Father’s day is coming up fast and I’m super proud of myself because this year I had the gift sorted early.

We got my hubby a BBQ tool set engraved with wee messages from me and the triplets.

It actually arrived as we were having a BBQ so Daddy got his pressie early since the kids were so excited!

The problem is, I’ll never find a gift that could actually reflect the Daddy Ryan is to our kids.

We wanted a baby for years and did three cycles of ICSI before falling pregnant with the triplets.

One of them has spina bifida, hydrocephalus, epilepsy and learning disabilities. While I was used to disabilities as someone with Multiple Sclerosis (MS) and a learning disability nurse, Ryan was thrown into this world of special needs in a very “sink or swim” way!

I really couldn’t be more proud of how he’s risen to the challenge and learnt all about Jacob’s various conditions.

Having MS has also meant that Ryan ends up doing more than his fair share of the “work” involved with having triplets.

He gets up everyday without complaining so that he can carry Jacob downstairs for me since I don’t feel safe doing this anymore now he’s six and much heavier.

There are days I find it very difficult to get up due to extreme fatigue and tight muscles causing pain, so Ryan will help the kids while I sleep on for a while.

Again, he never complains.

I also get waves of fatigue during the day and sometimes despite trying really hard, I have to just give in and rest.

He never questions this and actually encourages me to go and do what I need to feel better.

The triplets look up to him so much as well.

He’s their hero and they genuinely couldn’t love him anymore.

Jacob loves that he sometimes gets “Daddy back rides” as he calls them in our back carrier.

Daddy can also push his wheelchair up the big hills or over bumpy ground etc which Jacob also completely adores since it’s opened the world up to him to explore.

What a better gift to give our special little guy.

Chloe loves that Daddy makes her laugh constantly and helps her feel safe when she’s in any situation that makes her feel uncomfortable.

As a shy and nervous child, she will literally use him as a “shield” if she wants to hide away a bit from whatever is happening.

He is literally her protector! I always smile when I watch them together.

Our other son, Ben, just thinks his Daddy hung the moon. He idolises him so much and gets really upset if he feels Ryan is cross with him at all.

They both share an interest in superhero films etc and it’s just lovely watching them together.

I don’t understand half of what they talk about, but it’s brilliant that they have a shared love of so many things.

There will never be the words to explain or a gift to show Ryan what an amazing Daddy he is to our kids, but I truly hope he knows how much I respect and love him for it.

We were married ten years on the 28th May and I honestly couldn’t wish for a better man to share this crazy adventure with.

Have you seen the film on Netflix called “The Willoughbys”?

It is our six year old triplets absolute favourite (this week anyway!).

It wouldn’t have been one I’d have thought they’d enjoy because it has what I feel are quite “mature” themes, including the absence of parental love.

In saying that, they think it is absolutely hilarious and when chatting to me casually about it I was able to see that they have most definitely grasped the overall messages.

It’s funny isn’t it, how children’s films can appeal so little to adults yet be absolutely spot on for the kids!

Our little man who has spina bifida, hydrocephalus, epilepsy and learning disabilities in particular really enjoys watching it.

His favourite part is the song that goes along with it, called “I chose you”.

Jacob is naturally drawn to music and uses it to communicate with us if he is having a seizure or he is struggling to express himself.

Music will generally bring him out of a non epileptic seizure and sometimes even the bigger epileptic ones.

If nobody else is around to have to endure my “singing”…we will sing it together and he always makes sure to look right into my eyes and say, clearly, “I chose you”.

That’s pretty much the point I have to hold back the tears and pretend like I’m not a soppy overtired mama!

What a perfect opportunity though to discuss his disabilities with him!

He has asked me in the past if I hate his spina bifida and I always say “no”.

To me, hating that is hating a part of my child who I love unconditionally.

Jacob without his medical conditions is not MY Jacob, and I wouldn’t trade my superstar for anything.

So I tell all three, often, “I chose you” and make sure they know I will always choose them exactly as they are.

Given his behavioural difficulties that mimic ASD in a lot of ways, I use a line “Now I found the strength, to make a change, look at the magic I’ve found” to gently remind him that sometimes change can lead to beautiful things.

It sounds really silly, and I can understand that to other people it probably is.

It works for our family though so I’m not worried about how it looks on the outside.

Another great one he likes is “Ohana means family, family means no one gets left behind or forgotten” from Lilo and stitch.

We actually have a decal on our wall of this quote and family pictures around it.

If we are out for a walk and Ben and Chloe want to do something that would exclude Jacob e.g. climbing trees, we compromise and set a time limit to it.

Then we come back together and Jacob will happily say “Ohana” and move on.

For a child with learning disabilities, it is remarkable to me that he can retain and genuinely understand the sentiment behind these things!

Despite being a complete musical flop myself, it feels so precious for me to have found a way to communicate with Jacob that is relaxed, informal and great fun!

We now do music as part of our daily routine and will sometimes have kitchen discos!

Thankfully for our neighbours, we live in a detached house….

We’ve all heard the phrase “new normal” and more recently I’ve seen a lot going about social media about better days being ahead.

Is that really true? What are these better days going to be like?!

Will I suddenly lose all this lockdown weight and become rich?! I doubt it!

Nobody will ever be able to answer that question in terms of what is better for everyone as a society, because everyone holds different views about what’s most important to them.

In saying that, better days ahead means for YOU and YOUR family.

Maybe you are like us and have been shielding.

Even the most restricted contact with your family and friends is such an incredible feeling…that’s definitely something to hold onto.

I’m in Northern Ireland so know that many people’s experiences of lockdown will vary depending on where you are from.

This is lockdown number 3 for us and this one especially has felt long, lonely and difficult.

We had a massive change recently when our little boy started a specialised school because his mainstream school simply couldn’t cope with his complex medical needs any more.

This was due in large part to him needing multiple brain surgeries to correct a malfunctioning shunt as well as all the trauma of having seizures.

I can’t remember a day that he was in longer than around 9.30/10am or that he felt happy going in.

He was an angry, frustrated, confused and hurting little boy. I don’t need to tell you what that did to us as parents as well as his triplet siblings.

It has been a very dark time for us.

He has now been at his new school for 6 weeks and the change has been absolutely phenomenal.

He has yet to have a day that I have had to collect him early due to his seizures, and his teacher reassures me his pencil grasp is excellent.

Previously Jacob was throwing then going into a seizure as soon as you’d ask him to pick up a pencil.

There was a really strong negative association with it and I really worried we’d never get him to write.

Seeing him now is just the most incredible feeling! It’s a small thing for most, but it’s truly amazing for us.

His brother and sister are settling back into their school as well and seem to be really enjoying all the routine of it again.

How amazing is it to hear children playing together again, or see them walking to school, or coming out of school waving goodbye to their friends?!

If covid has taught me anything, it is to remember who is important in your life.

I truly hope that no matter what your own “better days” will look like, that they are here or at least just around the corner.

There’s no denying this year or more has been incredibly difficult.

Covid-19 has reaped absolute havoc with all of our lives and freedoms.

To me, the people who have suffered the most are children.

What’s been asked of them is just beyond anything “normal” or fair.

Being taken from their schools, asked to engage with homeschooling, not being able to play with their friends, being told they are no longer allowed to hug or kiss relatives, missing contact with their much loved grown ups etc.

It’s something that is just so sad.

I often imagine how children with complex needs feel.

Our son has spina bifida, hydrocephalus, epilepsy and learning disabilities meaning he has a whole team of amazing professionals who help him be as strong as he possibly can.

These people became his friends and suddenly they were all gone.

He couldn’t have face to face appointments and had to try and “make do” with zoom calls etc.

Again, it’s just so hard on all our little people and my heart genuinely feels for them.

We’ve just had our second Easter in lockdown.

This year especially we made a bigger effort than we usually do simply because the kids have missed too much already.

With his complex needs, we had to consider how to include Jacob so he didn’t feel left out.

What did this look like then?!

1. A colour co-ordinated egg hunt

Since we have triplets, we need to consider the fact that Ben and Chloe are faster and more agile than Jacob would be.

I’ve learnt in the past that the distribution of eggs can be unfair, which puts a cloud over what should be a fun morning together.

SO…this year I had a word in the Easter bunny’s large ear and asked that he used those little plastic coloured eggs to hide their treats.

Jacob’s eggs were also hidden at eye level so he could easily spot them from his wheelchair.

It was such great fun working together to find yummy treats.

2. Preparation

Jacob doesn’t really like surprises and can become distressed if he is unsure of what’s going on.

So we were giving him little snippets of information about Easter for a few weeks and explaining that he can’t eat TOO much chocolate in one day.

We also explained who he was likely to see on the day and who he wasn’t. A very simple but effective change for us.

3. Protecting against sensory overload

We have all felt like we can’t cope with noises or busy environments at one time or another, but Jacob feels this way a lot.

He will now come and say “too much” to us so we know it’s time for a quiet break.

We reduced the risk of this happening by informally breaking up the day into more manageable “slots” for him while still having lots of fun!

Yes, our Easter doesn’t always look like other people’s…but that doesn’t matter at all.

It worked for our family and we had a fantastic time together!

I really hope that you had a brilliant one too, no matter what adaptations you may have made for your little one(s).

I wrote a blog about epilepsy back in November 2020 for awareness month. It’s rolled around now in March for the Epilepsy Society’s “Purple Day” on 26th.

I volunteered to write a blog about it and then honestly became completely stumped.

Don’t get me wrong, I’m under no illusion everyone reading this now has read all my blogs.

One of the huge benefits of this type of writing is you can “dip in and out” as you want or are able to.

So do I simply repeat what I said then? What do I want people to know about Epilepsy?!

When I was working as a nurse in a home for people with neurological disabilities, I supported several clients who were known to have epileptic seizures.

I’d studied this in uni and seen it quite often during clinical placements since I specialised in Learning Disabilities.

Why? Well, the more severe a learning disability is, the more likely it has been shown that the person will also have epilepsy unfortunately.

It was something I felt confident in so ended up volunteering to be my work’s “epilepsy link nurse” to liaise with the community and hospital teams who also shared care with our clients.

I left work to have my triplets back in 2014, which seems like just yesterday in so many ways yet also a whole other lifetime!

When our little boy was born with spina bifida, our world was turned upside down.

As a triplet and a preemie, he was facing an uphill battle as soon as he was born weighing just 2lbs 10ozs at 32+4 weeks gestation.

We were incredibly fortunate then that he had a very “smooth” stay in NICU, “graduating” to SCBU fairly quickly for growth only prior to his back closure.

After the initial operation on his back, the pressure built up in his brain and he was diagnosed with hydrocephalus and whipped off for another surgery to fit a ventriculoperitoneal shunt to control it.

It was then we were told he was more likely to develop a learning disability and/or epilepsy.

It wasn’t the biggest shock ever then when he was diagnosed in 2018, but wow, did it hurt!

How the world had also changed even in that short time since I was practising.

The old terminology of “simple partial” and “complex partial seizures” seems to be replaced with “focal aware or unaware”.

What a steep learning curve we have had despite my own previous background in epilepsy.

So what would I tell parents of newly diagnosed children?

Firstly, know your enemy.

Epilepsy is a wildly variable condition and the best way to combat this is to study it as much as you can. 

When I say study it, I mean learn what it looks like for your child.

What does a typical seizure look like for them? Is there anything you can identify as a trigger? What helps / doesn’t help them recover? Do they need emergency medication and if so what dose/timing works best?

Any pieces of information you can give the neurologist will help put the jigsaw together to form a more complete picture.

The second thing I’d say is find your people and lean on them, hard.

This is not an easy journey and one that should definitely not be underestimated.

You will need support that you can rely on and people who will be gentle when you go a little off the deep end from time to time (thank you to my people who have stayed through the storm!).

I know this advice is given often so I am only repeating wiser people’s words but really…you will need help so that you can fight with renewed energy everytime you’re up against a wave of seizures or particularly “big” ones etc.

The third (and final) piece of advice I’d give is to stand your ground.

People will sometimes try to offer what they feel is a solution and whether they are a neurologist or a family friend…don’t follow that if you don’t feel right about it.

My husband and I don’t stay away from home, and we don’t go far during the day either for fear of Jacob needing us.

There are people who say we need a break and despite them being completely right, I am most settled when I am near to him in case of prolonged seizures.

I don’t want to leave him, not yet.

There have also been medical professionals who have asked silly things like “are you sure that’s a seizure?”, “does he really need rescue meds?”, “at least it isn’t a big epilepsy like tonic clonic seizures” etc.

The bottom line is I am more than willing to take advice from the qualified professionals but I do not comply without question.

Push your teams to find better answers if you feel more avenues need explored, as long as you are able to accept when it’s time to go with their advice.

I’m not a huge fan of rock music but my husband, Ryan, is.

While I don’t really “get” the genre (to say the least…sorry rock fans!), one of the “softer” songs he likes is by Daughtry and called “Life after you”.

He always used to say he thought of us when he listened to it back when we were dating and in blissful ignorance of what lay ahead.

He said as long as we had each other and could laugh together, we’d be fine.

As much as I hate to admit it he was right, and I truly don’t make that statement lightly, especially in writing.

We’ll be married for ten years in May and I can honestly say we are as happy now as we were on our wedding day.

Despite that, we’ve faced a lot of hard times together including infertility, ill health, disability and grief.

One of our beautiful triplets has complex needs with all the doctor visits, hospital stays, interventions and operations that go alongside.

Much of our life is absolutely amazing; I love our children, our home, our family and friends yet there really have been some very dark times together where we’ve felt broken.

Much of what has got me through is Ryan, and his often annoying ability to make me laugh in even the toughest of times.

There really is a lot to be said about keeping a positive mindset even during those hard times. Is that always possible?

Of course not!

Sometimes the pain is just too raw that no amount of positivity would get you out of that dark space.

As a special needs parent I have felt that deeply myself and am aware most readers will have too.

We all differ in how we cope and I’ve been in the situation where I have felt anger at people suggesting I “stay positive”, so please bear with me.

Now I can see a bit of improvement in Jacob’s epilepsy and his ability to cope with his world now he is attending a specialised school, I feel I can “step away” a bit and look at things more objectively.

I am making a very conscious effort to adapt my thinking towards a more positive mindset having lived in survival mode for so long now.

I do things like have a “positivity calendar” of inspirational quotes, spend time with my kids, take time for myself and generally try to shift away from “what if?” thought patterns and towards a “one day at a time” mentality.

One of the big hurdles I found was acceptance.

You’ll be coming from your own point of view and experiences, but generally people do choose to be happy.

It isn’t something that will just happen for you or something you can chase.

Obviously you can adjust things in your life to make you happier, but it’s in making the decision to do this that you will find some peace.

For example, a big challenge recently was accepting Jacob now has learning difficulties and needed to move away from his mainstream school to a specialist setting.

My choice was to fight that (which I did, for a bit!) or accept it and make the best of the situation.

The outcome was the same- he needed to be in a specialist school, but my attitude wasn’t and that’s where the shift came.

I’m not a life coach, psychologist, therapist or any sort of expert really.

All I know is in my own experience, life really is much better if you fill it as much as you possibly can with laughter.

We’ve all been there.

You need to go to an appointment in the hospital and instead of just walking in, you have to negotiate wheelchair access for your child.

Or even a new parent having to now manage a pram in a world designed for able bodied people.

Our little man is a full time wheelchair user so we have to work out where the ramps etc are instead of just “walking into” the appointment.

That’s our life and it doesn’t bother me in itself, but whenever the access is poor, I feel a hurt bubbling up in me that is very unpleasant.

Jacob recently had an appointment in a hospital which we have been to before, so I felt relaxed about the access.

I’d hurt my back so was very grateful that we now have a wheelchair accessible car so I don’t have to lift our 18kg boy into his middle car seat (he’s a triplet and for some reason it’s the only way the seats fit).

The problem was a broken lift at the entrance.

I tried to ring the department so someone could come out and help me but there was no answer.

I felt panicked and angry all at once because he needed the test done, but how could I get him in?

There was no other choice but to lift him out of his chair, climb the eight stairs, then go back and get his wheelchair to drag it up.

Thankfully there was a chair at the top that I could use to sit him on while I went back for his chair.

I genuinely felt so hurt for Jacob that he couldn’t just walk up the stairs.

It stirs up feelings of sadness that your child is a wheelchair user so will face these obstacles for the rest of his life. It doesn’t feel fair.

My back was very sore at that point and as someone with Multiple Sclerosis (MS), I can honestly say that I felt every single step.

That small staircase felt like a mountain.

When I got into the department I told the receptionist their lift was broken which they apparently knew!

I was so angry, how could they know it was broken and not even put a sign up?!

You don’t see roads blocked without diversions in place, yet this broken lift would affect so many people with mobility problems with no alternative access being offered.

The dismissive response from the receptionist made me so angry.

Why couldn’t he see that it was totally unacceptable to ignore the fact the lift was broken?

You wouldn’t lock the doors then expect able bodied people to find their own way in, so why do it to people with mobility problems?

As a mum to my amazing little man who is a wheelchair user, I have to try and balance making him aware of his right to have access against making him “bitter” about not being able to climb these mountains.

He needs to be annoyed enough to fight for his rights yet not allow this to become something that will damage his mental health.

There will always be places that can’t be made 100% accessible, but a hospital should most certainly not be one.

For now, we’ll do what we always try to and simply tackle each mountain as it comes!

We sold our last house when our triplets were little over a year old.

They say moving house is one of the most stressful things you can do…I doubt they factor in triplets to that saying, especially one with additional needs when you yourself have a serious neurological condition (Multiple Sclerosis).

We moved because our now six year old son was in need of a house that would accommodate a wheelchair, standing frame, hoist and any other equipment he would eventually need.

We have been through four and a half years of negotiating to get plans finalised and agreed then signed off on etc.

We’ve compromised in that we have a two storey house with a double garage that was fit to be adapted.

Those works finally began before Christmas in 2020 and are due to be finished in a few weeks, much to our amazement.

So what does this mean to our family?

Well! For one, we have a permanent ramp to our front door that is the right gradient for our son to go down AND up himself!

See the top photo and the joy on Jacob’s face!

It is amazing to see as we’ve been using a temporary steel ramp for our two step access while we waited for these works.

Jacob also now has a bedroom downstairs that will have a fully working hoist, toilet, changing bench and shower.

He might not be moving downstairs for some time yet to sleep overnight but he will certainly be utilising that space for his physio, changes, bathing etc.

It has a storage room to the side and we really can’t explain how welcome that is when he is a child with high physical needs and a lot of bulky equipment that isn’t the easiest to store.

He has direct access to his room from outside which is going to be invaluable to him (and a terror to us) in his teenage years!

As Jacob has epilepsy, the chances are my husband and I will move downstairs at some point to help keep Jacob safe, but we’ll do whatever works for our family.

As I also have MS it isn’t out of the question I will also be a wheelchair user at some point so we need to be mindful of that.

Thankfully, we were able to buy a house that should accommodate our needs for years to come, if not forever, although my husband is convinced we’ll move to the country one day!

In the meantime, we are totally in love with the new freedom these changes have given our son at a time when he really needs to know doing things himself IS possible with a few changes.

We also have a new car (read my other blog about that if you’re bored!) so things are starting to get easier in terms of physical lifting etc which is hugely needed with a strapping six year old!

He’s also a typical six year old in terms of emotional control (or lack of) so we’ve had the doors widened to accommodate his speedy manoeuvres around the house!

I’m looking forward to many years of enjoyment from the changes that are being done by these excellent builders and tradesmen.

I hope they see the difference it is making to our lives and see the joy on our son’s face as he whizzes down the ramp (albeit MUCH too fast!).