Miscarriage – The Worst Week was Always Going to be the First

It has been exactly a week since we found out that we miscarried and I think it’s fair to say, that it’s been the worst week of our lives.

They say that time is a healer and from past experience, I know this to be true but time won’t take away this grief we are feeling, it will just make it more bearable to live with…I can’t wait for the day I wake up and life feels a little sunnier again. I know that day will come and I never expected it to arrive so soon after our loss but it’s wanted so so dearly.

The last ten weeks have been some of the most content weeks of my life. There’s something about being pregnant that just makes you feel special. I’ve felt strong, beautiful, happy and loved…all of which is making it harder to accept that it’s over.

I knew I was pregnant immediately. I conceived on the 5th December and took my first pregnancy test on the 7th as I felt pregnant! Obviously, it was negative but I tested again and again until the faint blue line appeared on the morning of the 11th December. I know it’s weird to say that I just ‘knew’, but I did…so why didn’t I ‘know’ that I wasn’t pregnant any longer?

Looking back, maybe I did. I’d worried some mornings that my bump wasn’t as prevalent or that the dog had started jumping up at me again but I still felt nauseous, I still cradled my belly, talking away to the little soul residing inside.

I wish that time could be reversed, I’d do anything to be back in the blissful bubble of believing I was still pregnant, I’d do anything to go back and start again…maybe undo any wrong that might have caused this pain. A little over a week ago, I was happy and content, planning the future and feeling more secure in my relationship and in myself than ever before.

Now, I’m stuck in purgatory – in a perpetual state of torment and regret where obsession grows and lingers with every thought that crosses my mind.

I’m obsessed by the idea that I’ll never know how this happened and although I know deep down, I can’t be to blame, it’s too raw to accept that yet. I’m the one whose job it was to keep this baby safe, I’m the one carrying the full extent of the responsibility on my shoulders. I’m the one who’ll always feel like I failed.

I’m obsessed by the day that baby died, there’s something I can’t quite get my head around. On the 15th January, I had a scan in the Early Pregnancy Assessment Unit because I was experiencing pain in my life side. I was offered a scan to make sure I wasn’t carrying an ectopic pregnancy. On that day, on the 15th January, we saw our baby’s heart beating so strong. It was a normal pregnancy as far as the sonographer could see – the heartbeat was perfect, my placenta was working hard and everything looked exactly as it should. I was measuring at 8+1 days which placed me exactly where I thought I’d conceived…never did it once feel too good to be true! However, mid scan, the sonographer pressed down so hard on my stomach that I physically jumped from the bed, yelping in pain. I’ve never had a painful scan before and although I worried immediately about the baby, I didn’t think to ask whether it could have caused damage…but here I am, nearly three weeks after, obsessed by the idea that this was the cause.

See, the hardest part of this for me to accept is that baby died the day we saw it’s perfect heart beating. Baby died only hours after we rejoiced that everything was fine! Last Friday, a different sonographer delivered the news that baby was measuring at 8 weeks + 1 day…when I should have been measuring a further two weeks on. How can it’s heart be beating so strong in one moment then stop in the next instance, not even a day later?

There’s a part of me that knows I’m looking for blame, that I need answers to explain why life could be so cruel and maybe one day, I’ll accept that this just happened, but right now, it feels too soon. There’s also a part of me that knows I’m using anger to deflect from the grief I’m feeling. I just wish it was making me feel better.

I’m also obsessing with the insecurities I’m now battling. I can’t stop thinking that this will be the beginning of the end for my relationship. After all, how can I expect someone to love me when I can no longer love myself? How can I expect anyone to admire the body that failed us both or want a future with someone who may be incapable of carrying life ever again?

I know that there are so many success stories out there and that there’s no real reason why I won’t be able to bear another child but I never ever entertained the idea that this could happen to me, so why now would I still be so confident or arrogant? Part of me is obsessed by the idea of being pregnant again, like I can’t wait to feel that way again but part of me is obsessed with the thought that this could happen again and again.

A week ago today, I sat in the Early Pregnancy Assessment unit convinced that this scan would reveal that I was worrying about nothing. I’d spotted on Wednesday evening but I had done so with both Tristan and Siena. The blood had been so pale, so slight, so insignificant, I thought myself ridiculous for even calling the midwife. Yet, I lay on the bed, completely alone, listening to silence. I’d expected an immediate reaction from the sonographer- confirmation that the heart was still beating but minutes passed by and with every unspoken word, I knew then what was coming. Eventually, I asked whether she’d found the heartbeat. She responded with ‘give me a moment please’. Those words will haunt me forever especially as they were followed with ‘I’m so sorry, baby is still there but baby has gone’.

Last Friday, was the most harrowing, most horrific day of my life and since then, I’ve grieved with the same intensity and emotion as I have when I’ve lost those I’d loved for a lifetime…but this grief is different. There’s nothing tangible for me to have lost. My arms ache for cuddles that I’ll never have. My voice shakes for all the ‘happy birthdays’ I’ll never sing. There’s no grave I can visit, no place to mourn. My baby will be cremated with no one beside to say good bye. I think that’s what makes miscarriage so hard. It’s like losing something you never really had but loved with such ferocity.

I’ll return to something I said earlier, I know that time will make this better and that every day, I’ll hurt a little less but right now, life is raw and more painful than I could ever imagine.

Thank you to everyone of you who has supported us this week. The kind words, the messages, the stories you have shared. The patience, the emotion, the knowing that we will be alright – it’s what has kept me going.


The Hardest Goodbye

Tonight is our last night with you before we finally have to say goodbye and I don’t quite know how I’m going to manage.

10 weeks ago, you came into our lives and instantly made them magical. You were so unexpected but so wanted and so loved. You may have been a surprise but you were the best kind. You were more than a foetus, you were hope, you were happiness, you were a promise that life was working out as I’d always dreamed it would. In such a short space of time, you made it hard to imagine life without you.

But the reality is, now we have to.

Tonight, you still lay wrapped in the warmth of my love…and my womb and even though I know you are already ‘gone’, I hope you can feel the strength of our love. I hope every day of your short lived life, you have felt our love, mine too irradiating inside me.

I loved watching you grow and my god, you were growing just perfectly. As my third baby, you made no point in trying to be discreet. From 5 weeks, you were visible for the world to see. My perfectly rounded bump was the best proof that you were snuggled inside but tonight, I look down at my still slightly swollen stomach and wish so badly that things were different, I wish so badly that you could stay. Now, I am so deflated in so many ways! Excess weight sags, the remnants of your perfect existence but the real deflation stems from our grief.

You are still there, so why do I feel so empty? You are still there, so why do I feel so alone? You are still there, so why can’t you stay?

Everyone tells me how common this is, statistics show that every 1 in 4 pregnancies ends this way and even though that supplies the recognition that I’m not the only person to ever feel this way, I am the only person to experience the way that I am feeling and I don’t know how to comprehend it. I’m angry, I’m sad, I’m drained, I’m devastated. I feel tired – both physically and mentally. I feel numb.

I feel guilt.

How can I ever forgive myself for losing you? How can your Daddy ever look at me the same way? Since he found out about you, he’s looked at me so admiringly and he’s felt so proud but how can he feel those things now that I’ve let him down? Now that I’ve let you down? People tell me that I can’t blame myself, that this is not my fault and maybe one day, I’ll accept that but right now, all I feel is guilt and uselessness. What if I drank too much coke? Why didn’t I listen to everyone who told me to slow down? What did I get so wrong?

The worst part is, I have to accept that I’ll never know.

I’m so sorry, my beautiful baby. I’m so sorry that our love couldn’t protect you. If it had been able to, you’d have lived an infinite amount.

I think back to all the excitement you brought – everyone wanted you – me especially! I say that in case you ever felt my early doubts. Please know how very much I wanted you and how very much I needed you. I hate to think you left us feeling like my fear was anything more than nervous excitement and each day you were with us, my want for you became undeniable.

We were so lucky that at 8 weeks and 1 day, we were able to watch your heart beating. Seeing the pulses so strong and so powerful made us so hopeful that you were here to stay and we had so many aspirations for you already. We’d named you, we knew what your hobbies would be, we thought about all the wonderful things you would be! How could we ever know that only hours after we saw you, your heart would stop beating forever?

It hurts so badly that I’ve carried you for two weeks, blissfully unaware of your passing inside me. For two weeks, I’ve caressed my swollen bump, told friends and loved ones about how excited we were and made plans for our future. For two weeks, I’ve talked to you, promised to keep you safe and loved you unconditionally.

We all have…and we always will! I hate that your Brother and Sister will never get to meet you, I hate that you’ll never know their love. I’ve been so eager to tell them, I know they’d have been as excited and as proud of you as me and your Daddy have been.

Tonight may be our last night together but you’ll reside in our hearts for all of our lives. How ever short your stay was, you impacted on us greatly and I will be forever grateful that I got to be your Mammy.

Tomorrow, I have to let them take you from me and that is something I never want to be true. Tomorrow will be the hardest goodbye and I don’t ever think we’ll be ready.

I hope you are in heaven with our family, I hope you are being loved on the other side. Tonight, I can’t bear to say goodbye so instead I’ll say goodnight and god bless…goodnight and god bless my little prince or princess…until we get to hold you in our arms, we’ll be holding you in our hearts.

Won’t You Walk With Me?

The day the Doctor confirmed you had Cerebral Palsy will always be etched in my mind – I felt calm sat in the chair staring at your MRI results. Cerebral Palsy, at least, I thought we could conquer. I had been worried for so long and had speculated so many other possibilities, the outcome felt positive and not as alien or unbeknown as some of the other potentials. I felt reassured by the Doctor’s words and although the truth was that you may never walk, everything was still possible!

In that moment, sat in the Doctor’s room, I had clung to every minute positive. Tinted overlays had glazed over my eyes, protecting me from every uncertainty.

It wasn’t until the morning after that the seriousness of your condition cascaded over me like a thick hue of darkness. Every ‘what if’, every supposition impacted upon me greatly. The notion that I may never see you walk down the aisle as a beauteous bride or walk hand-in-hand on shopping sprees galore floored me. I realised that when you were born, even through the turmoil, I’d taken for granted that I’d still have all the little things.

I’m not sure any Mother could deny the pang of excitement they experience when they learn they’re having a girl (don’t hold this part against me, I celebrated finding out I was having a boy with just as much enthusiasm but the experiences are different). Instantly, I saw us…at the family celebrations killing it on the dance floor, I saw us sharing many a cinema trip, shopping trip, meal and cocktail. I saw myself at your ballet classes cheering you on from the side, I saw myself at sports day taking pride in your athleticism (something I undoubtedly, had been denied). Never in any of my dreams had I seen you in a wheelchair, never in my wildest thoughts had I pictured you incapable of that independence I already knew you craved.

I look back now at my former self crying over these ideologies with a strong sense of sickening. How dare I be so judgemental! How dare I write your life off as though you’d accomplish less or succeed less. If only I’d known back then that all this meant was that you had more to achieve, more successes for me to witness and more hope for me to feel than I could have ever imagined.

You were – and are – after all, still my beautiful strong, determined Daughter. Please don’t think that my tears were ever for me. I cried for you! I cried that you’d never get to experience the joy of running down a bank, letting your legs tumble in the moment and the wind carry you forward. I cried that you’d never play ‘tig’ on the yard with your friends or chase the boys you fancied with daisies in your hair and love in your arms. I cried for your first dance, I cried that you’d never stand on your Daddy’s shoes as he twirled you round the living room in glee.

I cried that you’d never know life as I’d known it.

And as you grew and your disability became more prevalent, I cried for you more. I cried for the times I consoled you at soft play when the boys and girls couldn’t understand that you couldn’t keep up and left you on your own. I cried for the times you looked at the other children and asked me why you were different. I cried for the unintentionally cruel comments ‘why is she just crawling?’ and ‘put her down, it’s not healthy to smother a child her age, you shouldn’t still be carrying her’. I cried for the Birthdays you woke up convinced that a year older would have granted you the ability to walk! Oh, I cried for those moments the most.

Though the tears sound mostly through sadness, please know that there was many a tear shed through joy. I remember the day you learnt to army crawl along the floor to retrieve your toys and the time you crawled out from the row at ballet to claim your certificate. I remember the day you took 5 steps unaided between myself and my best friend whilst we were at the Baby Gym. I remember the time you entered your nativity on your KAYE Walker and made it all the way to the stage!

Every step, every milestone seemed so much more magical and baby girl, you are still firing them at me today!

I marvel at your progress, at your tenacity and resilience. I’m thankful for the first lockdown when we focused so much on your physio. I’m grateful for Heel and Toe Charity, for all the support they’ve given you!

2020 may have been a monstrous year – but not for you! Whilst most people fought their demons, you struck back in force! You went from cruising furniture to walking without it. You turned corners unaided, stood up from kneeling down.

You walked and walked and walked and walked your little socks off.

Whilst the whole world cheered Captain Tom (we did too), I had my own hero dominating my living room…and on your sixth Birthday, you woke up smiling at never having to ask the question ‘will I be able to walk?’. You turned every single doubt I’d ever thought, upside down. You took the can I’d been storing them in, opened the lid and let them trickle to the floor. Then, you stood up, walked forward and trampled on every single one of them!

I have never been so proud!

And it hasn’t just been the walking, it’s been the dancing too! Your feet know rhythm more than your mind can keep up but it doesn’t matter. You’ve nailed your signature moves and they couldn’t be any better!

I can’t wait for the shopping sprees, for the late night parties and the scandals we’ll get up to. I can’t wait for the sports days and the Paralympics when I’m there cheering you on from the sides at a far greater level than sports day could have ever been! I can’t wait for the moments we are gifted together…

And we’ll walk them hand in hand!

How Do I Teach ‘Responsibility’?

A wise (Spider) man once said ‘with great power comes great responsibility’ and he wasn’t wrong. Responsibility is something that we just can’t shy away from…no matter how much we may want to. At 34, I already long for the days when I could be ‘Mothered’ but truth is, I’ve hit an age where I need to be the responsible adult.

Responsibility is a huge concept though, am I right? Going for the trusty analogy of an onion here – there’s layers upon layers of ‘responsibility’ that we need to peel back – and let the self indulgent tears roll as we do what needs to be done. There’s personal responsibility, social, moral, collective, financial and professional responsibility (just to name a few).

Now, putting it into action, I feel like I’m half way there. I don’t litter, I pay my bills on time, I apologise when I’m in the wrong and I try to do the morally good thing where ever and whenever I can! Being responsible seems to be something I just accepted as I matured…but in light of recent events, I do wonder how much of that was ingrained in me from such a young age? My parents, for example, where always responsible!

So it has dawned on me…I need to teach it as much as I preach it!

After all, ensuring my children blossom into fully responsible adults has got to be my responsibility – mine, the other adults who surround them and society – I hope.

It feels harder than I first thought.

Initially, I believed that the best method was simply just to model it. If my children saw me acting responsibly, they’d pick up on the habits and know to start acting that way too?

So why am I struggling?

I still agree that modelling is vital but I have to admit, I was a little naive to believe it was that straightforward.

I can tell my children to apologise when they’re wrong, I can explain the reasons why they have been told off. I can try to show them that their actions have consequences (and I’m not just taking about confiscating the Nintendo Switch – I’m talking about the consequences on others) but what does it matter if the world we live in contradicts me at every chance?

My children have an excuse for everything and I cannot abide it! I refuse to live in a world where excuses are at the ready. My son made my Daughter cry the other day, he pointed at her scar (she’s the proud owner of a stitched-up heart) and said it was ugly. His excuse? His friend had made him fall over in a game of ‘tig’ and since he was now ugly, it was alright to call my Daughter the same.

No! I’m not tolerating it. My children are the most beautiful living beings on earth (how dare they use the word ‘ugly’ so frivolously) but if my own shortdoing is to blame for their lack of understanding – I’ll be accepting full responsibility for it.

This brings me to my next point – I was so shocked and appalled to hear my son be so cruel. I thought I had taught him better than than! But it seems society isn’t backing me on this one! These days, we are too loose with our lips, too quick to judge and far too superficial to appreciate the depth of someone!

Like everyone this week, I’m truly moved by the passing of Caroline Flack. The sheer fact she felt the need to end her life because of the cruelty of others has hurt me to the core. Where were we teaching responsibility to others when we commented/judged/believed what the Media was stating?

I live in fear that my children will grow up only knowing their worth and value in Instagram likes or shares. I live in fear that they will be faced with heartache and suffering at the end of a Smartphone. I live in fear that they will choose to act cowardly or maliciously, inflicting the same scrolling pain on some vulnerable person.

I live in fear that I will fail in my responsibilities and not teach my children to be kind and loving, to act honourably and with integrity.

So how do I do it? How do I ensure they blossom into the fully responsible adults I talked about at the start?

Please, advise me the best you can!

The Battle of a Working Mam

Too many times, I read post after post covering the heated topic of working-mam vs stay-at-home-mam and it always appears to be the ‘chicken or the egg’ scenario. It doesn’t matter who goes first, the dialogue always involves one parent saying how hard life is having to work full time whereas the other side will chime that staying at home is a justified job-choice and carries its own set of woes.

As a Mother who has experienced both sides, I can confirm that neither side has greener grass…both sides have shades of green and awful patches of brown where the grass has shrivelled and died. It just happens that these appear in different places and the cause of such neglect/unkemptness just have very different causes.

As a stay-at-home-mam, my days were very trying. I battled two babies simultaneously and most days felt as though they were winning. I worried whether my activities were educational/beneficial enough. I worried endlessly about the money I was spending and not earning. I yearned for adult conversation and the chance to rediscover a piece of me I felt I’d lost along the way. I felt guilty for feeling tired, guilty that I wasn’t doing enough and guilty that I had given up on something that had once meant everything to me…my career!

Eventually, my bank balance and my sanity hinted that it was time to go back to work. I told my Husband (at the time) that I couldn’t ever go back full time but could just about manage a 3 day week – long enough to feel like I was using my intellectual functions again but short enough to know my children’s needs still seemed priority. As it happens (and I’m a great believer in this), fate had other plans and I was plunged back into full time employment with immediate effect.

The role I had secured was only ever meant to be short-lived, I acquired a cushty little teaching job from September-December when I was then meant to be replaced by someone more suitable for the role of Head of Department. It felt long enough to line my ever-declining bank account yet short enough to see it through.

It took me one full week to rediscover my love for Education. Seven little days to decide I wanted to get my career back on track and just over a month to secure my first promotion.

Growing up, I’d always been ambitious. I wanted the best for myself and knew I had the strength to go out and get it…then Motherhood came knocking somewhat unexpectedly and abruptly changed my outlook. For the first time, my want/needs seemed significantly inferior. Yet, here I was, rediscovering the fire within me.

This is when the other side of my journey started. The green grass I’d suddenly acquired proved to be just as metaphorically seasonal. My passion dies and withers, grows and flourishes all at once!

Most days, my guilt is replaced by how little I feature in my children’s life. I don’t do the school run, I’m never there to gossip idly with other Mums waiting for the release of our spawn. I don’t know the names of my children’s friends or how much they ate at dinner. I’m forever forgetting about ‘Number Day’, ‘Dress up as a Pirate Day’ or any other gimmick that is going. I forget to RSVP to Birthday invites and constantly live in fear that I’ll be exposed as a terrible Mam!

I’m tired when I get home from work and sometimes don’t have the energy for back-to-back marathons of children’s stories. Showers are easier than baths and if I can get my children down before eight, I rejoice in the silence and adult-time…then the guilt kicks in all over againand I once again, feel rubbish for rushing.

I constantly feel as though I’m missing out on my children growing up.

Don’t get me wrong – their homework is always done, their teeth are always cleaned and there’s always a kiss and a cuddle awaiting before bed…but I can’t help feel as though they’ll realise how absent I am or wonder why other Mams are present when I am missing.

I know that we could go down the route of arguing that I’m ‘teaching my children the value of hard work’ but honestly, I thought I modelled that just as clearly when I wasn’t at work – it was just entirely different.

To summarise, I’ve reached the conclusion that no-matter-what, parenthood is hard. It carries worry and guilt, sacrifice and compromise and the most unimaginable doubt.

Yet, it brings with it, the sweetest sensation and the loveliest feeling. It’s joy and happiness, affection and rapture all rolled into one (or multiple) balls of flesh.

It’s utterly fantastic!

So, I guess I just have to accept that no matter how I choose to spend my days, I’ll always feel like I’m not doing enough and that I could be better but so long as my children are smiling and I show them I care, it has to be enough! It has to be enough!

Your Heart is Broken No More

It feels surreal now…to eventually write this. It’s a moment I wasn’t sure would ever come (one I both prayed for but wished away in such a range of conflicting emotions). Finally, I can tell you baby that your heart is mended.

From the first day you were born, there’s not a person I know who hasn’t marvelled at your strength – It’s exuberant, boundless and completely astounding. Being premature, you had a battle on your hands from your first breath, even the first intake of oxygen was an arduous task.

Most babies enter the world and immediately fall into that blissful newborn period of restful dreams and milky euphoria. Your story wasn’t so easy – your first five weeks were cluttered with conquers (some minute, some scary, all absolutely triumphant). Whereas most babies only have to prove their desire to feed…you proved your strength on a daily (even sometimes hourly) basis. You soon earned the title of our Warrior Princess – something you still earn even today…Mostly today.

I think it’s only fair to say that your fighting spirit has served you incredibly well. Over the course of the past three years, you’ve faced more testing moments than most people may face in a lifetime. From pneumonia, asthma, possible chronic lung disease, cerebral palsy and hip dysplasia…you’ve tackled each ailment with tenacity and a persistence I never knew was possible. The bravery and courage you display most days leaves me in absolute awe.

Most children your age may not have faced the inside of a hospital from the day they were discharged after birth…and if they have, it would mostly be a trip to the A&E department following bumps and scrapes achieved through many adventures (I say this as I picture the time we brought Tristan following a bang to his head whilst playing too energetically with his friends). You, oh the other hand, are well acquainted with the accustomed beeps and drones of a hospital ward.

I once wrote that I was ready for you to let me forget the familiar surroundings of the hospital but it appears, you just haven’t been ready.

Today, we find ourselves here again. Although today, you fight your greatest battle…

At 9am this morning, myself and your Daddy accompanied you to theatre. You laid heavy on my chest, dazed from the pre-meds you’d been administered moments before. I held you close and sang to you as the anaesthetist gave you the routine dosage needed for open heart surgery. Once you were soundly asleep, I placed your tiny frame on the operating bed and bade you sweet dreams. I kissed your head, cried as I left you in the trustful hands of your surgeon.

Walking away from you, right there in that moment, was single-handedly the hardest moment in my life. I’ve never felt so terrified, so vulnerable, so lacking in control.

I pictured you lying there, oblivious to the miracle being performed on you. So small, so precious, so exposed. We all knew that your ASD would need closure but it felt as though we’d talked about it for so long that it would always just be there, that the waiting would never end.

Now, I lie beside you in PICU marvelling once again at the strength you display. You’re tired, still sleepy from the anaesthetic. Your body looks frail, open to suffering. You need me more right now that I think you may have ever needed me.

A few hours ago, your nurse ordered that I left. She told me that I’d be no good to you tomorrow if my own exhaustion was unbearable. I listened to her advice, thought she must know best. Leaving you sleeping felt just as painful as it did this morning. In my mind, I knew you’d want me, knew you’d need to sense my presence. When you were in intensive care after birth, the nurses swore you could feel my presence. Apparently, your saturation levels were always highest when I sat by your side. I had this in mind as I walked nervously away from you…

It came as no surprise as the sound of the phone echoed through our silent bedroom. As quickly as I heard it, I knew what the voice would say – you were awake and crying out for me, you didn’t understand why I wasn’t there…after all, every time you’re in Hospital – I never leave your side. I came as quickly as I could baby girl and now I’m here, I’m certainly not leaving again!

As I sit beside you, I don’t just marvel at your strength but at how beautiful you look in this instance. You are, without doubt, incredible!

And I’m so relieved that I can now tell you that your heart is mended. I once promised you I’d fix it and I stayed true to that promise…your heart is broken no more.

Love you so much

Your Mamma xxx

The Hardest Part

I’m sat here watching you savour the tiny chocolate found behind today’s Calendar door. You marvelled at the surprise of it all, shouted with excitement at the shape of Santa’s face etched into the piece. The twinkling of the Christmas tree glares proudly behind you, casting illusions of Yuletide bliss.

In that instance, I’m taken back three years ago – your first Christmas and your Sister’s too. Christmas time hasn’t always been easy for us. I remember that first year, endlessly forging forced memories for your sake – trying our hardest to cover our Hearts breaking on the inside, wanting you to experience the magic of it all. Needless to say, we failed! It was hard for us to escape the trauma of having a newly born premature baby fighting in NICU whilst we celebrated the season. Even at nine months old, you sensed the pain we were all feeling, I’d even say you were feeling it too.

For the past few years, we’ve tried to compensate for the memories you missed out on and so far, I think we’ve done a marvellous job of that! But there’s something about this year which has us all thinking about the hardships of three years ago, maybe it’s your ages or maybe it’s because a Hospital visit never seems too far away these days.

When your sister arrived nine weeks early, we always knew there’d be long term repercussions. What we didn’t consider was the ways in which you’d also suffer. This, for me, is the hardest part.

During your sister’s first year, it was easy to pretend your role of ‘Brother’ was solely that. You’d play with her, entertain her, snatch her toys when you thought we weren’t looking and stare at her with both joy and jealousy. It was all as normal as we’d expect. The times your sister ended up in Hospital, we kept your routine as structured as we could and sensed your adaptability to the situation. In truth, you were mainly oblivious to what was happening.

Now, it’s harder to hide the truth from you.

Not yet four and I already know how burdened you are by it all. I see it in your face, hear it in your cries. Siena’s disability and illness impacts us all, as a family unit. It impacts you in ways you shouldn’t be expected to deal with at your age. It’s unavoidable, inescapable and completely necessary. But sad.

Daily, I see your role of ‘Brother’ extend far more than usual. You’re carer, protector, Teacher and Tolerator. I see you with her when you think we aren’t paying attention, I listen to the advice you give her, how you will her to progress. I watch you struggle to keep your calm when you’re amidst the centre of her frustrations. I watch you handle your own temper when she claws you, bites you and throws her fists in angry temper. I want you to know how amazing you are, how your patience keeps both Mammy and Daddy going as we try to deal with this new awkward phase appropriately.

I also see the other side, the side where you’re fed up of coming second, of your needs been pushed to second best. And that, for me, is the hardest part. I hear the pain in your tears, I feel the injustice of it all and I’m sorry.

All you ever seem to fight for is equality and I don’t know how to give you it.

Today, before the opening of the Calendar, we ventured to Beamish. You cried all the way because you wanted the same treatment as your sister. You demanded we carried you the entire thoroughfare, tears streamed uncontrollably each time we tried to put you down. Some may have looked at you, an overgrown child demanding the comfort of your parents’ arms, and thought you were highly coddled. How could they know that this is your best effort to feel equal to your sister? How could they know you see Siena being carried as confirmation that we love her more, that we show her more affection? It is, of course, so untrue! But I’m struggling to teach this notion to someone so young and incapable of understanding. I’m desperately trying to make sure you feel your worth, that you can differentiate between us helping Siena, not loving her more.

The jealousy you face, you increasingly demonstrate, is fuelled by circumstances far out of our control. Circumstances I wish so badly I could change – for us all. If only you realised how privileged you are, how lucky you are not to need us the way Siena may always need.

There are times when Siena’s needs are so demanding, you’re forced to take a second seat. We’ve expected too much of you, asked you to understand why our arms are preoccupied. There are moments I see it in your face, you feel lonely, you feel like we’ve no time for you. That, for me, is the hardest part! I remember those nine months (as minuscule as that sounds) when my arms and heart belonged entirely to you. Trust me baby, there will always be time in my heart for you. There will always be space in my arms as well. You are never second loved, second best.

It’s not always about the jealousy though, it’s the worry that hurts me the most.

Siena’s health puts a strain on us all. You’ve developed your own fear of becoming poorly, you despise the idea of needing a Doctor or nurse. You’ve seen your Sister admitted too many times to count, held her hand as Doctors administer her meds.

You’ve cried! Each time she’s admitted, I feel your fear. It must be so daunting to see her so poorly and not understand what is wrong. The last time she was in hospital, we were in Center Parcs , we left you with family whilst myself and your Dad accompanied her. I doubt I’ll ever shake the pain in your voice as you insisted you were coming. I watched the tears flow violently from your cheeks and knew how much you were hurting. It kills me that you suffer so much when she’s ill – it kills me that I’ve no idea how to subside your fears effectively.

All I can do baby, is tell you how much we love you – and thank you for being the most amazing little boy. You didn’t ask for any of this and neither did we but we’re here, living life the best way we know how.

I just hope you know how proud we are!

We love you more thank you’ll ever know!

Unforgettable, That’s What You Are

To our wonderful Grandad,

It’s hard to believe I’m writing this for you and that you’re not here to hear it. After all, I think in your Grandchildren’s eyes – you’ll always be invincible.

In truth, I didn’t know how to approach this. It was hard trying to narrow down the memories we shared or the ways in which you made us proud. There are so many moments, so many admirable qualities to note.

When I was a young girl, I was simply awed by you. Through my eyes, you were just mesmerising. I’d watch you as you read your paper, calculating bets at lightning speed, hoping one day I’d understand mental arithmetic as brilliantly as you. I’d watch your hands work meticulously as you tended to your tomato plants, the same hands you’d use to pull out our teeth without ever making us flinch. Your touch was magic, soft and nurturing – and always warm. I remember the way my small hand fit like a jigsaw into yours, feeling protected as we walked.

I remember traipsing behind you, following your every footstep as we accompanied you on your duty early in the morning. My Brother always in front, following by your side. I’d feel envious of your bond as though he were your apprentice – your only Grandson and one who treasured you so much. You’d tell us we were searching for buried treasure – the three-year-old me clung to your every word. As we walked, I’d study your face eager to see it change with every gem you discovered. Your garden and the school grounds were always such a special place for us. I remember lazy Summer days eating ice-cream in the grass watching you plant flowers, or winter days building snow-men as big as we could.

I also remember our family walks along country roads, visits to Gibside or along the river in Durham where the Salmon jump. We’d collect acorns, leaves, cuttings of plants and conquers. You’d talk to us about the flowers, making us feel and smell them. You’d pick berries and mushrooms, wild garlic, mint and lavender. You’d tell us about the plans you had for them – where you’d plant the cuttings in your garden and how they’d bloom; about the jams you intended my Gran to make (whether or not she did, I can’t remember – I suspect she told you where to stick them somewhere differently when we were out of earshot. She was always good at reigning you in and well, what can I say other than at times, you certainly needed it).

You were always a tall-tale-teller and we all loved nothing better than listening in depth to one of your anecdotes. They were funny and humorous, scary and thrilling. Often, they were romantic! But always, they were interesting. I must have heard most of your stories a million times before – enough to recite about the time you saw a ghost walking to the phone booth or the poltergeist you chased by yelling ‘get out of my house’. Even still, each time you told them I’d listen so intently as if it were the first time. You’ll never know how much I crave that right now, that I’d do anything to hear your tall tales again.

I’ve always been amazed by how you could hold a room…and you did! You always fell Centre of attention, making people laugh at your stories, riddles and poems. Charismatic until the last minute – I saw how you had the nurses at your care home eating out of the palm of your hand! You had the ability to make friends wherever you went – which at times was surprising because of how tactless and honest you could be.

You told it as things were, never dressed anything up to be anything different. You were stubborn and insistent that things went your way but deep down, you always knew Gran was the boss and you behaved yourself impeccably once she’d cast her stern look in your direction. Your personality was huge – as huge as your heart! Through all the muttering and groans (mostly aimed at daytime TV), you were full of joy and laughter. You loved to socialise and I can still see your face now singing to karaoke at one of my Nana’s notorious New Years Eve parties. The biggest smile and a handsome one at that! The same smile you graced us with in the days before your passing.

And you were – so handsome! My Gran was one lucky lady but actually you were the lucky one and you knew it. She idolised you as you did her. I still won’t forget the time she broke her arm and had to stay in hospital. You made her a packed lunch and wrote her a love note every night! I remember hearing that and knowing I’d base my every relationship thereafter on that. You could be a gentleman when necessary (in spite of your potty mouth) and so incredibly loving. Watching you sing to her on your Golden Anniversary was another moment that just left us floored by pride for you both.

There’s no easy way to summarise the millions of ways that we loved you and I know I speak for us all when I say that we were truly blessed having such a personable Grandfather to look up to.

You’ve taught us so many life lessons that we’ll always be grateful for. Thank you Grandad – love you always, your Grandchildren.

The Uncomfortably Familiar Surrounding of the Hospital Ward No Longer Sits Well With Me.

The moment you arrived in this world, those nine weeks prematurely, was the moment I knew our journey was going to be jaggered. 

Your Brother had done very little to prepare us for a poorly child, he’d not once been ill in the 9 months prior to your birth. We left ward 10 of UHND skipping with positivity, marvelling in the miracle of life. Only to return somewhat nine months later anticipating your eager arrival. The car journey to hospital with your brother was full of excitement and readiness – and even though he arrived three weeks early, we were both mentally and physically prepared. My pregnancy APP had told me that he was officially ‘full term’ and had done all the growing and developing he’d need to in my womb. The car journey second time round was not so clear cut. The feelings we experienced were completely worlds apart! With you, there was so much to fear, so much at stake of losing. We were told there was a chance you wouldn’t survive and although we were compelled not to believe this would be our reality, we couldn’t deny that this could be our truth. 

It took 5 weeks before we could skip down the corridor, focusing positively on your future. 5 weeks of getting to witness just how miraculous growing life could be. We physically saw your eyes unpeel, your lungs grow stronger. In a conflicting sort of way, it was a privilege to see.  Once those 5 weeks were over, we had visions of plain sailing from then on out, to wave goodbye to UHND once and for all. We had visions of routine check-ups going exactly as the should…no hiccups, no complications, no more reasons to worry.

I wished for this so much.

Your 1st Year of life saw us returning to hospital almost as much as we were away. Your lungs just didn’t seem ready to cope with any common childhood bug you encountered. I spent many nights watching the sats machine, praying you’d turn a corner. I sat in the darkness of the hospital room, feeling all too uncomfortably familiar within my surroundings. The smells, the noises, the chaos and commotion just felt so much like the beginning of your life. I started to feel as though maybe this was just going to be part of your jaggered journey.

Almost as quickly as I admitted that, you suddenly seemed to flourish. Your lungs appeared to be coping with the demands of toddlerhood, we rarely used your inhaler and started to believe you were over the worst of it.

That’s not to say your trips to the Hospital came to an end. During this time, we came to realise you had Cerebral Palsy. The MRI scans, blood tests, kidney scans, hip X-rays, hearing tests and optometrist appointments just seemed to replace the late night ventures to A&E. on top of your ECG scans and routine paediatric visits, we began to see regular physio appointments, hydrotherapy, and occupational health. We became more aware than ever that UHND was always going to play a role in your childhood. This, however, all seemed manageable. The trips were expected and planned, we knew when you were going, how long you would attend and always that you’d be back home in time for bed. Most appointments were promising and we left with a sense of direction and confidence in your consultants. You were moving in the right direction. Every visit, every scan or X-ray shed some much needed light on how we could get you to where you needed to be. The familiarity of the hospital ward was certainly diminishing.

Then you turned two and things just seemed to turn upside down. 

You even started your 2nd Birthday poorly! We awoke on the 30th November 2016 to find you covered head to toe in Chicken Pox. You were irritable and understandably agitated but like we’d grown to expect, you appeared no different to any other toddler. It wasn’t until two weeks after your Birthday – a week before Christmas – that the late night rushes to A&E returned to our lives.

Since then, we seem to have visited more than ever before. Your lungs which we once rejoiced over maturing, no longer seem to tolerate any additional pressure. You’re susceptible to chest infections as a side effect of your large ASD (something I had hoped we’d have sorted by now), when your chest is infected, your lungs just can’t handle the strain. I’ve watched you work so hard to breathe that it’s rendered you incapable of speaking. I’ve held your listless body in my arms – agonised by your intercostal recessions. I’ve listened to Doctors tell me you have Asthma then tell me again that you haven’t. There always seems to be a battle whether it’s viral-induced wheeze, Bronchiolitis or Pneumonia which has knocked you down. Lately, they’ve branded around Chronic Lung Disease as if it’s not something that should scare me witless! I’ve heard them say you need a consultant then walked out of the hospital doors so maddened by the lack of progress on this front. 

I’ve fought! I’ve insisted and I finally feel as though I’m getting somewhere! Tomorrow, we’ll meet your Asthma nurse and eventually a plan of action can be put in place. 

You’re two and a half now and I’m so exasperatingly ready for that plain-sailing part of your journey to start. I want to be able to take you to a park on a sunny day without fear of hearing that wheeze. I want to take you to ballet without feeling guilty that the exercise is too much for your lungs to handle. I want to wake up on a rainy morning loving the possibility of spoldging in puddles – not feeling the dread that the humidity will change your temperament. 

The uncomfortably familiar surrounding of the hospital ward no longer sits well with me. Surely, it has to be time to move on! 

P.S I’m forever grateful for the care and attention Siena receives from UHND. The staff here are beyond miracle workers, keeping me sane one admittance at a time. Thank you for your hard work and support xx

Nobody Told Me

I remember announcing my pregnancies to people, I remember the smiles on their faces, the ‘you’ve no idea what you’re getting yourself into glares’. I remember the stories of joy…of horror…of happiness and sadness. I remember the lectures on what to do and what not to do…it seemed everyone I spoke to was keen to share words of wisdom, of experience.

But nobody told me the things I’m about to tell you!

Nobody told me that parenting was the hardest thing I’d ever do – physically, mentally and emotionally! That I’d have days so draining, I’d wish it all away…then hate myself immediately for feeling such a way. I wasn’t prepared for such a conflict of emotions,  for feeling so much love, guilt, stress, admiration, pride and anxiety…all within the same minute. I still don’t know how to handle this, how to manage my emotions when they become too powerful to distinguish apart. 

Nobody told me that I’d doubt myself in ways I never knew possible, that I’d be transformed from a confident, assured person to a dithering, uncertain mess within moments of entering Motherhood…that all the education, study, knowledge and intelligence would go straight out the window and I’d be left apprehensively second-guessing my every move! That I’d feel like a child again myself, needy for others to guide me, desperate for help and comfort but too shy to speak out to get it (like the quiet child at the back of the classroom, suffering in silence – too scared to admit they don’t know what they feel they already should). That I’d look at other mothers and feel envious of their natural sense of maternal instinct, that I’d spend countless moments wishing I knew only half of what they seemed to. 

Nobody told me that my heart would shatter a million times each day – through love, through worry, through pride and guilt. That seeing my child hurting could cause my own heart to rupture in so much pain that I’d feel it beating outside of my chest. That it would break over seemingly mundane moments like a kiss on the cheek or an unexpected cuddle. That the words ‘I love you’ even pronounced incorrectly could render me breathless. I wasn’t aware that my heart could ache for something so lovely, that the curve of an eyelash or the creamy colour of delicate skin could make my heart pound with so much emotion.

Nobody told me that I’d spend endless hours anxiously fretting over scenarios which may never (I pray never) happen. That I’d hear stories of loss, of tragedy, of cruelty and heartache and not only mourn for the families involved but for myself as though I was experiencing it too. That my sense of empathy would grow to be so dramatic, I’d be able to place myself in unwanted shoes and feel the extent of pain. That I’d cry over adverts, over fictional storylines, books and news – praying to never know for real…knowing that a life without my children would never feel worth living.

Nobody told me that I’d change so drastically – not through enforcement or circumstance but through want. That I’d want to be a better person, to change my priorities, to live for someone more than for myself. That I’d love in a way which inspired me to grow, to alter, to become more focused. That every aspect of life  would change, including my dreams and visions of the future. 

Nobody told me  of the gratitude and appreciation I would feel towards my own family. That I’d look at my Mother with a confound sense of understanding and astonishment – that I’d eventually feel the depth of her own love for me. That I’d ‘get’ all the worry and the warnings. That I’d want to show her more than ever how amazing I find her, for her strength and support, her love and encouragement.

Nobody ever told me that my children would grow too quickly. That I’d wish them to remain so little for just one more day but urge for them to grow with the same breath. Nobody told me that I’d look back at photos and panic at how rapidly time passes us by…that I’d feel saddened by the moments I missed absorbed in my tiredness, anxiety or guilt. That I’d wish I played more, cuddled more, laughed more. Nobody told me that I’d count down the final moment of each day, desperate for my children to sleep but also clinging to the memory of each bedtime story, savouring every kiss goodnight. 

Oh man, he’s on the ‘big’ swing!

Nobody told me just how much I’d LOVE being a Mother, that even in the hardest moments, I’d love so passionately and devotedly. That the tears, the struggles, the feelings of downright incompetency would be so intensely worth it. 

So intensely worth it!

Motherhood is beautifully manic, painfully brilliant… and I guess nobody told me because I’d never have understood until I felt it firsthand.