It was a cold morning. A small crowd was gathering outside our doctor’s emergency surgery but none of us knew what time the clinic would open as the website stated: .. “there will be changes on bank holidays.” However, there was no update informing us of the changed clinic times for today a bank holiday Monday.

Tessie was there and we started talking. She came early and knew what she needed; she hadn’t been back to work for about 5 months but  hoped to return soon as a ‘special needs’ assistant in a local primary school. I told her how much I valued her work and the great support she and her colleagues give to children with learning and developmental challenges. She said her husband had already gone back to work – indeed he returned soon after the event as he found that helped him most; as a hospital porter he feels greatly appreciated by the staff and patients there. So, we chatted a bit about work that is visible as contrasted with work that is more or less  invisible and how this plays out for the workers themselves. Tessie said her work is still poorly understood  despite the increasing need for more and more special needs assistants (SNAs).

I wondered what was “the event” she was referring to?

 She then mentioned having a daughter doing her leaving certificate and how proud she is after all she’s been through; her  younger girl will be taking her exams next year. She mentioned supporting their efforts whatever their results given all they have suffered  having lost their much-loved brother aged 20 so recently.

I asked myself if this were a death by suicide, a drug overdose, or an accident but before I could guess any further Tessie talked of SADS – sudden adult death syndrome. She had never heard of it before it happened to her only son and first-born child. She is shocked and grieving. She was  relieved that I knew of this condition, or syndrome, as she believes many people don’t and assume things that are not true. That hurts her even more. She mentioned again how important  it was for her  that I knew this name – SADS – and how helpful our conversation was.

She then said to me: ..“what would you call ME? “   I wondered what she meant but she quickly explained saying:..” if my husband died I’d be a widow, if my parent died I’d be an orphan but what am I called as the mother of a child who has died? There is no name for me.“ I agreed that we didn’t have a word for this in English. I reminded her that she is still Shane’s mother and how in Swahili she would be known as “Mama Shane” as he is her first-born though now dead. She thought for a moment and then said: “I like that; I am Shane’s mother, that is enough.”

There is a name. Names matter.