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.   

Just F**king Sleep

Just Fucking Sleep…

  

If there’s one thing I learnt very quickly as a new Mam, it was that babies repel sleep. 
It’s just something I physically can’t bring my self to understand. Sleep is awesome. Sleep is incredible! It’s the difference between feeling grand and feeling like utter shit. It’s warm and cosy, comforting and seductive. Sleep wraps you up, cradles you and reassures you that life will be fine…so long as you bag 7 undisturbed blissful hours.

7 undisturbed blissful hours? Holy crap, I can’t remember it. Sleep and me, well we broke up two years ago. 

It’s been the hardest break-up I’ve ever endured. With most splits, time heals wounds and repairs scars but not this time, the longer we’re apart, the shittier I feel. 

It all started the day my son was born (well there’s my first lie, it probably started about 7 weeks before he was born). He entered this world allergic to sleep and let’s face it, after 15 hours of straight unintoxicated labour, I needed sleep. Our 1st night together was unbearable, he cried so much that the midwives made the decision to give us a side room ‘I think we’ll give the other new Mothers a rest’ they said. A rest? A fucking rest? What about me? 

  
It didn’t take me long to figure out that my needs really didn’t matter. I didn’t have a doll to look after, I had an actual human being…and this one hadn’t yet learnt the value of sleep.

In fact, Tristan despised sleep to begin. Our first six weeks consisted of blasting Beyonce’s ‘Drunk In Love’ on repeat until he’d settle (at least I can thank him for my extraordinary karaoke rendition). As soon as the track would end, he’d stir and wake. Our Health Visitor told us that it was likely he had his day and night confused but this just wasn’t the case. Tristan would be awake for at least 17 hours straight each day. It was hell! I bet you’ve heard that age-old tip of ‘sleep when the baby is sleeping’? It was everyone’s top tip of the day every time I moaned about being tired but how can one manage that when one’s sprog never fucking sleeps?! I had no chance.

  
I’d love to say that this phase didn’t last forever and well, I suppose it didn’t. At 8 weeks, he eventually decided that he’d attempt to sleep at night. So, having actually managed at least 4 solid hours in a row, my Husband and I celebrated in a very ‘Husband and Wife’ kind of way…and accidentally conceived our Daughter. 

Sleep was my only immediate concern. I didn’t know if I’d ever be ready to part with its soft, inviting embrace again. ‘Please let us get a sleeper’ I prayed. 

  
When Siena was unexpectedly born at 31 weeks, sleep became less of a priority. Once I was released from Hospital, Siena was still in NICU. I effectively had 5 weeks to try and catch up on sleep before she came home but I just couldn’t do it. I couldn’t settle knowing a nurse was doing my duty for me. So, I set my alarm (for those times I did manage to stop fretting) and expressed every four hours. She came home sleep trained. She’d only wake every four hours for a feed then she’d slump straight back into blissful slumber, she was a dream. 

Just as I thought my love affair with sleep was about to be rekindled, teething came along and boshed all over my bloody good mood! Here I was again, pacing the floor for three hours in the middle of the night cursing my daughter to ‘just fucking sleep’. To make matters worse, her stirring would wake her Brother – just as I’d manage to settle one, the other would rear their head in a tantrum-y fashion. 

My only saving grace was ‘nap time’. If I was lucky, they’d each have at least an hour throughout the course of the day. If I was luckier, this would happen simultaneously. Yes, an opportunity to crawl into bed and hide underneath the duvet! Sometimes, it was my only chance of survival.

  
There were times, amongst the chaos, I’d wonder if I’d ever sleep peacefully again.

Now, at two-year-old, my son is actually amazing. He takes himself to bed at 7pm and very rarely stirs until 6am. His naps are lessening though – he’s a mix between wanting to nap anywhere/everywhere or refusing to sleep even though he’s ridiculously tired. My Daughter, is still a different story. 

She’s become a snuggler! This means, she’ll settle so long as she’s in my arms. Yes, I managed to untrained my sleep trained baby. How do you actually manage to do that? It has to be a colossal failure on my behalf. 

Oh well, I guess I’ll be chanting ‘just fucking sleep’ for a little while longer. 

Zzzzzzzzzzzzz

  

Lessons as a Preemie Parent

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I’ve never hidden the emotional turmoil I’ve faced as a parent in general. I’ve certainly never tried to sugarcoat the hardships I’ve experienced. Parenting is stressful. It’s hard and sometimes demoralising – yet so wonderfully fulfilling!

There’s no rehearsal, no education given, no ‘dummy run’ there to prepare you for the massive shift your life will take once your baby arrives. It’s a ‘learn on the job’ kind of role.

Life as a parent has taught me so much about myself but life as a ‘Preemie Parent’ has taught me so much more than I ever thought possible.

I’m quite certain no healthy pregnant couple ever fully comprehend what going into early labour feels like until they experience it. Labour is dramatic to begin; early labour is a theatrical performance. Only, no-one is acting. The fear is real!

At 30+6 days pregnant, I’d felt prepared for life with a tiny baby again. My son was only 9 months old, I’d just came out of the hard stage but with the remembrance of what little tricks had helped. It was going to be a breeze.

The following day, I was threw into a new position. One I knew nothing at all about – I entered the world of ‘Preemie Parenting’. The lessons I learnt within this role were harder, more challenging but also massively humbling.

So what exactly did I learn?

I’ve learnt that I am stronger than I think. Physical strength is not something you’d associate me with. I am disgustingly weak. As for mental strength, well it had never really been tested. I’d always thought I’d be useless, I’m quite emotional and can’t hide what I’m feeling in the slightest. Yet, as I peered into the isolette at the tiny baby which lay before me, I coped. I continued to cope – day by day, little by little, I listened to what the doctors had to say and I coped. The night my daughter couldn’t be stabilised, I coped. The 20 mile drive South behind my daughter as she was blue-lighted to intensive care, I coped even though there was every real chance she wouldn’t survive. Through the brain bleed, pneumothorax, heart murmur, hole in heart and many returns to the Children’s Ward, I’ve coped. I’ve coped because the strength I need is only half of what my daughter requires and she doesn’t just cope, she thrives. Premature babies have boundless strength – look no further than Tyson Fury (for all I don’t believe in his ideology, his strength is undeniable).

I’ve learnt that I should listen to good advice before dismissing it. At the time when I was focusing my entire energy on getting through each day, I didn’t have the capacity to listen to people’s advice. I was capable of recognising that the words they spoke were meant to comfort me but I didn’t have the time to ingest how important they would become. My daughter required my full attention, I didn’t want to become distracted by listening about ‘the bloke at the top of the road who was born weighing 2lb and is now 6 foot tall’. I didn’t want to know that ‘small things came in good packages’ or that she’d ‘do things in her own time’. A year on, stories of Preemies’ survivals make me beam with pride. I know that small things can be powerful and I’ve learnt first hand that there’s no rushing my daughter. The words of others often flood back to my memory whenever I start to panic. They’re often what keep me calm. If I had to do it all again, I’d take some of that good advice on board sooner.

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I’ve learnt that Siena’s NICU journey didn’t end with ‘Home Time’. Like all ‘Preemie Parents’, we were desperate to take Siena home. Naively, I thought that would be the end of our journey. I imagined that once we took her home, she’d magnificently transform into an ‘average’ child. Of course, I was wrong. For a long time, the hospital appointments, health checks and weigh-ins became routine but premature babies will never be ‘average’. They’re super heroes staring in their very own comic book. Siena has a story to tell, more chapters to write. So many of these have already featured antagonistic viruses, ailments, infections and occurring issues all linked back to her very first battle. Some have caused worry and upset, some have required time whilst others have required hospitalisation, medication, operation…all have required strength. Siena’s next chapter will be heart surgery. Once again, I find myself reminded that her journey as a Preemie isn’t quite yet over. I’ve watched my baby fight so many times already but I also know she can handle it. After all, she’s made with Preemie Power.

I’ve learnt that I’ve no desire to compete with other parents. Parenting will always be viewed as a competition for some. There’ll always be that one golden opportunity to gloat or rub salt in another Mother’s wounds when their weakness is revealed. Being a ‘Preemie Parent’ could mean you’re relegated straight to bottom league of the milestone tables, guaranteed last place in the race…but who really decides or cares? I realised early that there was no point in competing with mothers of full term babies (or any Mother to be frank) because we’re already winners. My Daughter has kicked Death’s ugly behind, I’m pretty sure that’d be defined as winning! She may develop slower that most babies. She’s at a stage where mini-milestones are regularly met but she cannot quite grasp those harder more physically demanding ones. Truthfully, there was a time that I’d let this upset me. Like all parents, I’m desperate to watch her grow and develop but I’m also thrilled with what she’s already capable of doing – breathing on her own. Maybe because I still remember the days when she wasn’t capable of doing this. Maybe because I remember the fear that she’d never breathe on her own. If it takes Siena 3 years to walk then so be it! The most important thing is that she will walk one day, who cares when it happens?

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I’ve learnt never to take my children for granted. I remember shortly after Tristan was born, feeling desperate for some sort of outlet. He wasn’t an easy baby. He cried hysterically for hours upon end. He demanded feeding every hour or two yet couldn’t tolerate his milk which left him pained and unsatisfied. There were times at 3am that I could have packed a bag, left the house and checked into a mental asylum. I moaned about the night feeds and the constant request for my attention. Then, early labour taught me how it would feel to lose a child. The fear moved the very core of me. Siena could have died. Knowing and realising the full extent of the pain that would cause, I transferred those emotions to Tristan. I realised that every day was important, every feed could be the last. Not because I’d lose him but because every Mother loses a baby eventually – they gain a child, a teen, an adult in replace – but those baby days cannot be regained once lost. From that moment on, I savoured the nights Tristan still needed my affection. I cherished every 2am snuggle with my Daughter. I grew to shed the negative approach I’d adopted. Life became easier, more enjoyable.

I’ve learnt a whole new level of love. The love we have for our children is unrelenting. Every parent sees their children as the most beautiful creations to bless this Earth. Before Siena, I didn’t realise how shallow I actually was. I’d seen pictures of premature babies, their minuscule bodies cluttered with wires and paper-thin skin provoked no reaction. The first glance at Siena and I saw how much beauty could be found. She was simply divine. There’s times I’ve found myself justifying her appearance though and this saddens me. “She’s so small because she was 9 weeks Prem” have became familiar utterances to strangers. I’ve listened to people tell me that she’d “grow into her looks” but to me, her prematurity makes her ever more beautiful.

Lastly, I’ve learnt that miracles do exist. Coming from a strong religious family,
I’ve always believed in God but I’ve also wondered whether that was more through habit or being told that I should. He was the first person I turned to in Siena’s hour of need. Throughout her NICU journey, God gave me hope. The bottle of holy water which was used to bless her isolette sat proudly on her shelf. The bible given to her by the hospital reverent was used multiple times when reading her stories. The reverent himself visited Siena throughout her stay. All of these gave me comfort. Believing allowed me to visualise Siena coming home. It gave me hope that she’d live a normal life, showed me that miracles do exist.

I’m lucky to live with one every day.

Being a ‘Preemie Parent’ is, without doubt, harder than I could have ever imagined. The lows are so intensely lower but the highs are also so intensely higher. Some days I feel angry , some days I feel blessed. Most days I feel privileged and proud.

Siena’s journey as a Preemie isn’t yet over and neither is mine as a ‘Preemie Parent’. We’ve plenty more chapters to write.

Here’s to our happy ending…

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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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Nine Months Old, Nine Months On

  
Tonight, you’re sleeping in my arms. It’s taken a while for you to settle but not because you’ve been distressed, you’ve been so full of life. 
You’re 9 months old now and I marvel at how far you’ve come. 

9 months already! The age your brother was when you were born. I think back to when he was your age, it makes me smile with delight to remember him so small. It feels like a lifetime away, I suppose it was – your lifetime away. Then it makes me sad. 

 

This is Tristan while you were in Hospital, his eyes are heavy and that makes me sad.
 
Your birth was such a heartbreaking time for us, especially your brother. His ninth month of life was tainted with abandonment and upheaval. Your stay in hospital forced us to choose between you both. Although the choice was harsh, the reality was easy. You needed us more.

But he needed us too, just as you need me now. 

9 months old. When you were 1st born, I felt as though your brother was old enough to cope without me. Old enough to accept change. He’d never been a ‘needy’ baby. We’d been able to leave him with his grandparents overnight without any upset or withdrawal. Yet, I had always known that our situation wouldn’t be ideal (even when there should have been nearly 12 months between you), that it would be a transition we’d all have to adjust to. I expected turbulent times, was prepared for the jealousy and the anger, the frustration and the confusion. However, I could never have been ready to mend his broken heart. 

Those emotions I’d been preparing for never showed their ugly head. From the moment we brought you home, he was besotted. A ready made friend, a companion and an ally. He loved you instinctively and I beamed with pride (I still do, he makes me proud every day) but bringing you home was only the start of his recovery. 

  
Having you with us eventually meant that we could start our lives together, eventually establish a new routine. It meant that there would be no more days spent away from him, no more nights he’d go without his bedtime cuddle and story. It took him a while but soon, he learnt to trust that we weren’t leaving him if he fell asleep. Eventually, he relearnt how to settle at night. How to close his eyes and know that we’d be there when he woke back up.

The most noticeable affect your birth had on Tristan was in his eating habits. During your time in Hospital, Tristan learnt that there wasn’t many things in life that he could control (it kills me that he learnt this cruel life lesson at such a young age)…but he could control his eating. So he stopped. He closed his mouth and took back the power. He intelligently realised that this earned him some attention. 

We’d spend hours pleading with him to eat, we’d spend days worrying about how little he’d consume. He’d spend feeding times throwing food in our faces, ripping it from his mouth with such intent and disgust. He’d cry at the sight of his high chair, throw tantrums to avoid meal times at all costs. 

Then, one day, he ate. 

Then, the next day, he ate again.

To me, this was our biggest break through. I read it as a sign of his heart mending. I saw in his eyes that he was starting to relinquish his control and allow us to parent him again. He was starting to trust us again. There’s been plenty of relapses, plenty of times he’s used food to manipulate us but now these times don’t worry me so much. 
Your time in NICU also made Tristan anxious. Before you were born, he was care free. He’d trust us implicitly, from dunking his head underwater, to swinging him upside down. Then we left him and he became nervous. Bath times became problematic. He’d cling to us as though he were afraid we were going to let go. He’d cling to us in most places, in most social situations. Last Saturday, he jumped into the pool on his own, he trusted that my arms would catch him. Last week, at his 1st nursery visit, he ran off to play with the other children.

He didn’t look back for me once.

You’re 9 months old now and every day there’s fewer signs of your premature birth. Less evidence that our lives were ever rocked upside down. You still have a heart murmur (or so we concluded from your last stint in hospital) but although your heart hasn’t mended, ours are beginning to. Your brother has started to play again. His smiles grow bigger every day. 

  
I may always harbour guilt for the way your brother felt but having you here makes me feel better. So, tonight as you sleep in my arms, I’m going to snuggle you harder. I’m going to make sure that your ninth month of living is much much sweeter. Then, when I can, I’m going to snuggle into Tristan and make sure his eighteenth month of living is just as sweet too.

It’s true what they say ‘time is a healer’. I’m going to make sure both your hearts mend, I’m just going to need a little more time. 

  

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