Guest post from Rahna (above right), a befriender at Scope’s new Face 2 Face service in Redbridge and Waltham Forest, London. Befrienders offer emotional support to parents of disabled children – and they all have disabled children of their own.
Rahna’s daughter Husna, 15, has a rare progressive condition called Friedrich’s ataxia.
My daughter Husna was four years old when she began to display the symptoms of Friedrich’s ataxia and Asperger’s syndrome, and we finally received a diagnosis when she was eight.
Friedrich’s ataxia is a rare inherited disorder that causes progressive damage to the nervous system. We were told that Husna would gradually lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak.
There was nothing we or anyone else could do. For a parent, there is nothing worse you can hear.
How I felt
My world had fallen apart. I was dealing with my own emotions and everyone else’s. Every day was a struggle, and normal life as I knew it no longer existed.
I remember desperately wanting to speak to another parent whose child was going through a similar experience. It wasn’t until years later, when Husna started at a special school, that I found out that any kind of support existed.
I always had a lot of support from family and friends, but I felt unable to share all my feelings with the people around me – I was seen as the strength holding everyone up.
And although everyone was being so kind and helpful, no one really understood what I was going through, because they hadn’t been there themselves.
Why I became a befriender
Parenting a child with such complex issues is mentally, physically and emotionally exhausting. The day never comes to an end – it just merges into the night which merges into the next day.
You have to cope with so much, and to be able to speak to someone who has been through similar experiences, and share your anxieties and fears with them, really helps you feel less alone.
I first heard about Face 2 Face when I was approached by Andrea, the coordinator, at my daughter’s parents evening. Immediately I knew it was definitely something I wanted to do.
The training has been almost like being at a support group – everyone felt relaxed and we were able to express ourselves and talk about our personal experiences, knowing we were all in the same boat.
I would have benefitted tremendously from a service like Face 2 Face if it had been available when Husna was younger. There were times when I was feeling very low emotionally, and really needed to speak to someone who understood.
If befriending means I can help and support even one parent through such an emotionally difficult time, then it will be worth it.
We’re launching four new Face 2 Face services in London this summer, and there are more across the country. Find a service near you.