Fergus is 15 and was born with Micrencephally – a condition which means his head is smaller than it should be and his brain has not developed properly.
Fergus is wheelchair bound, unable to move, walk and talk. He is gastrostomy fed and has delayed global development, all of which means he requires 24-hour care. Fergus’ spine is also curved from scoliosis, he attends a Local Authority Special School.
We live in a very rural location and so we struggle to find carers who can help me in the morning before Fergus goes to school and in the evenings when he returns. It is a constant juggling act, attending up to 130 appointments each year. As well as being Mum to Fergus I am also mum to 17-year-old twins who are studying for their A-levels.
We were told in the early years that Fergus wouldn’t make his teenage years. He brings us so much joy every day, but he also brings us much heartache and of course so much worry. Fergus has a huge smile and very infectious giggle, he has recently started a new school and his class teacher said, “he lights up the room with his happy personality”. He loves being amongst people and enjoys being out and about especially walking with our two playful dogs!
Fergus has to be hoisted at all times which is a two-person job. This became even harder at the end of 2019 after a major eight-hour back operation to correct his spinal curve. Fergus spent five days in a high dependency unit with another two weeks on the ward, luckily he has come through this very stressful time and is happier than he was before.
I spend a great deal of my time trying to join up Fergus’ care between medical, social and educational professionals and trying to make professionals understand how important this is to meet Fergus’ needs. This admin takes up a great deal of my time, over and beyond my caring duty and trying to earn a living.
Life can be extremely difficult. We are very tired, exhausted but sadly in our area there is no provision for overnight respite care.
In an ideal world, it would be great to have a facility nearby for Fergus to go at weekends, this would allow me to have a break, but more importantly for the twins, we could go away for the weekend and they could have a ‘normal’ teenage life for a couple of days.
We all understand that Fergus’ happiness is really important to us; we also understand that every day, week, month is a bonus and that one day this might change, but while we can we make the most of the joy he brings to us and appreciate how he has changed all of our lives for the better.