Additional Needs

A Bucket List of Memories to Make

Posted by Naomi Aldridge on 21st February 2019 Additional Needs, Advice & Support

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A couple of years ago I created a bucket list for Ethan. He was 6 at the time.

Ethan was born with a rare genetic disorder called ARX.

We have never been given a life span for Ethan, for which I'm very glad about, but we know that his life will be limited.

Having to prepare yourself that your child may never make adulthood is pretty hard and harrowing to say the least.

Ethan is at high risk of SUDEP due to his complex and hard to control seizures.

We have been told that keeping Ethan well is of high importance.

He has a good diet and we try to limit the number of bugs he is around.

We are lucky he eats an oral diet but also has a PEG to help if needed to build up his calories.

We have had to write advanced care plans in case the unimaginable happens.

As part of this we included Ethan’s bucket list.

Most people write a bucket list when they are turning a big milestone. A list of things they want to complete before a certain time.

So, this is what Ethan now has. A list of things I want him to experience.

Things that are exciting, things that are relaxing and things that show him the world around him.

We haven't got hugely far with it all but we have started it.

First up was to sit in a police car with the sirens on. Ethan loved this!

He also got to sit on the bonnet of the police car and have his picture taken with the policeman!

Second up covered a couple on Ethan’s make a wish trip to London.

We visited winter wonderland to find Santa, a show in the west end and a ride on the London Eye.

An incredible weekend full of lovely memories.

Ethan also walked a dog! Our friends’ dog "Stevie" was a willing participant and Ethan walked him along the Seafront.

Ethan is often poorly and so fitting things in and around this is challenging.

This year I will endeavour to make so many memories with him and ensure whatever time I have with him is fun and happy just like it should be.