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Savour the best moments

Savour the best moments

Let's face it. My child is never too far away from the need for a full outfit change, or a big crying meltdown that I am at a loss as to how to fix things.

I spend a lot of time feeling a bit defeated and like I'm not doing enough.

So when you get one of those positive moments you need to cling onto them and shout them from the rooftops. What was your latest proud or happy moment as a family?

You could have 100 positive experiences and one bad one in the day.

I know which of those experiences I will be dwelling on when I get into bed at night.

I am making a conscious effort to collect these little moments in my mind to remind myself that actually things are better than I sometimes might portray in person or on social media.

In our situation it is easy to let the bad times bring you down. We live a life of great unpredictability.

There are no guarantees, we never know what is round the corner, no matter how hard we plan... that can all be undermined in the blink of an eye.

So this summer we went on a UK holiday. We are from up north, and we ventured down south.

I was bursting with apprehension. We hadn't travelled this far with Amy before. She has been known to shriek inconsolably for a small supermarket run so we had no idea how she was going to take this.

The packing was an arduous affair. So much equipment and essential items.

I think I checked her meds about 10 times before promising myself not to check again for fear of a nervous breakdown.

Would it be accessible? Are we close to a hospital? What if we did forget something?

It was accessible. But there are two main stories to come out of this holiday.

Story #1: This is the story I am trying to not let define the holiday.

Amy actually did not cry at all except for this one occasion whereby she needed her nappy changing. It was fully understandable.

She was very sore and uncomfortable and we needed to get her changed asap. I consulted my handy "changing places" app on my phone and saw that the nearest one was conveniently 0.8 miles away.

Brilliant I thought. She will be smiling again and enjoying the seaside again in no time.

WRONG. So the map wasn't entirely clear on the exact location of the facilities.

We traipsed up and down looking at every building trying to discern if it secretly had the changing places within.

A kind lady came to our aid and asked if she could help. We probably looked more like tourists than ever.

She had never heard of these facilities in spite of living at the beach front for over 30 years. She directed us over the road to a lift and said that perhaps it was on the lower ground by the beach.

We went in the lift and found some disabled toilets. Alarmingly, the door wasn't locked properly and we opened it to some poor soul who was sat on the toilet!

We thrust the door shut as quickly as we could, simultaneously gasping and apologising.

Where on earth were they? By this point Amy was quite literally foaming with rage. I mirrored her frustration and began to feel truly anxious.

My cheeks were getting hot, I felt like I was going to cry.

Why does it have to be like this? We decided to walk further down and give the search one last try before settling for changing her in our van (which would have taken a long time as we had walked so far from it at this point).

Then, as if by magic. There it was.

Behold. A sign on the door. What did it say? "OUT. OF. ORDER."

I could have screamed. Perhaps I did. I was so blinded by frustration and anger that actually I'm not sure what my reaction was at this point.

So instead I balanced her precariously on a BABY changing table. Not suitable for her weight. Not suitable space for wheelchair/medical equipment etc.

They were in the ladies toilets too which meant help couldn't come in and help. She screamed in agony as I tried to clean her. Knocking things onto the floor, kicking me in the face. This would have been much easier with the right facilities.

This was unsafe, undignified, and truly a traumatic experience.

Story #2: Amy's dad Phil is a thoughtful soul.

Whilst quietly researching fun activities for the holiday he had stumbled up on information about beach wheelchairs. I had seen them on social media a few years ago and have since yearned strongly for Amy to get to go one of these.

We had never been to a beach that could provide one and when he told me this was where it could happen I was absolutely elated.

It was a new experience just for Amy. So many things are designed with able bodied people in mind.

We are always trying to cultivate new ways to include Amy in all activities... but here was an activity that made her the central focus. I was thrilled for her.

The lifeguard office people were SO helpful. The entire experience was so positive. The day before we visited to make enquiries.

They even took us to look at the chairs and took time to explain things to us. We returned the next day with our Firefly Goto seat in tow ready to go.

It. was. incredible.

She sat so comfortably and securely. She got to go to the sea. We didn't go into the sea as 1) it was super cold and 2) the red danger flags were up.. so probably not advisable!

She didn't squeal with joy or giggle, but she did take it all in. I can't ask for more than that. She felt the sea air on her face. She could hear the powerful surging of the sea against the shore. She could feel the bump of the pebbles beneath her. She could hear the seagulls terrorising nearby tourists for their doughnuts.

We thought we might feel self conscious walking a long with this chair with comically large wheels. But actually we didn't.

I felt proud and happy. We were getting to go on the beach with our child - just like everyone else.

Onlookers smiled at us and made comments about what an amazing piece of equipment it was. It seemed at that moment like the world was rooting for all families to have a great time.

So when I look back on the photos of this holiday.. I will remember getting to use her new travel bed and how happy it made her. I will remember how pleased she was that our apartment had a bath (we only have a wet room at home!).

I will remember her delight at the sea life centre when she got to touch a starfish. I will remember her meeting my friends' daughter and my friend immediately connecting with Amy and understanding her disability.

I remember how Amy belly laughed as her chair bounced as she bumped a long the marina boardwalk (something that in the past would have caused her to cry).

I have taken so much away from the experience. I love looking at the photos of her on the beach that day.

I hope that more places start to get this equipment in and enable more people to enjoy the sea. I get emotional about the beach and the sea.

I just love it. We don't live too close to the coast so any time we go it feels really special. I sometimes see walkways that have been made on beaches so that wheelchairs can access the sea, I just wish there was more of it.

I will always be grateful to the coast guard crew for helping organise what maybe to them didn't seem like a big deal, but to me meant everything.

Try not to let those difficult moments change you and wear you down. Unfortunately, life is ultimately going to throw us a lot of those moments, and for each one we endure we become more resilient, and more grateful for the good times.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann Brown

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!)

View Ceri-Ann’s Profile

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