We have a psychologist involved too who has helped us create a 'communication passport' which has gone into his medical notes. He has a playlist on his phone that he either listens to on headphones or they can play on speakers during treatments and tests. They have been wonderful at accommodating him. Appointments can take twice as long as most other peoples but everyone is so laid back. He swears at the nurses sometimes but they say they are all thick skinned.
I don't think there is even a word for how tired I am. I am a worried and lost mum who battled for 2 years to get doctors to see if there was something more serious going on with my darling son's chronic illness. Medical professionals were convinced his sustained illness was the lingering effects of Glandular Fever, but something kept nagging me that it was something more. There is a saying, a worried mum does better research than the FBI.
I don't want it to be this but here we are and we will battle to the bitter end and kick cancer's butt. Ryan and I live away from home during the week for treatment while my hubby works, looks after the house, dogs and our eldest son. Being a split family is so hard it hurts, but we will make it work. We have to make it work. We have to win.