Vicky Whyte, from Northern Ireland, is sharing her story to mark Children’s Hospice Week, as a new survey by charity Together For Short Lives reveals that one in three people would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting or life-threatening condition.
Whyte’s daughter Leah was diagnosed with a rare form of bone marrow failure in April 2013 when she was 15 years old, she died less than a year later in the N.I. Children’s Hospice on 16 January 2014.
“I felt as if I was on a runaway train hurtling towards a very unwanted destination,” Whyte wrote in a blog post.
“I desperately needed to know that people cared and that we weren’t alone on this journey.”
Whyte found that the ways in which her friends responded to her daughter’s diagnosis were varied, but there were certain things she personally found to be helpful:
Say Something - Almost Anything Is Better Than Nothing
“I appreciated it when people approached me and said things like ‘I’ve heard about Leah’s illness, I’m really sorry, this must be so difficult for all of you’,” Whyte explained.
“What wasn’t helpful was when people didn’t speak to us at all, or conversed with us without mentioning Leah’s illness.
“When someone did not find a way to show us that they cared, we assumed that they didn’t care, although in retrospect I realise this may not have been true.”
Offer Practical Support
Whyte said she appreciated it when friends offered to look after her other three children; brought the family groceries or home cooked meals; drove them to hospital appointments or fundraised to help cover the family’s expenses as Whyte and her husband had to give up work to care for Leah.
“One friend put together a hospital ‘goodie bag’ for me that contained miniatures of things like baby wipes, tissues, boiled sweets, lip balm, hand cream and cereal bars,” Whyte added.
“A kind friend went to the Disney Store and bought Leah a very pretty pair of pyjamas that became her absolute favourite. Other useful gifts included Amazon vouchers, Netflix and Spotify subscriptions.”
Whyte said she was encouraged when she received greeting cards, texts, emails and Facebook messages (with no expectation of a response) or even just when someone “hit the response button on one of our Facebook updates”.
“Leah and I spent months in isolation and these messages penetrated our sense of aloneness and helped us to face each day knowing that others cared and were praying for us or thinking about us,” she explained.
The Smallest Of Gestures Is Enough
“Sometimes a silent hug or a gentle squeeze of my hand told me what I needed to know - that somebody cared,” Whyte said.
Whyte added that the support she, Leah and the rest of their family received at the N.I. Children’s Hospice made a huge difference at such a difficult time.
There are at least 49,000 children and young people in the UK living with a condition which means they may not reach adulthood, according to Together For Short Lives.