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.

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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!

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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 …

 

 

 

 

For me, Christmas is a time for family, friends and gratitude. Family isn’t determined by blood and I could not be more grateful for the amazing people that surround us, who are there for us and support us daily.

Last Christmas was spent in hospital with a very, very poorly boy.  Naturally, it’s been a prominent memory in my mind the past couple of weeks and I keep replaying it wondering each time whether there was something we could have done differently or should have picked up on sooner.

Upon reflection, it was a pivotal point in our parenthood journey.  It acted as a catalyst for the current year we have had and everything it has brought along with it. That admission was the first time Oliver’s development was questioned and I prayed so hard that whatever was going on with him wouldn’t be neurological. Heart, lungs, limbs – anything but his brain. Yet here we are.

In retrospect, we went in with a very sick child and came home with a very sick child. His seizures had stopped and he was stable to a degree; but he wasn’t the Oliver we knew or had anticipated throughout pregnancy.  It was the first time his needs became real and were much more than just a hunch or intuition.

So, we’re slowly adapting to life with Oliver not developing how we had imagined. Our calendar is full with appointments and our house cluttered with his aids. Regularly I envisage myself throwing them out the window, or better yet, him throwing him out the window – but hey, they’re a necessity so we’ll manage.

He was admitted to hospital last month and was really, really poorly. It was the worst we have ever seen him (which says a lot) and surfaced a whole new world of uncertainty, frustration and more questions that have been left unanswered.  We’ve pushed it to one side for now and will tackle everything in the New Year.

Oliver is loving pre-school. He only goes for an hour and a half a week with his Dad but he’s a very popular lad (that’s my boy). He often takes a pew on the bean bag acting like a King when he’s not thrashing about in the swimming pool. He’s also got himself a new wheelchair/pram which is the most amazing piece of equipment we have had yet. He is supported extremely well in it and can sit up at a table with us which is lovely. For me, it’s nifty and not at all as bulky or unmanageable as I thought it would be.

We took him to see Father Christmas last week. I could lie and say he absolutely loved it and was bursting with excitement, but he doesn’t have a clue what planet he’s on 90% of the time and this was no exception. He did, however, adore the Christmas light display and would have been quite happily hypnotised by it all evening.

It was a wonderful family experience and something we definitely didn’t take for granted given our circumstance. Nevertheless, it was also extremely bittersweet. I don’t know if it’s just us or if other parents who have children with special needs have that voice in the back of their head that just can’t be silenced.

‘It was lovely …. but he really should’ve been walking and talking.’  ‘It was great … but he really should’ve been excited’

‘That was fantastic … but …’

There’s always a ‘but’ and I hate myself for it. I am so conscious of treasuring every moment we spend together. This time last year I would have given absolutely anything to be at home with him, experiencing Christmas how it should be, so I really need that ‘but’ voice to pipe down.

Unsurprisingly, we’re taking a different path in life and that’s fine. I am also realising that it’s fine for us to take some time getting used to it. Inevitably, I do feel guilty when that ‘but’ voice creeps in but I suppose it’s natural and I’m sure there will be plenty more first experiences that we envisaged playing out extremely differently. Some we will be prepared for and others may catch us off guard, but we will adapt and remember to be thankful for every opportunity that comes our way.

This time last year I was whole heartedly petrified of the unknown and the threat that there ‘might have’ been a problem with Oliver’s brain. I couldn’t even contemplate it at the time and chose to ignore what was right in front of me. This Christmas isn’t what I thought it would be, but it was the best Christmas we have ever had. Our day was spent with our nearest and dearest, love, laughter and most importantly, our handsome, happy, quirky little boy.

Regardless of whether you strictly abide by ‘Breast is Best’ or formula feed your little one, it’s essential that feeding is a special time, one of peace and tranquillity.  It is one of the most natural things in the world and such a primal, instinctive action that allows you to bond with your baby like nothing else can.

Sadly, like many other families, I never had that experience.

I had made the decision throughout my pregnancy that I would breastfeed for a short while but inevitably move onto formula.  I was quite pragmatic and frank about the decision. There was no specific time frame, no underlying reason; it was purely personal preference.  As long as my baby was eating, gaining weight and healthy, I didn’t care how he got there.

In hindsight, I think this decision was partially contributed to by fear of my own incompetence to be able to breastfeed successfully.  By opting to formula feed of my own accord I eradicated any chance of failure.

Anyway, if you’ve read my previous blog posts you’ll probably have correctly predicted that things didn’t go to plan.  Oliver did not latch on, I persevered with several different nurses pulling my tittybumps in opposing directions until I
was at my wits end; by the end of his first afternoon on planet earth he was on formula.

No big deal, I had wanted to formula feed eventually anyway so it was just happening sooner than originally anticipated.  I was slightly frustrated with myself, but all in all, as long as he was being fed, that was all that mattered.

Oliver did not like feeding, even when he was well.  I cannot even begin to express the stress, worry and exhaustion experienced.  He struggled to latch on from day one. He would soon become breathless after a couple of gulps meaning he had to stop despite still being hungry.  We would then try again half an hour later or so and he would take another tiny amount and so on and so forth. It was a vicious cycle for many months.

I would try and time feeds impeccably to the last minute hoping each time that this would be the feed that he took a worthy amount and things would change – they never did. If we offered him milk when he wasn’t hungry he wasn’t interested, but if he got to the stage where he cried because he was hungry, he would become too breathless to take
milk and tire himself out. We couldn’t win, it was impossible to second guess him.

Sometimes it wouldn’t matter how much he was enjoying his bottle, he would just stop himself.  There would be
no distraction, no interruption; it was like something switched inside his brain and he just would.not.eat.

I was (still am) envious of parents whose babies looked like Michelin men and would jest about what greedy guts their offspring were.  I would’ve have given my right arm for Oliver to down a bottle even once.


Last Christmas (2016) Oliver was critically poorly and was admitted to hospital for two weeks.  He required an NG tube as he had lost his ability to latch onto a bottle altogether. He had needed a tube when he had been unwell in the past, but this time was different – we were going home with it.

Oliver was discharged shortly after New Year 2017 and was tube fed for over a month at home.  This was undoubtedly the most distressing, testing and exhausting time I’ve ever experienced. NG tube feeding in itself is actually really simple to do, and once you get into the habit of it becomes normal. But it does make every feed a lengthy process and requires a lot of care and attention.

Much to my initial horror, he must have vomited up his tube at least a couple of times a day for the first two weeks.  This soon became the norm and more of an inconvenience than anything, but the first time it happened I shit myself. We had to pull it out through his nose and I was in pure panic mode.

I stopped at my parents’ as Oliver’s Dad works nights and I wasn’t confident enough to be on my own with him.  Having my mum there with me, persevering and supporting me through everything was priceless; I would not have gotten through it without her.  Her resilience and determination never waivered and kept me going through some dark days.  She was and always will be my rock.

The community nurses were amazing too, coming out to the house at least a couple of times a day to put the tube back in. He had so much mucus in his system which I think caused the vomit, but it was literally just a case of waiting for him to clear it.  Being in hospital would have made no difference to his care so we battled on at home.

Eventually, Oliver did regain enough strength to bottle feed again and the relief and joy is a feeling I will cherish forever.  Out of all the struggles we’ve had with Oliver, feeding has been a prominent, ongoing issue and one that has seriously pushed me to breaking point. I am so happy to be able to say that we’re almost out on the other side. He takes his milk with no problems now (touch wood) and we are slowly trying to wean him onto solids. Oliver has recently had a swallow assessment too that went well so we have the green light to slowly build in texture to his solids.   We have been told to keep an open mind about a gastrostomy but I’m praying that that won’t have to
happen, and if it does, we’ll face it when the time comes.

Any parent that has ever tube fed, peg fed or struggled with feeding (reflux, colic etc) their child I have the utmost respect for you.  There are so many aspects that attribute to making something that should be such a simple, joyful time into a difficult, stressful time, but we have no choice but to keep on going.  After all, our babas need their grub!

To say I’ve been quiet recently would be an understatement.  Being back at work has been a shock to the system; the adjustment and struggle to juggle everything is real.  The mornings are getting darker, colder and I’m snoozing my alarm way more than I should be.

Oliver has been a busy boy.  He’s had a standing frame delivered which surfaced a mixture of emotions.  Initially I was dreading it, pre-empting him resisting it and months of painful tantrums and tears.  In fact, I was pleasantly surprised. He absolutely loves it!  Although it didn’t stop an uncontrollable sobbing session, but there were tears of joy amidst the breakdown.  It’s highlighted how much he wants to be in control of his body, independent and doing things for himself.  It really has given me hope and potentially a new outlook that he could possibly do things freely for himself.  The strength is there he just needs to learn how to use it and it’s our job to teach him.

We have also attended Oliver’s first time at a playgroup for children with medical needs/learning difficulties.  There’s only a couple of children and albeit daunting it was a wonderful experience and definitely beneficial to Oliver.

In all honesty, I wasn’t really sure how I felt about going.  I am the furthest thing from a social butterfly (more of an awkward sloth) and if there’s a chance for me to not interact I will pounce on it.  But, this was for Oliver so of course there was no question as to whether I would go or not. Oliver’s dad was naturally amazing and befriended everyone there anyway.

There was a huge sense of relief. Those nerves I had had when taking him to other mother and baby groups weren’t there.  Possibly because we were going as a family this time, or possibly because I knew this type of group eradicated any possibility of looking at every other child and feeling an insurmountable wave of jealousy whilst wondering why
Oliver isn’t doing what they are doing.  Everyone was in the same boat; it was extremely liberating not to have to beat around the bush for once or sugar-coat Oliver’s conditions.

Don’t get me wrong, I did feel a sense of sadness after it had all sunk in.  I suppose it was another activity that made me realise that Oliver’s difficulties are very real and very present, that they will be long term. That this is our reality now and we need to embrace it.

However, despite having felt incredibly lost over the past couple of months, it did certainly reassure us that we weren’t alone.  Sure, we’ve had inundated support from family and friends, but to meet other families enduring similar struggles who we could be totally honest with was amazing.  Comparing medical notes and learning about other children’s needs without a second thought was priceless.

 

There’s a hydrotherapy pool there which is definitely Oliver’s niche. We took him swimming for the first time in a heated pool when we went away over the summer and he thrived so much in the water.  I had wanted to take him swimming from when he was very little but he had been too weak and poorly.  It was such a special family memory to
make given the obstacles we have faced, and the fact he loved it so much made it even more precious.  When we returned home we tried taking him to a normal pool but he couldn’t regulate his temperature so that didn’t work out.

Having this accessible facility there at our disposal is such a privilege and we are so, so grateful.  He’s been twice now and combined with the standing frame we are already noticing  an improvement in his abilities.

He’s also been three months hospital free (aside from routine appointments) which has made the world of difference to our daily lives.  Dare I say that I am starting to relax a little and not always anticipate the worst?  Possibly not yet, but things are looking up, and I’m trying my best to go with it and not dwell on the what ifs.

It’s hard work, really hard work, but we’re coping and managing as best as we can.  The support of family and friends is second to none and we couldn’t be without them. Oliver is so happy at the moment despite trying to gnaw on anything and everything he can get his gnashers on.  He’s growing up so fast and looking more like a little boy each day.

God, I love him.

 

 

 

 

Recently, I have been reminiscing about how my life has changed since becoming a mother. Upon reflection, I look
like a zombie most days and fashion the ‘bedraggled’ look far too often. I have approximately zero time to myself. The time I do have to myself is spent slumped on the sofa procrastinating when I should be doing other things. I have probably had about ten nights in the past year where Oliver has slept through, even then I wake up to check he’s okay. I may as well be nocturnal.  I’ve gained four stone through comfort eating alone, my maternity wear fits better now than it did when I was nine months pregnant. I am a mammoth. Oh the shame.

Although, most importantly, I have found myself bewildered with the amount that I have learned from Oliver. How can such a tiny human bring so much knowledge into the world without any intention nor care for it?  It’s
only been just over a year and I have learned more from him than he will ever know.

It is truly astounding the impact a little one has on not only ourselves, but those around us and our daily lives.  He has taught me so much that I didn’t even know there was to be learned.

He has shown me happiness, true unequivocal happiness.  He has inspired me with his courage, strength and determination.  He is fearless. I am forever in awe of him.

He has taught me to look for the slightest positive of a terrible situation and to cling to it. To remember that no matter how bad things get, they could always be worse. He has taught me to keep going, when I want nothing
more than to so desperately give up.

Above all, he has taught me to be thankful; regardless of circumstance.

Having a child with special needs means I definitely appreciate the little things. So many simple routines or actions escalated into major tasks for Oliver.

For example, it took Oliver until he was 11 months old to be able to firstly hold a small teether without dropping it, secondly make the link to put it to his mouth and thirdly, to actually use it and not lose his grip.

‘Using a teether’ is such a simple action and generally one of impulse, yet for Oliver it was broken down into different steps and mastering each step was a milestone within itself.

When your child has special needs you analyse absolutely everything.

Everything.

My mind never stops worrying or wondering whether Oliver will ever be able acquire certain abilities.  The ‘will he, won’t he?’ questions are an endless cycle of exhausting thoughts. If he will, when will he? How will he? Can I be doing more? Should I be doing more? What if he doesn’t? What do I do?

I have never felt a more intense sense of relief than when Oliver began to show an interest in toys and actually attempt to interact with them.  It could well have been a day that never came (for some families the sad reality is that it may not), but I am beyond thankful, grateful and blessed that it did.

So, when my mind decides to worry about all of the things that I have no control over, I try to remember all of the wonderful things that I am thankful for and not to dwell on the ‘what ifs and maybes’.

I have an amazing family, a roof over my head, a loving, supportive fiancé to come home to.  I have clean water to drink, clothes to wear and I don’t ever have to worry about where my next meal is coming from. I can see, I can hear,
I can taste and I can smell. I can walk, I can run (well, attempt to) and I can communicate.  I am fortunate to have people to call on when needed and for them to be there.

These are all abilities and things that I often take for granted, yet they are crucial to my wellbeing and happiness. Not to mention Oliver being entirely dependent upon them.

Quite often it’s the ‘little things’ or small gestures from others that put a smile on our face. Somebody asking how your day was, somebody holding a door open for you or making you a drink.  They can appear insignificant at the time, potentially not even acknowledged some days. They rarely enter our considerations as our minds are forever whirring elsewhere or we are too preoccupied with other tasks.

Since becoming a mother, I have become far more aware of the world around me.  Far more aware of all the things that I can do and that others do for me which I sometimes don’t give a second thought for.

If this past year has taught me anything, it is not to take anything for granted. Whether it be health, happiness, the big or the simple, little things. To reflect and to be thankful regardless of what mood I may be in or day I may have had.

Every smile, every frown, every laugh, every tear, every sound, every sleepless night, every feeding battle, every lingering touch is to be treasured.