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

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.

When someone is grieving it implies that they have lost something.  They’re in mourning. They’re trying to adjust to their new world and desperately trying to determine if they will ever find a place in it again.

Despite not physically losing anything or anyone, the grief experienced by parents whose children have special needs or are unwell is one of the same. It’s very real, it’s very present and it’s very intense.

I spent so long getting excited about what life was going to be like with my new little sproglet. Oh the adventures we were going to have and memories we were going to make. But, it didn’t go to plan and there’s absolutely nothing I could do about it.  I realised, that what I had spent months and months planning, was in fact, nothing but an attractive infatuation.

I have the tendency to shut off during difficult and painful times, to go through the motions and simply just make it to the end of one day and onto the next.  But, when I actually took a moment to stop and acknowledge the prognosis I had been given for my child, the reality of what my future life was actually going to be like came crashing down and brought me down with it.

I suddenly had the stark realisation that I was not in control of anything, at all. My world could crumble at any given moment and there was absolutely nothing I could do about it. After time, once the shock dissolved a little, I began to grieve.

I couldn’t avoid it, I couldn’t hide from it and I couldn’t escape it.  It crept up on me; it was consuming and maddening.  It was bizarre how deadened I felt by grief, when in all honesty, all I had lost was an ideal of what should have been.  I was completely numb.

People say grief gets easier over time.  It doesn’t. You just get used to it. It becomes ‘normal’, and when something is normal it isn’t shocking or alarming.  It’s mundane, it’s your ‘everyday’.  It doesn’t mean that it’s easier to cope with or that it hurts any less.  It just means that you have learnt to bury it to get through the day.  And late at night when there’s nothing but a dark room, silence and emptiness, it surfaces and consumes you once again.

Time doesn’t subside or make dealing with grief any easier.  All time does is create a distance.  A distance from the initial impact of discovering terrible news and where you are along your journey now.

Ultimately I knew, I had always known; despite trying to convince myself that Oliver was just a ‘bit behind’ for the umpteenth time.  However, there’s still a part of me that hopes.  That hopes that I’ll wake up one day to him having unexpectedly discovered the ability to do everything we’ve been told he probably won’t.  If you believe and want something enough it will happen, won’t it?  That’s how it works, right?

Hope is a dangerous medicine.  In small doses hope is good; in fact it’s great.  It brings optimism to the darkest of hours and makes the world seem a little less desolate.  Hope is infectious and it doesn’t take long before it affects those around you.  Before you know it, you’re hopeful, those around you are hopeful and you’ve overdosed. That energy and those hopes keep building upon one another to inevitably create a complete delusion of what your future life could be like.  Hope helps us to regain the control that grief so swiftly stole from us, but it’s easy to let it control you.

Hope and grief are as dangerous as each other.  An equal balance of the two is imperative. Too much of one and you can deteriorate into despair and depression.  Too much of the other and you’re living in a fantasy.

Nevertheless, grief always prevails. My false hopes come plummeting down each time as quickly and as violently as the realistion of having an unwell baby hit me the first time.

Realistically all I have lost, all that I am grieving, is an ideal.  As hard as it is to come to terms with, the adventures and ‘soon to be’ memories were all in my head.

I can’t fight it and I can’t change it. So, I’ve learned to embrace it.

To embrace every moment of it. I’m taking the good with the bad. Because if I don’t, the alternative is far bleaker. We’re going to have a wonderful life and we’re going to make new memories and have different adventures. They may involve a wheelchair, they may involve an incontinent 10 year old, they may involve a non-verbal child.

They may not.

They may involve a walking aid or stick, they may involve a perfectly toilet trained 10 year old or an extremely verbal child who we can’t get a word in edgeways over.

The bottom line is that we don’t know. We can’t control anything.  Nothing in this world is guaranteed.  So whilst we can grieve, it’s important not to give up hope, but to also remember to keep our hopes in line with reality.

My son is a carefully constructed composition of chaos and I’m slowly learning that I wouldn’t have him any other way.

Anything is possible.