Caring for a child with complex health needs can be hard work. Your whole life is taken over. With Freddie I have done the same routine everyday for a very long time & that can become very tiring & draining. I rarely leave the house & when I do I spend the whole time panicking that I can’t take too long as I have to get Freddie back for his milk or meds or get him back for a nap. Even on the rare occasion that I leave the house without him I never stop thinking about him. Hes on my mind 24/7. I can just about cope with the hard work needed to raise Freddie but the older he gets the more & more isolated I am beginning to feel.
I feel like i need somewhere to be able to take Freddie. Somewhere designed to cater for the needs of children like Freddie. Somewhere we will be welcomed & can relax. Somewhere that Evie can come too and we can enjoy as a family. Somewhere that gives both Evie & Freddie a chance to socialise with other people in a similar situation. Somewhere that has toys that will interest Freddie. Just somewhere for us to be ‘normal’ in a unique little world.
I’m thinking of a place with lots of sensory lights, a ball pit, some mirrors, some nice music playing, lots of places to explore, a cot for Freddie to sleep in if he gets tired, somewhere to leave our pushchair & equipment while we play, a highchair that caters for Freddies body, a nice comfy chair for me to sit in & relax while i watch Evie & Freddie play & maybe even a swimming pool to do some physio in. Only problem is I can’t find this place & without somewhere like this my family is going to begin to feel more & more isolated from the world. We will spend more & more time in the home staring at the same 4 walls feeling more & more stuck in a world where we don’t quite fit as a family.
Part of me wants to build this fab place for children who can’t go to a normal soft play area or to the local park. A place where the library isn’t quite right for them or the local swimming pool may be a bit too noisy. Then the other part remembers i have no money for such a thing! Maybe if i win the lottery one day!
But until we find somewhere suitable for a complex little boy like Freddie the only family days out we will be going on will be to the hospital for one of Freddies appointments. Fingers crossed we find somewhere soon!