We had our first "proper" holiday a few months ago. I've been wanting to tell you all about it for quite some time now, but you know how life goes.
I would love nothing more than to one day board a plane and take our little girl somewhere incredible. But with that comes so much planning.
I have seen a lot of parents like us in forums reaching out for assurance and advice on holidaying.
Getting permission to take various medications on board, working out what equipment can come and if you need to do paperwork for this, paying for insurance for your child with complex needs and so on.
Will we be there long? Do I need to pack meds? Is there a space to change there? If so must pack spare outfits. Do we need toys and ipad to qualm any potential meltdowns?
Will I be able to fit the shopping in the wheelchair hood or should I ring ahead and make sure the firefly trolley is available? And so on.
Our first holiday was a UK one. I figured it was good practice to see how we all cope out of our house but without being too far away.
We went to Blackpool which is only an hour or two drive away.
I learned a lot from the experience. The main thing we learned is that sometimes "disabled access" or "wheelchair friendly" does not always mean what I want it to mean.
For example yes, the caravan (or cabin as I was mocked for calling it) had a fantastic wheelchair ramp and a wide doorway to enter. But really that was where the convenience ended.
Amy has one of those big hospital style beds, the ones with padded sides the whole way round and a remote control for height and angle adjustment.
Here we had to squash the provided beds apart and lay down an inflatable bed with sides. Dressing her was hard work as it wasn't at the right height and oh wow, the back pain.
She wasn't as comfy but at least she was safe. Once again we were "making do" and making the most of what we had.
Excited as I was to be on holiday seeing the botches you often have to make to even just have your child be in bed can be a sore reminder of the challenges you face.
It makes you think of in a few years time when she is much heavier. We can't "make do" without hoist facilities and level access dressing facilities.
The wet room was only okay because we took our firefly splashy with us. Without this the poor girl would be lay on the floor. How dangerous is that!?
Such as "when you say full wheelchair access/adapted caravan... will my child be able to sleep safely and be clean and be dressed with relative ease?"
I know those places exist, I just need to do more research next time. Planning is hard, the more I need to plan the more I have to look at what could go wrong.
The more you look at what can go wrong the more you feed the anxiety dragon. It is a self perpetuating cycle designed to frazzle you and keep you awake at night.
It can prevent you from your primary purpose - enjoying yourself with your family!
I loved the freedom. I loved not having copious amounts of washing to do, copious amounts of appointments, numerous phone calls and so on.
There was definitely a peaceful element of the trip that did refresh my outlook on life. I could see that yes, we can go on holiday and this is possible.
I didn't love setting the fire alarm off every time I made toast.
We went to an indoor lights attraction (called illuminasia - if you are ever in Blackpool this is awesome for visually impaired children and also has wheelchair access).
We visited the zoo, the pleasure beach, the sealife centre. All sorts.
Amy took it all in her stride, she loved watching the sea. It was a great way to see how far she has come.
Whilst there were many zoo themed outbursts of rage... there were also many times where she was interested in what was happening around her.
If we had tried to do this two years ago it would not have been possible. She would have just screamed and cried the whole time.
The night time was a no no for going out and this did make me sad. So many families going to the club area and the children got to dance and have entertainment.
There were hair braids, face paints, trampolines, all sorts. I hate these little reminders of how different our lives are.
I hate the thought of her being sat in her wheelchair watching others and not being able to say "I want to do that". We include her in every possible activity but often she doesn't want to or gets upset.
So we retired early each night to our little caravan.
We went with friends. One of Amy's school friends who also has quad cp. Unfortunately she became suddenly very poorly and had to go to hospital. She missed out on the whole holiday.
Thankfully Mia is much better now and we hope to still visit illuminasia with her one day.
Our next plan is another UK holiday as we were lucky enough to be awarded some family fund vouchers towards a holiday.
If you haven't applied to family fund yet I implore you to. You deserve it. I wish we had done it sooner.
Money doesn't get given towards holidays in life when you gave up work to be a carer - please do claim what you are entitled to.
I also want to thank all of the other families out there who answered my many questions on how to go on holiday! Without these insights we would have struggled.
There is a lot of solidarity and kindness when it comes to parents who have been doing this for years and years before us.
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