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

Look How Far You’ve Come


Looking at you now, it’s hard to recall the delicate start to life you had. You’re, quite obviously, no longer the tiny premature baby I once watched struggle for breath…no longer the fragile little doll you once were. 

Looking at you now, it’s so clear just how far you’ve come!

You’re relatively tall for your age, you don’t look out of place amongst your peers. You’re still slender (you’ve always struggled to gain weight) but it no longer highlights your previous battles. I look at those beautiful long legs and immediately acknowledge the cause of envy they’ll become. Your slight and toned appearance will undoubtedly serve you well amongst those awkward and harrowing  teenage years. It will become one less burden for you, one less aspect of pressure.

Your gorgeous golden hair is perfectly bobbed…and thick! Like your Mother, it will always be one of your most treasured features. It makes you look older, more mature than you are.

Looking at you now, you’re most definitely a toddler!


That statement is definitely not limited to your visual attributes – you’re also incredibly intelligent for your age.

Last week, your Health Visitor (the same one who is still concerned for Tristan’s development) came to complete your two year check. She was left completely awed by how far you’ve come. Since birth, doctors have given us a period of grace to meet milestones, to compensate for the nine weeks of development you missed out on in my womb. There’s been less pressure to meet milestones in the same timescales as your peers, less pressure to perform at the same rate of full term babies. Yet, at only a day after two years from your due date, she arrived – clip board in hand – eager to complete her lengthy questionnaire.

When Tristan turned two, the sole purpose of the questionnaire was to check gross motor skills…could he climb, could he jump? I felt instantly saddened when I heard it was your turn, afterall, why did we have to endure telling her all over again that you couldn’t do any of the physical things on her list, that you could barely manage the physical milestones of a nine month old? However, this time, your emotional awareness was also to be measured. Doesn’t that sound utterly crazy? That a two year old would be checked for skills some adults can’t master. 


You left her amazed! She couldn’t digest how excellently you scored. 

Thankfully (and to my delight) she left out the questions about what you were physically able to do…but we still took pleasure in demonstrating what new skills you’d been working on. Instead, she focused on your mental astuteness. This proved, much as we’d thought, that you are a very bright and capable little girl. 

In particular, she just couldn’t believe your ability to communicate so effectively. At just two, your Brother struggled to formulate sentences. His bank of key words was limited and lacking in impressiveness. You, on the other hand, can already formulate full conversations. You can ask questions, listen with focus and respond with appropriateness. You can talk in depth about what’s on your mind, tell us exactly how you feel and why. 

I love this about you!


Our undisturbed conversations are fast becoming one of my favourite things in life. They make me think about our future, the bond we’ll have, the relationship we’ll share for life. I can’t wait for the discussions we’ll have over boys, your dreams, your hopes and wants, thoughts and feelings. It makes me so excited to know that we’ll always be able to communicate with one another, we’ll always understand one another as well.

Your creativity also astounds people. At only two years and two months, you can throw yourself whole-heartedly into imaginative play. You use your imagination in ways which reassure me you’ll always be able to use your mind creatively. You love to pretend, take on the persona as a Mother to your dollies with such ease and enthusiasm. You also interact with your Brother, take on roles as different animals, make each other laugh with so much joy. 

Your sense of creativity makes me so proud! When your journey through education begins, you’ll be able to draw upon these skills to help you achieve. I only hope that this is something we can nurture and grow as you do.

It’s also fair to say that you’re incredibly charismatic. You’ve an easiness to your character which makes you such a delight to be around. You’re forever able to make people laugh with your cute but quirky individuality. Although younger, your sense of leadership is also clear. You seem to have set a precident that your Brother is always trying to achieve. He looks at you to show him how to perform, craves the attention you so naturally acquire. He follows you, copies your every move in a bid to share your limelight. He’s charismatic in other ways, it’s not as natural to him to be so mischievous and cheeky. 

So, looking at you now, it’s only right that we note just how far you’ve come. 

Some days, I look back at your journey, to the uncertainty of your beginning. I recall the conversations we had with consultants, the x-ray which revealed you’d been left with a level of brain damage. I recall those early days at home, the worry over missed milestones…the arguments I had to have just to get your Doctor’s to listen to my warranted concerns. 


I think about the moments I felt saddened by the lack of progress you once showed…the fear that you’d never get to where you are now. I remember every time I cried over videos I saw of younger children doing things you should have already been able to achieve. The pain in my heart that I’d never get to share those moments on your behalf – knowing how shallow this made me – knowing that I shouldn’t care. I was pained not for me but for you! I wanted you to do everything others could, for you to feel equal to everyone. 

I look back at those moments and thank god for how far you’ve come!

Eventually, at the age of two, I can see that you won’t let anything hold you back (okay, so we still have your confidence to contend with but we’ll conquer that). 

Tonight, as I sat reading to your unsettled Brother, you managed to climb out of your bed…you crawled into your Brother’s room in a bid to ensure you weren’t missing out. I know how hard that must have been for you, how much your hips and limbs will have ached yet you persevered…

That determination, that strong sense of will, are what is completely admirable about you! 

All I can say Dolly is that you inspire me! I hope you’re as proud of yourself as I am, I’m floored by your achievements.


Just look at how far you’ve come! 

Love you lots
Mama (p.s: crapping myself until we get you a baby gate 😂)

You’ve Got This


     I’ve not always been noted for my positive outlook. I’m one of those highly strung people who never seem to balance their emotions (surprising considering I’m a Libra and meant to be wholly balanced). I’m either high or low, happy or sad, excited or miserable. My reaction to situations or circumstances is undeniably unpredictable – and by that – I mean that I can’t even predict which way I’ll handle somethings. 
     Since you were born, I’m definitely making progress here. 
     Before you, I could easily wallow when things didn’t go my way. I could sulk endlessly in a way which would make me quite unbearable to be around. I’d always focus on the negatives in any predicament. In my mind, it was my way of protecting myself. I deludedly thought that if I prepared for the worst, I wouldn’t feel as bad when it actually happened.
      Spontaneously (9 weeks early) you entered this world and immediately taught me that preparing for the worst could sometimes be unthinkable; that preparing for the worst could sometimes be unimaginable. 

     There was never a moment I allowed myself to believe that we’d lose you – even as we waited seven hours for the Doctors to stabilise your condition. Even as we followed the blue-lighted ambulance 30 miles South knowing there was every really possibility you wouldn’t be strong enough to survive the journey.
     Following your pneumothorax , the Doctors found themselves in unnerving territory – If they transferred you without being stabilised, you could die but if you stayed at Durham, you surely would.
     As they prepared us for this chance, I heard the words swish around in my mind but I couldn’t digest them. You seemed too super to die, too determined to give up. 
     At 23 hours old, you made me view the world differently.

     I was no longer looking out at the world from the shoulders of a Mother full of vulnerability and emotion. I was looking at it with more strength, composure and self-assurance than I’d ever felt before. I knew instinctively that in your moment of need, I would never let you down. I felt it in my heart that my own strength and conviction was needed to carry you forward. I knew instinctively that I’d always believe in your ability, never doubt your capabilities.
     Nearly two years later and I can’t thank you enough for the strength and positivity that you’ve taught me. 

     Your prematurity made barriers for you we’d never imagined. You’ve had so many obstacles to overcome. So many more fights to conquer than other children your age. Since your diagnosis with Cerebral Palsy, were realised just how many challenges you’ve actually had. Many of which you must have suffered silently for so long but your attitude towards overcoming every barrier is truly amazing.
     You’ve a zestiness that is utterly captivating and instantly contagious. Your passion to succeed is completely admirable. The way you handle your disability makes me feel so incredibly proud of you. Every doubt you’ve heard us utter has played on your mind, willed you to prove us wrong. 

     There hasn’t been one challenge thrown your way that you haven’t tackled with ease. Your blasé attitude and confident approach to overcoming your ailments has, on many occasions, given me insight and perspective. There have been many times I’ve worried about your condition. There have been many times I’ve wanted to cry inconsolably for fear of what your future may hold. There have been many times where I’ve wanted to focus on the negatives and prepare myself for the worst.
     But every time I do, you show me that there really is no need to.
     Today, you met another milestone, one I’d once thought I’d never see you do. You pulled yourself up into a sitting position! For so long, I waited for you to sit unaided. It wasn’t until you were 18 months that you eventually learnt to hold your own. This accomplishment felt massive and although I beamed with pride, a little part of me still focused on the fact that your sitting wasn’t natural. You could only hold your stance if you’d been positioned, the notion of sitting on your own hadn’t registered in your mind. Having cerebral palsy, I knew that this would always be your biggest barrier.

     Your brain doesn’t communicate to your limbs the way that it should. It doesn’t send signals intuitively. We’ve been told to prepare ourselves that it may never learn to send those messages. We’ve been told to prepare ourselves that you may never walk. Although I hear this warning, I can’t allow myself to believe it. Your progress today proves that you won’t be defeated.
     I see you progress so rapidly recently that I feel more and more excited for your future. There’s no goal unreachable to you, no target you won’t strive to achieve. That tenacious attitude of yours inspires me to be more like you. You don’t see the negatives, you don’t focus on failing – and that is what I love about you! 
     Thank you for showing me a different way to be, a more positive, more constructive, more enthusiastic way to be.
     You make me hopeful and incredibly proud – I’m more grateful for the strength you’ve show me and the way you guide me to being a better person.
      You’re my fighter, my Warrior Princess, my Dolly – my daughter! And you’re completely amazing. 

     You’ve got this!

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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You’re Ready

  

  
Okay Dolly, here it is; I’m sorry but I’m putting and end to my ‘no rush’ policy. I warned you a while back that it wasn’t working for me any longer. Well,  I can now see that it’s no longer working for you either.

I have to admit, you’re not a baby any longer. You’re not my delicate, tiny, premature baby any more – you’re my ferocious, determined, joyful toddler! 

Somewhere within the past two months, you’ve flourished. Somewhere within the past two months, you’ve decided that you’re ready.

I wish I could take the credit. I’d love nothing more that to say ‘yes, she finally listened to my pleas’ but I can’t deny, your inner-strength definitely had something to do with it.

You see, two months ago, we were told you had cerebral palsy. One dismal afternoon, we headed to an appointment with a bone specialist. You’d been diagnosed with spastic hips and we’d been informed that you’d most likely require hip surgery. In comparison to the heart surgery you’ll undoubtedly require, this seemed nothing. I headed out that morning excited for answers, giddy about having a plan to move you forward. 

It didn’t go to plan.

The specialist examined you within minutes. His hasty approach made me feel even more relaxed – I believed it must have been simple. Eventually, I felt as though something had transitioned smoothly. I sat confidently awaiting his diagnosis, convinced he’d agree that you could be fixed so easily.

I should have known, noting is ever as easy as it seems.

‘Siena’s problems aren’t physical, they’re neurological’ he brazenly uttered. To him, this revelation wasn’t anything new. It didn’t appear daunting or unusual. To me, it instilled fear right into the core of my being. It paralysed me momentarily. I wanted to vomit.

I don’t know why my reaction was so strong; we’d known that there was undoubtedly going to be some backlash from the bleed on your brain at birth. However, for seventeen months, it had been so easy to convince ourselves that these would be minimal. 

  
Especially at the start! You’d met most milestones easily within your adjusted timescale. Doctors had been pleased with your development, we’d marvelled at your tenacity and prevailance. Other than your size, you competed with your friends. You were eager to be a part of the game.

At nine months, we registered that your physical developments were slowing. You couldn’t roll, couldn’t sit, couldn’t maintain neck muscles for a prelonged period of time. ‘She’ll do it when she’s ready’ we’d repeated – half convincing others, half convincing ourselves. However, internally I knew something wasn’t right. At your nine month check up, I insisted on physio. Luckily, your paediatrician took little persuading. He sensed it too, he recognised you needed help.

At seventeen months, physio seemed to have changed nothing. For eight months, I tried to maintain my patient stance of not rushing you. There’d been fear of hurting you, fear of pushing you too far. Nonetheless, I’d remained desperate for you to flourish.

The diagnosis of cerebral palsy had seemed so daunting to me initially. I didn’t know what it would entail, what barriers you’d have to overcome. The notion of stepping outside of our comfort zone knocked me. I had only just adjusted to all of the other challenges you’d thrown our way.

  
Naturally, your paediatrician had wanted to explore this further. Our last meeting resulted in many more medical appointments – weekly intense physio, hydrotherapy, portage, speech therapy, an eye exam, a kidney ultrasound and scan and an MRI to be precise (hopefully, the MRI will confirm the true diagnosis of your neurological ailments). To say this was overwhelming would be dressing it down.

But, it was exactly what we needed…a plan to rush you! 

I think you sensed it, I think you understood that this was your warning to step up your gain.

  
These past two months, you’ve uncoiled. Like a young bud in the springtime, you’ve opened your petals and revealed your true beauty and strength. It has been  miraculous. 

Within two weeks of your appointment, whilst celebrating your friend’s first Birthday, you chose to sit unaided. It was as if you looked at your fellow peers and finally decided, you wanted to join the party.

Almost two months on and the transition has been impeccable. Tonight, you sat upright in the bath for the whole entirety. You held your hands out and splashed your brother playfully, you sang to the tune of ‘twinkle twinkle’. 

Your speech is developing so quickly, in a way which is no longer mimicking your brother but in a way which is meaningful. You tell us when you’re hungry, when you want juice, a dummy or bed.

I can see you pushing yourself to limits you’d once found incomprehensible and I couldn’t be more ready to push you more.

You’re nineteen months old already. Nineteen months old and still sleeping in our room. Nineteen months old and I can’t seem to part with you being by my side. Although it pains me to admit that this can’t last forever, I know that I’m reaching the point of letting you blossom.  You’ve shown a desire to be more independent and I know that this is something I must encourage, not hinder.

So, be warned Dolly, I’m relinquishing my control. Now that I know you’re ready to push yourself, that ‘no rush policy’ is limited in its existence.

I no longer worry about what your future holds. Whether your developmental issues are cerabral palsy or some other condition of your premature birth, I know we can succeed together. You’ve the power to overcome any obstacle, the passion to thrive.

I’m so proud of the charismatic, charming but boisterous little girl you’re turning into.

I can see now, you’re ready.

  

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.   

My 1st Letter to My Warrior Princess

Flicking through my phone earlier as I tried to settle Siena, I found the 1st blog I ever wrote (but didn’t publish). It’s always seemed too raw to share before. Eventually, I feel ready.
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Tonight, I’ve sat by your side until 4am. I don’t think you even know I’m there.

The nurses keep telling me that you do, that you can smell my scent and that it will comfort you. So I’ve sat until 4 am and even now I can’t sleep.

I thought sitting beside you would make me feel worth something. I thought it would make me feel as though I’ve actually contributed to your wellbeing. Truth is, I don’t know how I feel.

I’m numb.

You’ll be Seven days old today (or is that now 32 weeks corrected? I don’t even know how old you are. I can’t even work out your age. That’s how fucking useless I am). Seven days old and still tiny. In the last six days, you’ve overcome more than most people do in a lifetime. You’re over the worst of it and for that I should feel grateful. With luck, your chest drain will come out today. I’m praying for this step forward.

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I’ve prayed a lot recently, I’m not quite sure how hypocritical that makes me feel. I mean, I’ve always believed in God but is it selfish of me to need him so much now when I’ve never paid him much attention before? You were blessed at only a day old – my decision was to get you baptised, the reverent talked me out of being so rash. I wonder if he would have stuck by that decision when your lung collapsed. Would a blessing have been enough had you not survived? Would God have accepted you? I can’t bear to think about it. And yet, I can’t stop thinking about it.

In case I ever forget to tell you, you broke our heart last week. There was a moment when you couldn’t be stabilised, you were very close to death and there was nothing we could do.
I’ve never seen your Daddy cry before. Well, not the way he sobbed for you last week. I saw the fear in his eyes, I felt it in his touch. We were all so lucky. If North Tees hadn’t accepted you (no other hospital in the North East did), this could be a completely different story. I can’t bear to think about it. And yet, I can’t stop thinking about it.

This week has been surreal. I really can’t tell you what I’m feeling. My body is honestly numb.

I’ve washed my hands and sanitised them so many times that my knuckles are cracked and bleeding. It hurts so much. The pain makes me feel something. It makes me feel as though I’m doing something for you. My pain is to help you, to protect you and for that, it’s worth it. It also reminds me that the pain I’m feeling is only a fraction of the pain you’re in. I want to take your pain away, I want to inflict it on myself and make you feel all better. If only there was something I could do.

But there’s nothing I can do. I’m physically useless.

The nurses keep telling me that you can sense me. That my touch makes your sats improve. But what use is that if I can only hold you for half an hour each day? I can’t even keep the windows in your isolette open for too long. I’ve been there to attend to your cares most opportunities. The only times I’ve missed have been when I’ve been with your brother instead.

He misses me so much, I’ve watched his heart break this week too. He doesn’t understand what has happened but he feels it. He knows we’re all hurting. I hurt for him, I hurt for you.

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I’m hurting because I genuinely don’t know what to do with myself, I just want to do something worthwhile.

I’ve been expressing – the Doctor says that breast milk is better than any medicine. So, like clockwork, I’ve collected milk for you. Once again, the pain makes me feel better. It makes me feel as though it must be worth it.

It’s close to 5 am now and I want to be up for your cares at 8 so I’m going to try and sleep. I don’t even know why I’ve written this, you don’t even know who I am. It’s made me feel better though, maybe I’ll sleep now that I’ve processed some of my thoughts.

Sweet dreams baby girl, my warrior princess. Let’s take on the world together later. Let’s make today one to remember.

Holding Siena in my arms, nearly a full year on from this, I wish I could say it was hard to remember feeling that way. My warrior princess has been quite the fighter. She’s stronger and more determined than ever but those feelings won’t disappear anytime soon. I’m coming to terms with the turmoil we experienced last year. It’s my time to be determined – I’m determined to move on from the past and make Siena’s 2nd year completely drama free.

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It No Longer Offends Me

  Straight after having my 1st baby, hormones consumed my life. I found myself an emotional wreck. My mood swings were wild and unpredictable. One moment I’d be intensely angry, a split second later I’d be laughing at whatever had set me off to begin. Mainly, I cried. I was incapable of hiding any emotion or even trying to keep it to myself.

Luckily, as my body settled, my moods did too.

Surprisingly, I found out I was pregnant again only 15 weeks after the birth of my son, my main concern was dealing with those pesky hormones once more. I’d only just managed to regain control, I hated the thought that I was about to lose it all over again.

Then my daughter arrived 9 weeks early and I found myself more in control than I’d ever been in my life. Having always had emotional tendencies, people expected me to be unstable. Even my Mother thought I wouldn’t cope at the challenge ahead. The truth is though, Siena’s prematurity meant that I needed to be strong. I didn’t have time to wallow or feel depressed, she needed me to be focused and she definitely needed optimism.

Siena’s birth forced me to evaluate every character trait I possessed. Before her, I could be sulky and more annoyingly, touchy. I took everything personal, I could be insanely sensitive. Following her birth, I found myself thrust into positions where I could have been so easily offended. It became obvious that people didn’t know what to say to me or how to approach the subject of my sick child. In these moments, I found myself holding back the tears or boiling with anger. Yet, I never showed it. I bit my tongue, forced a smile and nodded in agreement. This wasn’t a time to isolate people or make them feel worse than they already did. I want to take a minute to apologise for being offended, I’m now able to reflect and realise that it was hard for people to show empathy having no idea what we were going through. It was hard for them to relate to our situation or understand that what they’d said was insensitive. So…

It no longer offends me that you told me I was lucky for not gaining weight. At the time, this was not a priority of mine. I would have happily gained 19 stone if it meant I needn’t watch my daughter fight for her life. There was no apparent reason to why Siena came early. This subject made me feel so guilty. Why hadn’t I gained more weight? Could this be the reason why Siena decided to exit so early? If I’d eaten a higher calorific diet would she have been more satisfied? I’m able to banish this guilt now more than ever. Siena was born at 31 weeks weighing 3lb 14oz, I may have only partly cooked her but she was big for her gestation. She had obviously been satisfied and I had obviously fed her enough.

It no longer offends me that you told me I was lucky because at least I could sleep. I didn’t sleep, I’d set my alarm for every three hours so that I could breast pump. It killed me knowing someone else was caring for my daughter, expressing was the only thing I could do to feel like her Mother. In between the expressing, I’d lie awake crying, feeling useless, missing my daughter. Siena had her nights and days mixed up which meant that I would spend all day at NICU watching her sleep. I’d get up and go straight to hospital to hear how she’d kept the nurses entertained with her gassy smiles and wide eyes. I wanted that, I’d do anything to see her awake. When Siena was at North Tees, I lived with her. I’d spend all night by her side singing lullabies and reading her stories. It wasn’t enough, I needed her where she belonged. When I wasn’t by her side, I’d sit watching videos of her brother, longing for a cottage pie kiss. Only now can I see that you were trying to comfort me. You were desperately clinging to anything positive to say, you weren’t aware of how painful my nights were.

It no longer offends me that you told me I had a ‘big’ baby. Yes, for her gestation Siena was big as I mentioned before. This comment made me feel as though my worry and doubt about Siena’s health wasn’t warranted. It made me feel petty for getting upset. Siena was more poorly than we ever let on. Her early days had been extremely scary. Her size was an indication that she had been progressing successfully but it didn’t have a direct impact on her health. I’m now able to see that you were offering me words of comfort and that it was my problem for not seeing that immediately.
It no longer offends me that you told me I’d have a baby for longer. Once more, this is not something I cared about. I didn’t care whether Siena was big or small, like a baby or a toddler from birth. I just wanted her to be healthy. Siena is now 8 months and she is still very much like a baby. You were right, I’ve cherished every moment with her – and knowing she’ll be my last, I’ve been able to savour each shoulder cuddle, every bottle. She’s growing so quickly now and I’m ready to watch my caterpillar transform and grow her wings.

It no longer offends me that you tell me you wish you’d go into labour early/had gone into labour early. Now this one used to really upset me, having a premature baby isn’t something any mother should want. Having a baby in NICU is not fun. It’s emotionally draining to see someone care for your baby; to not be able to cuddle them whenever you please; to watch them struggle, cluttered in wires and tubes; to not know when they’ll be well enough for home. It’s taken me a while to realise you don’t mean it, you’re just fed up at how shitty you’re feeling. Also, I’ve never reached full term. I can’t judge someone for how it must feel in those final days. Going over a due date can have just as serious consequences too, I now recognise your discomfort and fear…but please, don’t wish your pregnancy away.

It no longer offends me that you told me she’d be ‘normal’ one day (she’s my daughter, she’s got no hope of ‘normality’ ever). When Siena was 1st born, she still felt ‘normal’. As she grows, she still feels ‘normal’. She’s smaller than other babies her age, she’s not advanced as those babies either but she’s perfectly formed. Yet now I see that she isn’t ‘normal’ she’s blessed with hope and strength. She’s sprinkled with miracle dust. I no longer hear this statement as you judging her or thinking of her as ‘abnormal’ I now can accept that all you meant is that one day, her hard start to life wouldn’t be noticeable. One day, people won’t realise that there was ever anything different about her.

It no longer offends me that you told me Siena was ‘becoming beautiful’. To me, she has always radiated beauty. Even when covered with wires, when her veins shone through her skin, when she was covered in bruises from pin pricks and needles, she was magnificent. At the time, your comments made me feel as though once you thought she wasn’t. It made me feel as though her prematurity made her ugly. It’s only now that I can accept it might have been harder to spot her natural lushness to those who didn’t study her with love. As she grows each day, she does flourish and I know you can now see what I saw from the start.

It no longer offends me that you chose to avoid me but I’ll also never forget. When Siena was born, my eyes were opened to those who had the strength to help and those who couldn’t support me. There were friends and family members who never once asked me how Siena was doing, never once asked me how I was coping, never once visited her in the 5 weeks she spent at hospital. At the time, this hurt me so badly. I felt as though they’d rejected her. I now accept that just because my world had stopped didn’t mean that it had for others. I also know that some people just didn’t know what to say to me, I think of whether this had happened to someone else, would I have done the same? I’m sorry for being offended, we weren’t your problem to deal with.

When Siena was in hospital, I’d hear these things and couldn’t accept them for what they really were. They were meant to be comfort. They were meant to make me feel better. I can see now that the problem lay within me, not within those who said them. I can now think logically and know I’d probably offer some of the same words to others had I not experienced how they made me feel. To those Mammies still going through this early journey, try not to hold these comments in your heart. Look at them on face value and try to find the comfort others try to offer. It’s not easy for you but it’s also not easy for others, they’re trying and that’s what counts.

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I Won’t Rush You to Grow

  

We were lucky that you were a good size for your gestation. For 31 weeks, I’d done well to get you to 3lb 14. Plenty of people told me that I had ‘a big one’ and, although the phrase itself made me boil with anger, I saw how I was meant to take comfort in it. 
Still, you were the tiniest baby I’d ever seen. The 1st time I saw you, you were lying flat on your tummy. Your legs and arms hadn’t yet uncoiled and you reminded me of a frog getting ready to leap. You were beautiful. Your eyes were closed but I could see from the start that your features were perfection. You had the cutest button nose, your lips were perfectly poised, your ears were so flimsy that they had folded over (this, in itself, drove me wild with love). Your legs were long and so were your fingers. We’d expected the legs, your 20 week anomaly scan had shown that they were ‘abnormally’ long. We’d laughed about it ‘she’ll be a model with those pins’ we joked. ‘She’ll make us rich with those stick’ we said. They lived up to expectation. Slender and sleek, they made you ever more gorgeous. The fingers were also a talking point. Your Grandpa, a wannabe musician, took pride in them the most. ‘She’s going to be a pianist’ he beamed. 
We had big dreams for you from the start. 
You were exactly one week old when the doctors performed the brain scan. It was routine and we were confident that everything would go smoothly. In the seven days you’d lived, we’d never known a more ‘clued up’ baby. You’d had complications with your lungs and had been placed on a ventilator as you couldn’t breathe on your own but we’d seen a side of you that showed how bright you were. When you were awake, you engaged with us. You stared at us and seemed to take in your whole surroundings. We never expected to hear the term ‘brain damage’. 
The results from the scan showed that you’d had a bleed to the brain. The doctors sat us down and explained exactly what this could mean. ‘The excess fluid could drain and leave no everlasting side effects’ or ‘Your daughter could have a level of brain damage’. They explained that your bleed was known as a stage I, the smallest kind of bleed. Once again, we were lucky to know that the chances of you having permanent damage were small…but yet still possible. 
We were told that the most likely effect of the bleed would be learning difficulties.  In this moment, I felt split. The shallow side of me (one that I’m not proud of) worried insanely. I’m a Secondary School Teacher of English, what would my colleagues think if my child wasn’t clever? I felt disgusted in myself then and even still now, confessing it to others.
 The other side of me didn’t care.  You were my child and you’d already done me proud. Whatever obstacles were thrown in our direction, we’d conquer them together. You were strong, stubborn and determined. This was clear from the very beginning. I knew those qualities would see you  right through life.
As a parent, I believe that a certain level of ‘pushiness’ is healthy. After all, no-one wants to raise a lazy kid. All parents want the best for their children and, being a child ourselves once upon a time, we’re aware that sometimes it takes a little bit of nagging and drive to motivate. I certainly wasn’t going to sit back and accept that you might not fulfil your dreams.  
However, here’s my second confession, another moment I’m hugely not proud of. When you were 1st born, I struggled with guilt and envy. It’s the envy that now makes my stomach turn. I envied the women in ward 10 with their fully grown newborns. I envied my friends, still pregnant with sprouting bumps and growing foetuses. I envied babies bigger than you, more advanced than you. I envied those who gave birth and took their babies straight home. I knew of four people who delivered in the time you spent in NICU. Although pleased for them, I wanted it to be us. I put pressure on myself and inadvertently you, to get you home, to get you bigger. 
My emotions were massively conflicted. Partly, I knew you needed time and patience. Partly, I knew I shouldn’t pressure you. I thought to myself ‘I won’t rush you to grow’.
You’re 5 months old now and make me proud every minute of the day. You don’t look like a 5 month old baby (in fact, you’re still in newborn territory). You’re not as advanced as a 5 month old baby either but that’s fine. After all, you’re not meant to be 5 month old yet. The 1st time you smiled, at 13 weeks actual, will remain in my heart forever. It proved that you were on track with your corrected age. Today, you smile on demand. You babble when I look at you (in fact, you’re quite the chatterbox). You seem to know your name and you’ve started to cut your 1st tooth. You’ve started weaning and handled the spoon better than your brother did. You can’t roll over yet or hold your neck perfectly on your own but so what?! I remember a time when you couldn’t breathe for yourself and now you’re living, growing and developing with ease. You’ll do things in your own time and I’ll be proud of you forever.