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.

In the last few weeks we had two big losses in our family.

Ethans great grandma on my side and his grandma on my husbands side.

We have no idea of Ethans understanding on death and loss.

We included Ethan in the chats we had with the girls.

We read a lovely story about a grandpa who dies and how the little girl is sad and misses him.

They make pictures and remember memories spent with him.

We then told them about my grandma and how poorly their grandma was.

When their grandma passed away we spoke again about the book but didn’t read it this time.

Ethan fell asleep during this conversation so I’m not sure what he understood if anything.

We have spoken to him again since as we remember Grandma and all the special times we shared with her.

When people who are close to Ethan go on holiday or don’t see him for a period of time he notices that.

When they return he will ignore the person and make them work really hard to regain his smiles!

We’ve explained where the person is and when they return he sees them again.

When someone dies he obviously won’t get that return to then see them again.

Does he just think they are away and will be back soon or does he realise he won’t see them again?

The answer to this is that I really don’t know what he understands.

We’ve been outside to look for Grandma in the stars, lit a candle and talked about  memories together.

We all spoke of Ethans memories and we’ve shared photos too.

He’s really been included in the process but I have no idea whether he understands.

Ethan has different emotion reactions to his own feelings but how far this understanding goes I’m not sure.

He also picks up on when we are feeling different emotions and is very intuitive of that even if he doesn’t understand the reasons why.

We are going to explore some more books about feelings as this is the only way I feel I can give him the tools to maybe understand.

We will continue to include Ethan in all our talks about loss and death and adapt to his level.

For books we use on this journey head to our Instagram livingwithmyhero. 

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.