A mother’s story for Mother’s Day
Published: March 12, 2015
Seven-year-old Safa Haque was just one when doctors discovered that she had Rett syndrome, a rare condition that affects the development of the brain. For her mother Shahanaz, a hard-working single parent from Tower Hamlets, it was the start of a whole new life. As Mother’s Day approaches, she tells her story as a mother of a child with a life-limiting condition…
The early days
I already had three children when Safa was born and pretty much thought I had motherhood sussed out, but all that changed when she was diagnosed. Safa has no communication skills, which meant she would always be completely dependent on me for all her needs. I had to learn a whole new language without words.
It was hard for Safa’s siblings initially as well, because I was now away so much with Safa’s appointments and assessments. It took a lot of understanding on their part but its second nature to them now and they look out for their little sister.
We were referred to Richard House Children’s Hospice by a social worker soon after Safa was diagnosed. It took a long while before I felt comfortable leaving Safa at the hospice and it was really a struggle to be able to hand her over. Over time I got used to the care staff and saw how good they were and that made it easier.
These days Safa comes in for short breaks at the hospice, while my other children come along to the support group just for siblings and they really love it.
Support for mums
One thing I really look forward to is the ‘Mums4mums’ group at the hospice, a support group for mums of children whose lives are limited by their health condition.
I have good friends outside of the hospice, but it is really difficult for them to relate to my situation. With Mums4mums, everyone in the group is able to relate to each other’s difficulties and struggles. It’s a safe environment which allows you to have a good cry if you need to and there is no judging.
We have a coffee and a chat and do fun activities. I get such good expertise and advice from other members of the group around children’s health issues in the local area, and I’ve made a lot of good friends. I think I would be lost without the mums group, it’s like a medicine for me and somewhere where I can de-stress.
I’m not sure what I’ll be doing for Mother’s Day yet. One of my daughters has already done something special for me, and my other children are telling me they have a surprise! They are so excited about it. I know it will be a wonderful day whatever happens though.”