“I don’t know where we would be without Claire House.”
Maureen loves spending time with her son Robinson, 13, but his condition means he needs round the clock care, and that is where Claire House Children’s Hospice has become the family’s lifeline.
Always watching my face, my lovely boy Robinson is a real people person. He is such a joy and this isn’t just to his family.
But looking after a disabled child is hard. People think you get more support than you do – whether that is care-wise or financially.
Robinson is thirteen. As he gets older, I need more support and sadly there is no one else in the family able to help me care for him. That is why Claire House Children’s Hospice has become that lifeline for us.
My pregnancy with Robinson was great and we didn’t know there was anything wrong while I was pregnant.
The day after he was born, the midwife noticed him having a seizure and he was whisked away to special care. When he was a week old, I was able to bring my boy home but a seizure the following day took us back to hospital.
Robinson was diagnosed with cortical dysplasia, which occurs when the top layer of the brain does not form properly.
While his seizures didn’t stop, he could go a week or two without one.
I was fortunate to see my boy progress, to see him crawl and pull himself up and stand. But when he was a couple of years old, he experienced a prolonged seizure which caused him to sadly regress and wipe away a lot of his skills. But that hasn’t stopped him from bringing joy to our lives.
I knew he needed the right environment, not just medically especially now he has a seizure every day, but he also needed to be around people who care. That is when I turned to Claire House after the school nurse recommended them.
On his first stay, I was a little nervous. It is daunting handing over your child who is the most precious thing. But by allowing me and Robinson’s sisters, Esme and Olivia, to stay, it enabled me to see how well he was looked after.
The care team were great and put me at ease and wouldn’t let me do anything. After that, I knew he was in good hands and I didn’t need to stay.
When he is at Claire House, I know that Robinson is thriving. He loves to be around happy, friendly and smiley people and there are plenty of those at the hospice, which helps to put him at ease. While I love to see the booklets of what he has been doing, especially from his time in the Art Room.
Robinson knows the people and faces; he is so interested in people. He is not particularly fond of toys, but if you are talking to him or reading him a story, and you show him pictures, he will just look at you.
Without the support of Claire House, I wouldn’t have been able to see my dad for the past two years. He lives in Spain and sadly has Parkinson’s and so isn’t able to travel anymore. But because of the hospice, I have been able to take the girls to go see him, all while knowing Robinson is in the best care.
Claire House has not only provided the care support for Robinson, they have also been there for his sisters.
His little sister Esme absolutely loves the sibling events. Not only has she enjoyed taking part in the Easter Egg Hunts or going to the cinema, but it has helped her with meeting other children with disabled siblings.
For me, it adds another level of reassurance as I know that Claire House will be there for our entire family, today and in the future. I honestly don’t know where we would be without them.
But we know that Claire House urgently need more funding and they can only do so much as the demand grows, so I do encourage people to support the charity if they possibly can.