Wednesday, 30 July 2014

When your pregnancy blows up in your face

Have you had it?
The moment in a pregnancy scan when the sonographer stops smiling?
The polite banter ends.
Have you seen the blink and you'll miss it "oh no" flash across her face?
Have you?

Did you feel it?
The cold creeping fingers of fear as you realise this is not going to be a good day?
The rising dread.
Did you feel your insides turn to mush as you realised your life was about to change?
Did you?

Were you dazed?
The point that she put down the probe and caught your eye?
The words forming on her lips
Were you silently praying and beginning to beg to all manner of gods in your head?
Were you?

Could you breathe?
The words 'a problem' and 'referral to fetal medicine team' making you gasp.
The fear crushing down heavy.
Could you take in all that it meant when she mentioned chromosomal disorders?
Could you?

Should you run?
The thought probably took over your brain stopping any pain at least for now.
The urge to flee.
Should you get up and walk away and pretend that none of this ever happened?
Should you?

Should you? Could you? Do you?

In March 2010 my pregnancy blow up in my face. My 12-week scan showed a high nuchal fold (fluid at the back of the baby's neck) and therefore a high risk of a chromosomal problem.

I didn't get told that I had lost my baby in that scan. I couldn't begin to imagine that pain.
But to my shame there were flashes over the next few days that I wished I had.

You see I knew immediately what this could mean. Someone close to me had had similar news six months earlier and was facing giving imminent birth to a child that was not expected to survive. You can read more on this story here. She is an amazingly strong woman (who I will admire to the day I die) that gave her child - created so fragile - a chance.

I was not that woman.
I was not that strong.

The urge to turn back the clock. To have not put myself in this situation was immense.  We had to wait two whole days for the fetal medicine team to see us. 48 hours is a long time to think. To plan. To dwell. To rage. To self protect. To begin to distance.

I didn't have to do this. I could make it all just go away. Go far away.
You shouldn't still have to play when someone had changed the rules.
Should you?

The fetal medicine team could tell us no more (there were no more scan markers) and the only way to know for certain if we were facing life with a child that would have a disability would be to have a CVS test. Would you like one, they asked? You can have it now and know the results in a few days. Then you could plan, they said.

Yes, I whispered. Yes, my brain shouted. Yes, the future me with the life mapped out hollered.
Let's know for certain. Let's make a plan. Yes.
Please yes.
The "wait a minute" of my heart nestled so tightly beside my baby was not allowed a voice.

But my husband was.

If we have this CVS, he asked quietly, is there a risk to the baby?
There is, they said. Two in a 100 woman experience a miscarriage due to CVS. Two in a 100 babies, potentially normal babies, will die.

Suddenly my heart's voice was getting stronger - urging me to stop and think. The team sensing our new hesitation told us to go for a coffee and have a talk.

Looking back now, a twenty minute coffee break is not a long time for a decision such as this. But for us it allowed us to stand back and look at the facts:

  • Was it good news that there were no new markers on the scan?
  • Could we therefore rule out the more serious chromosomal problems?
  • If we were told today that our baby had Down's syndrome, would we continue with the pregnancy?
  • Did we want to risk our baby's life to know something that wouldn't make a difference to our course of action?
  • Could we be brave?
We answered mostly 'yes' (I've always been a sucker for a pop quiz) and decided that was enough to decline further testing for now.

When your pregnancy blows up in your face, the need for certainty in a situation so uncertain is overwhelming. You think 'knowing' will help. You need to find some control when your life is spinning so seemingly out of control.

With the benefit of a three-year hindsight and a once very ill boy getting stronger by the day, what did I learn? Perhaps this:
  • No one to this day can tell me whether the nuchal fold size had anything to do with Gabe's eventual condition. Perhaps it was fluid from his hole in his heart? Maybe not? I know lots of women with the same nuchal fold reading that went on to have normal babies. I know loads of women who had normal nuchal fold readings that had children with a disability.
  • The strange thing about our situation is that Gabe's unknown genetic condition would not have been picked up by a CVS test as it can't even be picked up on an in-depth genetic array. It is so rare that testing for it is only in trial form. We would have thought we were getting a reprieve and we weren't.
  • Even though we got six months to ponder on life with a disabled child we were still not ready. It still took us by surprise.
  • This normal versus disability thing is shoved down your throat at a prenatal stage in these stressful circumstances. What you are never told is that for every condition - genetic or otherwise - there is such a vast spectrum and you are never going to know anything for certain in utero. There is no black or white with any child. They don't come with a warranty agreement.
  • I have known children born with the worse odds defy all the doctor's predictions and make their parents' hearts soar on a regular basis.
  • For every bad day there are ten amazing ones and a hundred your bog-standard 'the world's not falling in' and 'hey what shall we have for dinner today' average.
And finally if I had know then that the thing that I feared was just this lovely little boy called Gabe I'd have laughed. If I had know my foetus with the chromosomal disorder that made me weep was this boy who giggles in mirrors and now bum shuffles to hidey-hole places then I would have done a little dance.

Gabe says: "I am aces, I really am. I could look at myself all day!"

"Yep, still aces"

"Still here looking beyond aces"

"In fact I am the bee's knees"

"Oh and I make a lovely spag bol."

Watch me go!

Post Comment Love

Thursday, 24 July 2014

How to have a really exciting life

I think in a past life I might have been a Grand Prix rally driver or a freestyle cliff diver. Deep down inside that little rebel thrill-seeking gene still exists. I might not be tight rope walking in the Himalayas in my present existence, but boy do I like to find things to keep me living on the edge.

I seem to just do (or not do) things that make my life as stressful and as complicated as possible. Just for fun like.

For example:

1. Knowing for over a year the date that you are going on holiday yet only applying for the children's passports a few months before just so you can have the little drama of them still not arriving a week before the holiday.

No one really wants to go on holiday, right! It's all about the brochure. Sob!

2. Having a rubbish phone with no Sat Nav and only having a vague idea where you are going so you have to pull over three times and ask for directions like an 18th Century person meaning you turn up 40 minutes late for your rendezvous.

3. Promptly forgetting the directions as soon as you start driving again.

4. Adding in a wailing baby for laughs

5. Adding in a wailing baby with a big fat smelly poo!

6. Making sure it is for something important like a hospital appointment.

7. One you have been late for BEFORE.

8. Thinking you have all day to tidy up and cook for your friends coming for dinner then rushing around like a lunatic throwing a thousand things into your bedroom and praying no one has the urge to lift up a sofa cushion. You can do it! Just that wee at the back of the toilet to wipe up before the door bell rings! There is no time to wash your hair - just wear a hat. All is good.

Helloo. Come on in. Dinner will be served after I have glugged half a bottle of wine

9. Saying yes to more than one event without checking date clashes and then not having the bottle to cancel anything and therefore hoping the universe will sort it all out for you. Which it rarely does. Cause it thinks you are a disorganised idiot!

10. Buying sandals with two straps to buckle up on each - gets really, really thrilling when you are in a big rush!

11. Getting the giggles in church when the children's headteacher is in the next pew because the baby has trumped on your lap and is also giggling.

12. Deciding you just have to put on a wash, do the dishes, make the beds and send four emails for work before the school run meaning the children have to jog to school (hell bells - it's good for them).

13. Snapping at a random person on a stressed out day - the one that will never ever EVA forgive you EVA (and will shoot you death glares for six years afterwards)

14. Having a washing up bowl with a hole in it so you have a time limit on how long it takes you to wash the dishes before the water washes away (okay - I am also only person to not own a dish washer - see point 15)

15. Buy a house that needs "doing up" and then have three children in quick succession so you would rather live in 1970s shabby chic then face weeks with no kitchen. Making sure no knifes fall out of the knackered cutlery drawer on to the baby's head is fun yeah!

16. Finally returning a call to a dear friend after you have promised to call her back in a quiet moment (then never having a quiet moment) and also forgetting her text messages three seconds after reading them. It could go either way - pledge drinks early in the call.

17. Being too slow to get down the stairs on a Saturday to retrieve the credit card bill from your intrigued husband (you might need to use womanly tactics to distract).

18. Opting to cook a roast dinner on a hot Thursday like it is a really good idea.

Gabe says: "You slave for hours on a roast dinner, spend ages mashing it up and
I'll just throw it around the room. Deal?"

19. Deciding to write a blog post about stuff instead of doing the 755 stuff you actually need to do.

20. Yeah and so I am ending on 19 cause that's how I roll - edgy and all that! Watch out Kate Moss!

Post Comment Love

Wednesday, 23 July 2014

Wicked Wednesdays: where do all the crap photos go?

The lovely Emma from Brummymummyof2 has started a new blogger linky to be the home of all your rubbish and embarrassing pictures - the ones that don't make your Instagram feed. I think I am only person in the Western World to not have an Instagram account (I just can't seem to download the fugger) and if I did I don't think anyone would be rushing to view my not very snappy snaps.

When I heard she was doing this link up I went through my phone and selected no fewer than 24 pictures from just this month that would be eligible.

Anyone know any good photography courses?

Gabe says: "We are in the middle of a heatwave for the love of all that is good and holy"

Couldn't resist another - took me ages to style this one!!

To add your pictures click on the button below. I dare you!


Wednesday, 9 July 2014

The very angry foot (that stamps on caterpillars)

In the light of the moon an angry foot lay on a bed.

One Sunday morning the warm sun came up 
and – pop!- out of the bed came the tiny big
and very angry foot.
It started to walk around its home.

On Monday it stood on one broken book.
And it was still angry.

On Tuesday it stood on two Barbies in a car. 
And it was still angry.

On Wednesday it stood on three half built Lego bits.
And it was still angry.

On Thursday it stood on four coloured bricks. 
And it was still angry.

On Friday it stood on five different discarded shoes.
And it was still angry.

On Saturday it stood on one baby, one sensory ball, one set of bells, one pushed over baby stage (with mirror) 

One Pritstick, one dirty nappy, one bath toy and one charger.

That night it had footache! 

The next day was Sunday again. The foot got a binbag and threw in everything left discarded on the floor and after that it felt much better.

Now it didn't feel like a foot any more - and it wasn´t a foot any more. It was a big, fat swollen sore foot!

It wrapped a bandage, like a cocoon, around itself. It stayed on for more than two weeks. Then it placed all the bin-bagged items and more besides on Ebay and made a small fortune. 

Then it made a hole in the cocoon bandage, pushed its way out

into some designer beautiful shoes.

@Sophia Webster 2014 Butterfly Shoes. Expensive like.

Post Comment Love

Tuesday, 1 July 2014

Maintaining your mental health when your life isn't mainstream

In 2001 an unimaginable event happened. My father was murdered. The feelings of raw anguish, sadness and anger were at times all consuming, but they lessened over time and are more like a dull ache today interspersed with random waves of loss. What took much longer to deal with and what surprised me the most in its intensity was the fear.

I was frightened.

I was frightened a lot of the time.
Scared to be alone. Scared to be in a raucous crowd. Scared to talk and think about it. Scared to not talk and think about it. Scared to get up each day and face not just a world where my dad didn't exist anymore, but one where things like that could happen.

The rug had been pulled out from under me.  It was a massive thing. Too big sometimes for my own head. I was either going to sink or I needed to find a way to swim. In our own different ways my family learnt to swim and keep on swimming.

Years later, although a different set of circumstances, I am in a sink or swim situation again. But there is one brutal difference. This time around there are many more things conspiring to drown us.

I use my dad's death as a comparison to highlight just how arduous the battleground of raising a child with special needs can be. I'm quite adept now at swimming and although some days I am just treading water, I am mostly making my way towards dry land. What breaks my heart is that all around me heaps of my SEN sisters (and brothers) are sinking.

Sinking fast.

And they don't need to.

It is no mystery that depression is rife among special needs parents. According to a report by the National Family Caregivers Association between 40-70% of family caregivers show clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression. It attributes the feelings of "struggling to make sense of a foreign, chaotic and often lonely world" as a source of the depressive symptoms.

When the causes of stress in special needs parenting were examined in a study in the Journal of Pediatric Psychology, high on the list were doctor or therapy appointments, medical treatments, hospitalisations, school issues, integrating the child's needs into the family routine, watching their child in pain, worrying about the child's vulnerability and explaining the health problems to those outside the family.

The researchers also cited that this stress could be intervened upon with supportive measures. 

This study made no mention of sleep. Sleep is often scant when a child has additional needs due to a mixture of medical, behavioural and psychological reasons. Studies have shown that even partial sleep deprivation has a significant effect on mood. University of Pennsylvania researchers found that subjects who were limited to only 4.5 hours of sleep a night for one week reported feeling more stressed, angry, sad, and mentally exhausted.

When the subjects resumed normal sleep, they reported a dramatic improvement in mood.

Antidepressants are too often handed out as a "cure all". Yet writing a prescription is not enough. It is like sticking a plaster on a gunshot wound. Special needs parents want to be able to manage, they want to be able to cope, they want to be empowered to do this.

They want to swim not sink.

Alas too often the system fails to buoy us up and instead conspires to add some concrete boots into the mix.

Why? Cost issues? The belief that we are looking to swindle the state out of vital pennies from the central pot? That there is only so much to go around and these children are getting more than their fair share?

Carers UK says that people providing high levels of care are twice as likely to become permanently sick or disabled than the general population, with 625,000 people suffering mental and physical ill health as a direct consequence of the stress and physical demands of caring.

It also estimates that carers save the UK economy 119 billion each year - an average of £18,473 per carer. 

Many families have to reach a crisis or breaking point before any care packages are put in place.

But isn't prevention better than cure?

The priority for Public Health England, the agency set up by the Department of Health to protect and improve the nation’s health and to address inequalities, is to reduce the burden of disease and disability in life by focusing on preventing and recovering from the conditions with the greatest impact, including anxiety and depression.

Do special needs parents count? 

I know each family copes in different ways and every child is different but nearly four years in, I believe the following is key in helping to prevent depression and mental illness among our ranks (and I suspect this list is the mere tip of the iceberg):
  • We need one healthcare professional overseeing and advocating for the family's well being. Support does exist in different guises from the social worker and health visitor to Portage and the community nursing team. Yet their job is to put out fires once they have started in their own little rooms of the house, not to help you navigate through without the fires starting in the first place.
  • We need access to the right information. This would help dispel the myths surrounding the educational statementing process. There are many horror stories about statementing and SEN reform that make parents anxious before the process has even begun. Most of the time it is seamless and there is a good system in place. More information on new reforms can be found here
  • Other aspects of the system need to be simplified. Local authority social services departments have a duty under the Children Act to assess a 'child in need', including children who are disabled. Yet getting assessed does not mean any of your needs will actually be met. There are too many stories of families not being able to access respite/short breaks unless they can prove they are in "emotional turmoil" and "emotional distress". Wouldn't it be better to offer these services to prevent this distress in the first place. Stop making us jump through hoops.
  • Lifting and back pain needs to be addressed. This is a massive issue for special needs parents. The charity Backcare says that back pain "doesn't kill but it tortures". At the very least carers should have access to lifting advice and physiotherapy exercises for core strength training as they are going to need it. There is a Disabled Facilities Grant that carers can apply for to make their home more accessible yet just one occupational therapist makes the decision (whereas a statement involves numerous healthcare reports) in a one-hour assessment. It is a long drawn out process that is not for the fainthearted.
  • Families should be helped to get back to a "new normal" as soon as possible. Many parents cannot work as there is no adequate childcare out there for their complex children. Many lose their jobs and houses as a result. A group of bloggers are now involved in a Parliamentary Inquiry on the subject and more information can be found here
  • More support groups like SWAN UK should exist to help families learn how to cope, share information and not feel so alone.
The best swimmers are those that can relax and feel in control in the water. We lose our buoyancy once we panic. Adjusting to life with a child with additional needs is like trying to swim when you are scared of the water. It is not being able to see land for the obstacles. It is about every day trying to not give up and go under. 

Add to all of this the fact that when we do get to the edge of the water, instead of finding a helping hand we are all too often greeted by a big fat palm in our face pushing us back in.

It shouldn't be sink or swim. We too want the chance to float for a bit and enjoy the water.

Gabe says: "Let's get swimming"

Monday, 23 June 2014

The me before we

It is not very often that I watch something on TV that makes me stop in my tracks and evaluate my life (probably because I like dirge like Revenge and 90210), but this actually happened to me last week. I can't even remember the programme nor the character. Just what the character did.

They pottered downstairs mid morning and announced that they were going back to bed with their cup of tea to watch telly?
How? What? WHAT? 

It made me remember that I once could do this. Hell I could stay in bed and watch a DVD, read four magazines, half a book, roll into the bath and back out into a bar.

To have an extra hour in bed in the morning now requires artful negotiation not beyond the likes of Obama in a Chinese trade meeting. You see there are now three small people that own and control me more masterfully than any parent, teacher or boss before them.

Yes - I still get to do "me" things but there is a rigid premeditated aura about them. There is no spontaneous "I think today I'll nip and have a mooch around Harrods" or "I think I'll catch that new band in Camden Lock". It's more "Yay, I'm in Tesco by myself."

Most days you don't care that you have become a watered down version of yourself, that you've took your foot of the gas career-wise, but then other days it smarts like hell.

I was once me and I managed to remain a me whilst marrying the he.
As delicious as motherhood is, the whole master of your destiny thing ends the minute that tiny hand wraps itself around your finger and just can't let go. Destinies are then as tightly entwined as those little digits. You can't make any decision no matter how trivial without thinking about the ramifications on them. Even if it's as mundane was taking them out in the rain as you've ran out of loo roll.

All three come with their own individual needs and they can be legion. Days can blur into packed lunch-making, baby-feeding, nappy-changing chaos. I wouldn't have it any other way. It's a beautiful, annoying, knackering, fulfilling sort of busy.

But things are slowly starting to change. Liam and Erin are getting older and with it more independent and Gabriel starts his special school for four days in September (and full time the year after). It is a mark in the sand the day your youngest starts school as the next chapter of your life is allowed to begin. But I guess many flounder and ponder on what words this new chapter will hold.

And I will be the same. Where once I juggled and muddled through, there will be time. The house could be clean, there might be clean towels on loop and I guess there is no excuse to not make it to the gym every now and again.

But I don't want to waste this new chapter of life either. I want to make my days count somehow if that is not too cheesy.

Yet where to begin?

This weekend I found a little bit of that me again - she's been there all along - a bit squashed amid the wife, the mummy, the special needs parent, the part-time worker, the therapist, shopper, the cleaner, the load the washing machine-dryer-repeat magician.

Did I mention the conference was
sponsored by a wine company?
You see I attended the Britmums Live Conference. A place were 700 "social influencers" got together to debate issues like feminism, blogging, social media. the evolving role of technology and why little babies are like little pissed people. I knew no one, but I felt like I knew plenty - just from reading their blogs, magazine pieces and "chatting" on Twitter. I wasn't Liam, Erin and Gabriel's mum. I was Alison. Me.

Each of the women (and the daddy bloggers) I met at Britmums were brimming with ideas, ideals and plans for the future. Whether it was finishing that book this summer, starting a new business, going back to work, taking a year off. I met and heard from people who were bereaved, juggling special children, battling illnesses or watching loved ones fight diseases.

All had their individual crosses to bear, but they were trying to not let them weigh them down. No one was resting on their laurels and waiting for life to give them a break. Instead, they were pulling on their boxing gloves and punching it in the face.

I want to punch some faces too and remember again that there is a me behind the we.

Thanks to the lovely and amazing bloggers who made me feel like a new friend. Check these out if you get a chance:

Thursday, 12 June 2014

How to turn the World Cup to your advantage

And so it has begun. The date we have all been waiting for with bated breath. That we have been dreaming about since Euro 2012.
Okay.. yes... I am being sarcastic.

I mean I like football I really do. I grew up in a house where football wasn't just a matter of life and death - it was much more important than that. My dad toured Europe with Liverpool in its hey day and I've lived and breathed the highs and lows of the beautiful game.

Yet anything in excess tends to turn my stomach (even Double Deckers).
So once I've got over the novelty of cold beer and a BBQ mid-week I have a feeling the tournament is going to leave me feeling a bit tormented.

Ever the resourceful person, I've come with some ways I can turn this around to my advantage (sssh don't tell the husband).

This is how the World Cup is going to work in my favour this year....

More sleep

If the baby wakes just as we are going to sleep - I will not fret. If he wakes with the larks - I won't sweat it. I'll just whisper the words: "what games you got saved on Tivo?" and my man will be up like a shot. The distant roar of a football crowd can be my lullaby back to sleep. Aces.

Catch up on crap TV

Before we had kids we wouldn't think twice about watching TV in separate rooms for long periods of the night. We would have got to chat over dinner or before we turned the lights off. Now if we don't sit on a sofa together for some of the time between 8-10pm we would literally be like Norris and Emily Bishop. The downside is that it is really rare we watch something we both like. How can this man not like Grey's Anatomy, Revenge and Made in Chelsea. I mean really! But now it is guilt-free Orange is the New Black catch up (and yes I am a genius for saving it). I am a-coming Binky - all will be fine now I am here.

Father's day taken care of

I'm not a big fan of Father's Day as the husband is hard enough to buy for. There is only so much Molten Brown bubble bath and Percy Pigs this man can take. This year though I can offer to cook a roast dinner and then take the kids out so he can gorge himself on foreign finishes.

You can eat crap food

Two words people BAR SNACKS. Hell yes snacks galore. I might be watching Secret Eaters in the t'other room but man I am doing it in style - pass me the Doritos baby and save me some Onion Rings. Another beer - oh okay why not. It is the World Cup afterall.

Spook them out for fun

Swallow some key facts and randomly throw them into conversation - especially when his mates are around. You will amaze. Stuff like at last we have goal line technology and getting them to guess who the most expensive player in the World Cup is (Gabe's growth hormone mate Lionel Messi with a market value of 139,6 million euros). High five guys. I am a cool wife (who is just nicking a beer and going to watch Kramer versus Kramer - less weeping!)

There will be some thrills and spills

I actually love to hate it when I get sucked into the football frenzy. It is quite tense. I end up pacing. And swearing. And having mini heart attacks. Penalties are like horror films - you just can't watch but watch you do. I still remember the euphoria of Euro 2000 and beating the Netherlands and the epic Germany qualifier game a year later. But you know I am getting too old for all this hoo ha these days.

*What's that Mr Gorg - there is a great goal? No I'm busy. There is a penalty in the box? I'm really not interested. Who's arguing with the ref? I'm watching Marrying Harry. Rooney is about to score... oh man, okay. Budge up....I guess Piper will have to wait another 4 weeks*

Gabe says: "So me and you are hiding in the garden for the next four weeks. Cool.
One thing why is Daddy crying?"