You’ve got a friend in me….

As time goes by, as the twins get older and bigger and heavier, as I start to notice the odd grey hair (let’s face it, its miraculous I don’t have a head full)…things evolve.

Time brings about change and there have been many changes in my world since the twins arrived a few years back. The biggest change, one would think, is jumping from one child to three. In one day. That’s what happens and is the principle of a ‘buy one get one free’ situation: you didn’t set out to get multiples of one thing but it’s a lovely surprise when you get given them.

Without doubt, the biggest change has been adapting to raising children with special needs, something I was a complete rookie to and had to learn very much on the job. (I am doing ok though, I¬†haven’t been sacked yet ūüėČ)¬†One life alteration which surprises others however, is when I talk about how the people in my life have changed purely as a result.

Let’s get this out there, get the negative stuff out the way. If I am speaking back to my ‘newly diagnosed self’ (the mummy I was when the twins were first poorly) I have to tell her, yep….there’s a few people who are gonna bolt. Along the way, maybe straight from the start (I’ve had both) -there will be some friends that liked being around the Haanagh before twins but not the Haanagh after.

I’ve thought long and hard about why that is. Many answers have run through my mind about why they chose to desert me, probably at the time I needed them the most. When the twins were diagnosed….they chose not to be my friend.

Let’s ¬†process that for a moment….

I couldn’t really find a solution to my questions. Certainly not for the person who messaged me ‘sorry’ and blocked me from all social media/phone contact so I never heard from her again. I could almost stretch to understand the person who text me to say she wouldn’t be contacting me again as ‘she couldn’t handle it’….until I had to remind myself it was me having to handle it and a cuppa with me once in a blue moon wouldn’t really require her to handle much of the heartache I possessed and the daily care that I had to provide my sons.

But as time has gone on, I have accepted that that’s ok. I haven’t missed them (much) so maybe I had to question how much they would have contributed to my life if they had stuck around. Goodness knows, I have needed to be surrounded by people who WERE up to the challenge of continuing to be my friend whilst my life turned upside down. So sure, I was no longer going to be that pal who could pop to the pub at an hours notice, or have a trip away without six months notice (so to organise care packages with more than military precision).

Perhaps, they couldn’t bear to see me so upset. Perhaps their hearts hurt for me too much. Perhaps it was easier to walk away. As a firm believer of dishing out the kindness, I hope it was those reasons….or….

Perhaps I was a less fun chum…perhaps I was just different. Perhaps my heart was forced into a different shape that would never quite heal so I became a less attractive prospect.

Anyway, it doesn’t really matter now as there’s only been a few and these no shows don’t really know what they are missing. (Firstly, as one used to borrow my shoes regularly and seeing as I have awesome ones, she’s missing out).

Mainly, the thing they are missing out on isn’t actually me. It’s two incredible little people who have so much to show the world. If they had stuck around they would have seen how much these two have to show the world about positivity, strength and determination. How they can make you laugh at the darkest time, their quirky ways, how they will see the beauty in anything, and how their smiles truly were worth the time and effort. Yes it’s a rocky road at times and goodness knows I’ve cried a river, yet they would see how those tears were often ones of pride and achievement and not always sadness and despair. But as it happened, if they weren’t truly on our team…then they wouldn’t truly understand how awesome my team members are. ‚̧ԳŹ

Moving on….

As much as I have lost, I have gained ten fold. I have met people who have become firm friends and have been a support from the most unlikely of places. I have seen the ¬†sheer joy of lovely human nature in action. Friends online, friends of a similar life, friends to have coffee with and friends to have only wine with. Friends from my town and friends a plane ride away. Friends who know what to say. Friends who know when not to say anything. Lots of people in my life who weren’t there before twins. Welcomed with open arms.

Only this week, I have had countless messages of love and support through Reuben’s illness and when the tiredness got too intense, a text with a friendly word from a friendly face was more than appreciated.

I am blessed. I get to count the friends I have on my hands and run out of fingers many times. How lucky is that ūüėć

Everyone needs a girl tribe. I have the bestest of tribes. (One who shall not be named who even tried to kick my door in when she knew I was desperately sad one day. And she’s not even that strong…don’t tell her I said that).

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So to my close and dearest of girls….(and a couple of boys) I must say to you a few things. Some I probably¬†haven’t said before so here goes.

1. I appreciate you. I appreciate the texts and the messages and I know you’re there. So far I haven’t forgotten your birthdays or anything but if I ever fail to text you to wish you good luck on a job or similar, it’s not cos I don’t care, it’s mainly as my brain is made of mushy stuff that mainly consists of yesterday’s hospital appt.

2. Sometimes I’m jealous of you. There – didn’t expect that one did you?! I’m jealous of how you can have a lie in or sleep most of the night or just pop to the shop for a pint of milk without taking the equivalent of an medical equipment show room with you. I am jealous you get to go to work and speak to adult people and have a wee on your own. I was once that person. But I like hearing about your days, so tell me! It won’t stop me being envious of your trip to Tesco alone but tell me regardless.

3. Do not trivialise your worries to me. Everyone’s problems are relative…and if it’s important to you, it’s important to me. I want to be there and share this stuff with you. Don’t say ‘…it’s nothing like what you have to worry about but….’ as it gives me the rage ūüėČ A problem is a problem so please share. (Unless it’s about what coffee machine or something to buy…that’s not a real life problem ūüėČ)

4. I’m sorry if I’m not always there. I’m very sorry. I will never get used to this.¬†There’s a high chance I’m at some hospital or clinic or I have to stay home cos one of them are poorly. I can’t always get out to join in or be there at special or poignant ¬†occasions. But if I’m not there in body I’m there in spirit.

5. If you come round, there will be washing up in my sink and a house that’s a bit cluttered of medical stuff. Take us as you find us, and if in doubt, use said medical equipment as a place to stand your coffee I will ALWAYS be delighted to make you.

6. I’m not supermum. I don’t wear my pants on the outside of my trousers. I’m just getting by, like you, but I took the scenic route to motherhood…just because we have differences doesn’t mean we don’t have the same struggles. I hide the vegetables in pasta sauce to make them eat it too ūüėČ

7. My life with my twins may drain my energy and take me to the edge of worry. But I will always have space in my mushy brain for you. Day or night.

8. Thank you. Thank you for getting excited about my sons’¬†new wheels or the fact they fed themselves 7 years later than the average child. Thank you for listening to me drone on about lack of resources and my fights for what they need. Thank you for celebrating the small things or picking me back up when getting up was hard. Thank you for crying with me. Thank you for giving my sons the time they need to get their words out. Thank you for their carefully selected presents and for cooking at their birthday parties. Thank for your acceptance, ¬†for your tolerance of their anger and frustration. Thank you for not leaving when things get tough.¬†Thank you for googling the medical words when you didn’t know what they meant. Thank you for the little cards through the post. Thank you for trying to see the world through their eyes. Thank you for not leaving.

For you, you made the effort and it shall never ever go unnoticed. You did when some others didn’t.

Thank you for making my life yours and for your understanding as I make my way through a life I never expected.

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See beyond the disability.

She is out, in the local supermarket. She sees a family, also out together, just going about their business. The couple, maybe married, maybe not, are with three children. You can’t see wedding rings as it’s cold and they have gloves on. The ‘mum’ is holding the hand of a little boy, who looks full of energy but maybe a bit unsteady on his feet. He’s fallen over a couple of times too. He has big bulky boots on. She isn’t sure she has seen those on sale in Kid’s shoe shops. There is an older boy, chatting to ‘Dad’. Dad is pushing another boy in a wheelchair.

The boy in the wheelchair has plastic splints on his legs, looking sort of like what Forrest Gump had that time, but with less metal and more modern. He has normal shoes on though, just like other children wear. The chair has pictures of Star Wars on the wheels. It’s slightly reclined. She wonders if the boy knows what Star Wars really is. He isn’t talking, can he talk? ¬†On the back of the wheelchair hangs a little superhero back pack, and what is probably Mum’s handbag. That’s a nice handbag. She looks ok, looks like she’s straightened her hair and had a fringe cut as it’s quite shaped. I wonder where she gets time to do that, she must have her hands full.¬†

Are those boys twins? They look fairly alike but one looks a bit smaller than the other. Both boys look disabled. Blimey that’s some crap luck. She wonders what’s wrong. She assumes there must be something genetic as there’s something wrong with both of them. She wonders if anyone’s given the older boy a genetics MOT. He looks normal though. One of the little ones has clearly come off worse than the other.

Though, the little boy who can¬†walk, he’s got hearing aids in. They are bright blue. She wonders why they are blue – there’s no missing those, if it¬†was her, she would have chosen a more neutral colour to hide them behind his hair. She wonders if his deafness is why he is shouting. He’s clearly having a meltdown about something. Mum has just given him a magazine to hold off the shelf. SHE wouldn’t pander to any tantrums, however much he kicked off. Some people just can’t control things. Mind you, mum has got her hands full. That looks like a whole heap of hard work. Wheelchairs, illness, deafness, equipment. Blimey. The lady wanders off to get the Joint for Sunday lunch.¬†

This wasn’t just one person. This is a collection of thoughts and opinions that people have given me over the years. It’s so very easy to base opinion on first impressions, so easy to base opinion on what you first see or first hear. So many people have said to me they find it hard to see beyond that though, to see beyond the disability. They didn’t know how to talk to my son, whether that be to Reuben, in case he could not converse, or to Zachary in case all he knew was sign language. They were unsure of the equipment, of any noises they made or from touching them… in case their hand got covered in dribble.

This is the reality of Cerebral Palsy.

Some of society still lives in fear of disability. Fear of the unknown, how to act or what to say. I wish I could take them by the hand and show them there is nothing to fear, and how they can see beyond the disability if they try.

Beyond the disability there is so much more to my sons.

If all you see is the wheelchair, you won’t see the strength Reuben has formed in his legs after the daily Physio regime he has every single day. Behind the tight muscles and the chair, there are the war wounds of his leg surgery which display his strength and his courage for every operation and anaesthetic he has ever had. His courage and determination are his hidden superpowers. They are deeper than you will see and an innate beautiful part of his soul.

If all you see is his back pack, you won’t see what’s in it. Yes there is equipment, but there is also his favourite snack of chocolate cake which I can guarantee he can eat faster than you. Oh, and he loves a roast dinner too. And a McDonalds.

If all you see is his wheels, you will miss the understanding of ¬†the Star Wars spoke guards. How he loves (and very much understands) Star Wars. How he can recall and tell the characters far better than me, how he sits and watches it with his brothers. How they sit together as a trio and marvel at the Millenium Falcon and how he dances energetically whenever he hears the theme tune. How he can’t wait to go to the cinema this February to see Lego Batman as lego is his favourite toy. How he loves toys.

If all you see is him listening, you won’t hear his voice. His voice is my heart’s song. He is a joy, great company and has a wicked sense of humour. He may sound slightly different to the rest of us, but he sees and speaks of the world with a deeper appreciation for the things that sometimes we all take for granted.

If all you see is a boy in a chair, you will miss his character, and the love he has for his family. You won’t know his love of audio books and a cuddle before bedtime. You won’t see the beauty of his mind and his imagination, how he asks me if I’ve had a good day and how he truly cares for those around him.

If all you see is the hearing aids, you won’t see how these are his ‘ears’ which lets Zachary join in games with his friends and chat to me after school. The blue aids are the colour he chose himself, as he has his own thoughts and his own opinions. Valid opinions not deemed less important by the disability that sadly categorises him by some.

If all you see is the heavy boots, you won’t appreciate the effort it took him to learn to walk. Yes, the positional¬†boots help him but he can run and jump and likes to play at the park. His mind takes him to the world of pirates and cowboys and he will always defeat the ‘bad guys’. You see, superheros always win.

If all you see is the meltdowns, you won’t see the love and affection when he is calm. You won’t know his love and gentle nature with animals. If you could see behind his eyes, you would know he sees the world as a very confusing place. Sometimes that’s overwhelming for him. Yet, his affection and love for us shines through as he takes solace in the love of his family to make sense of his surroundings.

If all you see is a mother and father, with their disabled children, you won’t see the strength of the unit we are. A mother and father, who don’t sleep much, who sometimes have the weight of worry on our shoulders. Take us at face value and the disability is prominent. Look deeper and you will find unity, respect, understanding, patience and gratitude. You will see a family like any other, with a different level of challenges yet with the power to face and overcome them.

I would encourage people to open their eyes to things that stray from society’s ‘normality’. Whatever ‘normal’ is. I would ask them to accept and celebrate differences. I would will them to see the beauty in things they don’t yet understand. Be patient, take the time and leave any discrimination at the door. Open their hearts and open their minds.

My sons are more than the power of their limitations. They are more than Cerebral Palsy. They’ll be far more to discover if you see beyond the disability. You are guaranteed a lovely surprise.

 

 

 

 

 

Out with the old, in with the new.

The eve of a new year. (Oh – and my mum’s birthday – happy birthday mum!)¬†Those who are closest to me will know only too well I don’t really go in for New Year’s Eve.

I used to. There was many a Dec 31st where I’d see in the stroke of midnight with my glad rags on and a glass (*bottle) of Fizz. Times change when you have babies though and far more low key New Years celebrations became common place.

I’ve had a true dislike for New Year since the twins arrived. That year was spent in NICU, with the sound of the alarms replacing the chimes of Big Ben, another stressful and worrying day rolling into the next. Fireworks and party goers continued regardless of the heartache that existed as my real life, as the world carried on around us.

As the twins mastered the art of survival in those first few months, I was eternally grateful for every day they woke up to. Days turned into months which turned into years. I got to the end of another year, through the trials and tribulations of their little complicated lives, and was pleased we made it. Each New Year’s Eve I can’t help but feel thankful for getting through, relatively unscathed and feel satisfied that we ‘did it’ again. We faced the demons, fought the battles and came out with our armour intact. Our hearts may have taken yet another battering, yet they were patched up and refilled with the joy and pride these boys never fail to deliver.

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Whilst I celebrate the year gone by, despite the scenic route we sometimes take in life, I cannot help but turn my mind to the one ahead. I always wonder what it will bring. I wonder what is in store. In many ways, I feel trepidation and worry about what will lie on our path. I was safe and settled in the year gone by…I had it covered….this next one is unknown territory.

Will this be the year Reubs needs that big surgery…the one I have worked so hard for him to avoid as yet….will the X-rays deem this fate….what shall come of Zach’s ¬†surgical meeting…how many times will I have to kiss them nightnight for their magic sleep under the spell of anaesthesia this year? Will I make the right decisions for them, there’s some big ones coming up…which way is the right way to turn?

And the one that silently and privately haunts me the most…as most families with children who have disabilities will fear….will I end next New Year’s Eve with them still with me..are they destined to stay. I pray I never have to face that pathway.

As we approach the last hours of this current year, I can only continue to hope that with the love and adoration I surround these boys with, that they will continue to shine – shine in their own unique way, touching the lives of those that meet them.

For sake of trying not to sound like the Queen here,  I have a New Years message for the twins which is the premise of what I try and teach them every day. I tell them this:

1. Be grateful each and every day. You fought to be here and your life is enriched and fulfilled. Be grateful for the air in your lungs, the blood in your veins and although your bodies don’t work like everyone else’s, be grateful of every inch of you. You are perfection. Never let anyone tell you otherwise.

2. Laugh a lot. Find the funny in each day. Don’t take yourselves too seriously. Smiling is the key to getting through most difficult times.

3. Embrace everything you go through, however difficult. All these challenges and things you face make you who you are. They tell your story. Nothing worth having comes easy and mummy and daddy make decisions that aren’t always easy to understand. But we do that with love in our hearts, your best intentions and everything will be worth it. Work hard, play hard and reap the benefits of your efforts.

4. Believe in yourselves. Never let anyone tell you you can’t do something. Don’t think your disability is a barrier to doing what you want. Your disability may make things a challenge but you can be who you want to be. Take life by the horns and be your best self.

5. Be kind. Always. That speaks for itself.

6. Celebrate your beautiful differences. In a world of chocolate buttons, be a smartie.

7. Know that you are more than loved. You are cherished and adored. Wherever you go, whatever you do, the love of your family will encapsulate you so you are never alone.

I figure that we made it so far. This year brought us MRI scans, hip screws, surgery and hospital stays. It gave us decisions to make I didn’t see coming, new diagnosis and new medications. It gave us great Ormond street and bad news. It gave us good news and worrying results. It gave us a new car so Reuben became more independent. It gave us new hearing aids and splints.

It saw me lose a couple of friends, to realise that sometimes people are sent only to¬†form¬†a temporary fixture in your world. That’s life and life evolves. Yet, I made a couple of new awesome friends and cemented my love for the ones I hold so very close to my heart. It gave me my nephew!

It gave us the first time Zach read properly from a little book, and the first time he wrote his name. It gave us days out as a family in the sunshine. It gave me my family of 5 still going strong ūüíô It DID NOT ¬†give us the wheelchair he was prescribed FOUR YEARS AGO. It gave me the love I have to keep fighting for them.

We can carry on into the next year ahead – with the above guidelines we keep close to our chests, surely that will guide us on the right path? Only time will tell. We can’t stop time, we have to float along with it, facing¬†whatever is thrown at us.

So armour on, buckle up – please 2017 be kind to us. At least if you throw me a curveball, give me a bloody big bat to try to hit it with.

This new year, I will raise my glass to all I love. I have a family who define the meaning of family. I have the best girl tribe you could ask for.

Whatever your tipple – whether that’s gin or ale, Fizz or tea, cheers to you. Happy New Year to anyone that may be reading this, may you be safe, happy and content in the year ahead.

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Memory making.

Memories. They are funny things. So easily over the last seven years, I could associate the concept of memories to being painful ones. The early years after the twins were born were just that. I would recall the early part of the twins’ life in a shadow of darkness. Everything the doctors warned me ‘would never happen’ played havoc in my mind, as I lived through the Neonatal peroid¬†under a spell of heartache with a promise of a bleak future.

As much as a cliche as it is, time was a healer which taught me to live in the moment. Only the twins would dictate their own destiny and over the months that unfolded, I saw them thrive and develop into children who were far from the children that medics had created in my mind.

The biggest lesson I learnt from this was just as my husband had taught me – that we had to love them and the rest would take care of itself.

At the start, I wasn’t sure what ‘the rest’ entailed. I was victim to the love I showed them, yet the love was my biggest tool to facing an uncertain future. As much as I had associated the early years with painful memories, over time I began to see the importance of memory making.

None of us have a crystal ball. None of us truly know what path we will take or what life has in store for us. Yet, when you are dealt cards that make life slightly more turbulent and unsure, it’s important to face things head on and build up a memory bank of the most precious things in your world.

I have been able to transform my mindset from the demons of painful memories, from the time where I wanted to block out the experiences the new world of disability propelled us into, to go on and see how the best thing about memories is the process of making them.

Memories are the unique and special moments that tell our story. They are things that can never be taken away. They are the cementing of love and time spent with the people dearest to us. For us, it’s cherished time – a moment and experience to capture – where time stands still.

Today, this Christmas, we spent some memory making time. We asked a very talented lady, Lucy, along on a morning out with us. She brought along her personal nature of sunshine, with her camera, and luckily some wonderful weather. As our close family of 5, we spent the morning in the crisp winter sun, playing and strolling in the grounds of our local castle – where I myself had grown up, echoing memories of my childhood.

Lucy, in her calm and understanding manner, captured in images the love between us and the importance of our family. The bond between my boys is pure and the pictures she naturally caught on camera meant this was captured for eternity. Thank you Lucy for sharing your gift.

 

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No one can remove those memories. No amount of surgery, no poor prognosis, no threats of further impact of disability can change these.

The beauty of this morning, the fun we had, the giggles we heard, the bubbles we chased, the time we spent – it can not be extinguished. We built the memories – but Lucy captured them in a way that was so perfect and so pure, that I will always be indebted to her and her talents.

I don’t know what cerebral palsy and it’s associated medical mates have in store for us. I don’t even know what tomorrow will bring. However, what I do know is that today, we built more memories of a time with our children which was blissful. It was a happy time which no amount of ill health could threaten.

Be happy with the ones you love. Be together. Laugh and love. Cherish those around you. Build memories that make you smile.

Memory making is so very important, not just for families like mine, but for all of us.

When time is precious, nothing matters more.

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It’s beginning to look a lot like Christmas…

Christmas has always been a big thing for my family. As a little girl I had big family Christmas lunches, after a morning playing with gifts Father Christmas ‘magicked’ ¬†into our bedrooms gone midnight and then watching the Queen on TV at 3pm. Evenings of passing round the Twiglets¬†and nuts, playing charades until we crashed into our beds way past our bed times, with happy hearts and full tummies. I was blessed with a cherished childhood.

As I grew up, I always promised to myself I would surround my own children with the love I was lavished. I’m not talking material items and gifts, I’m talking about my feelings of love and security and safety. It was like I was wrapped in a huge cotton wool blanket of adoration. ¬†I couldn’t have been more loved as a little girl, which I why I guess I learnt the skills and ingrained ways of loving my own. At Christmas, in a family which was close and content, this was so evident and I have the fondest memories of happy times around our real Christmas tree, which was decorated red and gold from as early as I can remember.

When Harry arrived, I was able to start Christmas traditions with my own son. Watching him lay Father Christmas’s mince pie and sherry on a frosty front porch, followed by negotiating the creaky floor boards with his stocking so he wouldn’t wake. Christmas was my most favourite of times, even as a midwife when working over¬†the festive period. Twinkly lights, cosy nights and family time.

Christmas changed for us in 2009. It was the year we had no tree. The year I ripped up Christmas cards. The year I couldn’t eat a Christmas dinner as I cried into my plate. The year we left the pantomime at the half time interval. The year my Christmas spirit was no where to be found, despite trying to sustain it for 5 year old Harry.

The twins had been born exactly one month before. Their early arrival on 26th November meant Christmas took a new hold. They shouldn’t have even been born until the following February.

That Christmas was the year my sons fought for life. That Christmas was the year my heart broke.

We opened Harry’s stocking with him that morning. He had asked for a football and some Ben 10 figures. As he played with those, cared for by my mum and dad, Mike ¬†and I visited Reuben in intensive care.

One of the most poignant memories I have of that day was walking in, nurses with token tinsel earrings, a frosty Christmas Day. Freezing outside but the tropical heat of ITU remained the same. The smell was the same, the alarms rang the same. Christmas Day yet Groundhog Day. Another day sitting cotside, hoping for news that may not be as horrific as the last month had brought.

A tiny little knitted stocking hung on the end of his incubator – Father Christmas visited all children in hospital – even if they only weigh 3lbs. A poignant sight, and I couldn’t help wish how things were different – how it should have been me filling that stocking for his first Christmas. His first Christmas should have been at home, with the family who adored him yet who had never yet met him.

There was a little Christmas card on the top of Reuben’s incubator, with his inked ¬†two tiny footprints on the front. The first card Reuben ever gave me, which I cherished as I feared it may also be his last.

‘To Mummy and Daddy,

On my first Christmas, Happy Christmas,

Love, Reuben’ xxx

Kind nurses, who recognised the heartache of having a baby in NICU at the best of times, let alone on Christmas Day. A day where I had the pull of wanting to be in NICU but also wanting to be at home with Harry. The pull of needing my own mum and dad to make me feel safe and loved, like I did when I was 7, around the Christmas tree I historically decorated, was immense.

You see, something else was missing. Zach.

Zach was still in London, in intensive care where both twins had started their lives. He hadn’t been well enough following his first episode of meningitis to be transferred back to Hampshire. He was still only 2lbs. Reuben was bigger and a bit more stable, so he had been sent to Portsmouth from Hammersmith on 23rd December.

On Zach’s first Christmas Day, I didn’t see him at all.

We had Harry at home, Reuben in ITU in Portsmouth and Zach in ITU in London.  That christmas, I had three children in three different places and my head was in a completely different place altogether.

I remembered how Christmas was such a massive thing for me growing up, how it was and remained to be such an important time for family. On my baby boy’s first Christmas, Zach didn’t have his family. He had the nurses who were keeping him alive. I know he wasn’t aware I wasn’t there, as he was so tiny and still poorly, yet it cut to my core I couldn’t be there. I couldn’t be in three places at once.

That year Christmas took a turn in my life. Since 2009, I have spent the years rebuilding it. Everything I loved about it as a child had diminished.

As the twins grew, year by year, it became evident how their disabilities would shape their life. Christmas would not be the same, yet it just meant we started to approach it differently. As time passed, I came to realise that ‘difference’ was nothing to fear.

The twins have taught me so much in their lives so far, and at Christmas time this is no different. Their nativity plays at their special needs nurseries were full of more wonder and determination. Their eyes were wider at the Christmas lights of neighbouring houses. The joy my dad felt in them managing to swallow their first Christmas dinners that weren’t needing to be pur√©ed was amazing. This year, at age 7, Zach wrote his first Christmas card.

As the years have passed, Christmas and it’s importance to me has been reignited. Christmas started to become more alive for me again, as the magic of it appeared back into our family, led back to me through the eyes and awe of my children.

Christmas Day will still bring the nursing stuff, the feeding and the hoisting, the equipment and the medicines. Yet, I now do Christmas in the same way my parents did for me. Disability has not been a barrier. There are still stockings, they just contain different sorts of toys. There are still snacks – they just aren’t twiglets. There are still games – we just adapt the rules.

Christmas Day will bring the love and family it always did. I’m older now, yet we will sit round the tree and be together just like my 7 year old self did. Only this year, I’ll have my own 7 year olds to wrap in that ¬†adoration that I myself grew up in.

I think back to 2009 and how at that time  I thought it was the worst Christmas possible. Fast forward to now, as I live in the impending magic of Christmas, maybe I was wrong. Perhaps, in fact, 2009 gave me the best two Christmas presents I ever received.

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Let’s talk….

I was about to embark on what I knew would be a rocky road. I can now almost snigger at how unavoidably ignorant I was to the weeks ahead.

Harry had been premature but at 33 weeks, his three week stay in SCBU turned out to be a walk in the park compared to the experience we had with the twins. Not that any special care admission is a jolly holiday, it’s far from easy whichever route you take.

Seven years ago today, about now, I was laying in my hospital bed, having my last scans and CTGs (tracing of babies’ heartbeats) as the next day was D-Day. The twins were hanging in there, yet poor growth of one and a bit too much growth of the other meant the time had come for them to be served their eviction notices. It was time to come and meet me, the one who had grown them, (albeit I was really quite terrible at this pregnancy lark and biology determined that I hadn’t managed to keep them safe and tucked up in ‘Casa Utero’ as long as I would have hoped for. My body sucks).

This time in my life was a difficult one, as I was relieved the twins had held on this long yet I was fearful for their early arrival. I knew they would be held in incubators rather than in my arms, and I knew for many weeks to come I would be sleeping alone without them by my side. What made things harder was that I was miles away from home, in London, as I had been transferred to another hospital due to lack of space in any Neonatal Units locally. I missed Harry, my family and I was scared.

The next day, 26th November 2009, the twins arrived. Times were 16:16 and 16:19. Together for so long inside me and from that moment, they started their very individual roads to survival. Taken from my failing uterus at a difficult caesarean section, they were whisked away from me in a brightly lit theatre, put in little plastic bags as the teams of medics helped them to breathe and to keep their hearts beating. They were taken to Intensive Care, on the other side of the hospital. Without me having even a glimpse of their faces, they were gone.

You know the rest. It turned out I was right to be scared, yet in a million light years I never realised how my fears would turn from worry to gut wrenching pain. Over the next weeks, until Zach came home as a NICU graduate to his brother on 12 February 2010, we batted away many problems tiny premmie babies face. We were blessed that they survived them all.

Apnoeas, bradycardias, jaundice, worries over gut disease, feeds starting….feeds stopping….feeds starting, cannulations, blood testing, blood gases, charts, alarms, keeping vigil, brain tracings, lumbar punctures, MRIs, skin breakdowns, long lines, infection, head scans, brain haemorrhages, Group B strep, meningitis (x2), gut bleeding, ventilation, CPAP, oxygen, chronic lung disease, pneumothorax, resuscitation. ¬† ¬†Tears.

They were transferred to our more local unit in ambulance transfer, Reuben at 5 weeks and Zach at 6 weeks. For that one particular week I had a baby in London, a baby in Portsmouth and Harry at home. And then it snowed. A lot. The world was testing me and things were sent to try us.

It took me a long time to try and come to terms with everything that has happened. It many ways, times are still challenging now. What I would say is that they don’t necessarily get easier, they just change. However, things can never and will never be so raw for me as they were back then.

The events of the last few years proved very damaging. In the thick of the early days we were warned that we may have arrived in London ready to have two babies, yet may return to Portsmouth with none. Their survival was becoming less likely as brain bleeds and infections took hold, and we had ‘that conversation’ about resuscitation and what was the kindest thing to do should that be necessary. No parent should have to have ‘that conversation’. There was a huge amount of mummy guilt that I carried, that they had arrived early as my body could not keep them safe before birth, and yet I couldn’t keep them safe after birth either. The odds were against us, as I watched medics try to sustain their lives whilst all I could do was to sit alongside them and pray, hope and will for the best.

When you have this much heartache, when you have truly traumatic events, they can haunt you. The years after their birth and as I raised them, waiting to see what damage the events of prematurity had caused long term, I had to admit it had hurt me. It had hurt my heart but had also hurt my mind.

I was diagnosed with PTSD, Post Traumatic Stress Disorder.

There. I said it. It’s nothing to fear or to be ashamed of. I wear the wounds of a hugely terrible time and I faced them. Mental distress is frightening and lonely. I was affected by nightmares, by flashbacks and by triggers, including a particular song and a particular shower gel smell which I associated with the hospital ward. ¬†It was enough to make me completely lose my head in Superdrug, in public. The physical affects of a trigger were too much to bear. Even now, despite coming through it after treatment, I still can’t smell satsuma shower gel.

I often wonder what would have happened if I hadn’t have dealt with this head on. I am lucky to have a wonderful GP, a fantastic group of friends and my family….well, if Carlsberg made families…..

I still have times, especially at this time of year when I struggle a bit, but I learnt tactics and coping mechanisms through the psychotherapy that let me deal with these and cope.

We should be talking about mental health. We should never fear to admit we need help. We should talk; talk and not be ashamed or worried by what others may think. It’s not a tabboo subject. It’s real. It’s happening to many many people around us. Some of who are reaching out for help, yet we can’t see it. For me, it was consuming me as I struggled to deal with the traumatic events of the past and I lived under the darkness of the ghosts of NICU and the cards we were dealt. I wanted rid of the pain but I didn’t know how.

There are no time limits to distress, but when the twins were three, I realised I needed to put my demons to bed. I couldn’t do that alone. Yet it took me three years to do so.

I am fully aware how there may be many people who have experienced the NICU journey, or a premmie or poorly baby. I am aware how it affects many many people, each day, in different ways. We all go through things at different paces, on different paths. Some find it easier that others, but just because they may be smiling on the outside doesn’t mean they aren’t breaking on the inside. I was known to get up each day, put the lippy on and carry on. What I was disguising was deep, internal anguish and pain and it needed to be addressed.

I am glad I did. I’m glad I talked. ‘It’s good to talk’. On the eve of the twins’ 7th birthday, it seems appropriate to talk. I did this when I was ready and when the time was right. It helped me to recognise that things were not my fault, and it changed the way I viewed things. It helped me to gain perspective to carry on. I recognised the triggers – one I faced, yet one I just chose to block from my life. I took control back. I looked after myself and my mental health, where all I had been doing before is blocking out the pain to keep the boys well and in doing that neglecting myself.

There are times ahead that I know will prove challenging for me as I make decisions about the twins and their lives. Yet putting to bed the demons of the past is a tool I have used to carry on and be in a strength of mind to cope with those decisions. It’s not an easy thing to do, and I had to summon up some pretty big balls to do it, but in a safe space help is at hand, should you choose it’s the right time to try.

So there, I said it. It takes guts to admit these things but maybe admission that those who seem to be coping the most, are actually struggling in their own ways. Maybe it will encourage others to speak up and confide in someone close. To talk. No one has to be alone.

Zach and Reuben are 7 tomorrow. In that old cliche, I don’t know where the time went. Some passed in tears of a stressful haze, some passed in tears of absolute joy. As time goes on, the balance of heartache and tears has shifted towards more smiles and pride.

Tomorrow we shall blow out those candles on a very impressive Paw Patrol cake (not made by me I should admit – Mary Berry would cringe if she saw my attempts at baking) and I feel, for the first time on any of the 7 birthdays they have had, that this one will not be shadowed by flashbacks and sadness. Time is a healer. Talking is a healer. I shall help them blow out their candles, feeling lucky for my lot, ready to face the challenges head on, to face the future and not live in the past. I shall make a wish – that they will be happy and healthy.

The twins took my by the hand and led the way into a confusing and worrying world, into a ‘club’ which we didn’t know we were joining. We have taken things in our stride and with help, we are succeeding slowly.

My boys are survivors.¬†I love them and I adore them. I will always fight for them. I’m proud of them and I’m proud of the way we have done this all together.#TeamSmith ¬†¬†Maybe my boys aren’t the only survivors around here……

 

 

 

 

 

 

 

 

 

2523 grams.

2523 grams. Or 89 ounces in old money.¬†That’s how much the twins weighed when their little weights were added together when they were born.

I remember thinking that collectively, they weighed less than some of the beautiful bonny babies I’d delivered a few weeks previously to the twins turning up, far earlier than was ever in my birth plan. What a privilege it was to do that job. Admittedly long hours and huge responsibility, yet the joyful role of midwife was one which saw me see the moment new families were created in an instant. Crying dads always set me off as I daily saw the immediate love in new mummies’ exhausted but elated eyes. Nothing beats it.

Didn’t quite work out for us like that though. Tears of elation were replaced with tears of far more negative emotion.

Born at 29 weeks, our twins’ early arrival deemed they had entered a special club for premature babies. They weren’t tiny enough to be considered micro-premmies¬†(those born¬†before 26 weeks) but Zach did attempt to gain membership of that special order by dropping his weight to below 1lb 12 oz in the first couple of weeks.

The babies were small, frail looking and almost a little bit see through. Skin as thin as paper where I could see the network of tiny blood vessels that mapped their bodies to keep them alive. That, and a whole bunch of machinery that alarmed every few seconds to alert hard working nurses to one problem after another, which kept them very busy. Tiny bodies being kept alive by huge machines, some tubes of which hid their heads so I couldn’t see their faces. Too small for tiny nappies, toes tinier than you can imagine, little tiny frames tucked into nests made of hospital blankets. Kept warm inside their plastic boxes whilst all I could think of was how they should be tucked up inside me, not fighting for their little lives as I watched on, broken hearted.

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The time you spend in NICU (neonatal intensive care unit) is like you are living in a bubble. It’s high risk care at the extreme, but with pictures of the odd Disney character or sea creatures adorning the walls. The monitors and attaching wires are as complex as they come, yet the associated sticky pads on your baby have teddy bears on. The hat your baby wears is like any other knitted bonnet, albeit with a flap at the front for Drs to scan their brains or to allow tubing. It’s an environment hotter than the tropics, but is far from a holiday.

The experience does however let you ride the biggest rollercoaster you’ll ever get on. However, it’s more of an emotional one than one you’ll find in a theme park. Things can be stable one minute, yet critical the next. You move from elation as their oxygen requirements have decreased to the next frightened half to death as they believe he may have some life threatening infection.

Germs become your biggest fear and handwashing your biggest obsession. You become an honorary neonatal professional,  learning all the lingo and what each machine is pumping into your baby or alerting you to. You know the tests, the investigations and what they are for. You know the normal parameters of these results. You learn the art of when to be calm, when to worry and when to plain and simply freak out. Freaking out is a regular occurrence. Sleep is non existent. Crying almost constant.

The emotions you experience whilst in NICU are quite extraordinary. The plastic incubator acts as a barrier between you and the most precious thing in your whole world. Nothing seems more important at that time than what’s lying there, seemingly helpless. What I learnt over time is that it was me that felt the helpless one. The baby has proud ownership of the biggest courage and will to live in existence. All I could do was watch. Well, that and express pitiful amounts of milk every three hours that was hardly even enough to sustain a sparrow. Not that he was much bigger than a sparrow….

There is something that’s ingrained in you when you have a baby, a maternal strong force that makes you want to protect and nurture your new arrival. I couldn’t do that. I couldn’t feed him. I wasn’t allowed to touch him. I didn’t hold him for three weeks. For all I knew, he didn’t know I was there. The nurses mothered him and kept him alive. The drs made decisions for him. I just sat vigil at his incubator side, occasionally whispering through the little door that ‘mummy is here, keep fighting little fella. I need you to survive’. Only I had to do that into two cots. As two of my babies fought their biggest battle to date.

Survival was all I needed from them at that time. I remember thinking over and over in my head that if they survived, I would never shout, never be angry, never nag them to do their homework or to eat their broccoli when they grew. I just needed them to come home.

There were times when that seemed increasingly unlikely. One particular terrible week, Zach was fighting meningitis for the second time. I couldn’t see how someone that small could fight such an evil disease twice, yet survive. I walked into the unit one day at the worst possible moment, as I found a whole host of medics and nurses resuscitating him with an bag and chest compressions as the disease invaded his little body. I was ushered into the family room, and I sat there alone, waiting for a doctor to tell me whether they’d saved his life yet again.

They did. Not all the twins neonatal neighbours were as lucky.

I know how lucky we¬†are. We brought both of our babies home. Facebook ‘on this day’ regularly and rather at times, unhelpfully, reminds me of the struggles we had this time 7 years ago. Timehop shares with me special moments of cute times with my children, but also haunts me with my memories of the anguish of that time. Painful memories are hard to erase and the time we spent in NICU was a very painful one. One where we have not escaped unscathed. Social media has a habit of throwing those memories at me when by now I should really expect it.

Prematurity has robbed us of so much. Reuben has quadriplegic Cerebral Palsy due to the brain bleed he had because he was premature. Zachary contracted meningitis because of his early vulnerable state, has CP and his brain hasn’t developed properly because he was premature. Both boys will need care for the rest of their lives. I still hear those god damn alarms in my head. I can still smell the unit’s characteristic smell. ¬†This is the reality of premature birth. Prematurity can damage lives and rob families of a ‘normal’ way of life. Though I’m not sure what normal life is. This is now ‘our normal’.

Tomorrow is World Prematurity Day. As I write this now, only those very close to me will realise the complete irony of this day being tomorrow. I will get up though and turn the painful memories on their heads. I will embrace this day and see it as a positive my babies lived to tell the tale. They wear the war wounds of many many tiny scars from the hundreds of blood tests. They wear an invisible badge of honour that they are NICU graduates. I have many invisible scars from that time myself.

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I will forever remain thankful to the many staff that made their homecoming possible. It’s difficult to express the feeling you have for the people that saved your babies lives. If you are by chance reading this, thank you. I really hope you know how special you are to my family. You gave the twins the gift of life, and despite the challenges we cherish that each and every day.

 

 

 

 

 

The bath.

I haven’t written here for a while. Sometimes I think maybe I only write when something significant has happened, good or bad, but maybe it would be prudent to sometimes just write about daily mundane¬†stuff. Maybe it would take my mind off the difficult decisions I have had to make recently. Not that my mundane trivial stuff would be at all interesting for anyone else – who else wants to know what colour washing I sorted today or whether I caught up with my tail enough to get the Twins’ school trip consent signed. Bore off Haanagh, no one wants to read that.

I’ve often wondered who would read this blog at all, but my dear friend suggests to me that someone, somewhere in the world is experiencing similar things with their children that I have – and therefore these ramblings may just accompany them on that path, reassuring them that they aren’t alone in that travel. Maybe it goes someway to opening others’ eyes to the life that someone with disabled children leads. Maybe it educates. Maybe it accompanies someone’s coffee as a convenient read when there’s no recent edition of ‘Women’s Own’ handy. Maybe it just explains why sometimes I haven’t got my lippy on for the school run.

For me, it’s an outlay. It’s therapy in its cheapest form. The written word can let me say what sometimes the verbal word cannot. Times when I burst with pride and there aren’t enough superlatives to describe the joy I have for the twin’s most recent achievement. Sometimes it’s a way of pouring out the sheer gut aching wrench that I have, when delivered a new challenge to face, when no words seem enough.

So, whether people read or not, I know that come the end of my own verbal reasonings, I shall feel better. Therefore it seems worth doing.

I’m writing this one from the bath. When my husband reads that, I can foresee the shudders he will display knowing I could have dropped my iPhone in said bath water. (Note: if I do, I’m sorry…but I promise I will try my best not to). Writing that, I can see the flaw in this plan – that with one water damaged accident my blog here will be over in one fell swoop and my husband will have a near on coronary that I lived on the edge in this way.

But I shall continue…continue writing as taking risks seems to be something I never do, yet do every day all at once right now.

The days of my taking risks for exciting or beneficial reasons are long gone. I don’t take the risk I’ll be too cold if¬†I don’t wear a coat to a nightclub saturday night. I don’t risk taking a chance on a new job. I don’t risk throwing caution to the wind and making some reckless decision that would possibly be irrational, yet give some spark to my life. Disability took all that from me. No wild nights out or careers for me any longer.

My risks are daily now, but for far different reasons. Risks like: ¬†we shall try that new advised medication in the hope it improves his muscle tone. Risks like: shall we pay out that ¬£600 for an independent opinion, wondering if it will give us a different perspective and hope. Risks like: which school in the future will be best for him… ¬†And I can guarantee in all those risks, there’s no wages or career progression and certainly no prosecco standing at a nightclub bar! But certainly there will be a cold virus in it for you, having picked up some new germ at their most recent hospital appointment.

I probably should get out the bath. I should move my iPhone away from the ever slippery hand from the water. But I’m not sure if the water is that from the taps, or from that that is streaming down my face.

You see, if you read my blogs or have been used to my online ramblings you will know I always fall¬†of the side of positivity. If you know me personally, you will know my outlook is a rosy one; that through the challenges, we face a life based on what we can do and not what we can’t. To see a way around the difficulties. Not live in the ‘why me’ or ‘what if’s’. They are far too consuming. As a general rule, that is me all over. Be grateful for the small things and carry on regardless.

However, we all have that devil on our shoulder. A little voice that casts doubt on the reason you do what you do, and doubt that are you bloody getting this right at all? That devil rears his ugly head at times and instead of letting you face the world in your red lippy and heels with a smile on your face, you face the world with red lippy, heels, a smile…on a backdrop of heartache that no one else sees.

No one sees the times I come home from school and shut the door on a world to have a bloody good cry. Even my closest friends aren’t privy to that. (Note to self: maybe let them?) No one sees the endless battles¬†I have with services on the phone and online to get the twins what they need. (Note to self: maybe publish them?) No one sees the fact I sometimes, like today, just cannot face the pure difficulty it is being the person I have to be.

No one sees me escape to my safe place of the bath. With my ears under water I can’t hear the hoist or the screaming or the confusion or the nursing tasks. I can’t hear or see the cognitive delays or desperation or pain. I can’t hear the postbox drop open with the next hospital appointment. I can’t hear the phone ring from another therapist discussing the most recent of findings.

We all need a sanctuary. Recently my sanctuary seems to be even more inviting as I have so many new decisions¬†to make for the twins that are frankly, massive. Big fat decisions that surely only grown ups can make. But I am not a grown up am I? Just a little girl who has run away to her hiding den to be rid of the big bad wolves. Also known as, a 38 year old mother who’s frightened of getting the big bad decisions wrong and sonetimes has to hide away where no one can find her. In the bath.

Having children is hard. Having children with needs that are additional or special or whatever you want to call it is another layer. You become a warrior (I like to think a warrior princess ūüėČ), ¬†a lioness, a negotiator and sometimes you become a down right stroppy mare. A fighter and voice for two tiny people who actually probably possess more fight than me. But being all those things, ALL OF THE TIME, in itself brings grief, doubt, sadness, anger, exhaustion, worry and loss.

I’ve lost count of the numerous times I’ve¬†¬†been called ‘strong’ (I hate that) or inspirational or whatever. Sometimes I’m not those things. I lost count of the number of times I’ve thanked people for their complementary words whilst I mentally have to turn off the tear factory as whilst I reply ‘yes we are doing ok’ – actually thinking ‘I’m so struggling right now’. Sometimes I think I must be a hard hearted person as I can put on this front – that my heart actually hasn’t torn in two yet despite feeling it might very well do so soon. Or perhaps it hasn’t, because it’s had to reheal itself so many times over the last 7 years. Sometimes, like right now, ¬†as I’ve left Mike to deal with the most recent violent meltdown downstairs of the teeny terror (aged 6 with a temper of the Hulk), I run my cowardly escape to the bath. Call it a coping mechanism, call it tiredness, call it just getting by. Not often, but just sometimes. When I just don’t know what else to do. These two twins are so adorable, so cute and I love the very bones of them, but by gosh does sometimes being their mummy qualify for being an olympic sport.

Sometimes I talk, it’s easier just to not. But sometimes I talk. I don’t always want advice though. I love the concept of people wanting to help me, and I particularly¬†love the idea that someone somewhere will have the right answers to all these decisions. But sometimes I don’t want advice. I just want, sometimes, the response to be ‘gosh, that is absolutely totally shitty’. And I shall agree. And then we can move on to talking about what happened in Eastenders or what I’ve got in for dinner. Sometimes there are no solutions, only agreement that this occasionally totally and completely SUCKS.

It was just this week I read a blog of another mother who has a child with a disability. She talked about acknowledging her own grief as ‘perpetual grief’. This resonated with me. It means this will not face a conclusion, it will not have an end. The grief of the loss of what should have been will never go. It’s there, all the time. That hit the nail on the head.

Things should have been different. Things shouldn’t be like this. I shouldn’t have to look at special schools or fight wheelchair services or dodge NHS politics or have a meeting about the life expectancy of my son. I should be chasing them up the stairs to make sure he’s done his homework….but oh – that’s not our reality as he can’t run and he can’t write.

So, I shall make sounds of apologies to anyone who came here to read yet another positive spin on life from the Smith house. This one wasn’t so rosy. But I shan’t apologise for my inner thoughts and my current escapism to the bath. We all need time when we escape, eh? It doesn’t mean I love them less, it means I get out this slowly going-cold water to carrying on loving them more. And, to be honest, you’ll never find anyone who COULD love them more, and that’s because of their complexities, not in spite of them.

And cue – knock at the bathroom door – guess that’ll be tea time then. Time to cook them something which their difficult swallows will allow and avoid not wanting to drink excessive amounts of gin when they scream blue murder that there’s something remotely green on their plate. I do my best. Sometimes I balls it up, but I try and I guess that’s all any of us can do.

So less than rosy, but hopefully honest. It’s ok to say you aren’t ok. At the moment, I’m not ok, but tomorrow is another day, and I will be fine. To any other mummy or daddy that finds themselves in a ‘special needs parent’ bracket, I hope you take that message from this. Just that you are doing fine, even if it feels you aren’t, and you shouldn’t be sorry about that.

I am sorry though that maybe I’ve¬†rambled on, in 1900 words with no pictures. Perpetual grief is in your heart and your head and your veins. ¬†There isn’t a picture that depicts ‘perpetual grief’ here – equally there is no picture that displays me in the bath. This isn’t that kind of blog. ūüėČ

Be happy x

 

 

 

Parents like me.

I had a tattoo done last week. It’s on my left foot. It’s green and swirly. It’s artistic and clever and it’s there to remind me of how proud I am of my boys. The emblem of the cerebral palsy ribbon, in the colours of ¬†‘cerebral palsy’ green, encompassing two tiny love hearts, representing¬†two little boys who took my own heart 6 years ago.

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I’ll be frank. It stung a bit. Once she started ‘inking’ me, I remembered how the one on my right foot made my eyes water a few years ago. To be honest though, the physical pain of the tiny needles bore nothing on the emotional pain of what my new body art represents.

People will wonder why I had it done. Often tattoos mean something significant, sometimes they are just because people like the image. I often think it’s an extension of personality or a nod to ¬†signify something sentimental. This one certainly is (unlike the one which I frequently¬†forget¬†is on my lower back, mainly as I had it done under the drunken¬†influence of two friends when on a girls weekend in Dublin many moons ago).

This one is there for all to see, though maybe only those in the know, or who know me, will truly appreciate the beauty and the meaning behind the art.

For cerebral palsy now has come to define many areas of my life. As much as it angers me and I have hatred for the¬†pain it causes, it has brought me much to be grateful for. It doesn’t on it’s own define my sons, but it certainly is a huge part of who they are. Because of it, they have triumphed in bravery. Because of it they have overcome hurdles. Because¬†of it they have taken a different path in life. Because of it they have met many people and touched many hearts. It shapes them and is part of them, yet they are much more than their¬†condition alone.

Cerebral Palsy arrived without invitation. Like a gatecrasher at a wedding who ruined a time of celebration, it walzed into our lives shamelessly and tried to take hold. For a long time, it did.

It ruled me, and as much as it has shaped my twins’ lives, it has moulded mine too. I’m a different kind of mother now it’s here.

I’m not the parent I thought I’d be. I’m not the mother who my 7 year old self role-played when playing dolls in my pink bedroom as a little girl. I’m not the parent my friends are or the parents my own are to me.

It was only today in a telephone conversation that I was referred to as a ‘parent like you’.

What does that even mean?¬†I thought about it after the phone call had ended. It was well intended, meaning the lady understood that things in life were difficult at times for families like my own. Just to get out and¬†experience family time, takes a huge amount of effort. We can’t just ‘jump in the car and go’. The equipment, the stuff that’s required to be out the house more than a couple of hours, the time to plan ahead – never mind the looks and stares you get when you get there whilst just trying to enjoy a normal day out. (I still try to fathom if these looks are ones of pity or at times, genuine shock as if my disabled children resemble aliens the general public have never seen before. Don’t get me wrong, I’d stare if an alien was at the zoo next to me, but seeing as it’s not an alien, it’s just another human (albeit one who’s legs and voice don’t work well) the stares aren’t overly welcome).

I guess a transformation of a ‘parent like me’ needs to be the growth of a much thicker skin.

The phrase ‘parent like you’ took me aback. But in many ways, she’s right.

I am in a different club. One I didn’t intend joining, but one I was registered in without my permission. I’m not a ‘yummy mummy’ or one of the cool parents at the school gate. I’m not a parent who has after school clubs to stick to. I’m not a working mummy as my career left me as quickly as I was given a one way ticket to Carersville. Nor am I a stay at home mummy. My ‘working hours’ exceed that of a ‘double shift with overtime on no pay and not even a tea break’ kind of a job. My hours are taken with therapies or chasing doctors or appointments that have been changed or allocated – in many a case, when I’m already due with the other twin in a different department of a different hospital. I’m not a mummy who attends normal parents’ evenings. I go to the school office to update then with medicines and Dr’s reports, rather than to consult lost property. I’m the odd one out.

Inadvertently, where motherhood can bond you with others on a similar path, together all consulting milestones and child achievements, mine has led me to a land of loneliness. I used to have friends at a special educational preschool whose children has similar conditions to mine, but I’m only in contact with a couple now.

Interestingly, one of them is going to officiate at our vow renewal (she’s the coolest and loveliest priest around). Cerebral Palsy may have taken my expectations of parenthood, but it hasn’t ¬†claimed my marriage. It can whistle for that bit.

The other of my ‘disabled world’ chums is Helen. My soul sister, who not only shares my love of prosecco, but can see through the lines of our life challenges. We support each other across the airwaves as geographically a county keeps us apart. The ability to connect with someone and for them to understand, when you don’t even need words to deliver how absolutely crap things can be, should never be underestimated. Living a similar life, underpinned by a similar journey, sharing an unknown destination. Every ‘parent like me’ needs a Helen.

I’m extremely lucky to be surrounded by many other friends and I’ve¬†been blessed to never be deficient of a girl tribe. So many have my back and would freely listen to my ¬†worries about things, but I’m not an overly good sharer. I’m a bit of a bottler-upper, finding it far easier to put my thoughts into writing rather than give out an emotional tsunami to my much loved crew. This probably infuriates the hell out of them, but they are my normal. Whatever normal is and once was for me has gone, yet these girls are my lifeline to things beyond my four walls or clinics or hospitals. They are the people who can tell me about their working day, their office politics or their client dramas, ¬†what they saw on social media or their child’s latest saga. Grounded by a normal life, bonded just by friendship, the ‘parent like me’ can touch into their world which only runs parallel to mine.

As I sit here and type, having just given¬†more drugs and turned one boy over, I await for the other¬†one to wake as he does several times per night. Sleep isn’t a familiar friend. I think fondly of my true friends and how important they are to me even though they are not a ‘parent like me’. As much as people want to understand, true understanding of the complexities of our life can never be achieved unless you live it with us behind our front door. My friends see more to me than the red lipstick and love of sparkly objects or shoes that may be superficially evident to most. Where others may see me getting on with life, my true friends see me attempting to cope with this roll of life’s dice and act as cheerleaders and lionesses should someone say something inappropriate or offensive. (Some with a loader roar than others ūüėČ). ¬†For those who remember it, they aren’t my bodyguards they are my ‘She-rahs’.

But true understanding can never be reached, only empathetic comprehension. How can anyone ever really understand if you haven’t walked the walk? Deep understanding can only ever be reached if you sit opposite the consultant like I did, listening to the words like I did, and then being given a title of ‘parent like you’.

But the message is, that’s ok. It’s ok not to completely ‘get it’ just like it’s ok that quite often I really don’t want to talk about it. Having friends who support you is the important thing. It makes the island you are now living on feel like you have frequent visitors who really want to come and see you. Then you wave goodbye until the next time, and you are left alone with your thoughts once more. Sometimes the thoughts are sad. Sometimes they are happy. That’s life.

As much as I maybe didn’t want to be a ‘parent like you’, I am. Last week without really realising it, I stamped myself with a symbol that I really am a part of that group and actually, it’s an unexpected membership I am truly proud of.

Winging it.

Even at 38, I sometimes wish I was just 6.

6 seems easier. People tell you what to do when you are 6. They look after you. They feed you. They buy what you need and take you places you need to go. They make the most important decisions for you. Admittedly, a 6 year old may see important decisions as what sweets to buy at the corner shop, but I mean the life decision stuff. All that gets left to other people. The people, mainly mum and dad, who have your best interests at heart.

Then the growing up happens. Before you¬†know it, as much as you don’t feel ‘adult’, the years have passed and it’s¬†you that is making those decisions for your own 6 year old. How can that be right when you don’t feel old enough or able enough to do that! But at 38 I’m wayyyyyy old enough – but this doesn’t mean I know what I’m doing.

All of the above bears relevance to most people just travelling through life, it has nothing to do with having children with special needs. It’s just part of life – having to make decisions where you just don’t know what to do.

However, when you are making decisions for your children things seem to be harder. That overwhelming responsibility for the welfare and happiness of another is huge. You play that internal¬†mind game with yourself….but mainly it’s overridden with the heart wrenching feeling of ‘I hope I’ve¬†got this one right…..’

Then you have to sit back and wait.

Recently, I had to make a decision for Zach about his schooling. Over the last few months the demons of meningitis have shown their true colours and as much as I like to find those demons and bat them away from my baby boy, it turns out my weapons aren’t fully destructive. His learning disability and just the fact he sees the world differently, including finding learning incredibly difficult, means we needed to make some changes.

I don’t take decisions lightly. I think, assess, ponder, worry, pick apart and consider the bones of everything. When it comes to big things, I seek advice from those around me. Of course family, but in this case the many professionals that make up ‘Team Zachary’ and the huge individual professional contributions they each make. Then I ponder it some more. Eventually I then reach a decision of what to do. It’s a process!

What is interesting though is that more often than not, it’s the decision that was the one my gut told me to do in the first place. Gut feeling has never let me down yet and I hope it doesn’t this time round.

So, from September Zach will repeat year 1 and not progress to year 2 with his brother.

Having twins in different year groups will be interesting! Better invest in some good trainers to run from one classroom at pick up time to the other.

Zach doesnt¬†really understand it all. He only knows he’s staying with his teacher and will get new classroom friends. He’s confused¬†where his other friends are going and why they won’t be with him. It’s hard enough making a decision but when the little fella has no comprehension or ability to understand the reasons behind it all, I just feel like the ‘bad guy’. But deep down I know this is right. My gut told me. It’s a shame though my gut can be so right but be bloody painful at the same time.

Things will be ok. Zach will be ok. This is the right choice and I have the most amazing and brilliant school where I drop Zach¬†every day and they nurture him to his core. I trust them implicitly. His teacher is incredible. ¬†I can’t speak highly enough of them. I have to give him this chance and we’ll see where this chapter takes us. It’s the right thing to do.

I can’t fix everything. I can’t solve everything. I often think that this is the biggest lesson I may have learnt over the last few years. As a parent, it’s your job to keep the children safe, to protect them and help them in every way you can. I do all those things but I can’t change the past. That ‘oh I wish this was different’ devil is once again sitting on my shoulder. I can’t change what happened or turn back the clocks. The meningitis¬†has robbed him of so much and it changed the pathway of his life. I can’t fix that.

What I can do is try to make that pathway easier. That is what I’m doing in making this decision. It’s made, it’s happening and I’m doing my best. Isn’t that all any of us can do?

Although¬†my gut tells me yes, I very much feel I’m wearing my best ‘Winging This’ ¬†t-shirt right now. Why isn’t there a handbook for this particular junction we find ourselves at?!

Things were easier when I was 6. Growing up is hard.

Peter Pan got it spot on.

 

 

 

 

 

 

I can’t solve everything as much as I try. I can’t fix everything