There was a time when only I knew you were there. I was the only person in the whole entire universe who knew you were coming. A wonderful natural secret. My best secret.  That moment was private and just ours. Just (what turned out to be..) the three of us. The double blue line on the stick in my uniform pocket confirmed my world was about to change. I smiled from the inside out.

The technology let us see you. And count you.

1….2. A matching pair.

Before you were born, I saw you in my mind. I saw you both behind my closed eyes, wondering who you’d be and how you’d grow.  I felt you move and dance together, tucked up tight. Uterine walls protecting you from the world. I tried with all my might to keep you there.

The day you were born, I heard you. I heard your cries as you took your first breaths. Born too soon, here too early. I couldn’t see you. Too much plastic box separating us as you began that fight for life. I should have been keeping you warm but the plastic boxes took my place.

When you were two weeks old, I held you. Skin to skin. So tiny. Skin like paper. Fingernails as small as a grain of rice. You turned out to be stronger than you looked.

When you were 12 weeks old, I brought you both home. Home, accompanied by the tubes that kept you alive. I sang to you but spoke and prayed to the powers that be that they’d give me the strength to handle all this.

When you were 1, the words came. The words from Drs that labelled you with my deepest fears, but those which I already knew. Cerebral Palsy had arrived. As much as you two had arrived early into this world with gusto, loud and proud, disability had arrived and made it’s own mark – albeit unwelcome and feared.

When you were 2, the therapy was in full force. I took you anywhere that would help and scoured online resources for clues of cures.

There was no cure.

When you were 3, I heard you. The words from doctors who were still delivering new diagnoses to your reams of medical notes started to sound muffled as the most important words came from you. Sounds I wondered if I’d ever hear. Sounds I had assumed I wouldn’t. ‘Mumma….cuddle….’ Nectar for my ears. Sounds so sweet they made every single heart aching moment of the last 3 years slowly shrink away.

When you were 4, I had to let you go. Big school beckoned. You’d been with me every moment of nearly every day since the plastic boxes. I had attended every meeting, took you to every appointment, did all the therapy. Day in, day out. Now, someone else had to take their turn to nurture you. I missed you and somewhere, somehow, I had to find myself again that I had lost the day you were born when I became dedicated to making the best of this roll of life’s dice.

When you were 5, my heart had started to repair. I saw you drive your power chair, which became ‘your legs’. Not destined to walk, your ‘first steps’ were using wheels. I saw you read your first words. Both with brains so damaged, yet brains so beautiful.

When you were 6, you looked settled. You made friends. Operations held you back, but you returned to full force with determination I have only ever known in you. When you were 6, things started to become normal.

I’ve lost context of what normal is. But, if normal is meant to be what is standard and ok in your own world, then ours is normal. Yet, if it’s a term that is supposed to fit in with the crowd, then we are alien light years away.

When you were 6 became a period of personal enlightenment. A realisation moment. No one can really understand what I think in my head. No one will truly appreciate what I hide behind a pair of high heels and red lipstick. No one will understand how I’d give anything to have a ‘normal life’.

Where you can go to the shop for milk without it becoming a major military exercise. Where you can just ‘jump in the car and go’. Where you don’t have to look online for places to go with appropriate disabled access. Where you don’t live your life amongst equipment that dictates your house decor. Where you can have the morning post arrive and not have at least 1 hospital appointment. Where you can just have a babysitter that is not qualified in everything disability related. Where you can pick your son up without the disapproving looks that the ‘hoist should have done that, not you’. Where they are referred to as their names rather than ‘which one is the one in the chair?’ Where you don’t have dreams that they will lead a normal life…and wake up and realise that WAS just a dream. Where I can go to work.

People see our life….but they don’t REALLY see it. Unless you’re doing it too. Then you know.

When you’re 7…..I know what it will be, of sorts. It will be more of the same. Hopefully with the friends and family I have around me now which is how we got to 7. How lucky we are.

It may sound odd having written the above to talk about luck. But when you are 7 I will count every single moment then, just as I do now, as incredible. I have no doubt that when you are 7 you will achieve something else they warned me you never would. As you are amazing little boys and whilst I wish things were easier for you, I love the bones of you and your perfect imperfections. Normal life is probably overrated.

You will carry on the awesome. You will be super and brave and funny and proud. Read more words, wheel those wheels.

When you are 7, I shall love you even more than I do now, if it’s possible. Let’s look forward, not back.

….after all, 7 is my lucky number.

Hey there, Newly Diagnosed Self. You might need to share the tissues a bit with me tonight.

I guess everyone has their difficult days. I know everyday is a tricky one for you right now, so I shouldn’t bleat on. I originally started writing to you ‘cos I wish I had known back then what I know now. Today that sentiment hit me between the eyes good and proper.

Look at this photo, Newly Diagnosed Self.

This, for you, is a few months away yet. For me, it’s 6 years ago. For you, time will be a healer when things become less raw. For me, today, I wish I could turn back the clocks.

I bet you think I’m crazy. Why would anyone want to go through what you are feeling now?! That turmoil, that pain and anguish. The worry. Mostly, the stomach gripping fear.

Today, I came across the photo above. I was making a book for Reuben to explain his disability to him (don’t be scared, Newly Diagnosed Self, it’s ok) and I stumbled across these two little faces.

I remember taking this picture. Zach was wearing a little baby gro with ducks on and the word ‘quack’ written across it. I remember thinking it was so cute as one of his neonatal nurses had nicknamed him ‘Zachary Quack’, after a character from a children’s book. He had little red cheeks, caused by the tape from his oxygen tubing. He was having some time off the oxygen each day, as we weaned him onto air. I bet you can’t imagine that can you, Newly Diagnosed Self, as at the moment the ventilators are the main thing keeping that tiny boy alive.

Reuben wore a spotty blue baby gro. Even to this day, blue is his most favourite colour. I remember thinking the dark blue matched his eyes.

I don’t often look back at the really early photos, as still they recall memories in my mind of when things were worrying and heartbreaking. Today though I did. I went through photo after photo right back from when they were in London, then onto Portsmouth and then home. Each stage and each phase filling me with both sadness, pride, tears and joy. These photos truly refer to how much they’ve grown, Newly Diagnosed Self. You just wouldn’t believe it if you saw them now. Big strapping boys, chatty, hair like strands of gold, no tubes but plenty of scars from years of blood taking to check all was well – almost like war wounds to show what they went through and how they survived.

As I moved through the files of photos, it was plainly evident how much they’ve done. Damned with a diagnosis that condemned their quality of life, the pictoral evidence was very clear about the amazing quality that their life has been and continues to be. So many experiences, so many opportunities, so much fun. I don’t want to ruin the surprises, Newly Diagnosed Self, but you are going to find yourself with those tiny boys in some wonderful places. Meeting Mickey at Disneyland where Zach’s little eyes lit up like he’d met his hero. Ice creams on Cornish sand. Shaving foam fights in a Welsh valley. Hot tubs on a cruise ship. Dinghy inflatable fun in Cheshire. Chips on the beach just local to your house. Picnics in the park. Family time. The fun in these photos shone through. The love radiated more.

Whilst I smiled at these photographic memories, I became rather wet eyed as I remembered sitting in your seat and the worry that lies ahead of you, Newly Diagnosed Self. It’s consuming.  As most of these memories, whilst they were amazing times, were in the early days surrounded by worry and grief. Grief that things didn’t work out as they should and worry as to what the future would bring.

Well, I’m in your future now, Newly Diagnosed Self and I can tell you – the worry got me nowhere. I looked at that photo above, and stared at their little faces, realising how much time I have lost.

I’ll never get that time back now. I’ll never get to just enjoy them, without the dark cloud of trepidation of what was going to come. I’ll never be able to just take for granted that they were growing, without the fear of when they were grown. I’ll never be able to take them to baby groups without the fear of what other parents thought or how out of place they made me feel. I’ll never be able to just enjoy their baby years without searching the Internet for magic cures or new therapies to give them the best chance. I’ll never just get to be their mummy, without the guilt of their early delivery or spend each day just wishing things were different.

They were the most beautiful babies. They grew into stunning toddlers. Now I find myself with handsome little boys. Time flew. It passed in a blink. It passed as I trudged from one hospital to another, receiving one diagnosis one week and another not long after. (To be fair, it’s still a little bit like that now!)

If worry made money I’d be rich. I’ve worried and been fretful and stressed about what would happen as they grew. I cried when I should have smiled. Now I’m here and I realise that worry got me nowhere. It lost me sleep mostly. It made me cry a lot. It gained nothing positive. It just made me lose so much time I should have been using to take it all in, to absorb how incredible they were and how they were defying the odds. The worry robbed me of precious time. That’s not fixable.

So, Newly Diagnosed Self, if there was one thing I could tell you today it would be take it day by day and don’t let the worry take over. Worry won’t get you anywhere. They will still grow and become the awesome little people they are today.

A friend advised me once ‘never let medical knowledge impinge on your time with them’. How right was she.

If only I could turn the clocks back. Let time be your friend. It’s the best gift we have.

Hey there, newly diagnosed self. I’m still talking to you, chatting away. I know it’s all going in one ear and out the other. Overwhelming noise. Just confused noise. If only I could time travel to you to MAKE you listen. Mike has always said we are stubborn…

Actually, let’s talk about Mike. Seems quite relevant, seeing as it’s Father’s Day tomorrow and how this weekend he has once proved again, how he’s awesome with a capital A.

Mike and I have known each other since the year 2000. Little did we know when we met how things would pan out. It’s probably a good idea we didn’t have a crystal ball back then. I think we would have scared ourselves half witless.

Of course you know, Newly Diagnosed Self, of the history so far. How we met, married, bought our house, where we’ve holidayed. You were there :0) You also therefore know how he is kind to the core, patient, honest, fiercely protective and sees the world in a rose tinted way with only the good and very rarely the bad. A whole 6 foot 2 being of positivity where the simplest things in life are the best. Nothing is complicated.

I’m here to tell you tonight how all of those qualities are the very ones that will see you through this time and the days and years ahead.

He’s sitting next to you now, Newly Diagnosed Self. Take a look. The pain you have in your heart is in his heart too. You are blessed to be able to share this experience with someone who has that very thing in common. No one else in this world can imagine your pain apart from him as they are his children too. Half of you, half of him.

Look at the tears behind his eyes. Yet they don’t fall. So always and historically silently strong and yet again a stoic nature takes hold. Commendable bravery at a time when our world fell apart. Silently listening to the doctors delivering the grim tale.

Look at the way he holds you close and tightly, in that room you’re in. The doctors voices becoming muffled to your ears as your cries become more pronounced. He’s looking after you now, just like he’s always done. Just like a few days ago when you walked to the operating theatre to have the twins. He held your hand as you climbed up to have the spinal anaesthetic and didn’t let go until you were in recovery.

He raced to the neonatal unit to collect photos of the twins in their first hour so you could look at them overnight.

He helped you when the pain of the caesarean meant it difficult to move.

He was at the hospital first light to sit vigil with you at the twins’ incubators and stayed by your side until the sun set. We kissed the twins goodnight, neither of us knowing if they would still be there tomorrow.

Soon Newly Diagnosed Self, you will see him rise in the stakes of fatherhood again. When Reuben and I are transferred to Portsmouth neonatal unit but Zach has to remain in London (Yep, don’t freak out but that is round the corner for you….) Mike drives up to London every 1-2 days with little bottles of your expressed milk for the nurses to feed to Zach. Two hospitals in two counties, miles and miles apart, each day. He’s tired but he never comments on this.

You see, Newly Diagnosed Self, it will be Mike that gives you the best advice you will ever hear. You will get a LOT. It’ll come from all angles; therapists, doctors, friends, family. Even strangers. Yet listen to the one that is closest.

Amongst all the trauma and fear, Mike just said ‘all we have to do is love them’.

Let’s think about that for a second. It sounds so simple. How can such a complicated prospect of our life ahead be made that simple? There’ll be surgery, decisions, bad news, medicines, hospital commitments, lack of salary, heartache. I can hear the cogs of your mind working overtime with all the terrifying questions right now, Newly Diagnosed Self, but think about it. All those things ARE scary, they ARE challenging, yet you will cope. You will face them because you love those boys (and Harry) more than anything in the world. Mike is right. We just have to love them and by doing that, you’ll do your best. The rest will take care of itself.

There’s been so many examples of ‘we just have to love them’ that Mike has been at the centre of, Newly Diagnosed Self. It’s not just the fact that he’s the bread winner, working whereever and doing whatever to provide for us. It’s things like the time he held Reuben on a beach in cornwall at the seaside edge for a whole hour, ignoring the strain on his back, just so Reuben could feel the waves across his toes. Like the times he puts Zach high up onto his shoulders when his little legs are tired and his Ataxic wobbles are too much for him. How he instantly covers Reuben’s ears as he always knows when things are too loud and might scare him. How this weekend he took all three camping, to give them experiences like other children have. Then when Reuben was poorly, he drove him all the way back to me before going back again so the other two boys can finish their camping fun. I would love to list them all, yet I think it’s important you just see them for when they happen as you’ll be in awe of that husband of ours.

Perhaps we knew when we married him that Mike could be a potential candidate for father of the year. High 5 us, Newly Diagnosed Self!!  I should have seen it when he supported us to train and qualify as a midwife, albeit I didn’t get to do that job for as long as I would have liked. When our cards were dealt, our life changed and Mike stepped up just like I knew he would. Often people say to me how I display such strength in all this. Yet, it’s Mike that is the backbone. He’s the one that silently carries on and whilst I’m worried or flapping about the next hospital stay or appt, he keeps calm and grounds me. He works all day and picks up the medicines on the way home. He works all day yet phones to see how clinic went. He works all day, then reads all the doctors letters at night. Amidst all that, he makes our life fun and happy, maintaining his cup half full attitude to every aspect of our life. Even when things hit the proverbial fan.

On my birthday this year, Mike asked if I would renew our wedding vows. So on June 2nd next year, we shall reaffirm what we are blessed to have. Amidst all of the worry and heartache of the last 6 years, we are stronger than ever. A complete unit. I thank him for what he does, but mostly for our happy life and what he has given me. I see so much of Mike in all three of the boys. Where else must they have got their kind natures and bloody astronomical bravery from. I will so much look forward to sharing another beautiful ‘wedding’ day again – it was probably the best decision I ever made doing it the first time round!

So thanks Mike. Not everyone is as lucky as we are.

I often look and think no wonder the world isn’t full of as much love as it should be. It’s probably cos most of the love is in my house. ❤️

Hey. How’s things, newly diagnosed self? Actually, you don’t need to answer. I know.

Let me tell you about my few days…you listen. It’ll help – bit like a shining light from a dark tunnel. Wondering if you’ll ever get out…

This week we spent a few days in Cornwall. I know that seems light years away from your life right now, but it’ll happen. You cannot imagine it, I know. Feels like all you can do is to remember to breathe, I know. But you will one day breathe without it being an emotional effort, and this week you breathed beautiful Cornish air with ease.

Feel reassured….you see our two babies sunbathing under their own phototherapy lights right now, in their plastic boxes and accompanying wires, they went too….all together as our little family of five. The twins swapped those artificial lights for the warmth of the summer sun. They swapped their incubators for little beds with white bedspreads. They swapped the alarms that make your stomach lurch with fear for the dulcet tones of the ice cream van. They swapped all the wires that surround their tiny bodies for buckets and spades.

I can remember the thoughts that you are experiencing now, that life will never be the same again. ‘Holidays are long gone’… well, yes it won’t be all inclusive trips with Caribbean swim up bars. It certainly won’t be walking holidays in the valleys or sight seeing trips to Ancient Greece. You will see many a photograph via social media of other people’s holidays during half terms, and I’m not gonna lie, for a second you’ll wish you could do those trips – but, just like all areas of our ‘new life’, you adapt and react. This is just part of accepting that this is how things were meant to be. You and I weren’t destined for the dizzy heights of New York or lazy days by a spanish spa. I’m not sure how we will ever get on a plane. That all seems very complicated when you can’t sit up on your own. But, what we have in our life is just as beautiful, albeit different and definitely not as glamourous. Holidays aren’t priority but when we do get chance they are wonderful, (with some days the unwelcome thrills of medical adventures which give you the adrenalin of a fast theme park anyway, but I won’t freak you out now with that). You find ways to make things work and by learning as you go along, things work out just fine.

Our ‘just fine’ was a few days in Cornwall which was perfect. No, we can’t afford big trips (and to be honest we don’t have the balls to do one yet anyway …) but we are lucky that cousin Rik has a place in Cornwall we can escape to once in a while.

We only went for 4 days as Reuben was called in for an MRI scan, (no results yet, newly diagnosed self, but I’ll keep you posted. However, you’re about to go through the process of Reuben’s very first MRI, so you concentrate on that one and I’ll manage this one. This new life is all about one step at a time). Some people might grumble that they only had 4 days away this year. However, it’s what you do with it and how you see it that counts.

We packed up the car to make our ‘hospital/home from home’ when we got there. Wheelchairs and drugs and equipment and medical supplies took most of the room in the luggage. Long gone are the days when most of my suitcase compromised of heels of various heights and sets of swimwear. There’s always that small sweat on where you worry you’ve forgotten something, but you’ll learn that you have to become even more organised than the entire British Armed Forces, so no fear. You’ve got this.

The trip in the car is always interesting. Trying to manage Zach’s ASD traits was pretty much an epic fail in the four hour car journey. You can now recall the words of ‘History’ by One Direction better than the band themselves, having had it on constant repeat for the whole time, so to avoid a backseat meltdown and a ‘Zach shaped’ rebellion against travelling. All this whilst wondering when the next service station stop should be to reposition Reuben in the absence of him being able to move himself or when to feed him mid journey to avoid choking.

When we crossed into Cornwall, I almost felt a wave of stress just disappear. That’s even after the blood pressure inducing trip as described above. It’s our happy place. You will feel that one day soon, Newly Diagnosed Self. A place where we relax and recharge, and although we take the conditions and the diagnosis and all that stuff with us, it is our time when we slow down. A time when we sit back and realise even more how well the twins are doing and how lucky we are that these 3 incredible little boys are ours. How yes, things are tricky but how grateful we are for them. When you slow down and not join in the rat race of real life, it’s easier to notice the tinier but more precious important things.

The children love it there. Let’s face it, it’s not school and it’s not a hospital. What’s not to love?!

They love the weather. This week we were blessed with beautiful sunshine, but even in the wetter weather they love watching the storm across the sea.

They love the ice cream. Those words you are hearing right now, Newly Diagnosed Self, about Reubs never being able to eat?? Yeah, that’s a load of rubbish. That boy downs a cornetto like it’s becoming extinct.

They love the little arcade that’s near the sea. The wonder of the neon lights. (You may wanna start collecting your 2p pieces now as I’d feed my life savings into those machines if it meant I could see the smiles that creates on their gorgeous faces every day).

They love the beach. Zach loves digging (and throwing sand at people, but that’s work in progress). Harry builds Reuben a little seat out of sand in a hole that Zach digs, so he can sit up unsupported a little to play. It’s a brotherly trio of team work. They play imaginary castles and there’s always a pesky dragon who lives in said castle. I want to be the princess in the castle but we never get that far. So outnumbered we are, Newly Diagnosed Self! All these boys!

You see, there is a light at the end of that dark tunnel. All of this will seem so impossible, but it’s not. Anything is possible if you try hard enough.

And we do try hard. We do try hard to make this life as great as it can be. No, holidays aren’t easy. They take a lot of effort. There’s no hoist, no local hospital who know our names and nothing is particularly easily accessible. We have learnt that we have to pull the wheelchair across the sand as the wheelchair gets stuck and tips. We have learnt we need to take a specific tent with us so Reuben can hide away with us a little if things get too much. We very quickly learnt we need to have the eyesight of an eagle with the speed of Bolt in case Zach does a runner. We pack a picnic with special contents so Reuben can enjoy it and join in and not choke. We learnt the medicines take up as much room as the food. Mike, super daddy, has learnt the back pain of holding a 22kg Reuben up for ages so he can feel the tide across his toes. I learnt to try not to let my heartbreak every time Reuben watched the other children running in and out of the waves, asking if he can do that too.

I love the peace. No phones ringing to check you are aware your appointment schedule at the clinic. No emails checking the latest care plan. No letters dropping through the door with the next surgery date.

I love watching their faces experience  everything. Such different faces to the ones I see in hospitals or clinics. Faces of awe, not fear or exhaustion.

I love it when they are tucked up in bed after a day at the beach. Little sun kissed faces with hair smelling of sea salt. Sand still between their toes.

Cornwall is good for our soul, Newly Diagnosed Self. A soul which has, and often still is, troubled. It’s been a place and time to reflect on events of the past 6 years and ponder on events that are yet to come. Just like you, Newly Diagnosed Self, I’m about to embark on more procedures and admissions for the twins. It’s a scary thing, and we’ll always have that in common but the main difference between us is that I’ve made my peace with it now.

Many a year I’ve spent so angry at Mother Nature since the twins arrived. Yet, in Cornwall I felt closer to her than ever. On the balcony in the evening, a light breeze across my face, the sound of the grasshoppers in the long grass accompanied by the heavy thud of Herringgull’s webbed feet on the roof. I watched the big red sun set across the vast open sea in only a way I have seen in that part of the world and really realised I wasn’t in charge. The power of Mother Nature decided this destiny for the twins, but in turn, that decided our destiny too. It resonated with me this trip, that that is ok. And once again, Newly Diagnosed Self, I was sent a reminder that you and me are gonna be just fine.

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.

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.

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.

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.

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.

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.