I really hoped that I had managed to get around to blogging before now but in all honesty we’ve been too busy staying out of hospital and enjoying quality family time at home! I know, I can’t quite believe it either …Oli southampton.png

This summer has been so lovely and Oliver has been as good as gold. We’ve had frequent routine appointments but other than that we’ve spent our days either in the hot tub, playing or getting out and about. It’s been the first prolonged period of good health and progression with Oliver since he was born and we’ve not taken one moment for granted.

He’s turned into a little piglet and is now eating ‘proper food’- blended mash/veg/chicken daily and gobbling it up. Of course, there is still the odd cough/splutter but he’s actively chewing and moving food around his mouth which he just didn’t do for so long.

His swallow assessment lady (I know, ever technical with correct professional terms) has agreed to hold off on a video fluoroscopy for the time being too – woohoo! I’m definitely feeling hopeful. We now just have to get him to master drinking from a sippy cup as opposed to a bottle; fingers crossed it just clicks one day.

The standing frame has essentially been made redundant at the moment. He’s still in it occasionally but he isn’t so keen on his piedro boots. The standing frame was great but in a sense it’s quite restrictive; he gets quite bored and frustrated now because he just wants to be moving. Also, it requires far more effort from him to play in there as opposed to his chair so there’s probably a sneaky element of laziness there too.  oli eating

 

oli playing 2

Despite Oliver not being able to sit/stand/support himself I’ve often wondered whether if he was supported and the option for him to move his legs was there whether he might give it a whirl.  So, we spoke to his physiotherapist about a walker instead of the standing frame to see if it might encourage him.  She agreed and we’ve got an appointment at the beginning of October to go and see what one will be most suited to his needs. So excited – rock n’ roll lifestyle right here lads.

Medically we’re still in the same boat really. We had one abnormal result from his skin/muscle biopsy which has been referred to a mitochondrial team for further testing and analysis. Again, we’ve been given no definitive timescales nor information on what we can expect to come from it or what it may mean for Oliver’s prognosis. Shock, it’s another waiting game. He has a neurologist appointment in the near future so hopefully we may get some form of an answer or at least a plan going forward then.

 

hot tub olby

I won’t lie, despite our circumstance not essentially changing it still affects us when we receive news of any sort. I suppose we don’t know its significance or relevance yet, but it’s still ‘something’ for us to take on board and work into our considerations.

It resurfaces those horrible feelings of uncertainty and anxiety surrounding the unknown. It brings back those moments where the ‘what if/but’ questions endlessly intrude our minds. Although, we’re slowly developing and realising how important it is to allow ourselves the time to have those moments, those moments where we ‘lose it’ for a little while and then rationalise the situation and remember that still, we have no diagnosis, and that still, we don’t really know a great deal about Oliver’s illnesses. And, of course, to just take one look at him and see how well he has been doing and how happy he has been recently. God love him!

oli swing

Other than Oliver’s recent happenings, not a great deal has been going on. We’ve just been enjoying settling into our new home and getting back on the wedding planning train. What we had booked we ended up cancelling as it was just too much pressure and there was no way Oliver would’ve been comfortable. It was booked long before we had any idea of the extent of Oliver’s conditions and in hindsight pushing it back was wishful thinking.

So, we bit the bullet and cancelled. Initially, it was a weight off with everything else going on but then it sank in and we realised how much we do want to get married.  So, here we go again. It’s going to be very intimate, small and in our back garden with our nearest and dearest. Oliver has all of his creature comforts (ok, mainly the swing) and sharing our day with the people who have been there for us throughout everything is all we need.

Bring on the good times! (pretty please)

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.
Oliver pic blog 2

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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You have spent nine whole months nurturing a new life growing inside of you.  You’ve bought countless items of clothing, nursery decor and toys.  You’ve read all the books, you know all of the different options out there and the benefits of diverse parenting styles. You’re prepared and you’re ready.  You’re so excited and impatient for your perfectly precious bundle of joy to arrive. The future can’t come soon enough and it’s bound to be filled with happiness; of course it is.

We’ve all seen endless articles, blogs, and documentaries about the difficulties of parenting.  Some are extremely serious, others have a slightly more humorous take.  The sleepless nights, the pushing your relationship to breaking point, the endless cycle of nappies and feeds – but then it gets better, it always gets better – doesn’t it?

Your child may roll over or smile for the first time, they may sleep through the night or say their first word, and then all of that strain disappears, floats away and becomes a distant memory.  They flourish into a beautiful tiny human, who may be clingy or independent, you may not get a minute to go to the toilet by yourself because they’re so intrigued as to what you could be up to.  Ultimately, you live happily ever after as you watch them grow into a beautiful young child with their own cheeky personality.

But – what about many families who don’t have that luxury? Families whose babies are poorly (seriously poorly), or families that wait and wait for that oh so eagerly anticipated milestone that never happens. Families who spend more time at the hospital than their own home as their child is admitted so frequently.  Families who long for that cheeky personality to come out and not having a minute to go to the toilet themselves.

We all see breastfeeding being advocated everywhere; formula feeding almost seems like a swear word nowadays. But, what about babies who don’t have the ability or strength to feed themselves?  Babies who require a tube, a peg or special milk as they aren’t gaining weight as they should be.

There are babies who are sight or hearing impaired, who cannot support themselves and eventually require aids, babies who are mentally impaired and cannot communicate as they wish to.  Sadly, the list goes on.

Maybe these things merely aren’t considered when you have a healthy baby and I suppose for many reasons they wouldn’t be.  However, having had the most difficult year of my life to date (albeit the best as I welcomed my beautiful baby boy into the world) I’ve found that there isn’t a lot of support, articles or advice on how to cope when life isn’t necessarily as you thought it would be.

The only way I can describe having an unhealthy baby is soul destroying, heartbreaking and eye opening.  When I say unhealthy I mean constantly unwell. There is a problem, or sometimes multiple problems or conditions that they may never be able to overcome.  You have to adjust as you don’t have any time not to adjust; after all your baby needs a parent.  However, the overwhelming exhaustion and worry can soon catch up.  It’s a devastating grief that consumes you when you finally take everything in, even though you have to keep going – you have to.

Nobody wants to think about these eventualities of ill health or life not being as they imagined.  It’s upsetting and it’s scary; it’s the unknown.  But maybe, we all need to normalise it a bit, as it happens far more often than we are exposed to and led to believe.  Good health is so delicate and fragile, yet we seem to take it for granted until something happens that makes us realise just how lucky and blessed we are.

I’m sure my baby (well child now) isn’t by far the worst off in the world, but he’s certainly not the best.  I realise this is all a bit doom and gloom and sadly it’s not the nicest topic in the world, but it’s one I feel I can discuss openly and honestly.