Friday, 18 August 2017

Grief, Hope and Reality

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.




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Thursday, 10 August 2017

The story so far ...

In June 2016 I gave birth to the most precious, beautiful, delicate, scrummy baby boy.  Oliver.

He was breech and was born via emergency C-section.  I didn't actually realise that I was in labour, it all happened so quickly and the shock didn't wear off for a good while.

I have so many memories that I won't bore you with, but I think the most poignant would probably be the third or fourth night we had all been at home with Oliver.  I was watching him in his Moses basket; he was settled and sleeping soundly.  I was suddenly overwhelmed with the most overpowering sense of maternal instinct; it was almost animalistic.  The love that I felt for Oliver that night was a surge of intensity, passion and fear.  I was so scared, so anxious, so afraid that something was going to happen to him.  He was so tiny, so vulnerable and precious, all I wanted to do was barricade him in the Moses basket and protect him forever. It was very, very strange.  I burst into tears and had to hold him - somehow he stayed asleep. Maybe he knew I needed that comfort.  I will never, ever forget that feeling.

I might have felt that way that night for a reason given what the future has ended up like, or maybe it's a feeling all new mums have. All I know is that nothing can prepare you for having a baby.  Nothing.

I was extremely vulnerable and low myself for the weeks that followed.  I became a lot more aware and conscious of my own mortality and those around me.  What would happen to Oliver if something happened to me?  What would I do if something happened to my parents or Oliver's dad?  I literally did not move from Oliver's side unless I needed the toilet.  I watched over him even when he was asleep and tried my hardest not to drift off. If I did not have such understanding, loving and supportive family members I would not have gotten through it.

Being a first time mum is the hardest thing in the world, but being a new mum to a poorly baby is a world of uncertainty and undoubtedly draining.  It pushes you to your limits and then beyond.  All any mum wants to do is protect and take care of their baby; when they're unwell you can't do that for them and it's difficult.

At one month old Oliver became very poorly and was admitted to hospital for a week.  Little did I know that this would become a regular occurrence and the months to follow would be 100 times as testing as that first admission.  I was turned away from the Doctors twice before I was taken seriously, which as a first time mum made me feel silly and I tried to convince myself that I was overreacting and that the doctors were right.  Why wouldn't they be?  Of course there was nothing wrong with him, I was just being overprotective and hormonal.  It was only by chance that our Health Visitor came round the day after, took one look at Oliver and sent him straight back to the Doctors and he was referred to the hospital from there.

Over time I have learned to trust my gut instinct with Oliver and to be confident with my own judgement as he has been unwell so frequently.  To begin with, I was in denial.  Oliver wasn't a poorly baby, he just hadn't had the greatest start in life.  I clung onto doctors every word, was extremely thorough with all medical appointments (still am) and very understanding when they didn't necessarily have a diagnosis or an answer for what was causing Oliver to be sick.

Oh how naive I was.

It's taken me a long time to trust my gut, to go with my 'mother's intuition' over every other reasoning voice inside my head. I'm ashamed to say there have been countless times where Oliver has been seriously unwell and I've hesitated.  What if I'm making something a bigger deal than it is?  What if he'll be fine within the next hour? Don't hassle anyone, he'll be okay.  All babies get poorly at some point, right?

Wrong.

Doctors try their very best, I cannot fault any care that Oliver has ever been given.  They're amazing and I do not know how they do it; seriously.  I am so very grateful to every professional that has ever encountered Oliver.  However, what I have learned is that they don't know everything and can often treat Oliver's symptoms but don't necessarily know what they're treating him for.  They're just trying to get him better and stable again.  Which, in all honesty, is all I can ask for.

I'm an extremely anxious person who over thinks everything (seriously, everything - ironic that I would start a blog, ay?).  I can honestly say that all of Oliver's experiences, no matter how painful and difficult they have been, have helped shape who I am today.  I have a backbone, confidence and a voice that I now use because of Oliver.  I have realised that there is nothing wrong with asking questions, or in certain instances to disagree with medical advice or ask for an alternative.

I would say it took until Oliver was six months old and seriously ill (I'll elaborate on this another time) and in hospital (again) for me to get the courage to fight.  To voice every little niggle or concern, to query absolutely everything.  To ask for second opinions and to chase results making damn sure my baby was being looked after as he should be.

It really is true that you know your baby better than anyone; I wish for Oliver's sake I had realised this far sooner.  Always go with your gut instinct over anything and do not, by any means, let that 'what if?' voice inside your head deter you.

Your baby doesn't have a voice - it's vital that yours is heard.


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Friday, 4 August 2017

You're everything I never imagined and more

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
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Tuesday, 1 August 2017

Intro

You have spent nine whole months nurturing a new life growing inside of you.  You've bought countless items of clothing, nursery decor and toys.  You've read all the books, you know all of the different options out there and the benefits of diverse parenting styles. You're prepared and you're ready.  You're so excited and impatient for your perfectly precious bundle of joy to arrive. The future can't come soon enough and it's bound to be filled with happiness; of course it is.

We've all seen endless articles, blogs, and documentaries about the difficulties of parenting.  Some are extremely serious, others have a slightly more humorous take.  The sleepless nights, the pushing your relationship to breaking point, the endless cycle of nappies and feeds - but then it gets better, it always gets better - doesn't it?

Your child may roll over or smile for the first time, they may sleep through the night or say their first word, and then all of that strain disappears, floats away and becomes a distant memory.  They flourish into a beautiful tiny human, who may be clingy or independent, you may not get a minute to go to the toilet by yourself because they're so intrigued as to what you could be up to.  Ultimately, you live happily ever after as you watch them grow into a beautiful young child with their own cheeky personality.

But - what about many families who don't have that luxury? Families whose babies are poorly (seriously poorly), or families that wait and wait for that oh so eagerly anticipated milestone that never happens. Families who spend more time at the hospital than their own home as their child is admitted so frequently.  Families who long for that cheeky personality to come out and not having a minute to go to the toilet themselves.

We all see breastfeeding being advocated everywhere; formula feeding almost seems like a swear word nowadays. But, what about babies who don't have the ability or strength to feed themselves?  Babies who require a tube, a peg or special milk as they aren't gaining weight as they should be.

There are babies who are sight or hearing impaired, who cannot support themselves and eventually require aids, babies who are mentally impaired and cannot communicate as they wish to.  Sadly, the list goes on.

Maybe these things merely aren't considered when you have a healthy baby and I suppose for many reasons they wouldn't be.  However, having had the most difficult year of my life to date (albeit the best as I welcomed my beautiful baby boy into the world) I've found that there isn't a lot of support, articles or advice on how to cope when life isn't necessarily as you thought it would be.

The only way I can describe having an unhealthy baby is soul destroying, heartbreaking and eye opening.  When I say unhealthy I mean constantly unwell. There is a problem, or sometimes multiple problems or conditions that they may never be able to overcome.  You have to adjust as you don't have any time not to adjust; after all your baby needs a parent.  However, the overwhelming exhaustion and worry can soon catch up.  It's a devastating grief that consumes you when you finally take everything in, even though you have to keep going - you have to.

Nobody wants to think about these eventualities of ill health or life not being as they imagined.  It's upsetting and it's scary; it's the unknown.  But maybe, we all need to normalise it a bit, as it happens far more often than we are exposed to and led to believe.  Good health is so delicate and fragile, yet we seem to take it for granted until something happens that makes us realise just how lucky and blessed we are.

I'm sure my baby (well child now) isn't by far the worst off in the world, but he's certainly not the best.  I realise this is all a bit doom and gloom and sadly it's not the nicest topic in the world, but it's one I feel I can discuss openly and honestly.
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