Oliver who is now 18 has been coming to Andy’s Children Services since he was 7. We first found out he had Cortical Dysplasia at 5 years old, which is a form of epilepsy that causes Oliver to have developmental issues, seizures, epilepsies and have a mental functioning of an 18 month year old. It took us a while to find out what condition Oliver had because he was hitting some developmental milestones but not all and had been having unknown spasms and seizures since he was born. It was really difficult for us as Oliver was growing up because he had already been in ICU twice before getting his real diagnosis and only at this point we realised how bad the condition was going to affect him.
Oliver doesn’t look like your typical hospice care patient but actually his condition is life-limiting and as parents we weren’t ready to accept that. The first time we came to visit the hospice, we came as a family with Oliver’s younger brother and sister. When we walked through the doors there was this sense of calm and such homely feeling. It’s such a strange feeling because there is that feeling where you think people come here to die but for us it is such a happy loving place now as Oliver loves coming here and we know the staff love having him as well. I’ve never felt apprehensive once leaving Oliver there. The hospice has always come out of its way to accommodate Oliver and to make Oliver and us feel welcome and I can’t fault them for that really.
Andy’s offered us support when we needed it the most. It’s really difficult because when you have a child, you never really expect to have a child who is so sick and so disabled that they need to be reliant on someone else for everything, but coming to Andy’s helped us. It has given me and my other children some time to spend together and it gives me the chance to be their mum as well. That time we have together it is something we love and without the hospice we cannot do that. You do feel guilty for excluding them as you think you should be doing these things as a family, but as time goes on you think actually Oliver’s not missing out because he is at the hospice, well cared for, loved and doing stuff he enjoys and he gets that 1-1 care and if anything medically went wrong I know the hospice can look after him. It gives me the chance to refresh and get ready to start caring for Oliver for when he comes home.
The sensory room is Oliver’s favourite. He loves the bright colours, loud noises and anything that grabs his attention. However, he does struggle with arts and crafts as he usually wants to eat anything and everything! On a day to day basis Oliver has restricted mobility so the pool at the hospice is something he really enjoys as it gives him a sense of freedom in the water and this has been nice for him to use while the children’s unit is getting refurbished.
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