I realise that it has been a while since I have written anything, despite having so much to say.

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Feeling the sand and sea between his toes for the first time

As Oliver is getting older,  we have reached the point where his struggles can no longer be put down to anything other than what they are. His physical and mental disabilities are profound, complex and undeniable.

As it stands, we have been told that although Oliver’s mitochondrial sequencing has returned with no abnormalities, doctors still believe Oliver has a form of mitochondrial disease, something within the spectrum of Leigh disease; ‘so rare that it has not yet been discovered by medical science’.

It sounds dramatic, shocking, maybe even absurd. After all, we are in 2019. With all of the luxuries, advanced technologies and science nowadays, surely it’s unfathomable that  that there is a chance the medical mysteries of the world are to remain a mystery?

We have already undergone numerous extensive tests since Oliver was born. Each one feels like a longer wait than the last for answers, or as we are now aware, a lack thereof.

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Just me and my ducks

It’s difficult to put into words how deflating and draining the waiting can be. I flit between convincing myself that this time will be the time, to think positive thoughts, to have hope and breed optimism. Only for the pessimist realist in me to remind myself that the likelihood is that it won’t be the time, we won’t reach the cusp of of an earth shattering discovery. We won’t get to expose the identity of what has stolen Oliver’s future; that the time may never come.

I had hoped, maybe naively so, that the 100,000 genome project results could point us in the direction of determining a diagnosis.  However, after 18 months of waiting we received a letter informing us that, again, there were no abnormal findings.

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Are you suuuuuure I’m not an alien, mum?

I am truly stumped and beyond frustrated.  The only logical explanation is that we created an alien, surely?

18 more months trapped in a stale merry-go-round of anxiousness, bitten finger nails, wasted wishes and pointless anticipation. 18 more months of relentlessly telling myself on bad days just to hold out for these results. 18 more months of entertaining countless queries and conversations surrounding the topic of what is ‘wrong’ with Oliver, for us to always express the same woeful uncertainty. Not forgetting to throw in a quick dose of wit and pathetic attempt at humour to mask the pain of how hopeless and lost we really feel.

I wholeheartedly believed that given Oliver’s medical history and everything he has been through, these results were going to give us something; anything.

And yet here we are, still not knowing. Still none the wiser. Still completely and utterly clueless, left dangling over a bottomless pit of despair once again. Sadly, there are so many families in the same position as us; some waiting years before they get results, regardless of the outcome.

A diagnosis can’t change Oliver and certainly won’t define him or his capabilities. It is just a label and essentially it doesn’t mean anything.

Except it does mean something; in fact, given the severity of what we have been told to expect out of life for Oliver, it means everything.  A diagnosis equals certainty, fact and knowledge. It could determine so, so much and prepare us properly for what Oliver’s future holds.

When I take a minute to ponder over everything we’ve been through already with Oliver and how bleak the prognosis for mitochondrial disease can be, the rationale that a diagnosis is just a label is soon outweighed.

For want of a better explanation …

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If Oliver was entirely normal, (mentally and physically) and had maybe a dodgy ear, eye, or a mild deformity which we were told by doctors they couldn’t diagnose and didn’t know what it was, but that he would be able to live a happy, healthy and full life, I wouldn’t mind.

Yes, it might not be ideal, cause minor inconveniences and potentially hinder certain things throughout his life but the outcome, the diagnosis or ‘label’ for whatever it was would not bear a hold over us. It may be something we were curious about, but not the be all and end all.

It wouldn’t control us, our lives, our aspirations, our decisions; important decisions. It would bear no relevance as to whether we chose to have more children, opt for a holiday abroad or move to a different part of the country.

It wouldn’t really matter.


966CB617-CE6B-4124-AA76-A605A5DBADE1Oliver turned three in June. The transformation from baby to toddler to little boy is now so unavoidably obvious.

It feels as though the transition from parent to carer is becoming ever more present by the day.

I still wash bottles for milk, change nappies, sterilise dummies and syringes, blend food until it’s pureed. Teeth brushing has evolved into a not so balanced act of prying his mouth open with one hand and brushing whilst suctioning with the other. I can’t go anywhere without a changing bag and I still look at toys aimed at babies from 0 – 6 months; a year at a push

All of the things that a mother does for her baby I still do (and then some).

It can be monotonous and tiresome; it would be dishonest of me to pretend otherwise.

The disabled facilities grant is in the early stages and we have now confirmed initial plans for a downstairs extension for Oliver.

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Realistically it is going to make the world of difference to our lives and is an extremely positive thing.

I know how unbelievably lucky we are to even have this as an option but as the reality of the process sinks in, so does a stark and uncomfortable realisation. That never in my wildest dreams did I ever imagine we would be in this position just three years into parenthood.

It is entirely and incredibly bittersweet.

Regardless of the above, I do feel like these past couple of months have been different.  The grief for the life Oliver should have had hasn’t been as prominent.  Maybe we’re coming to terms with his prognosis, or maybe we’re just getting really good at burying our sadness. Either way, it’s refreshing.CC2721F9-BE35-4AEB-ABF6-5AA822B96D44

 

In spite of two acute admissions (one coinciding with his Gastrostomy meaning that it is currently postponed) we have had a really positive time with Oliver since my last post.

Oliver started horse riding with Riding for the Disabled in April. It is undoubtedly the cutest thing I have ever seen in my entire life.  He can only manage a couple of half laps and he actually fell asleep within two minutes of being on Peter Pony last time but it’s so worth it.

He is getting SO much stronger and more determined. Although not understanding the context behind it, he is beginning to make noises with intent too which is promising.  I truly treasure how far he has come, he really is the most admirable and amazing little soul.

Lastly, in other news, Oliver’s dad and I finally got married!

To put it plainly, we had the best day surrounded by the best people.  I was never fussed about a big wedding and our priority was Oliver so we had the reception at home. It was the best decision we’ve ever made.

Everything just seemed to be right where it was supposed to be. It was an intimate day, full of love and clouded with happiness. It was a day about gratitude, counting blessings and making memories. It was a day about the moments, the butterflies, the laughter and cherishing the joy that was overflowing from everything and everyone.  There was something truly special in the air and I get to keep a little piece of it with me forever.

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The fact that it’s March and I’m only just getting around to writing a blog post says it all really.

I’m not sure why but it’s like 2019 hit and everything started moving at 100mph.  I can’t count the amount of appointments we’ve had already and if I’m being honest, it feels pretty constant and relentless at the moment.

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We had an appointment before Christmas with a Mitochondrial Doctor who spoke to us thoroughly about the disease and the likelihood that Oliver’s diagnosis lies within the spectrum of this. Oliver’s skin and muscle biopsy results point towards this theory also and his medical history sort of matches up with the symptoms of the disease

I would say that this was the most difficult but productive appointment we have had throughout our journey so far.  However, if I’m being honest I would also say that it came a year too late.

It’s been a year since we were recruited to the 100,000 genome project too so we were hoping for answers, however we have since received a letter informing us that this isn’t likely until July now which is deflating.

Following a consultant appointment at the beginning of January Oliver has been referred for a Gastrostomy.

 

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He is still very underweight and his weight has remained stagnant since summer.  We knew it was inevitable but it doesn’t make it any easier.

We had his pre-op this week and discovered that the consultant would be doing a Button Gastrostomy with a Gastropexy. There were many reasons for this that I don’t think I can recall now, but we’re at the stage with Oliver that if it’s safe and going to help him then it just needs to happen.  The consultant did also find something wrong with his testes when examining him so this will be able to be fixed during the same operation.

I’m sure it will do the world of good for him in terms of his development and strength, but I am worried about how he will cope with the procedure and recovery afterwards.  It will be a massive adjustment for us all but I really hope it will pay off for Oliver.

Oliver also had an MRI at the beginning of February so hopefully we will receive that report shortly and hopefully it may point towards a diagnosis. It took him almost two weeks to return to his ‘usual’ self after the anaesthetic which doesn’t fill me with hope for his gastrostomy.

 

IMG_6157We were lucky enough to have a walker for a trial last month too, however sadly it didn’t work for Oliver.  I don’t know why but I had it in my head that he might just have taken a couple of steps.  Sadly, this didn’t happen. He was just too weak and did the motion for a couple of seconds but he wasn’t supporting himself correctly so it was a no-go.

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We have also bitten the bullet and begun the Disabled Facilities Grant process which will enable us to have downstairs living for Oliver. To be honest, I’m starting to feel the strain of lifting him everywhere. It’s nothing major but he is growing and does like to fling himself about at the most inconvenient times so it’s more for safety than anything.  I think this will be a long process but it’s for the best.

All in all, I would say things are pretty overwhelming at the moment.  I’m ‘wobbly’ most days which is very unlike me.  I’m realising that the future we’ve been putting off thinking about or acknowledging has come around far quicker than anticipated. I’m struggling to shut my emotions off and am beginning to feel really drained.

If I’m brutally honest I didn’t want this life and I didn’t want this life for Oliver.  I don’t want people coming out to the house weekly, I don’t want to be familiar with hospital walls and medical lingo, I don’t want appointments with several different doctors talking about the same thing and I don’t want to imagine a world where Oliver doesn’t get to be a part of it.

I wish love was enough to fix him and I wish he knew just how much I loved him.

IMG_6945But, the shitty thing is that wishes don’t come true and that this is our life, it’s our reality and there’s nothing we can do about it. All we can do is give Oliver as much love, nurture and cuddles as we can and make sure he’s as comfortable and as happy as can be.  Now the weather is warming up we’re getting him back out in his swing and it won’t be long before we can get him back in the hot tub.

We really need to cling on to the positives and cherish the little bits of goodness that we have in our lives.  As ever, our family support is simply amazing and we are so blessed.

On another note, Craig and I have recently embarked upon a new adventure. We’ve loved planning our own wedding and didn’t want the enjoyment to end. We’ve started making dried flower hoops, crowns and buttonholes for weddings.  If you want to know more we’ve added a page to this blog expanding on our new project.

 

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Where to begin. These past few months have been tough. That’s probably beyond an understatement, but sometimes I can’t find the words to describe just how challenging our ‘everyday’ can be at times.

autumn olbyOliver’s growing up, becoming a ‘big boy’; and a handsome one at that. Physically he is changing more than ever, however mentally, not so much.

Naturally, as he’s getting older the gap is only becoming wider and more prominent between ‘normal’ kids and himself; and to some extent even ‘special’ kids and himself. Which is fine (isn’t it?), it’s the expectation we’ve been lowering adjusting ourselves to for a while now.

I am trying so hard not to be negative (honestly) and look on the bright side. We are so incredibly thankful that he finally seems to be growing more resilient to infections and that he has managed almost a year without an acute admission. But, no matter how much I try to outweigh the negatives with positives, sometimes I feel that I am fighting a battle instead of preparing for a war.

If I am constantly pressuring myself to spin every negative into a positive I can never truly mourn the childhood Oliver should have had.

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There is no doubt that our lives are becoming slightly more complicated, that the mundane ‘everyday’ is becoming tiresome and more testing.

If I’m not consumed by the guilt of working full time instead of being with Oliver I’m exhausted from fighting to keep the next ‘thing’ out that’s waiting to swoop in and take its place.

I’m beginning to realise that coping with something and busying yourself with everything other than what you should be focussing on are two very different things. Sometimes I become so wrapped up in convincing everyone else that I’m ‘ok’ that I begin to fool myself.

I can pretend that my mind isn’t depleted daily by desperate fantasies of a world that Oliver can access, that my soul isn’t crushed by my sheer despair at wanting things to just magic themselves better; that I’m fine and that my heart isn’t heavy with the tears I refuse to cry.

I am truly, utterly, unconditionally hopelessly devoted to Oliver. Just as any parent should be to their child. Frankly, I don’t think there is anything more I could be doing for him, and if there was I would do it without hesitation. But sometimes, I can’t help but wonder if some of my efforts are in vain.

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Generally, Oliver loves life. He is the happiest, most innocent little soul who is unaware of just how cruel the world can be. Despite his blissful ignorance, it’s beginning to dawn on me just how little he can do for himself.  If he didn’t have us he wouldn’t have anything; and sometimes that thought becomes too unbearable to fathom.

He still can’t hold a milk bottle or feed himself, he can’t go and play with his toys independently. He can’t pester us to wake up in the morning and take him to a park. He can’t make friends, he can’t hug us, he can’t verbalise how he’s feeling. He can’t sit independently nor stand. He can’t crawl or walk. He can’t dress himself. He can’t have a tantrum. He can’t make choices. He can’t discover a passion. He can’t love us the way we yearn to be loved.

He can’t …

The list goes on and we’re under no illusion that as the months go by it may become more extensive. And yes, disregarding that list there is lots he can do but for every ‘can’ there are a hundred ‘can’ts’ and for every ‘can’t’ there are a thousand ‘mights’. It’s a ruthless, maddening, vicious cycle that we struggle to escape at times.

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Ultimately, no matter how much I do for him it will never be enough. I will always feel that he has been robbed of a life that he was destined for. A life where he has the autonomy to forge his own path. To entertain his own wants, have his own ambitions and desires and fulfil them in his own way. He deserves normality, he deserves independence and he deserves, more than anything, a childhood.

The past two years have been an explosion of fear, shock, exhaustion and uncertainty and when I take the time to reflect on our journey of parenting thus far I have no idea how we’re still here.

I suppose it’s beginning to simmer down to the fact we’re starting the transition to being noticeably ‘different’, noticeably ‘special’ and I’m not too sure how I feel about it.

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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