Lennon stayed at Nascot Lawn last weekend. It was a well needed break for me and Ian, but also for our daughters and for Lennon.
Lennon loves his little holidays at Nascot Lawn – most of all because he hates me being in his face all the time! We had been together from him arriving home from school on Friday night until I dropped him off at Nascot on the following Friday afternoon. And he doesn’t even get a break from me in the night as I am up every other hour attending to his medical needs. He can’t go his room to get away from me like his sisters do, he can’t go out to play with friends or spend a day at his grandparents. He couldn’t even go to his school summer play-scheme without me.
On the 45 minute journey there, about 5 minutes from Nascot Lawn, Lennon realises where he is going and he gets super excited! Lots of arm flapping.
When we get inside the staff greet him like a king, and his beaming smile says it all.
These girls know my son so well. They are the only people other than me that bath him, change his jejunostomy dressing and his ileostomy bag. They can tell when his blood sugars will drop and they don’t panic when his stomach drains bright green bile.
Lennon doesn’t talk or sign. But the staff know when he is in pain, when he is tired, when he wants to go out for a walk or play in the sensory room.
Lennon has lived such a restricted life compared to other children. He doesn’t have much for himself, and his overnight stays at Nascot Lawn are his only independence away from his family – Why should Lennon loose all of this?? If he could talk he would be devastated. And I know that he would want me to fight to Save Nascot Lawn, for him, and for his friends ❤️