Until Sam arrived I had naively thought that you put your child into bed and (ignoring the expected wake ups, visits to mum and dad’s bed etc), that was that.

As someone who needed splints due to bilateral hip dysplasia as a baby, I knew about splints etc and something of the trials parents face with getting their children comfortable with said attachments.

However, once Sam was given the all clear on that front as an infant we thought no more about it.

Until, that was, a sleep system was mentioned.

This is basically a series of wedges and cushions designed to position a child in a particular position and to keep them there… sleep system mark 1 lasted all of 1 night before being returned to physio… he didn’t take to it then?

Eem, no. No he did not. He flipped himself out of his cot bed INTO OURS.

Epic. Fail.

It wasn’t until 2019 that the subject of a sleep system returned to our minds.

Sam’s scoliosis was progressing, and chats with other SN friends had indicated that a sleep system, correctly fitted to the child, could help support the spine and slow the progression of the curve.

It didn’t take long to arrange, a phone call to physio and the referral was made.

A few weeks later, the dude had his brand new sleep system and we were psyching ourselves up for a few sleepless nights as he learnt to accept this restrictions to his night-time freedom of movement.

We needn’t have worried.

The sleep system is possibly my favourite piece of kit that Sam uses.

He is so ridiculously comfy in it, it supports his spine and eases pain, while keeping his head is a good position and his airway clear.

During his month long stay in critical care in 2020 we brought it into hospital, and the difference it made to him was enormous.

It just goes to show, something that doesn’t work at one time is often worth revisiting in the future; I kinda wish we’d tried it again sooner but hindsight is always 20:20 isn’t it.

This time of year always brings about reflection.

As the new year begins we think about all that happened in the last year.

However this year its all so different but I can honestly say it wasn’t our worst year ever.

There have been so many years worse than this one, which is saying something.

We have all managed to keep really well and hospital visits have been a real minimum.

This time of year always brings back memories of Ethans first Christmas.

A year where he was incredibly poorly.

We managed to keep him home by the skin of our teeth.

He was seen in hospital on Christmas eve and when they said we can do the same care for him at home as they could there, I practically ran out of the hospital!

Unfortunately it was a day of back to back seizures for Ethan and sleeping in between.

He was pale and so poorly. He was only 6 months old.

I remember when I was pregnant thinking maybe he would be sitting up around the Christmas tree or maybe on the move trying to pull the tree down.

The reality though was that none of that happened and it still hasn’t to this day.

I remember putting his Christmas outfit on and his 1st Christmas bib and having to take it off a couple of hours later because he was so poorly that he just needed to be comfy.

He ate his first Christmas dinner the next day and he barely opened presents with us, he just slept on the sofa.

The feelings of that 1st Christmas together will never go away.

The effects of that Christmas will never go away either.

The amount of seizures his poor body endured meant that small milestones that he’d reached were ripped from him.

His smile being the biggest one of those.

It was another 9 months before he looked me in the eyes and smiled again.

Those months were hard and I never knew if he was happy or not 

This year I am incredibly happy and thankful to have spent a wonderful time together even under weird, new circumstances. 

I’m sitting on the end of his bed while he plays on the floor wondering if it’s safe to leave.

It should be.

On the face of it he’s 12 years old and by now he should be developing independent, understand safety and personal responsibility and be easily able to call me if I am needed. 

But the problem is we haven’t reached any of those stages yet and we might never meet them 

Yes his body is 12, taller than me, stronger than me even at times, and with bigger feet.

Yet his cognitive ability, understanding, social awareness, and ability to process, is that of a child under 2.

His communication skills are even younger again and with no spoken words calling for me for help (not that he ever would realise I could help him) isn’t possible. 

Then there’s the risk of him having a seizure.

He might look well, not have a temperature, be smiling and appear happy; but epilepsy isn’t moved by any of those.

I could step out the room and he could suddenly shake, foam at the mouth and lose consciousness.

How would I know if I wasn’t in the room with him? 

Then there’s the risk he could swallow something. Or hurt himself. Or smash something.

He’s impulsive, seeks sensory feedback often and still mouths everything. 

There’s there’s his bodily needs: Not toilet trained and unable to clean himself it’s not unheard of for matters to be taken into his own hands…quite literally!

It’s far far better to prevent such a thing than to face the clean up afterwards, trust me. 

Then there’s the dangerous stuff; the climbing on windowsills, the throwing everything, the pulling furniture, the banging, bouncing, thumping and crashing that leads to broken pieces, hands in places they shouldn’t be and actions that could easily result in hospital visits.

Besides the risk of harm to him, the guilt of knowing it could be preventing just by being with him would be tremendous. 

So I sit watching my 12 year old trying not to get consumed with the hundreds of other things I could be doing instead.

They won’t get done if I don’t do them so it’ll be another very late night doing laundry, cleaning the kitchen and preparing meals. 

I’m grateful for the many staff who have over the years had to be with my son continuously, just like I am: The nursery staff, primary school staff and now high school staff.

But right now in lockdown they are not available so my days are consumed by always being with my son who can’t be left alone. 

When people tell me to ‘stay safe’ I often wonder if they realise the heavy burden this means for parents like me who can’t actually safely leave their child unattended at anytime. 

School closures are hard for everyone but especially so for those of us with children with physical and developmental needs who require adult supervision every moment of the day. 

This isn’t just lockdown for me. This is every evening, weekend, bank holiday and all summer holidays too. 

I may as well get comfortable. 

The hardest thing about being a caregiver is you can lose yourself while trying to be what you need to be for your child.

I am often told how strong I am by many people.

Because from the outside looking in it does seem that way.

But those close to me know that I often struggle.

Caring for my son is not always easy.

There are days I honestly do not know if I am going or coming.  

I find myself trying to find time and a quiet place where I can regroup for a few minutes just to be able to continue my day.

I try not to show me at my weakest because I never want people to feel like I am not capable of caring for my son.

Caring for him is what keeps me going.

Which is the very reason why I have lost myself because ever since he came into this world my life has been dedicated to him and his sisters.

I do not know how to not be a Mom because it is all I have been for the past fourteen years.

Even when I do get time to myself to do things for myself or with my husband, I am always worried about what is going on at home.

Because in my mind I am the only person that knows exactly how to care for my son.

Even though I know that my sister loves him as if he were her son and care for him the way that I do.

Its just that ever since he came into this world, I have been attached to him and its hard to leave him in the hands of others.

Although I know its good to take time to myself the truth is, I do not know how to do it without feeling guilty about doing it.

How do you make time outside of being a Mom after becoming one?

How can you find your identity again?

This pandemic has been tough on everyone one way or another, but for those of us that have vulnerable loved ones to consider, it has been particularly difficult.

My son Joseph spent most of his first year in hospital as he sustained a Hypoxic brain injury at birth and wasn’t discharged until he was 8 months old.

He then had frequent hospital admissions over the winter months of 2019; including over Christmas and his first birthday on New Year’s Day 2020. 

We missed out on so many things during the course of his first year.

The kind of things I’d looked forward to during my pregnancy; taking him to my work place during mat leave to show him off, attending mum and baby groups, going to play centres.

All these things were a no go for so long.

Each time we missed out on something, I’d tell myself that it was ok because there’d be other groups, other family day’s, other occasions that we could enjoy like everyone else.

Then the lockdown hit and we’ve spent the better part of another year under tough restrictions.

It has been incredibly difficult keeping Joseph away from our family. 

Initially we also cancelled all of our overnight respite care that we rely heavily on.

At the beginning of the first lockdown my partner and I muddled through for 10 weeks with no help at all and I can honestly say now that I don’t know how we managed it for that long.

My mental health has been very up and down and I can often swing from feeling so grateful to have what we do have to feeling utterly fed up and unmotivated to do anything beyond basic functioning.

During the hard days I have a tendency to berate myself and feel useless and guilty.

It’s difficult to break that thinking pattern and then become sucked into a vicious cycle.

If this sounds familiar I want to tell you that it’s ok, it’s normal and you can break the cycle.

Be kind to yourself. Try not to compare yourself to others or bully yourself.

Just take the time you need to be mindful of your feelings and accept them.

You’re allowed to have big feelings. This is a big situation.

Do the best you can, that’s all anybody can do and take it one day, one hour, one minute at a time if that’s what you need.

There are people that can help if you can’t do it alone. 

I think it’s also important to look for the silver linings in all of this. 

Despite our personal challenges, there have also been many positives to come from this pandemic. 

We were fortunate enough to be able to have time together as a family unit that we never would have had otherwise.

My partner was able to spend quality time with Joseph, seeing him grow and develop with his own eyes, rather than being fed information from me.

The lack of contact with others and stricter hygiene measures has had a huge influence on Joseph’s health and he has successfully gone a whole year with no respiratory admissions.

That is huge. 

The time away from the ones I love has made me so much more appreciative of the many wonderful people in our lives and as soon as I am able, I’m going to hug each one of them so tight. 

I am so grateful for the wonderful friends in my life, especially the other SEN mama’s who’s understanding, empathy, humour and support I couldn’t have got through many days without. 

It has shown me that despite all the challenges and struggles life has thrown us, we are blessed in so many ways. 

So if you’re reading this from a dark place, I want you to know, I understand, it’s ok to feel the struggle.

But please, look for your silver linings, even if you have to squint.

You might just love what you see. 

We are very fortunate to live in an absolutely beautiful part of the world where we have access to all sorts of “beauty spots”, including a lot of beaches.

Since we are in Northern Ireland, it certainly doesn’t offer a lot of sunshine (slight understatement) although that doesn’t stop me feeling it is stunning.

There’s a particular country park within about 15minutes of our house that I like best because it has access to both coastal and forest walks.

Unfortunately…as most wheelchair users will know all too well, sand and wheels just do not mix.

If you don’t have a wheelchair in your life, think if you have ever tried pushing a pram along the beach?! It is tough going, especially on the softer sands.

Our triplets are now six and we often go to one of our local beaches on weekends to spend some time together outdoors.

Jacob’s wheelchair is such an important part of his life because he wouldn’t be able to get round without it.

Obviously no parent wants their child to have to use a wheelchair but it is also something that allows him independence he’d otherwise not have.

The flip side of it is when we all head to the beach and his wheelchair becomes a hindrance instead of a help.

I have Multiple Sclerosis (MS) so I’m not really physically strong enough to be a lot of help to my poor husband.

There have been some pretty dodgy moments where we’ve genuinely thought “yip, we’re going to have to abandon the chair”.

Imagine having to ring an OT to explain your child’s SUPER expensive wheelchair is literally lost to the sea?!

Through a lot of trial and error we’ve worked out the best places to take him so that we can get down close to the water without risking wheelchair abandonment.

Having said that, he does suffer from impulsivity issues and has tried to wheel himself right into the sea so that his chair, which he calls “Dolphy” (he has dolphins on his wheels) can “have a swim”.

MS aside, there have been some pretty impressive reaction times to grab him before the chair AND Jacob are lost at sea!

Dolphy has had a gentler approach to swimming by having a bath (in several sections) when we get home to wash sand off all the important mechanisms.

Ideally, there’d be a lot more wheelchair accessible beaches around.

We are incredibly lucky though that we have a beach very close to our house that offers free hire of a beach wheelchair courtesy of the “Mae Murray Foundation”.

We were the first people to ever try it way back in summer 2019 and it is just brilliant.

We got to take Jacob down to the water and let him see his chair getting wet, which he thought was hilarious, and then go a walk across the softer sands.

It really was a magical day, such a simple thing has become one of my fondest family memories.

The whole experience has taught me that yes, disability can present you with a variety of difficulties that can range from mildly irritating to down right infuriating.

Before I had the triplets, I was a learning disability nurse so I’d been taught how to assess, plan, implement and evaluate interventions that were caused by health challenges.

This has set me up well for managing similar things with our son, although it’s much harder to do that when you are heavily emotionally invested and are literally living it 24/7.

Over the years I have learnt that there is definitely a degree of positive risk taking.

Are beaches “easy” places for us to visit? Absolutely not. In saying that, does it enrich our family time together? Absolutely.

So if you can, take the risk.

As long as it’s not dangerous, you will either succeed and have a brilliant time, or you’ll have (hopefully…) funny memories to look back on!

Why is it in the evening when all the kids are tucked up fast asleep we end up missing them a little?

No matter how challenging the day has been, even if everything went wrong that could go wrong, we still want a night-time cuddle?

That unconditional love is what keeps us going.

That first summer we had all 3 girls it was total chaos.

Sleep was non-existent, I picked up the wrong baby out the cot at night on more than one occasion, placing back a sleeping baby whilst the other is still lying there crying is on a par with handling an unexploded hand grenade.

One sudden move and its game over they are both up screaming.

Made the odd rookie error of walking down the hallway with a screaming baby at 1am and before you know it I also had a 2 year old up on the baby monitor to join the party.

I actually remember like it was last week.

Sitting there with both baby girls trying to feed and wind whilst reading a book to Grace at 3 in the morning desperately convincing her it is not morning time yet.

Praying all of them might go back to sleep for just a few more hours.

The days all rolled into one and the weeks went by.

Before we knew it Christmas came along, both of the twins slept at the same time and it was the first hot lunch I had eaten since they came home.

It was surreal not having to bounce a crying baby or rock a double pram with one hand whilst shovelling food in like it was the last supper with the other.

Somehow in a blink of an eye we were in national lockdown living in a pandemic.

Celebrating the first birthday for both girls proudly sat in there adaptive seating, I could of pinched myself at how far we come.

Then time flown being at home and ended up with a 4 year old sassy pre-schooler who knows her numbers, letters, started ballet and horse riding.

We have applied for a reception place at school, even looked at nurseries to take the twins for a couple sessions a week to get used to socialising.

The baby years are a thing of the past, I am starting to strangely miss the steriliser, the middle of the night parties.

Well no, that’s a lie I am still awake multiple times a night it is like spinning a roulette wheel, but they all sleep through the others crying it is like white noise to them now!

Someone told me when I went back to work “enjoy it the days are long but the years are short” I smiled sweetly blissfully unaware how true it is.

My eyes may still have bags that are beyond repair but my heart is full and I look back at the thousands of pictures and realise everyday was an honour to be present no matter how chaotic it was.

Growing up me and my brother fought like cat and dog! But in amongst that I knew I had a friend for life.

We laughed, we played, we pretended and above all we experienced life together.

I can now say that we don’t argue anymore, although he still knows how to wind me up and which buttons to push!

We stopped arguing as much when we got a little sister, who’s much younger than us both!

I have so many memories of growing up together.

We spent much of our childhood being kids! That’s the way it should be.

We had to grow up a fair bit when our mums epilepsy got worse.

We stepped in to help with our younger sister a lot.

Our mum couldn’t drive then but we never missed out.

We truly had a childhood that was so wonderful even if we took it for granted at the time.

We are all worrying that our children will be affected by the isolation and the long periods at home, but I like to think that they are getting something more than any other generation will get to have.

They are having time at home to explore, to be children, time to learn through play and time to learn important life skills.

Having Ethan home brings many challenges but at the end of the day all he really needs is attention and love.

I put so much pressure on myself to fulfil his physio plans to the T along with all the sides of development too, but what we really all need to do is just get by.

No pressure and just let the children be children.

Our childhood was so much fun.

We didn’t have the most expensive toys going or all the named brands, yet we were still super happy.

We made our own fun and now is the time to do that again. Time to take it back to basics and learn from our children.

Spending more time at home together has given Florrie and Ethan more time to play with each other.

To really get to know each other.

Florrie has a much bigger understanding of Ethans needs and the care that he needs.

This bond would have taken much longer to form had they not spent as much time together.

I hope that going forward they can have a special relationship just like I do with my siblings. 

What is there to laugh about right now when so many are ill and dying? Shouldn’t we all be worried, focussed, mourning, serious and concerned? 

Maybe so but laughter should still be heard. 

In fact maybe we all need to hear it more than ever before! 

There’s something extremely powerful about laughter.

It releases endorphins that make us feel better, helps with stress and boosts our immunity.

It improves our breathing, helps mental health and even aids sleep.

It connects people, strengthens relationships and can even improve your appearance! 

My son can’t tell you a joke. He can’t tickle you or pull a funny face. 

But his laughter is still contagious. 

He probably has more reason than many not to laugh.

He has seizures, he’s unable to read or write, he has a progressive genetic condition.

He can’t speak. He gets highly distressed at routine changes. He has significant learning disabilities, a brain mass and mobility problems.

But in his 12 years of life there’s barely been a day when he hasn’t laughed and made others smile too.

He doesn’t understand pandemics or viruses. He has no concept of death or loss.

Restrictions on daily life are beyond his comprehension.

Things like social distancing, school closures, face coverings and hand sanitising are a complete mystery to him. 

But he laughs. 

He laughs at the sound of me dropping rubbish in the bin. 

He laughs at water filling the bath tub. 

He laughs if I accidentally drop a fork or knife on the floor. 

He laughs when he pulls wipes out of the box one by one and throws them around. 

He laughs at the sound of mail being delivered.

He laughs every single time the telephone rings.

And he laughs at the feel of snow on a winters day. 

Oh how that made him smile and laugh. 

It’s ok to laugh even when life is hard.

In fact maybe that’s exactly when we need to laugh the most.