There is so much pressure at this time of year to feel festive. Social media provides us with so many wonderful accounts of people who basically are breathing out Christmas! They seem to be able to create wonderful Christmas experiences and it then snowballs and the expectation to join in becomes immense.

This time of year is my absolute favourite. I love the lights, the smells, the food and all the time spent with loved ones. Since being a parent to a child with a life limiting disorder it’s become increasingly more important to make the most of each precious moment at this time of year. I have however had to manage my expectations over the years and have tried to not put pressure on myself to ensure that it’s the most perfect experience.

We try to keep it very low key and choose generally just one trip to see Father Christmas not multiple. We make one special day of it and it doesn’t matter where we see him. Some years we’ve done big days out and others we’ve visited him in the local display in town. Each as magical as the other and you really don’t need to worry because each display creates wonderful memories no matter how big or small.

The smile on my children’s face is the same wherever we go.

In the past I’ve done advent experiences and done something festive each day of advent. Some years we’ve forgotten calendars and have to add in as we go along! It really depends what type of time we’re having when December hits!

Some years we’ve all had lovely matching pjs and other years we’ve worn the same ones from the year before. This however meant that we could show the children that you didn’t need to buy new all the time and that reusing is just as good.

Some years I’ve made sure my children have beautiful crafts to make and other years we’ve done nothing. Some years we had fun baking lots of festive treats and other years I’ve had to throw out the mincemeat further on in the year as it didn’t get used.

What I have learnt along the way is to not have to conform to what’s around us.

Not to put that pressure on to create the perfect Christmas. Just being together is magical enough. This year will be no exception as we’re currently still in hospital after 9 weeks just hoping to even make it home to be together.

We had to cancel our Christmas break away this year which was really hard as it was our only trip away for 15 months as a family. We don’t get away much and we chose Christmas this year to be our one together.

Our lives are super busy day to day and adding in Christmas or any celebration can mean you really don’t feel like being festive.

This year I’m trying to make it a little more festive in hospital, which is no mean feat, but I’m also not going to make myself feel bad if we aren’t conforming to all those perfect Christmas’s that happen across social media. Our lives are different to those families already so as per everything else we will celebrate in our own special way!

Please just do what you can this Christmas and enjoy those special moments of just being together no matter what situation you find yourself in.

Deterioration is something no-one wants to deal with. That means things are changing. It means life is becoming more and more precious. It’s something you spend your whole time trying to avoid when you have a child with a life limiting disorder. However, it’s something that actually you can’t do anything about.

There have been many times over the last 13 years where we have seen Ethan regress. This has mostly been skills he’s learnt along the way that then after a period of illness or increased seizures, just disappear. Some he eventually relearns along the way, but most he doesn’t and they are gone for good.

We celebrate every single milestone with Ethan because every tiny achievement is massive for him.

t’s also incredibly special because we don’t know if that skill will stay or, like the others, disappear as well. It’s so disheartening when this happens, for us as parents, but I do also wonder whether it’s frustrating and disheartening for Ethan also.

He works incredibly hard to gain these skills and I’m almost certain that he feels the achievement and excitement that we do too when he achieves these milestones. What I don’t know though, is whether he feels that sadness that he worked so hard for a skill and for one day not to be able to do it again.

What if one day you woke up and you couldn’t stand up, or you couldn’t use your hand, or you couldn’t move in a way you could the day before? That’s got to be scary right? It’s got to have some effect on you. Maybe that’s why he doesn’t go on to re-learn the skill. Or maybe it’s because that part of the brain doesn’t work that way anymore.

It’s something I’ll never know and that’s really hard.

For a lot of Ethan’s life we are re-teaching skills he’s learnt before and some we don’t revisit because maybe it’s not as important that he has that skill and there are new skills to be learnt all the time.

Not only does Ethan regress with skills but actually his health deteriorates and he slowly becomes less able to be as well as he was before an acute illness or seizure period. It is something we’ve faced a lot over the last couple of years. It’s something that is hard to watch. It’s harder than just losing the skills, because you are losing a bit of him each time.

All of this combined makes every moment together more special. It means that every single day needs to be celebrated for all those small wins. All those things we take for granted suddenly become the big things.

The things we aim for and hope won’t disappear.

If you focused daily on what your child has lost or can’t do anymore then it makes for a very depressing life. Some days it’s harder than others to dust yourself off and that’s okay. But for the most part you celebrate each day your child is still here as a massive win and take that as your reason to carry on fighting through those regressions and deteriorations.

There was a time not long ago when I could lift and manoeuvre Ethan around with no effort at all. I used to lift his wheelchair in and out of the boot and then transfer Ethan in and out of the car into his chair. I have been hoisting him at home for about 4 years now mainly to save my back and we have had our wheelchair accessible car for 2 years now as well. He got heavier and heavier especially over the past year!

Today is the 2nd time I’ve had to use a hoist whilst out at the hospital on my own. I usually just lift him for weighing or onto the bed for an examination, but I can’t even do that now. Now I have to be that annoying person asking for hoist to be brought to us just so he can be weighed!

At the moment I’m having to do it alone.

Very few places we go are fully accessible. This includes some of the hospitals we visit. Only one of the four that we visit actually has suitable changing facilities at the moment. This is going to make it harder for me to go to hospitals alone, which at the moment I’m having to do it all alone. I’ve always done the majority of hospital appointments alone due to Ethan’s dad and step dad working. I like to be independent and its becoming very clear that as Ethan gets older that this independence will disappear.

This is the reality!

I should be able to take my son out on my own and not worry about having to leave after a couple of hours when his pad changes. I shouldn’t have to rely on others to help me lift him to meet his basic needs. He shouldn’t have to stay in his chair for a whole day without a stretch because there’s nothing to help him out of his chair. But this is the reality for us and families like us as our children get older.

It shouldn’t be something we just have to accept, like everything else that comes with having a disabled child, especially in hospitals who treat our disabled children. 

Life can become overwhelming ever so quickly having a child with complex health needs. Things can change in a blink of an eye which need your full attention. There’s no time for relaxing or switching off, because if you do things then build up again so quickly.

You have to plan your time wisely…

Last week we had a last minute appointment which threw my whole week! When you have to plan your time wisely it’s hard to be easily adaptable, but that’s the way it is with a child who sees many different medical teams. It was an appointment we just couldn’t miss. We had been waiting over a year for the appointment due to Covid.

At the moment the rules in place to keep everyone safe state that, it is only one person to attend with the child going to the appointment. This meant that I couldn’t take my youngest who comes everywhere with us! I had to find help at the last minute and I am forever grateful for my family’s help in times like this. My family live 40 minutes in the opposite direction so it meant heading there and then rushing back to pick Ethan up and then head an hour in the opposite direction! It makes for a very long day.

It scared us non the less.

A day missed at home due to an appointment means housework gets missed and the washing pile mounts up! With no time to catch up in the evening due to not being able to make noise as we live in a bungalow. Last week Ethan also had a day off due to a Covid scare at the school. Luckily all OK but it scared us non the less.

When Ethan’s home he needs my full attention. I can get little bits done, but between his and his sisters toddler demands it isn’t easy to keep on top of my jobs.

Then I feel like I haven’t actually spent any proper time with them, just fulfilling their daily needs with food and water! It’s a big old spiral and this week I’m now trying to catch up massively.

I hit a brick wall

It’s hard to keep having the get up and go when your so exhausted, mentally and physically. This slows the process down massively! Yesterday I hit a brick wall. Today I need to climb that wall to get back on the organised path!

Every day brings its new challenges and some I’m prepared for and some really knock me for six! 

When we first started our journey and Ethan was diagnosed, we headed up to a special appointment which was filled with all different specialists.

They all had previous knowledge of his genetic disorder and we were told that they would be able to share their knowledge with us and give us more of an insight into his disorder.

We were so excited because we had no idea about this rare genetic disorder.

We didn’t know what the future held, how Ethan would be able to progress with it or how long we would even have Ethan with us.

There is little to no research available online so all we were going with was a piece of paper with lots of coding on it.

After a mission to get to the hospital after severe flooding we made it and entered the room full of at least 15 specialists.

All in a big circle staring at us.

The meeting began with us introducing Ethan.

Then they proceeded to tell us about his condition, only there wasn’t much for them to tell us.

We were met with a room full of silent faces.

They told us there were a few cases of children being diagnosed with his disorder but there wasn’t much they could tell us as they had either passed away or they hadn’t met them.

They told us that Ethan did present with all the symptoms of someone with ARX and that if we could keep him well that would give him more of a future.

That was it. No other advice, no thoughts on developing, no thoughts on the future, nothing.

Going into that meeting as a new parent who was being opened to a world of disability and a rare genetic disorder I was relying on the professionals to help us and they didn’t.

I didn’t know what questions I should ask or what we should be pushing for for our son.

Since that day I have learnt that you need to speak up, you need to constantly ask questions about everything, do your own research over tiny things and ways you can help your child. I have learnt so much from other parents and that is how I know what we know today.

There is so many twists and turns on this journey.

Having other parents there to help us and tell us things the professionals don’t tell us is so incredibly important.

I often get thanked by new parents when I’ve told them they are eligible for something or they can access something they didn’t know about, but the truth is, if another parent hadn’t told me I wouldn’t know either.

I think it’s so important that we help each other out.

There’s no point keeping tips tips information to ourselves.

Sharing the love not only helps our families but other families as well.

None of us will ever walk the same walk but all our paths will cross and its important to help and support each other out.

When you have children your time to yourself is limited.

When you have a disabled child, you get almost no time to yourself.

Our evenings are taken up with seizures and settling Ethan.

We are lucky that Ethan goes to his Dads every other weekend which gives us 4 evenings to ourselves a month.

We try to have a date night on one of those nights because it is so important for us to spend quality time together un interrupted.

Me and my hubby are a great team but we need time to reconnect as people rather than just parents.

Over the last year I’ve had to learn different ways of self care to get myself through.

Steve and I will tag team through the week and take it in turns to get up and down.

In order to survive the last year we’ve had to take it in turns some evenings to have early nights.

When you think of self care you automatically think of baths and face masks. These are great but its also important to go a bit further and find techniques you can use to relax your mind as well.

So whilst I use these as mentioned below, I’ve also found other ways to really relax my mind.

On those early nights I’ve found that making my skin feel good has helped relax me more.

A face mask followed by some calming music and a magic mask called a space mask has helped me relax to sleep.

I highly recommend the space mask to relax tired eyes and relieve tension headaches.

I have also been doing a lot of mindfulness throughout the day.

Its really helped to calm me before the day and I’ve used the breathing techniques throughout the day to calm me when I’m feeling anxious or stressed.

I have found doing some colouring in the evenings has given me something to focus on rather than my thoughts going crazy in my head.

It’s perfect for me with having to get up to Ethan as I’m not constantly pausing a TV program!

Although we do still watch TV programs they just takes longer to watch with all the pausing!

The last thing that’s been helping to keep me feeling more myself has been some gorgeous roll on aromatherapy scents.

My best friend bought them for me and they help relax me during the day with the use of the different smells and herbs.

Its so important to look after your mind and I really have found these things have helped to relax me more and to allow me to look after myself ready to face day to day tasks with Ethan.