It’s the little things

By Liz, Harry and George’s mum

My boys are cheeky, sociable, and love music. Harry likes animals. George likes drums and being noisy! Both have a rare genetic condition.

The condition they have is so rare that there are only about 100 cases in the world, and it took Harry eight years to be diagnosed.

As any parent will know, looking after your children can be very tiring. For my boys, there are extra responsibilities, routines, and appointments to add into the mix.

My husband and I feel like their little personal assistants at times as we have constant doctor’s appointments, forms to fill in, medications to give, and feeds to prepare.

Having time to just be their mum and dad doesn’t happen as often as we’d like as we need to be there to provide care. This was the main reason we needed the support of Acorns.

Before we knew about Acorns, I didn’t know that it was a place my boys could use. Although they both have rare genetic conditions which come with very complex care needs, I thought a hospice was for end of life care.

Harry is smiling as he lies on a bed at Acorns hospice and lifts his leg in the air
Harry loves playing

It was a friend of mine that made me look into it as her little girl goes to Acorns.

I remember coming to Acorns for the first time with George and actually getting a little emotional. It was just so wonderful. Everyone was welcoming and they’d made George’s bedroom so personal to him.

There was a little sign with his name on the door and it was so beautiful inside. The staff gushed over him too.

It’s these little touches that really show how Acorns is a very special place.

George lies on a bed at an Acorns hospice. He is touching pinky-purple sensory lights, which are draped over his legs
George enjoying sensory lights

Every single person at the hospice just cares so much. From the nurses, to the gardeners, to the chefs – they just want to help. You can tell that they would do anything for you and your child to bring a bit of happiness into your life.

Knowing Harry and George are having a good time when at Acorns means my husband and I can relax and enjoy our time together whilst they are being cared for. We can just be us which is amazing.

We can use that time to be a couple and take our other son on trips, just the three of us. Something as simple as a lie in and staying in our pyjamas for the day just isn’t possible without Acorns there.

For me, life before Acorns felt quite lonely. We didn’t really have anyone to talk to who understood what it’s like to bring up a child with complex needs.

By having someone from Acorns there at the end of the phone who you can call at any time and ask anything has been a lifeline. Our Family Practitioner, Sally, is always there for us and will help in any way she can.

She always tells me not to hold back – to call her and ask for help if we need it. She has stepped in many times to help when things have been hard.

She has helped bring my feelings to a better place and has made stressful situations bearable.

Some of these may sound like little things: a lie in, someone to talk to, a sign on the door. But to me and to Harry and George they are invaluable.

It’s the little things that Acorns does that you didn’t know would change your life.

More stories inside this issue…

Play, Stay, belong
The whole family
Watching the sun rise

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