Ava on the trampoline with her mum

Ava’s story

12 year old Ava lives with her big brother George, Mum Liz and Dad, Danny. Ava and her family have been visiting Little Havens Hospice for respite breaks since the beginning of 2010.

Ava has severe brain damage because of a life-threatening infection which caused excessive fluid on her brain when she was born. Her condition means she requires 24-hour care.  She is completely blind, has epilepsy and cannot sit or stand by herself.  At Little Havens, Ava enjoys messy play, music therapy and relaxing in the multi-sensory room and the break usually gives the family a chance to spend quality time together.

Since the Coronavirus outbreak, Ava has been shielding with her family at their home near Chelmsford. All face to face respite visits and social groups at Little Havens had been suspended, although garden visits are now opening up again.

Liz, Ava’s mum said, “We knew lockdown was coming in early March. I’d been watching the news obsessively because I knew what this would mean for our family and my anxieties around keeping Ava safe were rising. We had actually started our own lockdown a few weeks prior to the official announcements. We were used to having to shield Ava regularly anyway and I wasn’t as concerned as others about the possibility of weeks at home, as it’s our normal, but as the headlines changed and the seriousness of the threat increased, the sense of responsibility became suffocating.

“We had to say goodbye to all our support services once official lockdown was announced. Our carer is like a family member and we were heartbroken when we had to say our goodbyes, not knowing when we might see her again.

“The weeks that followed brought a strange sense of calm. We had been living this lockdown reality for so long, that it almost felt normal to us, as we watched those around us struggling with the restrictions and limitations, life just ticked along normally for us.

“In fact lockdown brought many gifts as we had this whole new world of online services to support us. Services that everyone else can access any time, in their normal lives, suddenly became accessible to Ava, as everything started appearing online via Zoom (like the Little Havens Online Music Therapy) and Facebook Live so after 12 years of isolation and exclusion, Ava experienced full inclusion and equality for the first time in her life!

“The problems came when we started to see the world getting back to normal. We were still shielding, we knew at some point we would have to navigate our way back to some sort of normal, but the mere thought of this terrified me to my core. We had spent weeks reading the headlines of the thousands of vulnerable and healthy people who had tragically lost their lives to Covid.

“We had been told to shield because it was felt Ava wouldn’t survive if she were to catch it, but at some point we would be expected to open our doors to the outside world again. Ten weeks in and we had to allow care back into our home. The 24/7 regime of caring for a child with complex health needs was taking its toll. We were exhausted, starting to become confused and forgetful and this wasn’t safe. Rachel – our carer – has always been a family member. We knew she would do all she could to keep Ava safe when she returned to work and we had all the necessary PPE to enable us to do this with minimal risk, but it still felt like I was opening my front door, to a raging fire on the other side!

“I felt guilty, I felt like I was letting Ava down and putting her at risk and that I should have somehow manage a few more weeks of providing 24/7 care to ensure her safety. I was becoming increasingly fearful, as to how we would ever start to even think about taking Ava out in public again. This invisible risk took my breath away and I didn’t see how I was ever going to feel ready.

“When you’ve seen your child’s life hanging in the balance, when you live with the daily fear that you’ll one day lose them, it’s impossible to not feel completely overwhelmed by the risks that Covid poses. As we watched others return to normal, I just felt engulfed with panic, fear and anxiety, far more than I’d experienced at the start of lockdown! Keeping her safe at home felt easy, returning to normal life felt impossible.

“It was then that Little Havens offered us the use of their garden. This felt so utterly perfect. We could finally leave our house and go somewhere different, somewhere that had fabulous facilities, but that felt completely safe! We had exclusive use of the garden and Ava certainly made the most of it. She was delighted just to be out in the car but when we arrived at the hospice, we both felt so excited to be doing something that just felt so familiar and normal but more importantly safe.

“I had no fear about risk and it was just so wonderful to see all the familiar faces at a safe distance. Ava giggled and squealed on the roundabout and wheelchair swing and belly laughed as I bounced her up and down on the trampoline. It was lovely for me too, to just have some time to chat with the staff and offload all our Covid worries!

“Just having the time to talk to someone outside of the home really helped. We had the most incredible Little Havens picnic (no one does a buffet quite like Little Havens) and it all just felt so normal! Having the time in the garden has really helped build up my confidence. It was a perfect bridge between full shielding in lockdown and starting to try to safely transition back to a new normal.

“Once we had actually done it, we had left the safety of home, it didn’t feel quite so scary anymore. It’s given me a much needed boost of confidence and I don’t feel terrified anymore. We are going again this week and it’s really helping me get my head around returning to our normal lives again. The visits are helping me feel brave and I know we will be able to start to get out and about again soon when official shielding ends.”

To find out more about how you or someone you know would benefit from the care at Little Havens, please click here.

If you would like to donate to Little Havens please click here.

Published in 2020

It was then that Little Havens offered us the use of their garden. This felt so utterly perfect. We could finally leave our house and go somewhere different, somewhere that had fabulous facilities, but that felt completely safe!

Liz, Ava's Mum