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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2.08.2019

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.