This is a guest post. The author did not wish to be named.
A friend recently asked me
‘What is it like to parent a child with complex health needs?’
So I said I’d give her just a little insight.
I made sure that every time she had clean clothes, bedding, sofa cushions or carpets vomited formula, mucus and diarrhoea would be thrown on them.
Then I ensured that all the places she wanted to go to with her child, had steps to the main door a broken lift so she couldn’t take her child’s wheelchair inside. I made sure all the shops she wanted to visit had narrow aisles and left trolleys full of stock in the middle of them.
I made sure that the only parking space that meant she could safely get her child out of the car had someone illegally parking in it. And although they said they were only going to be 2 minutes, that was 2 hours ago.
I filled her life with 7 appointments a week and 82 so called ‘professionals’. All of whom she’d have to share her family life with. And just when she got to know them properly, and they understood her child, I seconded them to another department or sent them on maternity leave.
Then I made her start all over again with yet another new person and repeat all the information about her child’s condition again, and again.
When she frequently went to hospital and had to endure watching her child fight for every breath, screaming with the agony of seizures, I stayed away.
Refusing to visit because ‘I might catch something from the children’s ward’.
When she was in hospital watching over her child in the critical care unit I made sure I wrote a lengthy entry on Facebook about my child’s trip to A&E for a sprained ankle, and how traumatic it was. And, of course, all our mutual friends would comment with support and well wishes. Despite having stopped doing so for us long ago.
When her child was well enough to leave the hospital & enjoy a day out, but still vomiting blood and needing hourly medicines, I made her lay him on a mucky, cold concrete toilet floor to meet his toileting needs.
And then I told her that’s how life will be now, because decision makers in large businesses are able bodied and don’t realise a 36 kilo 9 year old child won’t fit on a 70cm long baby change unit with a maximum capacity of 11 kilos.
To rectify that situation, I made her send 27 emails a day pleading with large multi billion pound profit making companies. Asking them to provide a Changing Place Toilet, in the hope that maybe in a few years time they would get the message and provide a loo her child could use so they could go to places other families do. You know, like the local supermarket, cinema, zoo.
When her back was at breaking point from the constant lifting and bending I made sure people moaned to her about how hard it was to carry a 6 month old baby with standard tone and development.
And when she realised her body could no longer take the lifting, I told her she’d have to wait 12 months for a hoist. But only after she had attended 6 meetings, replied to 17 emails and had to argue her case as to why she needed one of course.
And when she was utterly broken and I had nothing else to throw at her, I told her
”I don’t know how you cope so well”