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

You Gave Me Purpose


    Purpose. It’s funny to think but the power of purpose is often forgotten about. In our hectic days and manic lives, purpose can become lost or confused, hidden or overshadowed. Yet the power of purpose is phenomenal.
    Purpose drives us forward, pushes us to achieve. 
    Without purpose there’s simply no point. It’s the catalyst for our actions, the sole reason for why we do.

    For so long, I searched for purpose. I lived, I breathed, I existed. But nothing felt worthwhile, nothing felt meaningful. 
A life without purpose just isn’t fulfilling. You can carry out routine procedures but the joy behind it just isn’t felt. It’s sad, when you think about it, to consider that some people never recognise purpose. It’s sad to think that purpose can be so easily masked or mistaken. 

    I had no idea myself just how powerful purpose could be…until there were you!
When you entered my life, you revealed my purpose. I know that this sounds cheesy but I need you to know this. I need you to always remember that my purpose was you! 

    Having children is certainly life altering. There’s times everyday where I still feel so intensely overwhelmed by Motherhood, so intensely submerged. I’d love to say that this was always positive but it’s not. There’s times everyday where I need to say ‘I didn’t enjoy that’ and not be judged. I mean, who really wants to argue with a two year old in public? Who wants to feel undermined by a toddler, with little beady judgey eyes on show? Who wants to feel embarrassed and worthless? Throughout these trying moments, please never forget that I still find reassurance in my purpose.


    Throughout all the mania, there’s something so magical about it all! Something that makes it so outrageously worthy.

    Before your Brother arrived, my body had meant nothing. I’d overworked it, abused it. In an attempt to find purpose, I’d put it under immense duress to stay slim and slender. Your Brother taught me that being ‘skinny’ wasn’t my purpose. As my hips cracked to make way for his arrival, I accepted the full extent of my body’s purpose and worth. The purpose of my body was not to be viewed as beautiful, beauty lay in the roundness of my childbearing belly. The purpose of my body was to protect both you and your Brother – through childbirth and forever after. Your Brother taught me to love my body, to appreciate every curve. 

    Suddenly, I had purpose.


    I had purpose to live, to breathe, to take care of myself the best I could. The change in me began, I felt it from within. Unlike before, the most measly of tasks could supply pleasure. That feeing of pleasure made everything so worthwhile…late nights, early mornings, lack of sleep…all of it had purpose!

    When you arrived, it’s fair to say that I already had purpose but nothing could prepare me for how much more purposeful my life would become. 

    The day you nearly died, I realised my purpose was to make you stronger. Your strength was already admirable but I needed to teach you to WANT to survive. I knew that I needed to teach you to see how magnificent living could be. I needed to teach you that living would be worthwhile! I knew that this could only be accomplished by showing you all the wonders of life, to show you how to be a glass-half-full kind of person. I knew that my only way of succeeding in this would be to change my own mentality (this harder than I’d like to admit, I’ve too many people in my life who ridicule this outlook on living, too many people who’d rather focus on the negatives). 


    Suddenly, I had purpose to change.

     Then, the day we discovered you had cerebral palsy, I realised my purpose was also to champion you. Your determination was just as admirable as your strength but I knew that I needed to make you feel the extent of your worth. I realised immediately that I just couldn’t ever allow you to feel self conscious or doubt. The only way I’d succeed in doing this is to show you how to love yourself, that this also meant me having to love myself too (again, this is harder than I first imagined. For too long, I’ve listened to the listing of my flaws, the reasons as to why I shouldn’t). 


    Suddenly, I had purpose to accept myself for who I am.

     The day I heard that you may never walk, I realised that my purpose was to support you – both physically and mentally. If your own body won’t supply you the means to show you the world, then mine will. The purpose of my arms is to carry you wherever your heart desires. The purpose of my legs is to walk you wherever your feet want to travel. The purpose of my heart is to love you enough that you won’t feel hurt by the rejection of others. 

   Between you and your Brother, my life will never be short of purpose. Purpose to love you, protect you, guide you and direct you. Having purpose has given me more confidence and strength than I’ve ever felt before. There’s something so gratifying about knowing the importance of your existence. Never before have I felt so comfortable in myself, known what I deserve and what I don’t. 


   So, through all the hard times, the tears and the tests – I need you to know that I’m so grateful for my purpose. 

    Thank you for giving me purpose, thank you for making me a Mother, thank you for giving me the gift of watching you grow.

Love you – Mama 💕

I Hurt because I Don’t Know How to Fix Things


Ever since you arrived, I’ve had conflicting emotions between you and your Brother. I’m desperate to preserve his childhood, I watch him grow so swiftly that I want to pin him down and clutch on to his baby demeanour for as long as I physically can.
You, on the other hand, I’ve pressurised to grow.
Knowing you’ll be my last child, a part of me has passionately savoured the lengthy wait between each development. You’ve been my baby forever and I need you to know how much I’ve appreciated that. But still, I will you to grow.
The hardest part of your disability for me is the ‘not knowing’. We knew from birth that your brain bleed would leave permanent damage – it wasn’t until you turned 17 months that we learnt the extent of the trauma. 17 months of anxiety and doubt. I thought that once we had confirmation of the cause of your slow progress, I’d magnificently feel better but now knowing you have cerebral palsy leaves us with a new extent of uncertainty. 


There’s every real chance that we’ll never see you walk unaided, never watch you dance your 1st dance at your wedding, your Father may never be able to walk you down the aisle. This kills me! Especially because we’ll never know you won’t do this until you don’t. 
There’s a million moments each day which take me by surprise – I can look out the window at our neighbouring children chasing butterflies, with that wild tenacity young children have, and feel paralysed with dread that I may never be watching you join them. I can load up social media and see videos of children much younger than you climb slides or take their first step and feel sick to the pit of my gut that I may never share those moments for you. After all, it’s not for me that I want these opportunities – it’s very much for you.


You’re growing more mature now, you’ve started to realise you can’t join in. I see the frustration in your eyes, feel your heart ache with every glistening tear which rolls down your cheek. I spot the desperation in your mind to fit in, I watch you idolise other children, admiring their movements and itchy to copy. It’s that same will and desire which makes me feel more at ease.
You’re too determined to give in. You’re too strong to not conquer your hardships. 
More than ever, I’ve seen you transform recently. Our latest holiday was almost a catalyst for your growth – you decided to join the world of toddlerhood. Each night, the music would begin and your legs would spontaneously thrash out shapes, not too dissimilar to dance moves. Your arms would join in and your smile would radiate the space around you. Your laughter was infectious, captivating. You squealed until we took you to the dance floor, broke down if we tried to remove you from the fun. 


It was both mesmerising and incredibly hard in equal measures. Mesmerising because I’ve wished you to grow for so long that I almost couldn’t believe I was watching you do it! Hard because you harboured so much frustration and resentment at the lack of your own ability. Each night began with your untamed laughter but ended with your violent cries. 
This is why I will you to grow. 
As your Mother, I’ll always want you to succeed in everything your heart desires. I can’t handle listening to you scream because you want to run with your Brother. I can’t handle trying to settle you because you want to dance independently. Each head-but, each bite is confirmation as to how much you’re hurting. You thrash outwardly to make us identify with your pain. The thing is Dolly, I already feel it just as strongly as you do.
I hurt so much. I hurt because I don’t know how to fix things, don’t know how to get you to where you want to be.


All I can do is cuddle you, let you air your frustration and encourage you to succeed…even if this means picking you up after every single fail.
I’m proud to see you toddle, so grateful for the progress I see you make. You’re no longer my baby and I promise I won’t treat you as one, I won’t hold you back in ways that may be harmful to your development.
Together, we’ll do this. Together, we’ll make sure you have your moments…but if, somehow, we can’t – please remember that I’ll never ever give up on you. I’ve said before that I’ll carry you forever. If there ever comes a time I can’t carry you any longer, I’ll do whatever it takes to make sure you still succeed in everything your heart desires. I’ll push you, I’ll guide you, I’ll always support you.

I’ll Carry Her Forever


For as long as I’ve been a Mother, I’ve been completely honest about the guilt I’ve harboured. It’s taken shape in many a form, sought me out at some point every day.
Guilt has consumed me.

Two and a half years into my parental journey, I thought I’d learnt to tame it. Then…our world changed and I was thrust into a new, more intense and unreasonable state of guilt.

Siena was born prematurely at 31 weeks; it was her birth which triggered the most uncontrollable guilt I’d ever accosted. In the past nineteen months, I’ve encountered guilt about every aspect of her premature arrival. I’ve blamed myself continuously for her impatient entrance, convinced myself that ultimately I must have been to blame.


For a long time, I couldn’t imagine ever feeling at ease with the situation. Guilt had become a part of me – a constant reminder of my unforgivable failure as a Mother. It felt as though I’d never escape the reality of having a baby born too soon. The first year of her life was cluttered with hospital visits, stays and check-ups. It seemed that there was never very long between each date but we remained hopeful that life would eventually normalise.

When Siena was nine months old, I started to worry about her lack of physical development. Mentally, she’d shone. She’d showed signs of intelligence and astuteness but physically, she was weak. I felt guilty that it had taken me so long to spot the signs. I’d been happy to blame her slow development on laziness, always thinking ‘she’ll get there in her own time’.

Time passed and Siena remained unchanged. Deep down, I longed to live in the warmth of denial. I wasn’t ready to admit that there was something potentially very wrong.

Two days ago, she was diagnosed with Cerebral Palsy. I sat at her Paediatrician’s desk analysing the results of her brain scan. The damage to her brain was obvious. It highlighted the scan, unashamed and brash. There was no escaping the prognosis.


I’m not entirely sure I can even articulate the surge of emotions that consumed me as I peered at the white lines surrounding her brain matter. I’d known it was suspected but hearing it confirmed, paralysed me. For months, I’d fought away thoughts of ‘what if’, barricaded myself from the possibility. It seemed silly to worry myself over something that might never have been.

But there’s no longer a façade for me to hide behind.

Somewhere throughout her life, the unbearable guilt I’d once experienced had subsided. As Siena met other milestones, we’d cheered and admired her undeniable strength. Watching her transform from the tiny baby she once was to the fierce toddler before us, had, undoubtedly eased the onus I’d concealed beneath my armour. I hadn’t prepared myself for the possibility of its sharp and undignified return.

Here I am, almost twenty months after her birth, feeling guiltier than I ever have. What hurts more is accepting that this guilt will never go away.

At current, I can’t discard the feeling that this is my fault. My body should have been stronger. I should have waited longer between having children. My diet could have been healthier; I should never have forgotten to take folic acid tablets some nights. The iron my body couldn’t absorb, I should have increased it through nutritional rich foods. I shouldn’t have carried heavy objects, should have rested more and for longer. There’s a million ways I could have triggered Siena’s birth – a million regrets I have to live with each day.


If Siena can’t walk, I’ll feel guilty for inflicting disability upon her. If my own body hadn’t failed, her body wouldn’t have either (not that I see disability as a failure…I’m desperate to make sure I protect her from such views).

When she returns home from school crying that she’s been teased for being different, the guilt will kill me inside. I want her to have the confidence to understand that her condition doesn’t make her different. I want her to have the tenacity to educate those around her whose ignorance could hurt.

If Siena comes to me bearing heartbreak that the boy she fancies won’t return her feelings, my heart will shatter. I want her to see the beauty I see, to have the self-assurance and worth not to chase those who don’t deserve her heart.

I once said that I was desperate to chase fairies with her, I feel guilty that I no longer believe this might even be possible. I want to be positive for her, stronger than I’ve ever been but I also need to accept that the stark reality of her future may not allow this. Like every Mother, I had dreams and ambitions for her -I had a preconceived vision of how her life would pan out. Right now, I no longer know what to dream. I don’t want to set unrealistic aspirations which may pressurise her but I don’t want to sound like I’m giving up on her either. I’ll never give up on her!


I’m frantic for her to know that I’ll never let her fail. I have to believe that she’ll be capable of achieving whatever she sets her heart upon. I’ll be there beside her to push her and guide her as much as I can. I won’t let her feel vulnerable by her condition; I won’t let her wallow in unnecessary self-pity.

I’ll carry her burdens so that she doesn’t have to. I’ll carry her worries and anxieties so that she can be free from doubt. I’ll carry her troubles to ease the weight on her shoulders and if she can’t walk, I’ll carry her through life – wherever she desires.


Cerebral Palsy will not define her, shape her, mould her or restrict her…it may be an additional challenge but we’ll conquer it together. Of that, I’m sure.


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Help Me Out Dolly

  
I’m sorry Dolly but I’m going to have to rush you. You see, this ‘no-rush policy’ of ours is no longer working for me. I’m no longer cool with you taking your time to grow. 
I’m getting frustrated; I’m losing my patience.
You’re 15 months old now and I so want you to start acting your age. I’m desperate for you to start making the progress you should. We’ve spent over a year ‘babying’ you the way that you’ve needed but what you need now, is to grow. 

 
When you were first born, we tried to shed light on the situation by laughing about your future “it’ll look so peculiar watching such a small baby sit or walk” we’d giggle. “Wait until she’s talking and people can’t believe what they’re hearing” we’d grin. I couldn’t wait to see you flourish. I wanted to amaze people with your story, prove to them that your strength was admirable. What I fear now, is that we receive people’s pity. 
I don’t want ‘pity’ for you. I want hope! 
Sometimes, I see the way people look at us. Although it could be completely innocent, I read their eyes and recoil from their sympathy. 

  
I don’t want their sympathy for you. I want their awe.
I want people to look at you and marvel in the beautiful miracle that you are. I want them to notice your smile and your powerful eyes. I want them to see that you wear that smile throughout all of your pain, you never show your frustration. You’re dignified and fierce. You’re brave and determined. 
I wish I knew how to be strong like you. I wish I knew how to hide my fears.
My dreams for you have always been aspirational. I’ve seen what you’ve conquered, I know what’s achievable. You’ve more courage and ambition than any little girl I’ve ever met and I’ll make sure you know how much I believe in you. 

  
That’s why I’ve fought! By 9 months, I was certain that we should have seen some physical progress. It had been easy to shy away from it before then, people had been able to blame your size ‘she’s still too small to sit’, ‘she hasn’t got the muscle to roll yet’. I wanted to believe they were right. So, when the Dr deemed you as ‘lazy’, I was happy to accept it.

 Then a year came, and I started to admit that they were wrong. You’ve never been lazy – it’s not a word I’d associate with any aspect of your being, so why would I trust this judgement? Eventually, I made them realise that you were in pain. Eventually, I made them listen to your shrieks as I dutifully carried out the exercises we’d been given. Eventually, they noticed that those weren’t the cries of a lazy child.
The X-Ray showed that you’ve ‘spastic’ hips. This means that your hip joint can’t fit into the deformed socket – the reason why you can’t sit. No doubt, the reason for your cries. I felt sickened. Why hadn’t I insisted earlier? Why had I been so quick to agree you were lazy? How could I have been so blinded by ignorance? You require surgery, we’re not quite sure yet what it will entail. 
Your left hip is two inches shorter than your right. How hadn’t I spotted it? It’s now another thing I worry about. You’re no longer the tiny baby that people look at with joy. You’re the size of a toddler who can’t do anything but lie. I don’t want people to judge you, I don’t want anyone to think you’re anything but ‘normal’ – whatever that may be! They can’t see your strength, the fact that even this is still an accomplishment. It’s something that I’ll be forever proud of, forever grateful for. After all, there were days you couldn’t breathe for yourself.

  
The surgery will fix you, it’ll make life easier too.
Don’t get me wrong, I don’t want this for you. The thought of you needing more surgery – the thought of you needing any surgery – makes me want to vomit. I don’t want you to feel pain, I don’t want you to be scared. But, I know that it’s necessary. 
The surgery will help you grow and I need you to be ready to.

  
I’m ready to catch you as you spin yourself dizzy. I’m ready to chase you as you run with excitement. I’m ready to watch you dance, marvel as those beautiful slender legs bend into pirouettes.
I’m ready to walk with you, hand in hand. I’ve had your back all this time, I’ve never let you fall but I’m ready to sit back and see what you’re capable of on your own.
I’m ready to run with you, through make-believe jungles and woods. I’m ready to hide from witches and catch fairies as they prance in our minds.
I’m ready for you to be the toddler that you should be.
So help me out Dolly, let yourself grow, get yourself ready.
The adventure is yours for the taking.