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.

Well, what a start to 2018! To be honest, I haven’t been able to catch my breath and cannot believe we are almost at the end of January already.

That feels like such an adult thing to say, you know when people comment on the weather or ‘I don’t know where the time goes’ But seriously – where does it go!? I mean, I haven’t even properly begun my pathetic attempt at a diet yet, let alone found a moment to berate myself over failed New Year Resolutions.

I am feeling really positive about this year. I’m way past the whole ‘New year, New me’ crap but am actively trying to have a less cynical outlook on life in general (ever the pessimist).IMG_2102

In hindsight, last year was a total bloody nightmare. Our lives were turned upside down and at times unrecognisable, woeful and incredibly scary. There were numerous occasions where I questioned my capability of parenting and being a functioning human in general.

Therefore, this year my mantra was is to be as positive, happy and optimistic as one can be. I was under no illusion that we would be put into challenging and somewhat daunting situations; I just didn’t anticipate quite how soon it would happen.

When it rains, it pours and oh my have we had a flood and a half.

Amongst other pressures which are too complicated to get into at the moment, Oliver decided he needed another hospital admission for the better part of two weeks.

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Far too often I mistake familiarity for comfort.  I have to come to terms with the fact that it will never get any easier seeing him unwell. He deteriorates so rapidly and I always worry whether it’s the start of something far more serious than an acute illness on top of his other needs.

Nevertheless, having to constantly fight my sons’ corner is growing tiresome. I don’t begrudge it; at all. It’s my job and duty as a parent. To fight for him, to protect him, to shelter him. It just never fails to surprise me how often I am challenging the very people who are supposed to be working with me and not against me.

Medical professionals are exceptional. Seriously, I am more grateful to them than they will ever know. But … why, oh why won’t they listen to me? My child is medically fragile with a range of complexities. I know him. I know what he needs. I know what will get him better 99% of the time. If they would just listen to me and take my advice into their considerations he could be on the road to recovery a lot sooner.

Don’t get me wrong, I really am not one of these parents who think they know everything and disregard Doctors’ knowledge and expertise. I’m a reasonable gal. I am always willing to have an open and honest discussion about Oliver’s illnesses. They can be as blunt as they wish – I would rather know the ‘nitty gritty’ bits than live in blissful ignorance, no matter how appealing it may appear.

But, when he is being admitted for the umpteenth time with similar symptoms to previous admissions – please, oh please, just listen to me! Do the x-rays, take the bloods, get him hooked up to Vapotherm or CPAP or whatever it is he needs this time. Because the longer they wait for different professionals to come and assess him or give their opinion – he’s worsening, he’s deteriorating and he’s suffering.

And – it’s not bloody fair. Because ultimately, they go through all of these motions and inevitably their course of treatment is exactly what I initially suggested …

This most recent time I found myself becoming increasingly frustrated, not least because I am having to chase anyone and everyone for answers, but for him. For the pain that he’s in, for his inability to comprehend what is happening and for not being able to comfort and console him when he needs it so desperately.

It is always draining seeing Oliver unwell enough to require hospital care. Nonetheless, the added stress and uncertainty of whether he is being cared for properly is sometimes too much to cope with.

The Nurses on the ward are all incredibly lovely caring people, but there were a couple of days where my patience was tested. Oliver’s care was less than adequate and in all honesty quite sloppy.

I understand that there are staffing and funding pressures. I am more than respectful and patient when it comes to his care as I know their capacity is stretched with the current demand.   On the contrary, at the very least, I expect basic care to be followed through and will not apologise nor concede this expectation.IMG_1995

More frequently, I am finding there is a limit to my own patience. It’s a fine balance between being compassionate towards the daily pressures staff face but also appropriately advocating for my sons’ needs. Recently, I have discovered that you have to be ‘not so understanding’ sometimes in order to achieve the best care possible.

This is in itself is exhausting. I don’t want to be a dragon, I don’t want to be difficult. I want to say ‘It’s okay, it doesn’t matter’ and sometimes I do; after all they’re only human. But, other times it does matter; it really matters. He is precious, he is my everything, he is complicated and he deserves their undivided care and attention. He deserves to be a priority and he deserves to be cared for competently.

Oliver being admitted should not be an occasion where I have to fight for him. It should be a time where I can solely focus on being a Mother, become estranged to the medical jargon and plead ignorance. It should be a time where I have nothing else to focus on other than being a parent.

Thankfully, Oliver is now at home safe and well, we just have routine appointments and procedures planned for the immediate future. Hopefully, he won’t give us any more surprises!

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Oh, the irony. I’ve basically just moaned after talking about what a positive outlook I was going to have this year.

I guess I’ll blame it on the ‘January Blues’ and can only hope that the rest of the year will bring more answers, positivity, fewer obstacles and considerably less stress …

 

 

 

 

What is there to say? I can tell you for a fact that I spent every night whilst pregnant praying for a healthy child.  I could not have cared less for gender, looks or intelligence.  I just wanted a healthy child.

I was always extremely aware of the risks throughout pregnancy and thereafter.  Maybe that’s why I have been given a child with special needs and various medical conditions. Maybe I was far too aware of the risks, too cautious or too worrying.

I’ll more than likely be looking for an answer indefinitely, but ultimately I will never know.

Honestly, I say I wouldn’t change Oliver for the world. It’s something all parents say isn’t it? Regardless of whether your child has additional needs or not.  But I would change him.  I’d change him in a heartbeat. Does that make me a bad mum?  Does it make me selfish?  Quite possibly.  Most definitely.Initially I think this feeling stemmed from fear.  Fear of the unknown or fear of my own failure or inadequacy to parent a child with additional needs.

Believe me, the guilt of feeling this way is punishment enough.  But I really would, I would give absolutely anything for him to be ‘normal’.  For him to be able to experience the wonders of the world, to be able to make friends and laugh at jokes. To want to strive and succeed at something.  To sit around a dinner table and partake in conversation and eat food independently.  To live life to the fullest.  No limits.

I want him to have it all and I want him to have it now.

I want him to wake up tomorrow and say mum for the first time rather than grunt or squeal, and actually embrace me back when I pick him up.  I want him to actively plant a kiss on my cheek or intentionally grab my glasses from my face in jest.  I want him to look at me and for me to know undoubtedly that he knows I’m his Mumma and that he loves me.

People tell me endlessly that the way he looks at me is different to others. I nod and smile and allow myself to indulge in this fantasy for a second.  Then I’ll be on my own and reality sets in. He has no stranger awareness or separation anxiety. But he looks at me so lovingly and I become conflicted; then again he looks at everyone lovingly …

Maybe it’s a blessing that he is the way he is.  After all, the world becomes a crueler, merciless, more unforgiving place day by day.  He is blissfully ignorant.  Completely clueless.  Away with the fairies.

Nevertheless, he is happy.   Which I suppose is all any parent wants for their child and that is all that matters. Happiness.  So, I am thankful.  Truly and completely thankful for being blessed with the gift of motherhood and having a happy child who doesn’t want for anything.

Oliver has made me a better and a more selfless person, I have found an inner strength I didn’t even know existed.  I cannot thank him enough.

It’s all for you my darling.

xo