Honesty about the most disabled baby

Of course they were upset…

This is number 30 of fifty pieces of poetry and prose written by Peter Limbrick as a monument to adults and children who have lived and died or are living now in inhuman situations. They are all inspired by real experience.

 

Honesty

‘Your son is the most disabled baby I have ever

worked with.’ A chilling pronouncement for

any parent to hear from a paediatrician but

they had asked for it.

They were confused.

They remembered the early medical advice

that Taro had brain damage that would result

in very significant physical, sensory and learning

disabilities. But for twelve months now his

therapists and the teacher of deafblind infants

had been full of praise for how well Taro was

doing, how pleased they were with him.

Taro was much loved and his parents gave him

all care and attention. But they had seen almost

no progress in his development since he came

home from hospital.

They had known the paediatrician since Taro’s

difficult birth and its aftermath of crisis and

emergency. They trusted her and decided to

confront her with their confusion. She

perceived their question, ‘Just how disabled is

our baby?’ was sincere and heartfelt and, in her

wisdom, knew it was deserving of a direct,

honest and respectful answer.

Of course they were upset.

But now they knew the situation. Now they

could plan their family life accordingly, sort out

their priorities, work towards the likely future.

They would tell Taro’s professionals that their

work was valued but they did not need the

exaggerated praise, the unjustified optimism.

They would prefer honesty sensitively given.

 

The other 49 pieces can be seen here:

In Mind - a written monument to all people with intellectual disability. (Items 1 to 10)

In Mind - a written monument to all people with intellectual disability. (Items 11 to 20)

In Mind - a written monument to all people with intellectual disability. (Items 21 to 30)

In Mind - a written monument to all people with intellectual disability. (Items 31 to 40)

In Mind - a written monument to all people with intellectual disability. (Items 41 to 50)