A child with ME forces you to reconsider all aspects of life.
My daughter is a teenager and is stuck at age 14 ( now 18). Others have moved on with exams, learning to drive, first holidays without mum and dad, prom , college and uni: we cannot access education.
Finding beauty in small things, celebrating achievements, no matter how small or fleeting ; reconciling yourselves to a different pace if life, different goals. All are necessary and yet difficult. There is grief and anger in adjustment and these must be accommodated too.
Humour is both a crutch and a two fingered salute to life. Life is guarded: medical knowledge is lacking, treatment options virtually non existent here. A woman who reads and questions things does not always go down well. You have to determine where the line in the sand has been drawn and then seek to move the molecules gently until things move forward and ground is gained.
Salty tears on the middle of the night when sleep won't come, pain is constant and the hugs of childhood have lost their healing quality and instead envelope in a warm blanket of solidarity. You have to refocus, regroup and move on.
The hardest aspect is simply the lack of general knowledge and the assumptions of I'll informed opinion that hang menacingly in the air.
If my child had had cancer we would have specialists, a care pathway with validated treatments and empathy. Trying to explain why this should be is the hardest thing of all.
