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.

These past couple of months have been a whirlwind. Oliver has barely managed a week without appointments, I haven’t had time to blog (brace yourselves, it’s a long one);  juggling work and trying to stay on top of all his paperwork has been a struggle.

IMG_2611Home Suction being sorted (finally) has made a massive difference. Receiving this equipment has been such a weight off of our shoulders. It means that when Oliver can’t manage his oral secretions or does fall ill we have been able to intervene a bit at home and stop him from aspirating. It’s not a miraculous cure and I’m under no illusion that we may have to have a hospital visit soon, but I’m trying to be more of a ‘glass half full’ person … I know, I know, we’ll see how long it lasts. 

After taking some getting used to, Oliver’s glasses are having such a positive impact on his development. Despite him not being a major fan of them and looking slightly like an alien, he is far more responsive, vocal and does seem to be taking more of an interest in things so that’s a win!

 

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His new chair finally got delivered the other week which he LOVES. If I’m honest, I think he may love it more than me and Craig. Seeing him happy and playing (smashing everything he can get his hands on) independently is priceless … even if it does involve him manoeuvring every toy he possibly can into his mouth and then lobbing it any in direction. His co-ordination isn’t the best but that’s fine – there’s no rush and I’m confident that he will learn.

My inner cynic can’t help but feel slightly annoyed that it took 20 months for him to be able to have a chair that he can use as a high chair and wonder what his development might be like if he had been able to have it sooner, but hey. 

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It is so nice that there are aspects of Oliver that we can finally see developing and progressing. Nevertheless, it is becoming more apparent that he has good and bad days with a vast contrast between the two.  His absence seizures are still prominent and there are days where he really isn’t with it,  in his own world entirely, glazed over and not really responsive.  Some days he doesn’t want contact, some days all he wants is to be held. Other times he won’t eat and gag before a spoon or bottle teat has even touched his lips, or he’s a little piggy and can’t down his bottle quick enough.

Most recently, It’s like a switch has been flicked and he’s loving life! Many months have been spent willing and persevering with him to take an interest in things, at times unsure if our efforts made were in vain. He seems to have developed so rapidly recently, almost overnight. We can’t quite believe the positive change we’re seeing in him and it’s the most cherished, overwhelming, rewarding feeling. We are seeing him deliberately happy, enjoying his food, making different noises.  He’s been extremely hit and miss with his solids and swallowing but recently has been tolerating different textures and food. This progression has given us hope that a feeding tube may not be an inevitable future prospect.

We’re starting to feel hopeful for the first time in a long time.  I’m unsure if this is embracing the half full glass or delusional, but I’m sure time will tell.

IMG_5524Craig and I have been off work this week too which has made a huge difference. Family time is the best time. Even just all of us taking the time to watch a film and be silly together. It’s the simple moments that are treasured.

We took Oliver to the zoo yesterday and the weather was great which lifted everyone’s mood. Oliver wasn’t the happiest sausage and slept the majority of the way around, intermittently stirring from his slumber to give us a death stare, but it’s making memories that counts.

Oliver had a skin & muscle biopsy back in March. After we felt confident his wound had healed and the weather brightened up a bit we took him back to his favourite place – the swimming pool.  It was the most wonderful time and it was as if he had never been away! He tolerated a whole 45 minutes kicking and splashing around, looking at the sensory lights and laying there like a King whilst we showered him with the watering can every now and then.  If I’m ever fortunate enough to win the lottery the first thing I’m buying is a Hydrotherapy pool!

I’m trying to forget about the medical side of things for the time being and just enjoy the time we’re having together. His most recent MRI results weren’t what we were hoping for (I’ll go into this another time) but we’re learning to focus on him and his abilities rather than what a scan is telling us.  We’ll hopefully get his skin & muscle biopsy results in a couple of months too and know more about everything then … hopefully.

 

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There are so many possibilities with Oliver and his conditions, in all honesty we are struggling to keep up.  So, we’re trying to be positive and remember that any outcome, positive or negative is exactly that … a possibility.  It’s not definite nor confirmed, it’s something that may or may not happen.  If you’re reading this and can relate in any way, it is taking a long time but we are slowly learning to have hope.

On the bad days it’s hard, especially when all you can recall from recent months are hospital admissions, appointments, feeding struggles and a miserable child who you can’t console or communicate with how you wish to. But just that one day, one hour even, of happiness or the slightest miniscule development in their behaviour can turn your world upside down in the best way.  Oliver is generally a happy child, ecstatic almost,. but when he’s feeling under the weather we sure do know about it and it’s important to stay positive and hopeful particularly during those times.

Hope makes anything possible. 

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Unsurprisingly, life doesn’t always go to plan. Sometimes this can work in our favour and other times it can be somewhat destructive. Life can change in an instant, it may be a curse, a blessing or both. It can be a welcome, sometimes encouraged change or a very uninvited, unexpected change.

I first started to notice my son wasn’t developing as he should be when he was about three/four months old. He wasn’t engulfed by rolls of chub, expressive or particularly interactive. I voiced my concerns countless times only to be reassured by medical professionals, friends and family that he was fine.

So, I carried on as ‘normal’, pushing the growing niggles to the back of my mind and allowing myself to indulge in everyone else’s optimism and reassurance. I queried the missed milestones but was met with an abundance of similar retorts – ‘all babies develop differently’ and anecdotes about their own offspring.

As imagined, more milestones were missed, more hospital admissions were encountered and the endless optimism and reassurance from others became less convincing. I could sense the doubt in their eyes but their words were as desperate as ever. I knew they wanted to believe as much as I did that he was just ‘a bit behind.’ IMG_2447

To cut a very long, upsetting and difficult story short my son was six months old when he was first classed as having global developmental delay and neurological abnormalities.

Initially, I completely dismissed this information, searched for alternative answers and was in denial for a long time. I so desperately needed my instincts to be proven wrong. However, as time progressed the inevitable dawned on me and I had no choice but to begin to accept, well, the inevitable.

Acceptance is imperative. Because once you begin accept things aren’t how you imagined, you can start to move forward. You can start to live your life. The adjusted, altered, real version.

Nonetheless, with acceptance came anger. I was consumed by resentment and began to see the world from a very obscure, unattractive and bitter view point.

A sense of entitlement for what I had ‘lost’ overcame me and bitterness crept in throughout the most mundane of tasks. I could have easily strangled the pregnant women I saw smoking outside the labour ward without a second thought. The things I was getting myself worked up about bared no relevance nor significance to my current situation. Those pregnant women smoking weren’t affecting Oliver, and if they stopped he wouldn’t suddenly get better. Of course he wouldn’t. It wasn’t impacting him at all, but instead of letting that anger subside I let it build up into such an overpowering sense of resentment I didn’t recognise myself.  There was literally no one to blame, nobody was at fault and there was absolutely nothing I could do that would make my son better.

In order to overcome the anger and begin to accept Oliver’s prognosis, I had to begin to adjust, to forget the ideal of parenthood that we had envisaged throughout pregnancy and stop allowing this bitter parasite of hatred taint my every day. I realised that by holding on to these negative feelings I was only turning an incredibly difficult time into a far more challenging time for myself and those around me.

Adjustment is an ongoing process and in time, it becomes natural. I have become accustomed to our own journey. I have learned to forget the milestones and the ‘should haves’ and the ‘have nots’. To adapt and start living our life to best of our ability, to stop comparing it to the ideal it should have been and have the best intentions to reflect on every single positive aspect that I can daily.

No child deserves to be unwell and no family deserves to experience the grief and hostility that accompanies it.

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I think I’m still at the anger stage and probably a part of me always will be. Oliver is only 20 months old so we have a long road ahead of us. I’m bordering on the adjustment line and teetering on the edge of acceptance.

The three A’s are all part of the journey of a child who is medically complex or has special needs. Like most journeys, you can take a wrong turn, you can climb a mountain only to reach the top and see a plague of mountains, far higher and far bumpier. Some journeys don’t have an ending, sometimes it is a long road that never turns. Sometimes it’s a short road with lots of turns or barely even a road at all.

My son has taught me so much about myself, the world, and life.  I know what unconditional love is and I know that it will see us through anything.  Some days are harder than others and some days are a little less hard, but one look at him and I know in that instant why I keep going.

I can only ever hope to have a soul as perfectly pure as his one day.

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 …

 

 

 

 

For me, Christmas is a time for family, friends and gratitude. Family isn’t determined by blood and I could not be more grateful for the amazing people that surround us, who are there for us and support us daily.

Last Christmas was spent in hospital with a very, very poorly boy.  Naturally, it’s been a prominent memory in my mind the past couple of weeks and I keep replaying it wondering each time whether there was something we could have done differently or should have picked up on sooner.

Upon reflection, it was a pivotal point in our parenthood journey.  It acted as a catalyst for the current year we have had and everything it has brought along with it. That admission was the first time Oliver’s development was questioned and I prayed so hard that whatever was going on with him wouldn’t be neurological. Heart, lungs, limbs – anything but his brain. Yet here we are.

In retrospect, we went in with a very sick child and came home with a very sick child. His seizures had stopped and he was stable to a degree; but he wasn’t the Oliver we knew or had anticipated throughout pregnancy.  It was the first time his needs became real and were much more than just a hunch or intuition.

So, we’re slowly adapting to life with Oliver not developing how we had imagined. Our calendar is full with appointments and our house cluttered with his aids. Regularly I envisage myself throwing them out the window, or better yet, him throwing him out the window – but hey, they’re a necessity so we’ll manage.

He was admitted to hospital last month and was really, really poorly. It was the worst we have ever seen him (which says a lot) and surfaced a whole new world of uncertainty, frustration and more questions that have been left unanswered.  We’ve pushed it to one side for now and will tackle everything in the New Year.

Oliver is loving pre-school. He only goes for an hour and a half a week with his Dad but he’s a very popular lad (that’s my boy). He often takes a pew on the bean bag acting like a King when he’s not thrashing about in the swimming pool. He’s also got himself a new wheelchair/pram which is the most amazing piece of equipment we have had yet. He is supported extremely well in it and can sit up at a table with us which is lovely. For me, it’s nifty and not at all as bulky or unmanageable as I thought it would be.

We took him to see Father Christmas last week. I could lie and say he absolutely loved it and was bursting with excitement, but he doesn’t have a clue what planet he’s on 90% of the time and this was no exception. He did, however, adore the Christmas light display and would have been quite happily hypnotised by it all evening.

It was a wonderful family experience and something we definitely didn’t take for granted given our circumstance. Nevertheless, it was also extremely bittersweet. I don’t know if it’s just us or if other parents who have children with special needs have that voice in the back of their head that just can’t be silenced.

‘It was lovely …. but he really should’ve been walking and talking.’  ‘It was great … but he really should’ve been excited’

‘That was fantastic … but …’

There’s always a ‘but’ and I hate myself for it. I am so conscious of treasuring every moment we spend together. This time last year I would have given absolutely anything to be at home with him, experiencing Christmas how it should be, so I really need that ‘but’ voice to pipe down.

Unsurprisingly, we’re taking a different path in life and that’s fine. I am also realising that it’s fine for us to take some time getting used to it. Inevitably, I do feel guilty when that ‘but’ voice creeps in but I suppose it’s natural and I’m sure there will be plenty more first experiences that we envisaged playing out extremely differently. Some we will be prepared for and others may catch us off guard, but we will adapt and remember to be thankful for every opportunity that comes our way.

This time last year I was whole heartedly petrified of the unknown and the threat that there ‘might have’ been a problem with Oliver’s brain. I couldn’t even contemplate it at the time and chose to ignore what was right in front of me. This Christmas isn’t what I thought it would be, but it was the best Christmas we have ever had. Our day was spent with our nearest and dearest, love, laughter and most importantly, our handsome, happy, quirky little boy.