The bath.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be happy x

 

 

 

Advertisements

Parents like me.

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

image

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Winging it.

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

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

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

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

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

Then you have to sit back and wait.

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

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

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

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

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

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

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

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

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

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

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

Peter Pan got it spot on.

 

 

 

 

 

 

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

When you are 7.

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.

 

 

 

 

 

 

Turn back the clocks.

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.

image

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.

 

 

 

 

 

‘All we have to do is love them’.

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. ❤️

 

 

 

Oh, we do like to be beside the seaside…

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!

image

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.

 

 

image