Sitting in ‘the seat’.

Hey there, newly diagnosed self. I haven’t spoken to you for a while. Remember when we touched base a while back, I spoke to you to reassure you as you sit there in that ‘seat’- we are a few years ahead of the turbulence you’re experiencing today. I’m like a human crystal ball to you….if only I could actually reach out and tell you that as it stands, despite you thinking your world has collapsed, you’re ok.

I don’t know why I’m choosing now to reach out to you again particularly. This week hasn’t been that great, so whilst I would like to tell you I’m riding around on my unicorn in my fluffy pink world of perfection – things aren’t that perfect. Don’t get me wrong, I guarantee that what I’m feeling today can never be compared to your emotions right now – but honestly is the best policy I think….and today, at day 2,358 of their lives, we faced two doctors’ conversations which changed our lives yet again.
This may make you scared as to be honest, I’m a bit twitchy too. We’ve had plenty of blips along the way….with Zachary particularly. (The neurology situation you will go through following his MRI in 2014 is a real ‘smack you in the face’ sod but you get through it with a lot of tears, prosecco and a damn fine family and kick-arse group of friends).
Since then, the blips have seen you bobbing along, sometimes with your head under water and then pulling it back, saving yourself from drowning to bob along again.
That feeling of being overwhelmed is huge, when you feel life is spiralling and you can’t claw your way out – but guess what – those long glittery nails you have make you excellent at clawing. I always knew glitter was a very positive thing.
This week we had two lots of news. Medical news. Two appointments for two twins.
Neither appointment went that well, and for the first time in a long while (actually since that MRI in 2014) that spiralling feeling got hold of me and I was flashed back to the very seat you’re sat in now. The seat is one which sits you opposite a doctor who’s delivering news that you would never choose to hear, and the seat which then propels you, similar to an ejector seat, into fear and uncertainty which you wish would just go away and leave you alone. That seat sucks.
So yes, I’m really identifying with you today, newly diagnosed self. For a long while, I haven’t experienced the emotions you’re going through right now – but this week they came flooding back like unwelcome visitors. It’s hard to ever explain to others how that news feels. Many of my friends now who have disabled or poorly children have sat in that ‘seat’ so you won’t be alone, just as I’m not alone now. If only you could see how many people love the twins, how incredibly special they are to so many, how you have friends who are like your blood family, and how your own family have been shining stars of light at every step of the way. Yet, today, once again, I was reminded how even when surrounded by people and doctors and whoever, the ‘seat’ makes you feel incredibly lonely. Like you’re the only one in the world who has to process what you’re hearing. How your heart just hurts and that’s a very sad and isolated feeling because at the end of the day, you take them home, shut the door and it’s your responsibility to bat away the demons of the new medical news and cope with it for both you and for your most precious boys that the news affects.
But, there is something that is important to note here. Something called progress, and that progress can be developed alongside strength and tenacity and personal growth.
Newly diagnosed self, I see you – I see you just falling to pieces, yet your strength will build and you will become the biggest coper you’ve ever known. For I, this week, was given news that is so scary and will take another tiny piece of your already broken heart which has been patched up numerous times. I often think that my heart must now resemble the likes of a patch work quilt.
Yet, this week, instead of crumbling, I got up again. We followed that war time advice of keeping calm and carrying on. Whilst I sat there thinking ‘I could so easily freak out like now’, I didn’t. You didn’t freak out, though you did get upset and were so sad – but you didn’t freak. Now, this is progress. You also didn’t stab anyone who has complete lack of perspective in life in the face with a fork. (Note to everyone else’s self -this has never happened, only something that dwells but never surfaces from the depths of my dark mind when faced with plonkers).
Instead of hiding away under the covers like you are now, I put my slap on and went out with two friends to talk it through. Never thought you would be that logical, eh?!
Note to yourself: red lipstick will be as helpful to you as the glitter. (Black patent Laboutin heels would also be helpful, yet as yet, these have been unachievable. Though as I tell the boys, never say never).
Instead of spending my time nurturing the ‘what if’ monster, this week I’ve kept him at bay and am even writing about it. (Your dear friend will soon say to you – roughly in 2012 – that you should start blogging, and you ignore it, shamefully. Yet after a while you find that writing is extremely therapeutic and whilst you will never understand how others will be that interested in what you ramble on about, these ramblings are healing).
Note to our joint future self: keep writing, it’s cheap therapy.
So, whilst the news has been crappy and the fear has been strong, I wanted to say to you, newly diagnosed self, that you and me have moved on. There will never be a time when that ‘seat’ is ok to sit in and who knows if yet again one day we will crumble, but currently, I’m dealing with this furniture in the best way I can. You, newly diagnosed self, will get stronger and at times, considering what we have to cope with, I wonder if our bones are actually made of steel. Steel bones but with a marshmallow heart. (That bad boy is still soft and at danger of anything that threatens it).
Life keeps throwing us these curveballs but I wanted to tell you, you can cope and are doing ok. Don’t get me wrong, I’ve cried another river, but the main thing to focus on is that at least I didn’t drown.
xxx

If life gives you lemons…

It’s Thursday today. Its been a funny old day. A day which deserved a blog of its’ own.

Tomorrow, being Friday, will bring the last day of the Easter Holidays. A day where I will look back at two weeks with the little Smiths and through this chocolate fest of a break from school, can say we had fun. We have played, coloured and baked. We have had pyjama days and overdosed on Peppa Pig repeats. My skills at keeping within the lines in colouring activities are vast improved whilst my feet bare more scars than usual from Lego bricks hidden within the shag pile rug.

I’ve watched our Easter Holiday, generally from within the four walls of our lounge, be quite different to those of friends (or people I know who I’ve stalked on social media). You see, school holidays are very different when you are a family including disabled twins.

This break, Mike had very limited time off work. I’ve not yet reached the point when I move our carers in 24/7. So this means my ability to take the children out is quite compromised! I yet have no mummy super power to grow several pairs of extra hands (that skill must have been hidden somewhere with this elusive magic wand I’m searching for). I can’t run after a busy Zach and push Reuben’s wheelchair and carry all the equipment and medicines and a ball or a picnic all at once. Most importantly, I cannot lift Reuben’s wheelchair independently; even Thor would struggle. So, more often that not, we stay home.

Don’t get me wrong, we don’t let disability have us under the thumb. When I have a carer or unsuspecting relative by my side we grab that chance at the big wide world. We aren’t strangers to the giraffe enclosure at the zoo or the fish at the aquarium. But days out when you have just Mummy to play with are far and few between.

So, this holiday hasn’t been full of LegoLand or swimming or ice creams at the beach. It is also a million miles away from trips to Europe or far off Caribbean waters. (I can’t even get him in the car – I’d have no hope on a plane. But to be fair I think our sun seeking tropical days are long gone). Our days have generally been making our own fun at home, wondering if I could possibly risk a vertebrae and launch the wheelchair into the boot, to get a change of scenery. I subsequently considered this far too risky in terms of any sort of Health and Safety so again, we stayed home, and opted to push him to the local bakery for a sticky bun instead.

Holidays aren’t such holidays for us as the general routines of care continue whether we are on ‘holidays’ or not. Hoisting and physio and appointments and drugs and therapy and sensory needs and changing and lifting and feeding and emergencies and worries and doctors. Carry on regardless.

It is however fun to have the twins at home, as well as Harry of course, but our home based activities are conducted because it’s difficult to do much else, rather than being an active choice. We therefore do all the painting and ipad games and colouring that one can manage, amidst the sensory lights, bubble tubes and increasing numbers of equipment pieces that form part of our our family furniture.

Obviously, this wasn’t what made this a funny old Thursday. The above is the just the norm for us, sadly. However, today was a thursday when two things happened and two people touched my heart.

One of those people is someone local to us, in our town and whom has, with his wife, become our friends. They are NICE people. Kind people, who seem to be well known and well loved by many. People who have been through their own share of heartache, yet remember others and reach out. Just bloody nice people. Running people…

A while back Steve approached me and said ‘I wanna help the twins’. I was listening. I never cease to amaze at the kindness and generosity of others when it comes to my boys. He wanted to use his skills at running (and he is one of those talented amazing runners who is like an incredible machine) and run the London Marathon. For my babies. Is that not plain awesome? Yep, totally.

I explained how I needed to convert my vehicle. I explained how the lift in a vehicle would save my back and Reuben’s dignity. I explained how he has vulnerable hips and needed surgery and needed to travel now in his wheelchair and not his car seat. I explained how we needed a bigger space to accomodate everything we need to take out with us. I explained how a conversion would mean I could take them out on my own, like other mummies. I explained how the right vehicle would transport the twins to different experiences in their childhood. I explained that just getting into a car so many can take for granted but to us it’s a mission. I explained this would transform our life as a family.

Steve listened. Then he explained how he was going to run London to raise the money to make the above happen.

He has been raising money for the last few weeks. He is doing great. Huge thank yous and Reuben high fives are coming his way. But along side that fundraising is the training. The running, the time away from his family (Hi Amanda!) to train, the effort, the crappy weather, the dedication, the aches, pains and nipple trauma! I’ve been a water stop for him on a long run and that training plan is no walk in the park (literally). That’s some serious shiz. Then there’s the pressure of London and achieving his time to fulfil his target. I’m not in with the running lingo but I understand he wants a ‘sub3:30′ which to me sounds like bloody hard work as to be honest, if I attempted it I’d be happy to finish it in 3 days.

We have supported him the last few weeks, but today (funny old thursday) I realised something. Steve won’t let this lie. He has a long long way to the fundraising target and he is pushing everything he can in the training and the fundraising for one reason. He didn’t have to take this on. But he did and he made a pledge to help my boy. To open up his world. I have today seen the passion in his quest, to try and achieve this, to let this happen for Reuben and to conquer London for himself. True dedication that will be a life changer for that little boy asleep under his sensory lights right now.

By something many others will see as simple, we have been given an opportunity here. We have the potential to really see something different for us and our way of life…which is where my other thing on this funny old Thursday came in.

Today, I went to my Auntie’s funeral. She was such an incredible woman. A lady who had led a full life, a lover of family and fun. Always with a zest for life and a twinkle in her eye she had a fulfilled time in her 96 years. She lived through the War years and saw much personal grief through the loss of her husband and two children, yet she embraced life. I sat in the chapel and through eulogy was reminded of the many reasons that made her amazing and why I loved her. Not just that she had the best smile and giggle around, or that she taught me to play pontoon that would stand up well in any casino, but that she took life by the hand and made it her own. God bless.

And that’s what made today poignant for me. I learnt a lesson at the very last point before we said our goodbyes from my wise auntie – take your opportunities and make life your own.

Through Steve’s mission to achieve this for Reuben he is giving us an opportunity to make the twins’ life even better than it is already. To get them out there. Get to see more of what’s out there rather than just, as much as we love it, home.

Good luck Steve. I really hope you personally fulfil your dreams in London and your dreams for Reuben. I in turn promise you that if you succeed in this mission – Reuben’s Adventure of a Life Time – I will give him that adventure of a life time. I will seize that opportunity and make life our own.

What do they say? ‘If life gives you lemons, make lemonade’. Well, because of two very special people in my life on this funny old Thursday, our lemonade just got a whole lot sweeter.

 

 

 

 

 

 

 

My promise.

Today is World Cerebral Palsy Day. This is a day when people can raise awareness of the condition, when myths can be expelled and maybe we could learn a thing or two. I never knew a lot about CP before my twins were born, and certainly I cannot profess to knowing anywhere near everything now! There are many types of CP and every person experiences it in their own individual way. The twins’ life with CP is just one tiny fleck of a huge umbrella of a condition that impacts a huge amount.

I have learnt a lot along the way this past 6 years, but I have a huge amount yet to learn and to take on board. To excuse myself for using such a cliche, it really is a journey that I’m on with my little guys. A massive learning curve in which you get a sociology, psychology, biology and PE course along the way! Right from the start you get to become an expert in your own individual field, knowing your baby’s subject matter in the greatest of detail, helped along by the medical professionals that guide your path. However, you become the person who knows it far better than a text book could ever teach – mainly as you have the professor of it all living right there with you 24/7. The biggest teacher for us has been the twins themselves.

What have you two taught me the most? What has been my biggest lesson so far? This is a very simple question to answer. At the start (and to be fair, also continually along the way) there are a lot of people who told me how hard it would be. They informed me what you guys may never do, or achieve, and how things would be so very, very different.

Well yes, things are different. There are tricky days when you feel lonely and frankly, terrified. There are days when you feel you are climbing a never ending mountain. You are hoping that the summit will come, yet in many ways you know even then, there are challenges the other side. There are days where you’d love a duvet day to hide yourself from your worrying world. BUT, amidst the dark days there are far more days of light. Days which are easier to rid yourself of that duvet.

Because….what no one told me at the very start was how much joy you would bring me. How much you would transform and contribute to my life in the most positive of ways imaginable. How you would enter my world and like a whirlwind change my perspective on life and let me appreciate the most fundamental yet wonderful things. No one told me how I would become the most protective of lionesses and fight with an armour fit for a warrior to get you what you needed to be your most beautiful selves. No one warned me that this life doesn’t just come with heartache, it comes with a heart that grows so huge out of love and warmth and pride I could burst. No one told me how rewarding and fulfilled I would feel. No one told me how much love you would give me back….and how incredible you would become.

No one told me it would be ok. It’s more than ok.

So, on World Cerebral Palsy Day, I want to thank the twins for being the best (and most awesome) teachers I have ever had. In turn, I promise to be a model student.

I want to share something again that I wrote a while back, which seems appropriate for today. It’s my promise to my twins.

 

‘From the beginning to the end….’

I was your home: as you grew into two tiny babies, sharing the space before you were born. My commitment to you started then. With every single scan, I willed for you to still be there, fighting the odds, your little hearts beating. I was your pin cushion for all the injections and drugs that would keep you there just a few days longer…..I feel the guilt my body didn’t let that happen.

I was your companion: in the first few months, a vigil at your incubators. Sitting between you, looking at you through the glass, perfection in tiny form. I hope you didn’t hear my tears as you became poorly…

I was your hope: as you had a difficult start to life. When the doctors words were full of doubt, my hope for you stayed alive. We won’t ever be without hope, as that is what keeps us ticking over.

I AM your belief : that with all the help we give you, you will be happy and achieve what you are destined to. When I am knocked over by bad news from one of the many professionals we see, I get up again, eyes cloudy with tears. You give me the reasons to get up again. You teach me what’s important in life. I don’t sweat the small stuff.

I am your strength: though it sometimes feels my legs may buckle with the worry and my heart hurts, we carry on – together. I’ve had to pluck courage and strength out from somewhere I never knew existed.

I am your protector: when people stare at you or say things that aren’t very pleasant, I shield you. I’ve grown a suit of armour that protects us all. I fight for you when things must be done, must change, are needed. I will win your battles.

I am your voice: you cannot speak the words but your eyes tell me what you think. I am your interpreter as I understand your sounds which the rest of the world cannot. You speak through me.

I am your message: that disability will not stop you, even if it means we have to do things a bit differently. To me, you are perfect the way you are though I would take away your problems in a heartbeat to make your lives easier. I wish I could have your struggles instead.

I am your nurse: to detect your pain and every day give you your drugs. I am your clown as I make you laugh to make the medical stuff a bit more fun.

I am your biggest fan: when you do something they said you’d never do. Which is quite often. You amaze me. Yet my heart breaks a tiny bit more every time I think how hard things are for you and how life should’ve been. The ‘what if’s’ eat me up.

I am your provider: to give you everything you need and do the things you can’t do for yourself. I will wash, feed, change, clothe and play with you. I will walk a thousand marathons if it gets you what you need. You will never be without.

I am your comforter: through your pain, upset and frustrations, day and night, I will hold you and wipe your tears. I will cry with you.

I am your admirer: for your spirit and determination and your beautiful faces. I love you.

I am your mummy: I will always be there for you. when the time comes when I’m not here any more, I will watch over you..

….and I will become your Guardian Angel.

If you can’t say anything nice…..

I’m gonna tell you a little story. It’s not one from the age of beautiful fairy tales or a favourite bed time story. It’s not a classic tale from another era or a traditional folk tale or fable. This is reality; real life. It’s something that happened to me and to Reuben in our very own community and one which was very poignant in our own world.

On this particular day, I chose to pop to Tesco as I needed a few things, mainly for lunch boxes. It was a sunny day, so I put Reuben into his wheelchair and off we went, walking through our local shops, chatting together about what we needed to buy.
Fairly soon after you enter the supermarket, there’s the bread and cakes on the left hand side. Reuben and I stood there looking at all the produce, as I pondered what would be best to buy – what cake wouldn’t melt and squidge on a warm day when Harry took it on his school trip. Reuben insisted on chocolate cake, but as he would opt for that for breakfast, lunch and dinner, it would be surprising if he considered anything else!
There was a lady standing next to us, to our right. I was aware she was there but it wasn’t until I felt her intense stares at Reuben that I really noticed her presence in more detail…..staring. Let’s be honest – since the twins have been born we’ve had our fair share of ‘starers’. I’ve become fairly accustomed to the side glances and whispers. In itself, that’s quite an accomplishment to say that, as in the early years I lived in dread of going out with the twins and all their equipment. We got a lot of unwanted attention when Zach was on oxygen as I lugged his little oxygen tanks around with me…sometimes people acted like he had the bloody plague and would look at his tubes as if they’d seen a disfigured monster in the pram rather than a baby who’s lungs weren’t tip top. Harry frequently asked ‘Mummy, what are they looking at?’ to which my reply of ‘just how awesome you are’, seemed a bit of a cop out. But I think as a special needs parent, you develop a very useful skill of thinking on your feet when you least expected to have to.
Back to that day though. This day was a bit different, as the lady standing next to me bent down to Reuben and from her crouched position, she pointed at his legs and said ‘what are these things?’
Note here, she wasn’t completely delusional.
She wasn’t asking what the concept of limbs were when she had two legs of her own. She was referring to his splints (or for those who want the accurate name, his AFOs – Ankle Foot Orthosis). He wears these to optimise the position of his ankles and feet, basically. They aren’t ugly; they aren’t huge contraptions. They are discrete, made of plastic and covered in footballs.
It took me by surprise a little that she was so forward, but I answered her question. Let’s get this straight, I am a parent who never minds questions. I like to think I’m quite approachable. Not every parent of special needs children sits in this camp, but I’m quite an information sharer and have come to the conclusion that by answering questions, it can educate and teach people things they may not know. I think you quickly learn who is questioning because they want to learn and are truly interested, as opposed to those who are just plain nosey and need some new material for their weekly gossip sesh. For some things need to remain private. Reuben and Zach have complex medical issues and even as their mother, it’s not my place to share these personal details with the world. I wouldn’t expect a stranger in the queue in Costa to tell me their diabetes regime or someone at the park to tell me their Irritable Bowel history. However, in general terms of conditions like Cerebral Palsy or Chronic Lung Disease, I have never had an issue in teaching people about my children’s conditions, answering their queries and questions. I think it can only empower people to know more and truly understand the concepts – which in turn can break down barriers to disability. It’s much harder to be scared of things when you understand them. We still live in a society in which although there’s been leaps forward in disability awareness, it can still be a taboo subject at times and some people are nervous around what they don’t know. If we don’t talk about it, how will this ever get better? Scope, a national charity, have a big campaign called ‘end the awkward’ which discusses just this.What happened to us next that day was possibly the most awkward thing I’ve ever experienced.
Having had the answer to her question, the lady then turned to Reuben, face to face at his level, and said ‘gosh, if your mummy hadn’t have told me, I’d never have known you were a mong’.
Yep. You read it right.
Unbelievable, yes? No. True as day, she called my son a mong. What do you do with that??
Now, I’ve had a long time to really try to pick the bones out of this. I’m very open minded. As a midwife you have to be! I think having children with additional needs has made me even more open minded to the world and to the complications life can bring. It’s also made me appreciate the world more and not sweat the small stuff.
This wasn’t small though was it. This was huge.
I’ve tried to think, and I actually feel it’s right, that this lady probably came from a generation where words such as this were well used then. Only time has made them redundant and publically perceived as offensive. Which they are, by the way.
I was so incredibly offended, though at the time in reaction I stood there doing a very brilliant impression of an open mouthed statue. She told me it’d been a pleasure to meet us and scuttled off. (I can confirm here and now, that feeling of pleasure wasn’t mutual).
Did I cry? Yes.
Did I buy the cake? No.
Do I think she was intentionally trying to be hurtful? ….no.
I think she, in her own way, was interested. I don’t think she was being intentionally horrid. (I would like her to tell me what she thinks ‘mongs’ look like though). This was a classic example of where I could have changed something, I could have educated her that she can’t really say that any more. What ever your opinions are on free speech and political correctness, I can pretty much assure you that it’s not a pleasant word to use. I kick myself that I didn’t, but at the time I was so astounded and thinking ‘what the hell just happened there?’, that I missed that window. (For the record, Reuben obviously found her more irritating that she was interrupting our cake selection and wasn’t aware of the enormity of what just occurred).
I debated about whether to write this blog. I know my friends and family will read it and be over protective about our feelings and be really cross. But it’s important we do talk about it. Let’s follow Scope’s lead and End that Awkward. Let’s talk about what’s ok and what’s not ok.
So, it’s probably important to note that this hasn’t been the only time we’ve been on the receiving end of someone’s unthoughtful tongue. So far, I’m lucky in that the twins have never been aware of what has been said. I probably wouldn’t be as understanding if they had I guess, and sadly I’m sure that day will come. But calling some one a mong is never ok. Also for the record, there are other words which are used in daily language that make my skin crawl and my toes curl when I see or read them. Mostly, just in conversation without any intent of offence or harm. ‘Retard’ is my biggest bug bear. It’s never called for, or is ‘Fu**tard’ whilst we are on the subject. Actually, whilst we are at it ‘spaz’ is another. ‘Crip’ (which I’m assuming is originating from cripple), closely follows. I honestly think people don’t mean to use them harmfully and they probably have done it for years, but I can guarantee the feelings that those words evoke are really quite awful and can go a little way into the realms of heart breaking. These are NOT ok.
But being insensitive in name calling isn’t the only thing that we have had to endure as part of this life we lead. Statements and presumptions can be just as hard to cope with. Some of the classics we’ve had include:
‘Ah bless him, is he gonna die soon?’
‘Do you think it’s right you being kids like that out in public?’
‘Your son is really blessed my daughter wants to be friends with him’
‘There’s far too many special needs kids allowed around here nowadays’
‘I’m sure there’s not much wrong with him really, Drs make up these conditions nowadays’
‘Kids like that shouldn’t be allowed privileges like blue parking badges’
Or, the piece de la resistance : ‘He’ll be a burden on you for the rest of your life’.
(Thanks for that).
The thing is, whatever. I have learnt that ultimately all I can do is tell people (when I’m not standing gaping in shock) about how things really are from my perception and hope they listen and take things on board. Even better, I hope we get to a point where the twins can tell them themselves.
Interestingly, it’s not children I ever come across this with, it’s adults. This is where I think it’s a valid argument that half the time these things are said from a previous generational context rather than a want to be cruel. Of course, that does happen at times but it’s important to note that these comments are often in the minority. The majority of people I meet are delightful, kind, generous and courteous. For every one I meet that had questionable intention, there’s another 99 who I’ve been so glad crossed my path. Let’s face it, if we didn’t believe in the potential and the beauty of humanity what sort of world would we live in?
This saying….
image
I’d like to think that for the majority of time I try to apply the above quote, yet sometimes you just can’t help being affected. I think what upsets me more is thinking people just don’t see what I see. People may look at the twins and see a wheelchair; they may see someone who has difficulties, yet they don’t see who they truly are. To many, disability defines them, but it actually doesn’t.
They see disabled boys, I see my children with beautiful souls. I see children who smile in the face of adversity. I see courage. I see children who have had to cope with (and coped far better too) more than the average grown man. I see children who laugh a lot. I see caring, loving children. I see children who accept yet then go beyond their own limitations. I see children who are hilariously funny and can brighten others’ days. I see children who are learning to read. I see them exist on chocolate cake (if they got away with it….). I see children who are flourishing under the wonderful school they go to. I see children who are relishing life and enjoying every day surrounded by more love than surely is possible. I see my children. Just children like any other. Just with added layers.
So….if that lady is reading this blog, I actually want to tell you I forgive you. I know you probably never knew your words were haunting me and I bet you never meant them to. But I hope you can learn from it, and realise there’s so much more to special needs children than the labels society forces upon them. Or words that individuals throw around. For essentially that Disney rabbit was right. ‘If you can’t say anything nice, then don’t say it at all’.

Guilt is not my friend.

I don’t really know how it’s happened that the twins are now 6. Six years have passed me by in a blink. In so many ways, it feels like I don’t remember my life without them. In other ways it feels only yesterday I first set eyes on them whizzing past me in the delivery suite, having just been taken from my tummy where they were warm and cuddled up together, yet suddenly were separate in little plastic boxes on their urgent journey to the neonatal unit. If you’ve never seen a travel incubator, it’s safe to say they could rival time travel devices in their appearance, or even space flight devices – my babies being like little tiny spacemen in their rockets.

Their entry to the world was not a typical one. It was an early one, far too early to allow the normal delivery scene I’d facilitated for so many others, of baby and mummy becoming two after so many months of being ‘as one’.
For a start, they surgically arrived. In the absence of a labour there was a scalpel and a surgeon who decided when they entered the world. (To note, that was 16:16 and 16:19, Zach and Reuben respectively). Where mummies would reach for their newly arrived bundle, and generally cuddles come immediately, this didn’t happen with us. I did reach for my bundles, yet from my surgical table with the medics still working on me, my babies were far out of reach. The rescuscitaires where they lay being worked on by the vast numbers of neonatal specialists who were hosting their first moments in the world, were out of my reach and out of my sight. All I could rely on was my own patience and senses as I waited for their cries to alert me they were here, alive and kicking.
The theatre was full of people that afternoon, all there for the benefit of the three of us. It was like a party that I never really wanted to be at. I could have done with a strong G and T at that party to get me through it, I can tell you. It wasn’t a whole bunch of fun. In the absence of this alco-tipple, I settled for a spinal block and that got me through the proceedings without too much physical harm. (Emotional harm, well that’s another matter entirely).
I saw them pass me in the blink of an eye, bit like the last six years really; it was another 36 hours before I first set eyes on their faces. In the delivery room, I saw only the tops of their heads and the tubes that helped them breathe before they went to settle into their new home in NICU. I was given a Polaroid photo to look at through the night. 36 hours later I was well enough to be allowed to visit them and could really appreciate how tiny and delicate, but truly beautiful, they were. Their tiny bodies were no way in correlation to the size of their huge hearts homing their huge amounts of bravery, which would guide them through the heart breaking health journeys they were about to face.
Those early days came with a huge amount of emotion for me, (not just hormone induced). Guilt I couldn’t keep them safe inside for longer, guilt that I was clearly rubbish at being pregnant, guilt that everything they were going through was my fault. As a midwife, I knew that was ridiculous, yet as a mummy (any mummy!) guilt seems to come with the territory. The particular territory at that time saw the babies get poorly over the next few days and the amount of procedures that Zach had to go through particularly, made me feel the worst feelings I’d ever felt. When the bad news kept coming, I retreated from those who loved me and wanted to care for me, as the drs and nurses cared for the babies, a shell of myself.
I don’t think there is a more helpless feeling as having to stand back whilst someone else saves the life of your baby. Knowing there is nothing you can do. Standing to the edge, just watching and waiting. Crying. Or hurting too much to cry. Feeling like a spare part. Feeling you want to push everyone out of the  way and scoop up the tiny person, who had been part of you up until very recently, to protect them from harm. The wall of plastic that surrounds them making you feel so far away from them you may as well be in another room entirely. Guilt being there when you can’t do anything but sit – keeping vigil -and guilt at NOT being there as you need to drink and eat and try to sleep.
Trying to get over that guilt is a personal journey. Everyone in the world can tell you it’s not your doing and it’s not your fault, yet you need to reach this point of view yourself. It takes time. When you are experiencing something catastrophic it makes you vulnerable. Guilt is one of those emotions that as human beings we find easy to feel. Similarly, we find it easier to accept criticism rather than compliment. We are hard on ourselves and see the faults quickly as opposed to celebrating the good bits. I needed to get to a point in time when I naturally realised this was the life we were destined to lead and as I often say ‘a roll of life’s dice’. It has again been easier for me to overcome the guilt more (and the only ‘fault’ I’m talking is they got uterine evicted too early!) after the investigation proved that it was prematurity alone that caused Reuben’s brain injury.
However, guilt has a habit of raising its’ ugly head. It can leap out at you when you least expect it and it did just that to me last wednesday.
Reuben and I went to hospital and tests showed he has to have some surgery on his hips. I had done everything in my power to avoid this. If there was an exercise that was thought to help, we did it. If there was a walker to get, we got one. If there was a standing programme to follow, we followed it. If there was a position to lie in, we lay him that way. If there was a medicine to take, we gave it. If there was body equipment to have, he wore it. However, in many circumstances you can’t fight biology.
Hip problems come with the nature of the beast of cerebral palsy and they are haunting us. So off we go to surgery….waiting for a date where he will become a bionic man and go in with just bones and come out with the addition of screws.
Whilst I wait for that date, guilt has sat on my shoulder and whispered in my ear.
‘If you were pregnant longer, he wouldn’t have CP…..’
‘If you were pregnant longer he wouldn’t have to face this’
‘He’ll go through pain….’
No good parent wants their child to experience pain.
I’ve tried to bat away the demons and I think I’ve progressed in the last few years as I’ve had more success in this than previously. However, I think this is yet another case of when motherhood and guilt link arms and runs away with you. Sometimes you need to hear the guilt and then apply logic to reach the true picture of what’s happening. In this case, Reuben needs surgery to make him more comfortable and stop any further deterioration. So, I guess I’d have a lot more to feel guilty about if he DIDN’T have it done, not if he did.
I have learnt to look at the bigger picture. There’s days when this is easier than others. This surgery will just be a tiny part of this year, of all his years, when things stop and we have to adjust to something significant, before normal service resumes. Looking back, we’ve had to adjust to a whole lot of stuff for both boys. This is just another event.  That’s what I’m embracing anyway!
In the past, this hasn’t been easy. There have been things along the way which have made it better – family and friends being the leading one for sure. But in my mass clear out of my bedroom (new year resolution of chucking out the redundant stuff in my drawers!) I came across something I’d kept safely tucked away for the last three years.
When Reuben was diagnosed my heart broke. I was resentful to Mother Nature and the way she had written the script to my son’s lives. She had predetermined everything. Or so I thought.
Then I received this. I had been raising money to fund Reuben’s private physio and someone sent us a small donation. A note accompanied it, and my view on Reuben’s life ahead then changed.
image
It made me think….
Mother Nature may have been hard to us. The roll of life’s dice may have been unkind.
But feeling guilt, feeling hard done by and feeling helpless was not helpful to Reuben or to me.
These kind words from a complete stranger touched my heart. My heart then changed from one that was damaged to one that was determined.
The twins’ lives may have been destined to be different, destined to be hard. However, they will be ‘lucky and good’ like this kind stranger said. It’s not up to me to pander to the guilt that sits on my shoulder. It’s up to me to give the twins a life that’s fulfilled, a life that’s exciting and a life where they feel nurtured, cherished and loved. That love and that opportunity will create their self belief and self esteem to let them chase their dreams. We will meet struggles along the way. We will have surgeries and bad news, but I will not let guilt override my ability to make them the best they can be.
Boys, buckle up – we are set for an exciting ride ahead and disability will know no barrier. The adventure starts here….and Guilt is not invited. .

 

That’s just how it is.

For a while I’ve blogged about having a disabled child (or 2). These thoughts and ramblings are just my own. Everyone approaches things differently and has varying feelings and emotions in similar circumstances. Disability knows no prejudice – it will affect people from different walks of life, race, religion and age. In a similar way, the way people react is different. There is no rule book or instruction manual. The ability to cope with life when disability touches you can never be generalised. One thing though that generally people share, is that there are good days and bad days – and days when you feel the stuffing (no festive timing pun intended there) has been knocked out of you.
There are great days when you feel you are floating on a tide of elation, when things are going well – or at least you haven’t had any really crap news/results recently.
There are days of status quo when things are (sometimes unnervingly) calm. I sometimes get twitchy in these periods of calm and wonder when the storm will arrive. Sometimes that storm is a rough one, sometimes it’s just a suggestion of a storm and more of a rain cloud, which is there just to remind me that nature’s in charge. Mother Nature remains a body of power I have an existing love/hate relationship with and one whom I respect, but based on past experience, do not fully trust.
Then there are the days which totally suck. When you feel you could pull a ‘duvet day’, to hide from the world and what you have to face, but you realise you can’t as you have little people that rely on you, more than the average little people of the same age, because of the drugs, hoisting, appts and all the ‘stuff’. These days are when you cry into your weetabix when you least expect it. When everything just seems to be really hard or very scary. Maybe it’s a medical decision you need to consider or someone has passed comment about your situation, which may or may not have been intended to upset you. Maybe you have had to battle for your baby/ies more than normal. (And normal is hard enough). Maybe you’ve seen the passing of another family’s little one, when you know that could have easily been yours. Maybe your heart is hurting a little more than normal, just because you wish things were different. Maybe there’s no trigger, other than life is just hard some days.
This week, I came across another type of ‘day’. Not ‘good’, not ‘ok’ and not ‘bad’. It wasn’t a great day, it certainly wasn’t an average quiet one, but it also wasn’t awful.
It was the day when I found peace.
Since Reuben was born, there have been questions over why he has the disability he does. Questions over what was the exact reason he suffered brain damage as he did. This wasn’t the almighty ‘Why Him’ question that only a parent can ask, a sort of rhetorical question that only the emotion of a grieving parent for their healthy baby can pose. This was an actual scientific enquiry of a question that has taken years to finally understand. Some people close to me knew we were exploring this, but most didn’t. It was private as, as his parents, we needed to do this in the correct way, so to reach the honest and accurate answers.
Already, Reuben has started to notice he is different to other children of his age. I have already had to deal with ‘Mummy, why don’t my legs work?’ earlier than I expected. This enquiry and systematic way to find out exactly why that is, was important.
This was important for one reason and one reason only – so Reuben himself could know what happened to him and why. I will always be his advocate, his closest ally and caregiver as he grows, but he has a right when he is older to have the answers to why he needs those things. Essentially, why he has wheels as we have legs; why life is a bit trickier for him than his peers. We set out to understand it and get the hard facts to answer possibly the hardest and most hurtful question of my own life. One which I never expected to deal with but one I manned up and faced. Not for anyone else in the world, but for the centre of my world. For Reuben.
It took a long time. Essentially this meant that for a long while, I was unsure of why we lived the life we do. For years, not knowing if life could have been different if he had been born a different day, on a different hospital shift, in a different unit. Could his life have been different and all of this heartache avoided…was this an act of human error or just the roll of life’s natural but very cruel dice.
I was in limbo land not knowing, only sure that I needed to have the accurate facts to move forward, to be able to look him in the eye when he is ready to know.
So that’s what we did. We found out. I made it my personal mission as his mother to get this for him. To understand. To never be in quandary about the why’s.
It was looked at in its’ finest detail, and when I had the meeting to learn the results of the enquiry, my limbo land stopped. I listened and I learned and I came to a state of peace. A peace I have never had since the minute he was diagnosed on 6th December 2009, at 12 Midday. That day tore my heart apart, and on 26th November 2015 it started to heal.
Ironically, these answers were given to me on their 6th birthday. Back in London, 6 years to the day of his birth, I learned that (for whatever reasoning of the higher powers..), this was Reuben’s destiny. This was the way he was meant to be. No person was to blame, nothing would have been different in a different place or time. Prematurity was the culprit here. Prematurity took his independence and made his life as it is, nothing more.
The understanding of why ‘bad things’ happen will never be understood, but I never set out to find out the answers to the universe and its’ ways. I just needed to know this was no one’s fault. And it wasn’t. I suppose there is always going to be my own personal guilt that my body failed them both, that I couldn’t stay pregnant longer and keep them safe. But that’s my own mind battles.
Ultimately, this is what I would have chosen the answer to be, should I have dared to consider an outcome. My worst fear would be that that someone did this, that it was an act of negligence or an accident. For then I know full well I would have started to imagine him as if that hadn’t happened. Imagining him running in the playground or sat on the floor playing. It wasn’t someone’s fault – this was Mother Nature, working her ways. This was Reuben’s life being mapped out at the start, and now I know this was how his life was to be, I’m finally at peace with it. That may be a strange concept for some, but you have to have closure on the past to move forward into the future. I’m not saying it’s ok, it’s far from ok. But that magic wand never materialised despite my deepest yearning for it. Although in so many ways, I will always grieve for what should have been, I now feel I can close that book, as this was how Reuben was meant to be;  and he’s fabulous.
He is my beautiful boy. I now know why he is built as he is. I can wake up each day for however long I have him, and know I personally sought his right to the answers to his future questions. When the time comes and only when the time is right, we will have that conversation. No doubt there will be tears, no doubt he will experience many emotions as he grows and learns why he is who he is. I am at peace with it and I will help him to reach that peace too. Until then, and forever after then, I will stand by his side and arm him with self esteem, laughter, joy and love. I will teach him to love himself like I love him. I will make sure he is proud of himself. I will make sure disability never stands in his way and his life is fulfilled. Prematurity gave him a different destiny to most, but we have so much to be grateful for and a life ahead to enjoy and to cherish. We can’t look back, as we aren’t going that way….

So now we know. It’s ok. Will I promise never to cry into my weetabix or sob in Tesco’s car park again? No, I probably will do. (In fact I guarantee I will). But now I can do those things with a deeper level of understanding.

My findings don’t change anything apart from making things better actually. I’m more calm and peaceful with our lot. Whatever the next chapters bring, we’re ready for it. Never before did a Billy Joel lyric resonate in my life until now, but ‘I couldn’t love you any better, I love you just the way you are’. That’s just how it is.

The stranger.

Something happened to me this week. Something which in the grand scheme of the universe may not seem huge to many, but to me was both heart warming and poignant.

Walking the twins home from school, a lady with three children was about 100 metres in front of me. She turned and checked we were ok once, obviously having heard Zach cry out as he tripped onto the gravel path. Cerebral Palsy and being tired after a long week at school don’t mix overly well. That was nice of her to do that, I remember thinking. (He was fine by the way, aside from some grazed knees which have only just healed from the last tumble. His cerebral palsy likes to play havoc with his centre of gravity).

We continued our walk home, which includes stopping at a little wooden fence, with a sharp turn right into our road. The lady and her children, two walking and one in a pram, were stopped at that fence as we approached. It was then that this thing happened – when I no longer saw her as a lady in the street going about her walk home just like me, but a lady who reached out to me and touched my heart in a way I shall never forget.

As I approached, pushing Reuben in his wheelchair and clasping Zach’s hand to avoid him going awol, she turned round to me. She reached into her bag, which had previously been nestled onto her pram, and handed me a Chocolate gift. Not at any other time in my life (not even the trip to Cadbury world in Birmingham when I discovered Twirl bites) has chocolate played in such a significant moment for me.

On handing this unexpected gift to me out the blue, this stranger looked me in the eye, squeezed my hand and said ‘enjoy something nice just for you. I read your blog’.

Bolt of lightning from the true beauty of human nature right there. That chocolate gift stood for kindness, generosity, understanding and empathy. It could have been chocolate or the Crown Jewels – it didn’t matter (and we all know how much I’m partial to a sparkle or two). It stood as an altruistic gesture which took me by surprise, but one where it was completely clear how this total stranger understood the complexities of my life. One stranger to another reaching out a hand and gift of love ‘just because’ and needing nothing in return. A random act of kindness.

I don’t know if I will ever see that lady again. I thanked her profusely but maybe if she ever chooses to read my ramblings again on my blog she will see this one, and really get to know how much she touched my heart. A single gesture spoke a million words. So to ‘Chocolate Lady with no name’….thank you, you’re a beautiful person.

I am extremely lucky. I consider myself very very fortunate to be surrounded by people who have made this ‘journey’ that we find ourselves on easier. I am lucky that I get direct insight into the fabulous parts of humanity, when people want to support or help us. The list has been endless of these human treasures and so many times my mind has been blown by the way people put themselves out or go the extra mile to make a difference.

A brilliant example of that is obviously DIYSOS, when people I have never met gave up their own time and money to change my family’s life. I live everyday in the result of people’s generosity and hard work. I have a constant fantastic reminder of this as I put on Reuben’s fibre optic twinkly lights as he sleeps, or put Zach to bed in his incredible room, or Harry plays in his Hideout. I don’t need to watch the show on repeat for me to know the care and love that went into it all, I feel it within my 4 walls each day.

This extends further to so many people who have helped in my fundraising for the twins. The NHS is a truly wonderful thing, I worked for it for a long time before we needed it after the twins arrival, yet it doesn’t have a bottomless pit of money. Fundraising is our way of life now. Luckily lots of people have wanted to get aboard this train and we have been able to secure therapy sessions Reuben otherwise wouldn’t have had. We’ve bought them pieces of equipment that have made their lives easier. When they outgrew them we handed them onto other children who needed them, making a difference to them too.

I’ve often sat and wondered what it is about the twins that people want to help them. Maybe it’s that realisation that any of those people could be in our shoes right now. What happened to us could have happened to anyone and that whole ‘but by the grace of God’ thing is hugely haunting. The dice just rolled in a different direction for us. I find it incredibly humbling that people go to such efforts for my babies. I’m don’t know why they do. Maybe it’s just cos the twins are so blimmin cute (but guess I’m biased). Maybe it’s just because these people are truly kind individuals. Maybe they want to make a difference and see the twins benefit from whatever they can do to help. I don’t know. I do know however that I couldn’t do what I do, without all these people. I never expect anything of anyone. I do know my life would be a million times harder without them.

Only this week I had a cuppa with a lovely man who is going to run the London marathon for the twins in April. (From someone who only runs if there’s a sale on in a shoe shop, I’m in awe). I know a group of people who want to climb three mountains for them in June. Tomorrow a local hair salon will run a fundraising event using their skills and talents making people beautiful in exchange for donations. A truly wonderful lady in a fortnight will get muddy and electrocuted (what the heck) in a running event. Electrocuted in mud. Let’s just ponder on that for a moment….

This is the craziness, beauty and power of people. When I think I could not be any more surprised, I have a particular friend who has the most quirky beautiful mind that works ten steps ahead of her, always thinking of the next hair brain but frankly brilliant event and recruiting volunteers who want to have some fun with us along the way. She knows who she is….. and they firmly broke the mould when they made her. This is complemented by my intelligent, caring and loyal reliable wing woman who makes stuff happen. She’s incredible. Sacrificing so much time for us as she leads a busy and successful job and has a family. Where would I be without these two. What a duo.
But where would I be without everyone who has ever helped us – all the other walks, runs, combat sessions, cycles, cake sales and Balls that have made my children’s lives better. For that I owe many thank yous.

Of course, whilst most people show their beautiful colours, I have met and known some who haven’t been as pleasant. I guess this is the flip side to human nature. The woman who called Reuben a ‘mong’ in the supermarket, the stares and the whispers when we’re out, the mother nearby who felt there were no need for disabled children in a mainstream school, the person who didn’t see the point in raising extra money for a ‘retard’. (If there’s ever a word that can make my blood boil it’s that one). The person who screamed at me in the car park that disabled kids should not get such privileges like a Blue Badge. (Not being funny love, I don’t see it as a privilege and I certainly don’t think it’s great my kids are disabled just so I get to park ten feet nearer to the shop door).
To the person who looked at me and said my boys would be a burden on me for the rest of my life….

In my opinion all of those things are wrong. Certainly, the twins are not a burden. They are a huge gift. So many people are never lucky enough to be graced with children of their own – I got two at once. If that’s not lucky then what is? Yes it’s hard at times, (most days), but these boys contribute to my life in the most positive of ways. They have taught me so much about determination, belief, perseverance and love. They are a inspiration, not a burden, and I thank my lucky stars they came into my life.
There are some people that were once part of my life, but for whatever reason to do with the twins have chosen not to be now. In my opinion, they are missing out on something wonderful. There are friends who I thought would stand by my side and walk this journey with me, but they have chosen not to. I have no idea why, yet I can not dwell on the disappointment of others’ choices and behaviour. I will move forward with the most fabulous friends that I have, of which I’m blessed with the best.

For every negative person and detrimental, often offensive, opinion I’ve been fortunate enough to meet another 100 people whose heart and approach is kind. People who accept the twins for being Zach and Reuben and nothing more. I’m going to come into contact with negative ones for the rest of my life no doubt so I now just rise above it and be the better person.

Better people are the ones I am lucky to have in my life. I know I’ll meet even more as the twins grow. In a society which can often be soul destroying and frightening, when you turn on the news to another terrorist attack or tragedy, it’s so energising and wonderful to know that in the main, people are good. I live everyday where I’m lucky my children are on the receiving end of goodness, of kindness and of love. From friends, from neighbours, from family and from community. But also from complete strangers. ‘Friends who you haven’t met yet’ but also those who will reach out to you, when you least expect it and who may only come into your life for a fleeting moment but make an impact for a very long time.