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.

First steps.

I remember the first day Harry walked. Two little steps and tumble. More steps each time. Eventually stepping, walking and climbing trees.

I remember the first time Zachary walked. Huge relief and joy seeing as we weren’t too sure how that was going to go. The evil nature of meningitis could have robbed him of that ability.

I knew Reuben would not walk. I therefore never waited for that day. His brain bleed was so significant, from shortly after birth, they warned me this would be unlikely. I suppose I had hoped that they were wrong, and in so many areas of his life they were so far away from correct. A whole galaxy away from correct. Their medical crystal ball failed them. Though in the realms of independent walking, they were right.

When you have a baby, and you aren’t given a reason not to, you just expect them to do things. You expect them to meet milestones. Crawl, sit, speak, walk and all that stuff. When you are told they won’t, things change. Life’s natural timeline becomes muddled. All that stuff you naturally assume Mother Nature will grant your child goes out the window. It’s very strange as your child grows then, that you stop waiting for the inevitable to happen. You aren’t too sure where to pitch your expectations as you embark on this journey through your child’s development with a relatively unknown destination and many, many rest stops along the way. In so many ways, you are robbed of the major events. Things I took naturally for granted with Harry didn’t happen with the twins. It was confusing, as you examine every tiny event in more detail, cling on to every miniscule of hope, yearning for a little clue that just maybe a new skill is developing. Clock watching.

In my dreams at night (when they allowed me to sleep) my twins would be doing things together. Sitting on swings alongside each other at the park. Crawling after each other in the garden. On little double reins as I walked around Tesco. One wanting to go in one direction and one the other. Walking hand in hand. Me holding one little hand of each as we all skipped to school.

But when I woke up, that wasn’t reality. Reality was one unstable wobbly walker and one reliant on wheels. I won’t lie, I sometimes far preferred the dreams. I would give anything to experience what some other twin mummies did and have two busy twins who both require her to run in two directions at once. I would never moan about how they got into mischief or run away or play fight too much. I would just be grateful they could. That jealousy of other twin mummies is a tough one. I know many. They are lovely. They have lovely children. They are my friends. I just wish my twins had what theirs do. I used to actively avoid other twins. I know that’s daft but it hurt as I used to struggle a little with the ‘why’s. Why my twins…. Why my family…The worst times were when young babies soon overtook my then toddlers and left mine behind in the development stakes. Nothing quite like a slap in the face knowing your 5 year old has less ‘skills’ than the 2 year old sat at the table opposite you in Costa.  It took a while to get through that but I did. I managed to curb my pangs of ‘if only’ and move on. Mainly because to the WHY questions, I never found an answer. So my never ending unanswered questions became ones we planted to the back of our minds, in an unopened state, as those are the sort of questions that would only ever be consuming, negative questions which would remain a mystery.

However…..on a flip side to the heartache of not expecting milestones to happen comes a very positive thing. When you don’t expect things, anything that does happen is amazing. I saw the twins’ early years in very different way to Harry’s. Every tiny little thing that the twins achieved made my heart soar. Of course they did with Harry too, yet with him I just saw it as a given it would happen. When he sat, or crawled or walked it was fantastic. I was so proud of him. Proud mummy moments.

With the twins, the goal post changed about 400 miles to the left. Sitting, crawling, walking were achievements that were potentially unreachable. Milestones that seemed ten thousand light years away. They were only in my hope. In my real world, I took great pride if the twins held eye contact with me, or if Zach turned towards a noise or if Reuben was able to raise his left hand. I remember celebrating that Reuben could chew a Quaver crisp and it didn’t choke him. I phoned most of the people I knew when Zachary started to wean off his oxygen. I thought all my Christmases had come at once when Reuben first made a sound that possibly resembled a word. Most people wouldn’t get these miniature progresses. If a stranger knew I was celebrating the fact that my son had managed to lift his leg for 2 seconds they’d look at me like I had 3 heads.  For children who live with the conditions that mine do, milestones get broken down into millions of steps and every tiny one reached gives you the most phenomenal feeling that makes you want to shout from the rooftops.

Tonight, I’m not quite sure how I haven’t got up onto my rooftop and sung. Today was a great day that I will remember for ever. A day when you know all the hard work, efforts, worry, sleepless nights, therapies and battles were worth it. For today we reached a personal milestone for Reuben that was hanging around my consciousness in hope. It was in my dreams as a possibility. Today it became a reality.

Reuben today started his new chapter of life in his power chair. A little white and black electric chair which holds a key to so much for him. A little unimposing piece of kit which will give him some of the independence back that Cerebral Palsy took away. Not only did he manage to use it (with L plates and steel toe caps required) he loved it, smiled when he succeeded and giggled at himself when maybe his navigation was a little bit off.

We are lucky that he has one, lucky that he has the ability to use one. I’m feeling very blessed tonight. The ‘why him’ has turned far more into the ‘look at him!’. We rewrote that milestone book for him. Expectations of a child should not be measured in a blanket way but in a way that’s individualised, as in terms of what’s expected of him in child development he missed all those targets. Yet what he has achieved on his own agenda is astronomical and astounding. That tiny little baby given a black prognosis after birth tore across that play ground today with a gleam in his eye, proud of himself and proud of his wheels.

I never was able to experience with him the day he took his first steps. But actually, today I did. I got to experience what other mummies do. His wheels are ‘his legs’. He’s in control and today he took those equivalent ‘first steps’. The things you thought you’d never see maybe you do, just in a different way. The things you thought you’d never hear, I have……He shouted to me ‘Mummy, I’m coming to you’. And he did.

The Sleepover

This week Zachary goes into hospital for what we call ‘a sleepover’. This isn’t a sleepover in it’s social childhood term of midnight feasts, onesies and overdose on E numbers. This is a slumber party care of the anaesthetic team. A medically induced sleepover that creates two opportunities: one for the radiologists, neurologists and paediatric consultants to really take another good look inside his brain and spinal cord and two, for mummy to spontaneously freak out when Z drifts into the land of nod.

For anyone who has held their child as the Drs send them off to sleep, for anything from a tooth extraction to scanning to major surgery, we all know that it’s no barrel of laughs. As many times as I have had to do this so far, I still never get used to it. It never gets easier. Both Zachary and Reuben have totally sussed what it’s all about and as soon as the gas mask leaves its’ station from the anaesthetic machine they KNOW. And they fight it. It never ceases to amaze me how despite their cerebral palsy, in an anaesthetic room they suddenly develop the core strength of Thor. No amount of bouncing Tigger toys, singing or waving of sparkly wands from the staff nurse will distract them from the task in hand. They hate it, I hate it and that primeval mummy instinct of scooping them up and running away from the scene to protect them kicks in. Of course, I have never actually done that as logical mummy also kicks in and knows that this sleepover will benefit them even if it sends me into an emotional spiral.

My husband frequently offers to go in for the anaesthetic procedure, but I can’t let him as I know it’s a job that I personally want to do. I have a little routine. I sing to my boy little songs into his ear (though without his hearing aids he probably isn’t getting the full effect of my dulcet tones) as he flays his arms and tries to kick everything and anyone away from him. A bucking broncho would be proud. I have him in a tight hold as the Drs do their thing, accompanied by a lovely dancing nurse with her sparkly wands, as his green eyes roll and his little body goes limp. A good rendition of an episode of the Krypton Factor then occurs as the staff all transfer him swiftly onto the bed, trying not to tangle him, me or a nearby SHO in the leads and wires they need to keep him safe. I then raise from my stool, and exit the theatre within the gentle hold of a nurse who has a box of tissues in hand ready, whilst I throw the anaesthetist a look which without words screams ‘you best wake him up again…’

And then I leave. And I wait. I wait on the children’s ward with a whole bunch of other parents who will be doing exactly the same thing as me that day. I wait, sometimes for hours, sometimes for not long, dependent on the reason for the sleepover. I wait until the recovery team call me and we do the whole thing in reverse. Only this time I have a burning urge to hug the anaesthetist who brings my baby back from his deep sleep.

I’ve always been bowled over by the kindness of the staff in these situations. We’ve been very blessed to receive great care and huge levels of understanding. I bet many of them have sat on my stool with their own children who’ve had their own sleepovers. They do this day in day out with hundreds and hundreds of children, yet I’m lucky to have never felt like we are on a conveyer belt. I’ve felt hateful my baby has to undergo this, but felt cared for the staff who at that moment dedicate their time to us. On many occasion, more often than not, the staff have said at the point I’ve left him asleep ‘we’ll look after him mummy’. This may sound ridiculous as of course they will…that is their expertise and what they are there to do, but just someone saying it to you and looking you in the eye speaks more than just those 5 words. It says everything. I have trusted them with one of my most three precious things in the whole world and at the time I hand him over so they can do what they need to do, I’m vulnerable. We’re both vulnerable. My baby is vulnerable laying there at the mercy of their medical knowledge. My husband is vulnerable, sat outside the theatre hearing me sniffle and Bucking Broncho kicking off until it goes quiet.. My own parents are vulnerable as they sit at home wondering if everything is ok. Equally my sister is vulnerable sat up in London at work, not being able to be on hand to check things are alright. His medical care isn’t confined just to him as the desperate need and will for them to look after him extends across a whole family and network of friends, everyone that loves him. It extends across counties and countries. Care for a patient extends to more than just physical need, it extends to caring for a whole family in effect as that whole family love, adore and could not exist without that tiny person who hopefully is having sweet dreams as a result of their anaesthetic gases.

For us, a lot of the anaesthetics Zach has are for scans. MRI scans on his brain to monitor the sheer delights meningitis has dished out. This means that even after he’s awake we have to face the next wait for the results. I liken that wait to torture as we wait to hear of any new developments that might have attacked his little but beautiful brain. It was only last year that they found the growths in his spinal cord they were never expecting…

As much as I can explain relatively jovially with a serious undertone of the way I fear the anaesthetic bit, I find it hard to actually describe the gut wrenching emotion that occurs when a team of medics arrive at the curtain by your child’s bedside with a set of results that make your blood run cold. ‘When the team arrive’ with grave faces and tell you stuff that knocks you for six as your precious little person sits there playing, blissfully unaware of how a scan report can break your heart.

I’ve been a common recipient of ‘when the team arrive’. Sometimes there’s been only two or three in The Team. One time there was 7. That’s more than a 5 a side football team. There wasn’t a lot of room left around Zachary’s bedspace that time. It certainly felt very empty and sparse though after they left me with only Zachary and bad news to keep me company. With the exception of one occasion that will haunt me until the day I die, (least said about that the better), those ‘teams’ have always been helpful, empathic and kind. Though this softens the blow slightly of the news they are delivering, it is not easy. Not ever easy. The ‘team arrived’ to tell me Reuben had had his catastrophic brain haemorrhage. The ‘team arrived’ to tell me Zachary’s meningitis had returned and he was so sick they needed to re ventilate him. The ‘team arrived’ when Zachary stopped breathing as I was ushered into a tiny room to wait to hear if they’d saved him or not.

I remember that particular day like it was yesterday, how it felt in a tiny little broom cupboard waiting room, knowing nothing. I had left him as they bagged him and gave him cardiac massage. They told me to go and they would come. There was no more room around his incubator, they were more important to him than me at that time. I needed them to save him.

In that thirty minutes I ripped up a pocket sized pack of tissues into a thousand pieces. I looked at the tiny woollen hats that had been donated by talented and generous knitters, wondering if I would need anything like those after that day. I repeated over and over and over again ‘please be ok, please be ok’….I remember bargaining in my own head things like ‘if you make it, I’ll never shout or tell you off..I’ll read you extra stories at bedtime…I’ll dedicate my whole life to you…’ I read posters on the wall, ironically one warning about the dangers of Group B Streptococcus infection – recalling it from my midwifery days, yet suddenly feeling that information has a whole different meaning when you are on the ‘other side’. As a midwife, I had held many mummies’ hands as the Drs worked on their babies. I helped neonatal staff stabilise new infants. I performed neonatal life support at deliveries on struggling new lives. Being on the other side as a parent is tough. Right from their first breath, and even before birth, the Twins had relied on medical professionals to keep them alive. At that point Zachary needed them more than ever. I don’t think I’ve ever felt more helpless in my whole life. Or lonely.
They came after a while and explained how sick he was, but he was stable for now. I returned to him, to yet another different tube/wire and another different alarm to add to the ones that visited me in my dreams at night and continued to haunt me long after the twins were discharged home.

From then, I learned that I have to put the hands of my children in the care of others and pray that their knowledge and skill can keep them safe. Bringing him back from the brink of death, right through to when he has anaesthetics today. It’s the same thing. I hand him over and trust in them.

I’m scared of his sleepover ahead but I’m more scared of what they’ll find again as he sleeps. It’s taken me a while to know how to manage my own fear, but I know I feel it purely because I love him. I felt the fear sat by his incubator in NICU, as I sat there staring at him all day every day, from when the sun set until the sun came up. I felt the fear last MRI when he collapsed his lungs and was so poorly. I felt it to the extreme as The Team arrived.

I’ll feel it again this Wednesday. I’ll buy him new pyjamas and a present for him to open when he wakes up, as I always do. I’ll hand him over and trust in them again. We’ll then wait for the results to be given in outpatients a fortnight or so later and I will spend the day Wednesday praying I don’t get a visit ‘from the team’ before we go home. As nice as they are, I don’t really want to see them. ‘The team’ have spent far too much time at my sons’ bedsides over the last 5 years, thanks.

This practice, these events, will form a part of our life always. As common place as it is, it never feels normal. It’s always hard. However, I always come away from the children’s ward feeling lucky and humbled, whatever news has been delivered to us in the past. I often think that if anyone needs a reality check or to be hit with the perspective stick then they should visit a children’s ward. We are lucky that most of our challenges can be dealt with at home. I have friends whose children hardly ever get to go home. There are children who spend more time in hospital than their own houses. Children who see the ward they are on as Home. Children who get admitted yet never leave. Parents who leave without their children. Scan results far far worse than ours. Little superhero children fighting disease and illnesses and facing more than a grown man could ever cope with. Bravery in the hospital school room. Medical treatment alongside play.

Many people aren’t even aware this stuff goes on. Many people never have to face it. So many people don’t realise how lucky they are. I do. I know how lucky I am my twins survived their prematurity. I know how lucky I am that the Drs saved Zach that day, and all the other days like it. I know how lucky we are that we were able to resuscitate him on the landing at home when he was 8 months old when he had a respiratory arrest. Our challenges are significant. Their cerebral palsy and other diagnoses cause great difficulty and worry. Yet it still could be so much worse. I know how lucky I am to have The Team if I need them. I know how lucky we are to live in a country where such care is accessible in a service which is world renowned. How lucky am I, despite not wanting to leave him, that I can leave him wednesday in a clean, well equipped theatre with highly trained drs and nurses? How lucky am I that I leave him in safe hands? It’s when you see the hands on, day to day ‘shop floor’ of the NHS you truly realise its brilliance, its value, how precious it is. How that, or the normality of life should never be taken for granted.
I hope people really know how lucky they are, not to have to see the ‘shop floor’ like we, and so many other children and their families do day in, day out. I hope though they know if they need it it will be there for them. You probably can’t get a better or higher recommendation than to say you trust those people with the life of your most important thing in the whole world.

‘Mummy, my legs don’t work’.

So that hits you where it hurts. ‘Mummy, my legs don’t work’. What do you do with that? With a sting in my eye and a lump in my throat I just replied ‘No darling, but the rest of you is more awesome than you’ll ever know’.

I don’t know if that is right. I don’t know the true party line on how to answer that, or what you are supposed to say when your child realises they are different. To be honest I am still processing a lot of it myself and to then have to explain it to your son was a thing I was dreading. Not dreading to have to have the conversation, but for the fear of getting it wrong.

I was suddenly aware that I needed to ace this answer. Reuben clearly has a strong consciousness of his difference but also of his own person. Over the months that preceded that question, he had grown in self-confidence, in his socialisation and in his self-esteem. I needed in a quick moment to tell him the truth which he fully deserved, whilst maintaining all of those other things. I needed to think on my feet and quickly, and in a pair of pink 4 inch heels that’s not so easy.

So we talked. I told him how his brain doesn’t send messages to his legs like his friends’ brains do, yet he has a superhero powerful clever brain that learnt to do things other brains haven’t had to, to develop and heal. I told him how he had a brain bleed but unlike when legs get grazed or cut, he didn’t need a plaster to stop the bleeding, he cleverly did that all by himself. I told him how he had something called Cerebral Palsy, yet that wasn’t what he was, it was just a small part of him. I told him I loved his brain and I loved his legs. We talked about how no, he couldn’t walk, yet his legs could do so many other things: They made him laugh when he was ticklish. They were so clever to keep him upright in his standing frame. They made Mummy proud when he did his physio and he smiled through his stretches. They got to wear really cool football splints. They were so clever as they were growing and making him so tall. That they have a very distinctive birth mark on his shin that makes him even more unique.

We talked about his wheelchair and that he was the envy of his friends when we ‘upgraded’ his spoke guards to Buzz Lightyear. We talked about how Buzz’s saying ‘To infinity and beyond’  was exactly right for him as the world is his oyster and how a pair of legs that don’t do what they should would never mean he couldn’t achieve what he wants. We looked forward to his electric chair when I would have to race after him and he laughed (I might have made a rod for my own back with that one…)

I have no idea if any of that was ‘right’. There will be someone who tells me it wasn’t. There is probably a book that tells me otherwise. However, it worked for us as he frequently says ‘I have cerebral palsy but I’m awesome’. I love that. ‘Cos he is awesome. He recognises his limitations yet knows his abilities far outweigh his disabilities. That is a lot to understand when you are 5. A lot of that was instilled to him at The Rainbow Centre who concentrated and celebrated the things he could do and not the things he couldn’t. I learnt that from them and we heavily followed this at home. One of the best lessons I ever learnt.

I survived that conversation without too much trauma. Didn’t stop me crying like a nutter when I popped to Tesco later on. (Note – not IN Tesco, in the car park. No one wants an unhinged woman crying into the carrots).

You see when stuff like that happens, the flashbacks come. Far, far less than they did in the early days but when you have such a traumatic event in your life your brain has trouble coping with it. Maybe I should have told Reuben his brain is far cleverer than mine….

Sometimes, it’s hard when a memory decides to slap you in the face. Slapped with the memory of his first diagnosis and how he was not ‘of medical opinion appropriate for resuscitation’. How that led me every day to wondering how I would plan a funeral for a tiny 3lb person if that tragedy happened. Visions of a tiny casket with a body in, as their words had removed the ‘person’ from him when he hadn’t even died. How would my family and friends mourn the short life of someone who meant the world to me but they had never met. Amazing Grace as a hymn and then probably a piece of Battenburg and a cup of tea where no one would really know what to say to me. Can feel and see that like it was yesterday. But it wasn’t yesterday…

That date of diagnosis was 2,078 days ago. I have known about his brain injury for 2,078 days. I reckon I have cried at least a half of those. People think we cope well. People see us go out, have friends, do the school run, have hospital appointments, see me with my hair done and a red lipstick on and think ‘oh they’re fine’. Well, we are. I live with a great husband and have 3 happy boys. What they don’t see is conversations like the above. I try not to let people see me sob in supermarket car parks. They don’t see me up most nights with Reuben in pain,  or when the twins aren’t awake how I am in fact still awake trying to make another horrible decision about a medical choice/procedure for them or worrying how am I gonna fight this next battle. They don’t see the lifting and the drugs rounds and the hoisting and me trying to write carers rotas. They don’t see the fear in my heart about who will look after him when I’m not here any more.

But that’s ok actually. I don’t need them to see that as I don’t know what goes on behind their closed doors either and I’m very hopeful they will never have to experience my way of life or have to have a conversation about stuff like legs not working. I hope they know that they’re quite fortunate though. But by the Grace of God and all that.

What was interesting though after the ‘Legs’ conversation and the Tesco-meltdown was that I quickly was able to move on from my heart-hurting flashback and think ‘actually, I need to see this as a good day’. For I wasn’t with the child the medics predicted, I was with a child who could talk, listen and comprehend his own existence. My clever boy, who could ask questions and consider the answers and learn from it. He knew by the end of that ten minutes that we helped him be his best self and we would ‘carry’ him (literally and not literally) always. How we loved him and that to us he was perfection. It was at that very point I really knew how blessed we were and how Mike’s advice of ‘ we just have to love them’ had worked. Only, it hadn’t just worked, it had been an astounding success and we had effectively chosen the right formula to create the perfect family life. Not one society would deem as perfect, but one in which I do.

So, unusually I am going to end this now with a message directly to Reuben. ‘Reuben, if you ever read this in years to come, please know I love you. Your legs don’t work but that would make you what others call ‘normal’. Who wants to just be normal eh?! You are my very unique limited edition. I love you. As you rightly say, you are awesome and do not let anyone in the world ever make you feel otherwise’.

Beauty goes far deeper than effective legs. I hope in time most people will realise that, just like Reuben did.

Two Ears One Mouth.

When I was at ‘midwifery school’, I had a really good lecturer who, during one lesson about the care of a woman antenatally said ‘you have one mouth and two ears. We were made like that for a reason’. This is something that has never left me as it is so true. I think many of the world’s problems would be of far less catastrophic if humans spent double the time listening and half the time talking. 2 ears. 1 mouth.
Listening. This, as has been discussed by many before, is very different to just hearing sound. It is digesting, considering, contemplating and thinking. How often do we say we are listening but actually aren’t really taking it in, giving full attention to the words and what they actually mean to the people delivering them? How often do we ‘listen’ but miss the real message behind those words if we don’t think about them and, if needed, ‘read between the lines’ (or words)? I’m sure there are times when I have applied ‘selective hearing’ – maybe if my husband was blinding me with science about something he had ‘engineered’ at work, or Harry had been trying to tell me about his new architecture skills in his Minecraft world. I was hearing them, whilst I may have had my mind wandering elsewhere – maybe to which hospital appointment I was needing to be at next with one of the twins, or thinking about last night’s ‘duff duff’ ending in Eastenders. The thing is I make a real conscious effort to LISTEN to the children when they are telling me things, as it’s quite right that if you don’t listen when they are telling you little things, they will not end up telling you the really big things….
Listening has always been something I have managed to do (most of the time. Sorry Mike, after 14 years I’m still not sure what a fitter engineer does compared to a turner engineer. Note to self – read up on engineering). I was the girl at school, not in the ‘incrowd’ or even the ‘not-so-in-crowd’, but somewhere in between. Not in No-man’s land human type of way, but in a sort of safe way where anyone and everyone would talk to me, regardless of the trendiness of their clothes or their class popularity. I was the 1994 version of a teenage Dear ‘Deirdre’ the year I left school, often with fellow classmates crying on my shoulder that Sadie no longer thought she was Cleo’s best friend or Spencer had snogged someone else behind Janine’s back last Friday behind ONESTOP after drinking a bottle of Diamond White. Listening just seemed to be what I did and what many sought me out for.
Listening, just as it was important to Janine back then, is something that is about to become a very important and huge part of my life. Come October this year, I will start my journey to becoming a trained counsellor. It seems a natural path for me to take and one that I feel very excited to start. I do have a particular interest in working with people who have experienced child bereavement or have a disabled or poorly child. Guess when you have been touched by something in your life it’s possibly natural to want to help others in a similar situation. I worked through my own heartache and anguish following the birth of the twins and it was extremely hard. If only I had been able to talk to someone to help me through this process, to help me come to terms with the events and move out of the ‘checkmate’ situation. I could see no way past the heartbreak and grief. Grief for what should have been, and fear for the future.
For me, the future is a funny thing. In many ways I NEED to know the children will be ok. Ok in their own way. Happy, I hope. Yet if I was faced with a crystal ball, would I sneak a peek? Probably not. The future can be terrifying, yet in many ways half the joy (or sadness) life chucks at us is manageable because we didn’t expect it. You employ your skills to cope at that time. Sometimes you need a helping hand. A listener. I hope my ears and soul are up to the job.
Looking back, if anyone had told me after the twins were born I would be doing this I would have laughed, (well maybe not laughed – I could hardly even string a sentence together), but I certainly would never have listened. I would have heard the words, but not listened. I never would have thought I would have had the personal strength to do this after I lost myself in the way I did. The colour left my world as I was in some sort of nightmare; a twisted fairy tale that to me at that time would never have a happy ending. What happened to the twins broke me and it has taken a long time to rebuild myself to the person I was before.
In many ways, I’m actually still not that person I was before. I have changed. There are now many differences compared to LBT. (Not legs bums and tums, I’m talking about Life Before Twins). Of course, I’m now a mother of 3 not 1. I’m no longer a midwife, something I miss very much, but if you believe in fate perhaps this is the way it should have been. If you don’t, perhaps this is a golden opportunity for me to grab something again, to rebuild myself a career that I have been searching for once more. Whatever your beliefs are surrounding destiny, certainly that school girl I was many years prior to the LBT era had some listening skills that will now be quite useful to resurrect. If I can help and support just a few families facing challenges that I have had to face over the past few years, and use my new qualifications and experience to help them through their heartache, then that will make sense of many times when things never made sense at all.
In many ways, I think I started to make sense of things when I started to write blogs or started to do some public speaking for local charities. This helped me directly (gosh is that selfish?) as I personally wanted to help break down the barriers of disability, to encourage awareness and to make people aware of the impact disability can have on the family. In many ways, this was easy as I could just stand and talk about my favourite subject – my children. I didn’t have to have any skills or talents or qualifications, I just had to talk or write about the things I love the most. I’ve been given the platform to talk to hundreds of people about disability, its practical and social implications on parents and families. I’ve spoken to school children about my boys and Cerebral Palsy. I’ve written blog posts and specialist magazine articles about the same thing. How lucky am I that I have something that inspires and motivates me that much I get to do that?! And do you what is really cool? People talked about it to each other afterwards. It generates discussion. It breaks down taboo and makes people talk to each other about this subject. In my opinion (if you wanna know) is that this can only be a good thing for society. Awareness is the key to moving forward. And the fact that people are talking about what they heard……well it turns out lots of us are brilliant listeners after all.

Harry – the published author…

Today my little fella Harry became a published author. He came to me with a poem about his brothers, and this was published in a journal called Special by Nasen – an leading organisation in Special Needs Education. His poem ‘That is them’ led me to tears. Below is the article I wrote that was published alongside Harry’s wonderful prose. My little boy has inherited my love of the written word! My heart is bursting with pride today.

”My husband and I were blessed with our son Harry in 2004. He was an absolute joy. A content baby, a happy, chatty toddler and although we were probably biased (!) he was growing into a lovely little boy.

In 2009 we decided to have another baby. Only we didn’t go on to have one baby – we had two. Seeing identical twins on an early scan was somewhat of a surprise, but a welcome one! We had many hopes and dreams of how our family life would be. My husband and I spent many hours chatting about the future and how our twins would add to the happy family unit we already were. What bond would they have? Would they be really similar or have different personalities? We dreamt about holidays, them growing up together, all the fun we would have. One thing we were certain of though is that Harry would be the best big brother. There was so much to look forward to.

Things didn’t quite work out as we had hoped. At 29 weeks of pregnancy the twins were born prematurely and our lives were turned upside down. Life hung in the balance for my sons in the early weeks and my husband and I kept vigil at 2 little incubators, side by side, as the twins fought for life. As well as the challenges prematurity brings, Zachary had meningitis twice in the first 8 weeks of life, and Reuben had a massive bilateral brain haemorrhage. Facing the prospect of losing my twin babies so soon after their birth was overwhelming to deal with, yet then being delivered news from doctors that Reuben particularly had irreversible and catastrophic brain damage was truly agonising to comprehend. From that very moment our life changed unrecognisably, although even at that point we didn’t know how much.

After they came home after a lengthy hospital stay, that first year was all about survival. Their growth, their health, their medical equipment, all the new faces of the vast numbers of health care professionals that suddenly became part of the furniture in our life, the paperwork, the medicines, the huge number of appointments where the twins were being watched closely for signs that their development was delayed or absent. Reuben was diagnosed with Quadriplegic Cerebral Palsy (uses a wheelchair full time) and Global Developmental Delay. Zachary’s diagnosis is Ataxic Cerebral Palsy, Global developmental Delay, severe hearing impairment (wears bilateral hearing aids) and brain and spinal cord abnormalities.

It is very easy to get caught up in the whirlwind of diagnoses, of worry and fear for the future, of grief of the loss of what should have been. My husband and I had a lot to take on board emotionally, never mind practically. But, as a parent there is something engrained in you to believe in your child, to sustain hope and actually despite the bleakest and darkest of starts to life, my sons’ life stories so far are one of that – of hope. Proof that in the hardest of times you can defy the odds. My little boys who were supposed to have questionable cognition can work an iPad better than me. Reuben, the little boy who was not meant to even stand can step supported with a walker. Zachary, the little boy who I was warned may never speak says, ‘I love you Mummy’ every day. These little boys who were meant to come to nothing have been nurtured and encouraged so much that they started mainstream primary school with their big brother Harry this term.

But you cannot battle with the odds alone. I have come into contact with many professionals, both in health and education who have helped me to help my sons. In the early days, I met a particular therapist who delivered me a very strong and positive message. Zachary and Reuben were children first. Disability came second. The emphasis was on the amazing things they could do and not the things they couldn’t.

We believe in them and celebrate in their achievements, however small they may seem to people who don’t know them. It is this thinking that has not only dictated the way my husband and I approach their upbringing, but is the thinking that Harry has naturally adopted with his brothers too.

When the twins were very tiny, I not only had fear for the twins’ futures but I was worried for Harry too. I had grave concerns over the impact that the twins’ disabilities would have on Harry’s childhood. I spent so much time in and out of hospitals and clinics with his brothers – would he feel resentful towards them or me? Would he find it a struggle when I wasn’t there? Would he feel so very different to his friends? Would he feel it was a burden being a sibling to disabled brothers?

Time quickly led me to know I needn’t have worried. In fact, Harry’s tender, caring and sensitive personality with his fun loving streak should have told me straight from the start I needn’t worry. Harry has taught me more about coping with this ‘life’ with the twins more than anyone I know mainly as he loves them because of ‘who’ the twins are, not’ in spite’ of who they are. He has grown into the most incredible young man, with a heightened consciousness of sensitivity for people who may have it a bit tougher in life. The bond he has with his brothers is one to behold and I’m certain this will always be strong.

Harry has always had a ‘way with words’, from the moment he could talk and he independently takes to writing to express himself and his feelings. These may be from writing funny stories to make the twins laugh to writing poetry like the one here.

‘That is them’ was something he produced to my husband and I one evening after the twins had started school. He describes how he is ‘just proud of who they are’ and this poem reflects that. He often comments how it frustrates him how people commonly see the disability before they see the person. He is very proud of his brothers, and I could not be more proud of him and the person he has become.

Zachary and Reuben are now in full swing at the local primary school in their Reception year and are blossoming under their fabulous support they are receiving there. They are happy boys who amaze me each and every day and instead of feeling angry or bitter that this happened to them, I actually just feel very thankful that they are ours. Things are still quite unclear for their futures and whilst at times to the people around us things must seem calmer than the early days, times are still very challenging as new diagnosis, evolving medical problems and hospital stays are still common place. But, Mike and I made a very conscious decision when they were young not to feel angry that this happened, as the ‘What if’s?’ and the ‘Why me’s?’ eat you up. They consume you. Don’t get me wrong, there are days when I hate Cerebral Palsy and the difficulties it causes my sons with a passion. There are some days when the mountains we have to climb seem higher, the battles we have to fight seem that little bit harder and when I have to be their voice, my own voice doesn’t seem loud enough. But all that worry fades into insignificance when they make progress, when they reach a fresh milestone or achieve something new. I truly believe that although disability has shaped our life, it does not govern us or define us. It certainly hasn’t destroyed us. It’s been a journey to reach acceptance but we have come a long way since those dark days at diagnosis. We live now by not what could have been but the appreciation of what matters in life, with a far better perspective over the things that are truly important.

Harry, Zachary and Reuben have bigger smiles, more determination and courage in their bones than I could ever hope for and approach everything however challenging with dignity and spirit. Being different, the one thing I was scared for them to be, I now know is what makes them beautiful. I am proud of all three of my sons, all for different reasons, but am especially proud of the unconditional love they have for each other through true adversity. I know with Harry at their side – the twins are going to be just fine.”

 

That is Them – by Harry Smith

Think of happiness

Think of people that thrive

Think of people who love being alive

That is them.

Think of love

Think of unity

Think of children that make our community

That is them.

Think of fun

Think of toys

Think of our two wonderful boys

That is them.

So think of other people

of brothers, sisters, fathers and mothers,

And of two people that love each other

Our Zachary and Reuben.

xxx

Harry – you are my very awesome. xxxx

 

The Twitches

Our life is a funny old game. If I had had my tea leaves done or had looked deep into a crystal ball I still never would have believed how things would turn out. Sometimes I can’t even believe it and we live it loud and clear each and every day!
I’ve got the Twitches. The Twitches is what happens to me on new equipment day.
New equipment day is just that. A day when another new piece of technology or a disability aid arrives into our home. Many people see these things as practical godsends. Many people literally see an object. I don’t. I know a lot of my friends with disabled children don’t. For these things aren’t just ‘things’ – don’t get me wrong, they make practical life and communication easier, yet for me they are huge-smack-in-your-face constant reminders of how our family and our life is so very very different and a million miles away from the one we hoped for. They’re given to us to help….they do help…yet they also resonate a very strong message of the difference of our existence now.
I love my home. I love my house and everyone who helped make a building feel like a happy, blessed and beautiful environment. Four walls never got so incredible as the day we were blessed with DIYSOS. One of the turnaround times in my life that was. Amazing.
As for many, our home is a sanctuary, but particularly somewhere where we can get a little bit of that thing people call normality.
Yet even the boundaries of our home blur with hospital..the majority of our visitors who drink from my teacups are therapists. The majority of people who ring my landline are Drs. I have 111 on speed dial. There was a time when paramedics used to pop in..
As much as I adore and love each one of them, the majority of people who share my car park spaces are the carers who help me get the twins ready for the day or ready for sleep at night. (I use sleep in the loosest sense of the word. We are yet to achieve proficiency in this skill). People who I employ get to share in the pure confusion of my bed head appearance as I open the door to them at 7am. People I employ get to see the beauty of my collection of primark pyjamas as they arrive for the night shift.
My bathroom cabinet is no longer filled with the delights of Molton Brown potions and lotions…..but is filled with the production of GlaxoSmithKline and other pharmaceutical company stuff….. Syrups and liquids on prescription for the twins which I collect fortnightly so much so that the pharmacist and I are on first name terms.
There’s a ramp up to my front door. My doors are wider. I’m used to discussions about wheelchair turning circles. I’d give anything for that discussion to be about how fast the twins RAN in circles…..
We could be used as a disability equipment showroom. Like many of the lovely houses in our neighbourhood that resemble beautiful show homes from NEXT or John Lewis catalogues, we could quite easily be subjects of a clinical equipment brochure.
Big postural supportive seating chairs, postural electric beds, wheelchairs, walking frames, bath seats, toilet frames, shower chairs, sleep systems, night time braces, alarms, standing frames, specialised travel seats, splints, adapted cutlery, adapted drinking cups, syringes. In the wardrobes – special shoes, leg splints, gaiters, wheelchair ponchos. In my handbag, always a rogue pack of hearing aid batteries or an appt letter I’ve stuffed in there on the promise I will file it away later. Of an evening, if I have done the drugs round and got them settled in time for Eastenders, I rest my cuppa on the tray of a large functional reclining disability chair where I would much rather a beautiful Perspex coffee table.
Tomorrow, we get ANOTHER piece of equipment to add to the collection. (I used to collect Care Bears when I was little – they were far easier on the eye than all this stuff we collect now and frankly a lot more fluffy).
Tomorrow, Zachary gets his first wheelchair.
I’m not going to go into the emotive conversations I could have here about the fact I will, from tomorrow, have TWO sons in wheelchairs – that’s a whole different blog and actually I need to process this concept a bit first….
But the prospect has given me the Twitches. New equipment day Twitches. Symbolic of ‘how I would wave a magic wand and take away all their challenges and make it better’ Twitches. The Twitches visited me when I started my Collection, and in most recent times when Reuben got his new wheelchair head rest assessment. The head rest that makes him look like a Formula One driver. The Twitches will probably visit me in my dreams tonight..the dreams when I live in a gorgeous beautiful world where Reuben runs freely in his sports day at school and Zachary can hear pins drop. I know for sure they will visit me tomorrow as we meet another new face of another therapist who will hand over another thing for my Collection.
But as we always do, this house aims to thrive on what they can do and not what they can’t. It’s these Twitches that jeopardise my ability to sustain those thoughts and give me the wobbles. The wobbles that give you a gut wrenching heart hurting yearn for it just to be different and ones which make you have a bloody good cry. The ones where to be honest, I’m jealous of all the people out there enjoying their Easter Holidays with their children in the sunshine when we are in our house struggling to do the same.
But…..the Twitches don’t last long. The fact Zachary will probably love his new wheels helps the Twitches to do one. And the Collection can actually been seen so differently if you try hard enough. Reuben’s chair can be pumped up high enough Harry pretends he is actually in a space rocket flying to the moon. His wheelchair has Buzz Lightyear wheels. The Hoist is like a magic fairground ride. Zachary’s prescription shoes make him run like Sonic.
At the moment the twins are laughing their heads off at You’ve Been Framed on the tele, and how could the Twitches ever be the victors when you hear laughs like theirs. However much equipment and stuff surrounds us, the hearts of these children are far bigger than the Collection will ever be. They reign the Twitches in.
As I get up to get the next drugs round done, stubbing my toe on the spoke of the wheelchair on the way, I read a few of the shabby chic signs that friends and family have bought me over the last few years. Ones that adorn my walls amongst the smiley photographs of the boys, with quotes like ‘if life gives you lemons make lemonade’… (And my fabulous one ‘I love all things that glitter and sparkle ;0) )
The one that’s probably the most poignant is the one that welcomes Reuben into his room each night. The one that I know is what we live by, and is far more important than the fears and the Twitches.
The one that says ‘Twinkle twinkle little star, do you know how loved you are…?’

‘Changing Chapters’

Hey there, Newly Diagnosed Self.

How are you? You don’t have to answer that actually. I can see for myself. Struggling I know. It’s a couple of weeks since I spoke to you last, and in many ways things are even more confusing for you now than they were then. All cried out aren’t you? Yep, it’s like Niagra. Tears – they sting.

Numb yet in agony? Yep, I remember that feeling.

Can’t sleep yet so tired? Yep, I remember the worries of the early hours. Things are so very lonely and more painful at night.

Love those boys so very deeply yet scared of them too? Yep, they are so tiny aren’t they…so vulnerable. Yet you will learn you are their biggest protector.

Want the Drs to talk to you, yet quite often hide from them so they can’t give you any bad news? More bad news.

One day soon you will get a glimmer of hope. Some positivity. Until then, I thought I would let you know some stuff that’s happened since to help that glimmer alight. There is so much to tell you. So much that will make you smile, laugh, cry. 5 years is a long time but so much is going to happen. You are going to face a huge amount of change.

Change. Not something I have ever liked much. I like to know where I’m at, like to feel settled and the unknown isn’t something I go much on. Guess this is why the twins’ diagnoses hit me like a tonne of bricks. Nothing like an unexpected life changing conversation to hit you right smack in the face.

Back at the point you are at now Newly Diagnosed Self, that news gave us the greatest unknown. Drs were absolutely sure how much the damage to the twins’ brains would affect them, but this left us with massive gaping holes in the future and what it would mean for them and for our family. What I did know though is that things were about to change. Unrecognisably.

Career, friends, hopes, dreams, goals, expectations, choices – all subject to change. People will come and people will go. People will amaze you. People will disappoint you. (Don’t even try to guess which ones – it even surprises me still to this day). What you loved the most before you gave birth will change to things that hardly seem important now. Hopes and dreams will be rewritten. When you are experiencing all that change, it’s made even worse when you have no control over it. Quite a bitter pill to swallow when you are a self-confessed control freak. But what I have come to realise is that what has happened to our family is a roll of life’s dice. The odds weren’t kind to us but this journey’s going to be a lot smoother once you know that along the way, the change that you fear is actually going to bring great things.

There will be many chapters to go through and just when you are getting used to one, along comes time for another. It’s very important though to not be fearful of the change, nor rush towards it. The most important time is the one you are experiencing right now. The chapter you are in now is the most vital one. Don’t wish your time away. You do not gain anything by worrying about what has been or what might be. After all the worrying you spend doing, you will realise you haven’t enjoyed the now.

I am not too sure at what point I realised that. I am not quite sure at which point I realised I had reached acceptance either. I know for you, that seems a virtual impossibility right now. Don’t get me wrong, Newly Diagnosed Self, I will never ‘accept’ what has happened to them. How can any mother truly ever be completely ok with their child facing the daily struggles that this disability brings? However, at some point along the way, I have reached a point when I can say ‘we are ok’. Yes we hit obstacles – some we avoid – but some we crash into at the speed of light. But we bounce back up and get back into the swing of our life again. Keep calm and carry on and all that. The pain that you are feeling now will never go away….it will fade and it will linger but it will never die completely. Yet you will start to see things in a different light soon. Just like when spring brings the new shoots from the ground, things will start to emerge in your life where you can see change. A spring fresh feel to what was a dark winter. You will have a fresh feel – like spring – to the dark times you have lived through recently.

Of course, I hate the way the disabilities negatively impact on their lives – yet I love the positives it brings, and there are many. Disability has taught me so much about perspective and importance, and it has led me to people I otherwise never would have met. Beautiful, wonderful people who hold your hand when you need it the most. Once you realise that you can be at peace with the life you lead, you can lead it much more positively in the power of hope and pride, rather than in the shadows of despair and hate.

Don’t get me wrong. I have many demons that hide inside the dark depths of my head that rear their ugly faces at times. Those doubts in my ability to make the right decisions for them is one of my biggest villains. Change creates many decision making opportunities and moving from one chapter to the next forces you to soul search to make these decisions. I often wish at times like this I was 5 years old again….a little girl where someone would have to tell me what to do. But I’m not – I’m now the adult in charge of two vulnerable little boys’ lives and they depend on me to do the right thing. No pressure then. You will have to find those balls of steel we talked about last time Newly Diagnosed Self. But I always think, and I always apply this rule, go with what your gut says, as intuition and instinct are hardly ever wrong.

Change will lead you to new opportunities though some will create reminders how different your lives are now. Different to the lives you had hoped for or planned for. That will always bite you on the arse. ‘What would his voice have sounded like if he could sing in assembly like the other children? What would his drawings look like if he could hold a pen? Where would he come in the school races at sports day if his legs worked?’ You are just going to have to swallow those gut wrenching feelings Newly Diagnosed Self as they are just there and I am afraid they never ever go. However, always look for the flip side. THEY said he would never talk and he chats away in his own little way. THEY said he would never eat and today you bought him his chocolate easter egg. THEY said he would not know who you were, yet he gave you the biggest beaming smile when you picked him up today.

And…..You won’t ever, ever believe this Newly Diagnosed Self, but R is about to start full time school. Mainstream school. I know, right?! Amazing or what? He loves it there. Yet by saying ‘hello’ to mainstream means saying goodbye to some very special people who helped him to get to that point. This has been a very hard and agonising decision to make, but one I know is right. Never has a truer word been said than ‘at times the best decisions are the hardest ones to make’. Yet this is a positive change, and one we will grab and embrace. I will relish in the new chapter, with massively fond thoughts of the people that helped us build memories in the last.

I often think – I wonder where we would be, what we would be doing if life had not rolled us these dice. Sometimes I am as scared of that as I am of the life we lead now, as this is ‘our normal’. And our normal, newly diagnosed self, is one I respect, love and cherish very much.

“Just because the past didn’t turn out like you wanted it to, doesn’t mean your future can’t be better than you ever imagined”.

Newly diagnosed self, you will be just fine.

Haanagh xxx

The things I would tell my ‘newly diagnosed’ self.

Hello. I can see you. I can see you sat there…and I remember. I remember the smell of the room, the time, the date, the people. I remember the box of tissues they keep nudging in your direction. I remember the little window you keep staring through right now, positioned perfectly above the consultant’s head so you don’t need to meet the eye of the ‘news givers’, those who are giving you the medical news and determining your children’s fates. I can see you.

I can see you struggling. I can see you trying to process the words and the news that makes your heart hurt. I can see and feel your fear.

Because I am you. I am you, 5 years on. I am the same person, only I am 5 years down the line. I am you. I can see you panicking, I can see you breaking. I can see the raw emotion you are feeling – drowning in total grief and shock. I can see in your tears the complete and heart shattering sadness you are feeling. I can see you willing the Drs to just stop talking, or to tell you they made a mistake and actually there was nothing wrong after all. I can see you staring into the little incubators, side by side, terrified of the future and what it holds. I can feel your overwhelming urge to run away. I am you – 5 years on.  I only wish I could have 20 minutes with you now and tell you a few things. Tell you how it’s going to be. To tell you a few things where I could reassure you and help you, to start to put the pieces of that broken heart back together.

What shall I tell you? Where shall I start?

Well, newly diagnosed self, I’m surviving. I know at the moment it feels like you can’t go on but you do, as I am here talking to you now. I would love to pass you a glass of Sauvignon and tell you it’s been an easy ride, but I can’t do that. In fact, I have to be honest and say its been one of the most turbulent and extreme rollercoasters I have ever ridden. Life has thrown you the biggest most violent of curveballs, but you need to whack it back – and from today on you will learn to be one of the most greatest of batswomen.

You are about to grow (even though you are the original girliest of girls) the biggest pair of balls. Over the coming months and years you will find strength from your soul and more grit than you can muster. You will become the most protective of lionesses and will even get on your own nerves how determined and obstructive you can be when your babies need you to fight their corner the most. I know – you can’t believe it can you?! Currently I am fully aware that even remembering to brush your own teeth is a task and putting a simple sentence together is a challenge. Sucks doesn’t it. Hurts, I know. But read on, newly diagnosed self.

You are gonna cry, a lot. (Let’s face it, you had a bit of a reputation for this anyway). It’s ok to be sad. Your whole life has just changed in one conversation to something you never ever thought or expected. Hardly gonna get the bunting out for that are you? Your priorities are changing, your needs are different and from today forth you are going to follow a whole new different path in life. You know that job that you love? The midwife you are?  The one you trained so very hard at Uni to qualify as? Yeah…that’s not gonna be happening any more. Your identity from working mummy to something completely different is in motion now. You won’t earn your own money, but you will be working 24/7 with no breaks, doing day and night duties 365 days a year. From today forth your identity will be ‘carer’. No, it’s not glamorous and yes you will have to swap your Radley handbag for a rather large Prim…’Primarni’  one where emergency medicines, syringes and various consultants phone numbers take residence. You will be ‘lost’ and you won’t recognise yourself for a while….but you will find yourself again along the way.

You won’t recognise yourself because this new way of life takes some getting used to. I get it that you are scared. I get it that you want to hide away. I remember, I did that. But 5 years on, I can hand on heart say that you will need the people closest to you. I can see you rejecting their calls, I can see you not answering the door. The conversations are easier to avoid aren’t they… But don’t keep people at a distance. They want to help, and I can tell you that you have the most valuable of gems in friends and family who will do just that. They won’t give up on you and will even beat the door down to get to you (yes, this will actually happen).  Let them in. I know they don’t get it, I know they can’t understand. But why would they? How can they? You will be able to suss out those who are giving it a bloody good go though. They haven’t been through it. And when you think about it, newly diagnosed self, before today you didn’t have a clue either. You weren’t a parent of a disabled child before today, so your apprenticeship (and expertise) starts from this moment. From scratch.

There’s always the exceptions though….be prepared for people to stop talking to you. To be awkward around you. The phrase ‘well my problems are nothing compared to yours’ or ‘I didn’t want to bother you with what you have on your plate’ will drive you INSANE. You want to be the same person you were before , you want people to be normal around you, for friends to ask for your advice and help – just like before. Yes, there are days when you will want to shove other people’s dilemmas like which Coffee Machine to buy where the sun doesn’t shine, but actually those conversations can be extremely grounding. Anything for a while that doesn’t involve medical jargon. People will say daft stuff. Mostly, it’s because they don’t know what to say. Stuff like ‘Life only gives you what it thinks you can cope with’ and ‘Stay strong’ need to be whacked into the stratosphere as you don’t want to cope with it. You don’t want this for your son and it SUCKS. You will never ever think this is ok. You will never ever accept it. More often than not though, people will help you and you will find over the next few years that love for you and your family exudes from the most obvious and the least obvious of places. You ARE going to be let down by people you don’t expect, but there are going to be the most amazing people to step into their shoes and walk this walk with you. You are going to learn very quickly that supportive and fabulous people are the key to living your new life. They will help you get through the bad days and celebrate the good days. (By the way, it’s ok to have the bad days – they are going to make the good ones even more special).

Complete strangers too will come up trumps. A knowing smile, a kind word, an act of a selfless gesture will warm your heart more than you ever knew possible. Yet, you’ll soon learn to tell the difference between people who generally mean well, to those who didn’t quite meet the criteria for evolution. Sticks and stones…..this will become common place in your mind….you really must not worry about other people. You will meet stupidity and ignorance in your new life but seriously, for every one of those times, you life is going to be enriched and fulfilled by others’ humanity and kindness.

Never be afraid to ask for help, newly diagnosed self. Times are about to get tricky. You will need emotional help and you will need practical help. You can’t be a one man band. You are not She-Rah. (Showing our ages here, aren’t we. ;o) ) Things that once took you a moment will now need planning like a military operation. The days of ‘popping out for a pint of milk’ have gone. Wherever you and the small person go, equipment follows. Loads of it. It’s bulky, and sometimes ugly, though you will learn the art of ‘pimp my equipment’ quite quickly.  Every time he gets a new piece of equipment you will cry your eyes out, as its symbolic of what should have been, what is not possible and how much that hurts. But over time, equipment will become your friend as you realise it makes your life that little bit easier. You will even get to choose the colours of some of it. (Btw you will always have to choose blue. Don’t be going to thinking you could alter it to red. He likes BLUE. Not red, green or orange. BLUE. He will remind you of this most days and the sooner you learn this the better).

It’s funny the things you have to learn to accept isn’t it. When I was young, I had to accept that I probably wasn’t going to marry Jason Donovan. Before today, I had to learn to accept that my midwife’s salary wasn’t likely going to stretch to those Jimmy Choo shoes (I’m still hoping the shoe fairy may visit one day – and YES she does exist). Now, newly diagnosed self, you are expected to accept that you have disabled children. Your hopes and your dreams that once were have gone. You are now having to formulate some new ones. I would suggest that ‘accepting’ the situation will never happen. How can you be expected to accept your child will face a life with struggles and difficulties? But I would suggest that you will learn to live with it. That ‘raw’ ‘pit of your stomach’ feeling you have now….that will fade. Understand that from the minute he left your body, you were all destined for a very different life to the one you had imagined. You will have set backs, tiny things will set you off every now and again, but essentially you will learn to live with this. The struggles will change, as he gets older the different chapters of his life will bring new challenges. None of them are easy, yet essentially though, newly diagnosed self, the pain you are in right now will never be as intense again. It just changes. Your world has stopped, but soon it will start spinning again.

What you need to remember though, newly diagnosed self, is that at this moment you are hurting. Hurting so badly you might just pass out. But that little person there, looking so fragile and vulnerable is a lot stronger than you think. He has a personality, he has opinions (BLUE, always remember blue). At this moment in time he is fighting the biggest fight of his life and I can tell you he is a lot stronger than you. He will go on, I promise you, to astound you. He will defy opinion and doubt. Overtime, your doubt instilled in you by medical professionals will fade. Your son will be your guide on this journey. He will teach you more than any therapist or Dr you meet (and be prepared to meet MANY). He is the expert. Never ever underestimate him. He will make it an unconscious mission to make a joke of those doubters. Every milestone he reaches or new thing he achieves will make your heart soar with pride you could only have dreamt of. Don’t spend your days wishing for the next milestone and chapter though. Enjoy each day and take it one day at a time. Time will happen, whether you like it or not.

I often think, if I had a magic wand, would I wave it? Would I wave it and make all his troubles go away? In a word, yes. Course I would. If I could take his challenges and have them for myself I would. I wish to my very core things had been different. That yearning for ‘how it should have been’ will never go. From now, to the moment he goes to school, to my death bed, I will always grieve for the life that he should have had. The times when you go to baby groups and all the other babies are sitting up but yours can’t, when you can’t do the food shopping as your baby cannot sit up in a trolley, when your friend’s toddlers have more developmental skills than your 5 year old, when you can’t fit the wheelchair through the door of a café so you can’t go in for coffee so you go home instead, leaving the rest of your friends there, when you organise a day out based around the locality of a local accessible hospital, when a person calls your son a ridiculous name, when you are filling in the 45th form to prove your child’s needs and how you really need that help, when you can’t really plan ahead as you don’t know if you will be in hospital having another round of surgery. You will have pangs of jealousy for every one who has a child without difficulties. You will have unspoken attachment and understanding for those who do.

But life will tick along. Things will be rough and they will be smooth. Soon as you can say things are sort of stable and you are ‘ok’, those hurting feelings will come back to bite you on the arse and you’ll have trouble sitting down again for a while. But go with it – let the emotion take you where it needs to and deal with it as best you can. Have a good cry, dust yourself off and carry on.

I don’t want him to have any of the hardships. But that does not detract from the fact I love him for who he is. He makes my heart sing. He (and his brothers) are the best thing I have ever achieved and in him I have created a different kind of perfect. Not one that society deems as perfect, but in my life, the most important by which to personally judge, he is perfection.

I do feel quite aggrieved sometimes about the early days, the days you are experiencing now, newly diagnosed self. This is why I must tell you these things. I do feel quite sad that no one ever told me  that yes there is a long road ahead, but amongst the difficulties and heartache he will bring you so much joy. He does. He makes me laugh so much, he has such character, he makes me smile every day and he costs me a fortune in chocolate buttons and Charlie and Lola merchandise. As much as it may be difficult to believe right now newly diagnosed self, he fulfils my life so much – just like any other child does for their mummy. As he is a child first – disability comes second.

Please be reassured that you will reach a point when you can say ‘I’m ok’. I know this doesn’t seem possible right now. Life is not fluffy pink clouds, unicorns and rainbows. It can be hard, it will be difficult and at times it will drive you crazy. But you are going to need to be brave. You must get up every day, get dressed, wear fabulous shoes, put your face on and avoid watching Jeremy Kyle.  You are going to need to grab it by the horns as life is truly what you will make it. You are going to be busy, tired, emotional and sensitive. You will unavoidably worry over things you cannot change but never ever let medical knowledge impede on your time with him. Sit tight and buckle up. Be prepared for your heart to plummet in one moment only for it to soar the next. Life is a very precious thing and for some unknown reason this is the one you need to cope with. Life is precious in itself for the very reason that one day it ends. Give that tiny boy of yours the best one he can have. Love him ’til it hurts, even more than the hurt you are feeling now, because what is the most excruciating and painful things right now is going to become the most beautiful thing you have.

I can promise you that 5 years from now, as you are sat where I am (cooking the dinner and being overdosed with Charlie and Lola – again) you will be so incredibly proud of him. And you have tried your absolute best. He loves you so very much, but no where near as much as you love him. That would never be possible.

You can do this. He will become your strength, and you will both be just fine. I promise you.