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.

***
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!

***

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 …

 

 

 

 

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

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.