.

You can't recycle these!

Er.. phew. Is that all!



 
 

You see I get a lot of these. My two oldest children are always drawing me pictures or handing me messages. It is gorgeous and cute. And my husband (just this once) is right. These are precious and slivers of magical memories that shouldn't be sent off to be remade into toilet roll.

I now have a special box where I place all these little love notes and letters because in the blink of eyelid they will be no more. I have a feeling that I will open this box time and time again in the teenage years. I'm guessing I'll long for more of these prized memos as the only scripts of note will come via smart phone and involve lifts to parties and brief mentions of where they are headed to that day.

Then, I'll look back and remember a time when their love was so big and so consuming they wanted to tell me ten times a day.






Thursday, 3 April 2014

The wheelchair

Last month we picked up a wheelchair for our little boy. At 19kg it is like lifting a heavy suitcase, but one that keeps bursting open on you. With a house full of equipment and disability living aids, you'd think I'd just welcome this into the jam-packed fold. But no, I haven't.

You see I can't get to grips with this new addition. It feels massive (it is literally huge) and life changing. Why? It is just a chair. A specialised pram no less.

I've surprised myself that I feel this way. It is not denial. That ship has long sailed.
It's just that it feels a lot like admitting defeat and giving up.
This feels final. Like another door slammed shut.

Wheelchair. Wheelchair. Wheelchair.
It makes me sad.
And the reason is simple.
I don't want him to be in a wheelchair.
That is all.

This is one of the hardest posts I've written for a long time on this journey. I've started it so many times and shut it down quickly balking at the thought of penning the words as they sound spoilt, unfeeling and unconsidered. I know my initial thoughts are kneejerk and I will feel differently in a very short space of time.



The wheelchair.
You speak a thousand unspoken words about my boy that I never wanted said.

The wheelchair.
I see it as a badge. A banner over your head. Broken. Not quite right. Damaged.
I didn't want this for you.
I had hoped and prayed that it wouldn't be and longed for the future to be different.
I had wished we'd win the race and you'd get you on your feet long before this was your fate.

The wheelchair.
Despite all the hard work and physical therapy, the time has arrived.
Despite the months of waiting and long assessments, I am not ready for this.
Despite knowing it will protect your spine and your hips, it fills me with dread.
Despite not normally caring, I don't want you (us) standing out amongst the crowd.

The wheelchair.
My family and friends have been kind and sympathetic, sensing the internal struggle.
My newest pals in the same boat assure me this initial feeling will pass and I'll embrace this new stage.

The wheelchair.
It looks like for now you are here to stay.
It has surprised me how this one thing has left me slightly bitter and dejected.

The wheelchair.
Who would have thought we'd need our world to be access all areas.
Who knew this is where we were all headed.
Who can predict, who can say that just because a wheelchair is in our world today, that our hope has gone astray.
Who knows what lies ahead. We are not giving up. Not yet. No way.




Gabe says: "Relax mum. This is the life fandango snoozing in the sun.
I've got the best wheels in town."


*A few wheelchair users have stumbled across this post like Andrew Pulrang who writes the marvellous Disability Thinking blog. My intention in posting this was not to add to the sea of negative literature surrounding wheelchairs, but to highlight the journey of caring for a child who uses a wheelchair. A wheelchair was not what I hoped for when I envisioned Gabe's future but I know I will feel differently next week, next month and next year. When Gabriel has his own voice I am sure he will share his own thoughts on the matter. I thank people like Andrew for trying to change the landscape for disabled people and championing ableism. People like him will make the world a better place for people like my child.






Monday, 31 March 2014

Shamming under the spotlight

It was one of those moments.
You know the one.
Where you've had a huge quarrel with your man and you are winning the sulk stand-off (high five). Then you bump into someone you know and have to pretend you are hunky-dory with the person who has made you a hunk-of-fury.

We were in Pizza Hut at the weekend and I'm not even sure if the long-suffering husband even knew I was in a huff. But I was. Big time.
I pretended that the baby was getting on my nerves grabbing stuff off the table and whining, but really the villain of the piece was my oblivious spouse.

The crime was terrible. Worthy of mediation in the law courts. Nine little words.
What is the orange stuff all around your gob!!
In a nod to the sunny weather, I thought I'd alleviate the coffin look with a smidge of fake tan.
I'd pranced around for hours thinking I looked all golden and gorgeous. When in actual fact, according to the man I married, I'd just looked like I'd been a bit cavalier with the Wotsits.

My vanity was dented but I couldn't admit that. Nor could I get the Nutella effect off my face. So I did what any grown woman would do - I took my sh*t out on everyone else. Hey, if I was going down in a blaze of conceited misery, we all were.



Anyhows, there I was in all my tangerine glory tucking into my grub and growling at my family when another group sat beside us.
It wasn't just any Tom, Dick or Harry. Oh no!
It was someone from the husband's work.
Someone important from the husband's work.
Well that was the end of my fun. We'd now have to pretend to be normal.
So reluctantly rolling the McClaren hood back up off the baby (I'd been practising the out-of-sight out-of-mind method of drowning out his hollering), I plastered a big smile on my face.

Channelling my inner Stepfordness:
I chatted chitty chat to the man.
I coloured in a house with the girl.
I did a round of noughts and crosses with the boy.
I did some couchy coos with the baby.

And do you know what a strange thing happened. The prissy fit lifted and I started to enjoy myself. Soon it wasn't an act to impress. We were having fun. Who knew!

I had an epiphany. All I needed to have a perfect life and a perfect time was to be under someone's scrutiny. I just needed people to be sat in judgement on my incompetent, gauche, brattish ways, and then I'd have to up my game. It was so simple. So obvious. Why hadn't I thought of it before?

I needed to be the star of a documentary.

It was time to ring the BBC. This was going to be life-changing. This would mean:

My house would be immaculate at all times

If the film crews were in I'd have to keep on top of the blinkin' housework. Cushions would appear on beds (who cares if it takes you three hours to remove them before gong to sleep; just don't sleep wimp). The grot from behind the bathroom sink and the top of the fridge would all be eliminated. I'd finally strip and repaint the bedroom doors. There would be no cereal permanently dotted around the floors and toys would be artfully arranged in a manner that would repel small children. And obviously I'd need a little cleaning crew on expenses to help.

I would be immaculate at all times

There is no way I would be a fatty on the telly. I'd have to get in shape. It would also be imperative to rob the husband's credit card and kit myself out in White Company clothes (instead of three-year old Top Shop) and be all demure and eyebrow plucked. I'd prim and preen about the place flashing a pristine set of pins. My hair would be treated to a triple bill of actually being washed, dried and brushed. And I'd never wear yesterday's clothes (not that I ever do this anyway, honest).

We would have interesting witty debates

If people were watching, the husband and I would have to swot up on fascinating facts and be seen to be up to date with current affairs not just Kardashian craic. I'd be lounging around in the evening reading The Canterbury Tales instead of BlogLovin on my phone. No more banter about which are the best oven chips, instead we'll examine the economic consequence of the Network Rail investment and the merits of Babcock and Fluor's nuclear deal.

We would be super parents

I would be a therapy monster mum. I'd be flashing waxed underpits as I hot-housed the delayed one. With one hand I would help him simulate stepping and the other would be waving Makaton flash cards in his face. By jove, he'd be walking and talking by season two. The eldest ones wouldn't have a hope or a prayer. Where once it was CBBC and a biscuit post-school; Mandarin Chinese, oboe and water painting lessons would now await.
 
For sure, a TV company is going to want to commission a series on my life. Not the super noodling, ignoring the children while having a 5-day deadlock about opening the bedroom curtains one. No, the splendid on loop, round the clock impeccable and sublime one.

I am a utter genius. Must dash. Got to go and get the Yellow Pages out and look up documentary crews to make you look wonderful.

Adios obscure ones. Au Revoir unknowns. Addio non-famous folk. Auf Wiedersehen non-documented peeps.

See it's working already. I'll be speaking in tongues soon.


P.S. Anyone got any mates in the telly, give us a text.

    Gabe says: "So let me get this right. You won't pull this hood right over my face
    if I agree to dress like Lord Fauntleroy at all times."


Redpeffer The Theme Game

Friday, 28 March 2014

He ain't heavy

Walking to school the other day I was aware of a neighbour's little boy toddlering along holding the hand of his big sister.

Oh look he is walking now, I thought. My brain then drifted off thinking about something else. Something mundane like my imminent tea and toast post-school run probably.

But then a little voice caught me unawares. It was my seven year old son.

Mummy it makes me sad when I see babies much younger than Gabriel walking and he is three and still can't walk
I wish he could walk too Mummy!

This made me look again at the toddler in front of me who a season before was confined to his pram. I knew that behind my swept aside "Oh look he is walking now" were 65 other thoughts and emotions. Ones that I don't allow myself to dwell on anymore.

But when you are seven there are no little storage boxes in your brain where you scoop up the unpleasant feelings and stock them for another day. You think it, you tend to say it.

It is sad that Gabriel is three and cannot yet walk.
It is sad seeing babes in arms, grow and develop and overtake him in the space of a few short months.
It is sad that he is not running in the park.
It is sad that those floppy little legs, getting stronger every day, are still too floppy to bear weight for any great length of time.
It is sad.
And it is okay for his brother to feel this sadness sometimes.

But it is what it is.
And they get that.
Both of my older children do.

Their acceptance of the situation is amazing given their age.
Their understanding of Gabe's condition is considerable garnered through their own questioning.
And their positivity for him and his life ahead is inspiring.



I am very proud of all three of my children.
Especially the older two.
Not only do they see beyond the things that Gabriel can't do, but they champion and celebrate his every inch-stone, no matter how small.
They are the first to coming running when he is getting frustrated by a needed toy just outside his grasp.
Making him giggle is a game they all delight to play.
And they include him in everything that they do, they always find a way.

His challenges to them have become commonplace.
To them, he is not a boy, born slightly different to the rest.
But Gabe, their little brother.


 
 
 
Big brother says: "Everything is going to be just fine because we three have each other."
 




Monday, 24 March 2014

Mother-fudging Mondays

I hate Mondays. They show me up for the shambolic shyster that I am. You might see a mini household walking serenely to school, chatting amicably about the day ahead. Kids well turned out, water bottles to hand and book bags all organised. But let me shatter the illusion as it took blood, tears, swears and tantrums to get to this point. Don't look too close at the slightly demented look in the mother's eye.

This is how the madness that is Monday pans out in our house:

  • Get up half an hour late because the children who have been jumping on my head at 5.30am all weekend decide today is a good day for a lie in.
  • Jump out of bed in a panic. Realise that was a mistake as back goes into spasm after being squashed in a 10mm space all night while the Gabester lounges luxuriously across the centre of the bed.
  • Look in the mirror and recoil in horror. That time-saving exercise of having a Sunday night bath and washing your hair has backfired. Going to sleep with it wet as the hairdryer would have woke the beast (aka the baby) has left you sporting a 80s flick, greasy-looking, back-combed combo.
  • Sigh loudly when you realise you didn't organise the uniforms and instead ate crisps whilst watching Mr Selfridge.
  • Realise that the shirts are still wet in the washing machine.
  • Attempt to iron shirts dry. Crank up the heating full blast so you can put them on the radiators. Emptying the dryer at this time of the morning is a bridge too far.
  • Remember that there is no milk or juice. That "big" shop over the weekend just didn't materialise. Toast some stale bread and plonk tired children in front of the TV.
  • Have quick shower and dry yourself. Only realise it was the towel that the baby weed on after you've finished.
  • Attempt to flatten 80s flick hair. It is like cement. Give up and tie hair back.
  • Start to put some make up on so you don't remain one pale shade off dead.
  • Harassed husband shouts he is leaving for work and mentions how delicious his rice cake was.
  • See his sarcasm and raise it. Yell 'have a nice day dear' through gritted teeth.
  • Change baby. Bring him downstairs for breakfast. Baby does a poo.
  • Change baby again.
  • Harassed husband comes home after driving half way to work after realising he has taken both car keys.
  • Start to feed the baby. Play 127 games of aeroplanes, mime 230 beeping trains, do 64 silly dances and shout 38 swear words. Baby still refuses to open mouth.
  • Give up and sit down to give him a bottle of milk.
  • Get too engrossed in Barbie and the Dreamhouse and the glitter shortage.
  • Check the time. Yell at children to just leave the untouched toast and put uniforms on. Ignore complaints of damp garments.
  • Mentally slap yourself for not taking your lie in yesterday instead of reading twitter with one eye open in a warm bed.
  • Get school bags out of car where they have lived all weekend.
  • Spend 6 hours signing homework dairies, permission slips, and piling up important school letters to be dealt with (forgotten about) later.
  • Discover baby has a Sports Relief day at nursery and needs to wear sports gear.
  • Change the baby.
  • Yell at children to put shoes on.
  • Yell at children to eat toast.
  • Yell at daughter for putting on tiny ankle socks instead of tights. Daughter ignores you.
  • Yell at son for not changing his underpants. Son ignores you.
  • Yell at children to put shoes on. They yell back that they can't find them.
  • Spend 2 hours looking for school shoes. Find them in suitcase in wardrobe from when children played holidays on Saturday.
  • Feel bad about yelling and give them Hobnobs.
  • Go to leave. Realise daughter has put 9 clips randomly in her hair but not brushed it.
  • Spend 3 hours looking for a hair bobble.
  • Go to leave. Catch a glimpse of self in hall mirror. Realise you forgot to put makeup on other side of your face.
  • Go to lock door. Realise harassed husband has also taken your house key to work. Say nice things about husband in your head. Leave door on snip and pray the burglars are still buying Mars bars in the corner shop.
  • Trot tranquilly to school. Making sure you only show one side of your face at any given time. Saving the prettier version for the more glam mums.
  • Drop baby off at nursery.
  • Race home. Check all rooms for intruders.
  • Open all the windows as the house is hotter than the Sahara desert.
  • Pause.
  • Stop.
  • Listen.
  • Realise that the house is empty.
  • Realise that the house is quiet
  • Do a happy dance.
  • Realise that you love Mondays.

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