Oh, my darling boy. There is something so spectacularly precious about you I can’t even begin to find the words to describe it.

To describe your purity & kindness. Your delicate, loving nature and beautiful temperament.
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Your positive energy and determination astonishes me. You are truly extraordinary and I love you more than anything else in this entire world.  Parenting is everything I never expected. It’s a long haul, one of endurance and I’m with you, by your side every step of the way. I will never, ever stop wanting nor relentlessly persevering for the best for you.

Most days, we get through. Others, my mind whirls and I remember that I’ll probably never hear an ‘I love you Mummy’ leave your lips.

You may never have the ability to learn words to comfort me.  You can’t reciprocate nor initiate a warm embrace. But, a strategic shuffle to feel your arm across my neck as if you are holding me is working thus far.

I don’t need the physical appreciation. The deliberate hugs or kisses. Trying to bite my face off at any given opportunity is your thing and I’m fine with it. I’m learning that it will be enough; it has to be.

Although, sometimes it isn’t. Sometimes the burning desire for you to hold and cling on to me, to joke with me, to play with me becomes too much. Overwhelming in fact.

I know that you have bad days and I try my best to nurture you through them. We all do. However, the communication barrier and your inability to find comfort in our words is proving more challenging by the day.

I know when you’re unhappy and something’s bothering you. Despite your frustration being brazen, it kills me that you can’t tell me where it hurts or what you need.olive blog

I mean, I know that you need me, probably not as much as I need you, but you do need me. As a mother, as an advocate, as a carer. Trust me when I say I am trying my hardest to exceed expectations, I truly am, but it’s tough.

It was your birthday the other week and with it came an abundance of conflicting emotions. You were none the wiser. Of course you weren’t. You weren’t particularly fond of the heat and I’m almost certain a sneaky tooth was trying to break through, but you sure are loved ever so dearly by so many people. Whether you showed it or not, I know that you felt it. You felt that warmth and love; you felt safe.

No matter how hard I tried I couldn’t help but feel that pang that I try so hard to shut out. Every photo or video I took, every moment I stopped to take in I had the fleeting thought of ‘What if this is your last?’ ‘How many more birthdays are we going to get spend together?’ Ten, twenty? Two or three?

The words life limiting resound in my head almost constantly and I have the odd moment where the severity of everything you are going through wipes me out. It’s like my feet are gone from under me and I can’t muster the strength to rebalance.

Once one of those thoughts worm their way in they all do; they invade my rational mind and I despise them. I allow myself to panic briefly; to try and envisage a world without you and I can’t. All I see is emptiness. And it’s at that point that my true desperation to fix you unleashes and I cannot catch my breath.Oli bday 2 blog

Then, I look at you smiling so sweetly or sleeping so soundly and I manage to steady myself again. To absorb your innocence for a moment; to envy it. To allow it to nullify those dreadful, yet sadly, potentially realistic thoughts.

I must remind myself that you are unaware of so much. You don’t understand the world as others do and I’m starting to wonder whether there’s a reason for it. You don’t feel fear. You don’t know life any differently and you certainly have no idea just how handsome you are.

You are happy just the way you are. It’s enough for you.

I think know you are far too virtuous for this world and I am truly blessed and beyond privileged to have you as my son.

Happy Birthday Sweetpea; here’s to many more.

In June 2016 I gave birth to the most precious, beautiful, delicate, scrummy baby boy.  Oliver.

He was breech and was born via emergency C-section.  I didn’t actually realise that I was in labour, it all happened so quickly and the shock didn’t wear off for a good while.

I have so many memories that I won’t bore you with, but I think the most poignant would probably be the third or fourth night we had all been at home with Oliver.  I was watching him in his Moses basket; he was settled and sleeping soundly.  I was suddenly overwhelmed with the most overpowering sense of maternal instinct; it was almost animalistic.  The love that I felt for Oliver that night was a surge of intensity, passion and fear.  I was so scared, so anxious, so afraid that something was going to happen to him.  He was so tiny, so vulnerable and precious, all I wanted to do was barricade him in the Moses basket and protect him forever. It was very, very strange.  I burst into tears and had to hold him – somehow he stayed asleep. Maybe he knew I needed that comfort.  I will never, ever forget that feeling.

I might have felt that way that night for a reason given what the future has ended up like, or maybe it’s a feeling all new mums have. All I know is that nothing can prepare you for having a baby.  Nothing.

I was extremely vulnerable and low myself for the weeks that followed.  I became a lot more aware and conscious of my own mortality and those around me.  What would happen to Oliver if something happened to me?  What would I do if something happened to my parents or Oliver’s dad?  I literally did not move from Oliver’s side unless I needed the toilet.  I watched over him even when he was asleep and tried my hardest not to drift off. If I did not have such understanding, loving and supportive family members I would not have gotten through it.

Being a first time mum is the hardest thing in the world, but being a new mum to a poorly baby is a world of uncertainty and undoubtedly draining.  It pushes you to your limits and then beyond.  All any mum wants to do is protect and take care of their baby; when they’re unwell you can’t do that for them and it’s difficult.

At one month old Oliver became very poorly and was admitted to hospital for a week.  Little did I know that this would become a regular occurrence and the months to follow would be 100 times as testing as that first admission.  I was turned away from the Doctors twice before I was taken seriously, which as a first time mum made me feel silly and I tried to convince myself that I was overreacting and that the doctors were right.  Why wouldn’t they be?  Of course there was nothing wrong with him, I was just being overprotective and hormonal.  It was only by chance that our Health Visitor came round the day after, took one look at Oliver and sent him straight back to the Doctors and he was referred to the hospital from there.

Over time I have learned to trust my gut instinct with Oliver and to be confident with my own judgement as he has been unwell so frequently.  To begin with, I was in denial.  Oliver wasn’t a poorly baby, he just hadn’t had the greatest start in life.  I clung onto doctors every word, was extremely thorough with all medical appointments (still am) and very understanding when they didn’t necessarily have a diagnosis or an answer for what was causing Oliver to be sick.

Oh how naive I was.

It’s taken me a long time to trust my gut, to go with my ‘mother’s intuition’ over every other reasoning voice inside my head. I’m ashamed to say there have been countless times where Oliver has been seriously unwell and I’ve hesitated.  What if I’m making something a bigger deal than it is?  What if he’ll be fine within the next hour? Don’t hassle anyone, he’ll be okay.  All babies get poorly at some point, right?

Wrong.

Doctors try their very best, I cannot fault any care that Oliver has ever been given.  They’re amazing and I do not know how they do it; seriously.  I am so very grateful to every professional that has ever encountered Oliver.  However, what I have learned is that they don’t know everything and can often treat Oliver’s symptoms but don’t necessarily know what they’re treating him for.  They’re just trying to get him better and stable again.  Which, in all honesty, is all I can ask for.

I’m an extremely anxious person who over thinks everything (seriously, everything – ironic that I would start a blog, ay?).  I can honestly say that all of Oliver’s experiences, no matter how painful and difficult they have been, have helped shape who I am today.  I have a backbone, confidence and a voice that I now use because of Oliver.  I have realised that there is nothing wrong with asking questions, or in certain instances to disagree with medical advice or ask for an alternative.

I would say it took until Oliver was six months old and seriously ill (I’ll elaborate on this another time) and in hospital (again) for me to get the courage to fight.  To voice every little niggle or concern, to query absolutely everything.  To ask for second opinions and to chase results making damn sure my baby was being looked after as he should be.

It really is true that you know your baby better than anyone; I wish for Oliver’s sake I had realised this far sooner.  Always go with your gut instinct over anything and do not, by any means, let that ‘what if?’ voice inside your head deter you.

Your baby doesn’t have a voice – it’s vital that yours is heard.

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