Est. read time: 5-6 minutes.
The date of 29th May 2022 should have been a momentous, celebratory occasion for Carol and Alan Barber. Daughter Rebekah, or Becca, would have turned 16 and marked the big day with her parents and siblings, Sarah, 27, Louise, 25, Robin, 22, Katie, 20, and Charley, 17.
Instead, it was destined to be a thought-provoking, poignant day of reflection as Becca died in July 2016, just after her tenth birthday. She had a rare, gene-linked brain malformation called Lissencephaly and received care at the East Anglia’s Children’s Hospices (EACH) base in Milton.
“The milestones come and go and get easier as the years go by,” said Carol, who lives in Peterborough and was speaking during Children’s Hospice Week – a national week of awareness that runs until Sunday from 20th to 26th June 2022. “However, there’s always another brick wall looming and this special birthday was an especially hard and poignant one for us all.”
Becca was almost a year old when Carol, 52, and Alan, 55, received the news their daughter had Lissencephaly. Their world fell apart. Life became full of hospital appointments, therapy sessions and medication management and Carol says it was “an answer to a prayer” to be offered a visit to Milton.
“It was huge for us,” she said. “Like many people, it’s not somewhere you know much about until you find yourself in the midst of it all. Going there for the first time was a massive step to take. You’re effectively asking for help from complete strangers you’ve never met before.
“However, the journey we embarked on with those people was amazing. They were so gentle and allowed us to navigate things at our own pace. To be able to go to the hospice and know Becca was being cared for by people who understood her medical needs made such a difference to myself and Alan. It gave us a welcome break and a chance to relax and catch up on sleep. The kids could go and play in the gardens, get the art and crafts bits out and spend time with other people their own age.
“They, like us, also had such great support from the care team at Milton. People went into their schools and had conversations with them, answering their questions. Then there were the sibling events, which made such a difference. In fact, I’d describe it as a game-changer – such a bonus and a real corner-turner.
“Suddenly, rather than constantly missing out, they were doing something special, that they loved, because of Becca. They got to spend time with other children in a similar situation, who had been or were going through the same thing. My daughters are still in contact with people they met at those sessions. They built friendships that continue to this day.”
On that note, Carol says she will forever be grateful for the support her children received, both at the time and as they got older.
“It helped them create the best, most positive memories,” she said. “That sounds odd and ironic, given what was going on around them. At face value, a children’s hospice is the last place anyone would want to find themselves. However, it really meant the world to my children and they loved spending time with the play therapists. The very first thing they looked for on the calendar was the Christmas party. It was something for them and not just about Becca.
“I wouldn’t wish what happened to our family on anyone. They missed out on lots of things in their childhood and I can’t change that now. That’s how our life was at that time. However, for them to have that sibling support made the world of difference. It gave them something to be happy and excited about, mixing with other children who had siblings with complex and life-limiting conditions.
“It also gave them a space to share their concerns and worries, in an environment that was safe and understanding. For the first time, they were being allowed to take part in something fun because their sister was ill or in hospital, rather than having to miss out.”
Carol and Alan received “emotional, physical and mental support” after Becca died in 2016. They benefitted from bereavement counselling, attended parents’ groups and memory-making days at Milton. Carol says it made such a difference and why she is always so keen to champion EACH.
“I didn’t want Becca’s life to mean nothing,” she said. “That’s why I’ve always been willing to speak openly about the support we received from EACH. As a family, we learned so much and want to give something back.
“If I can say anything that helps someone else going through a similar situation then I’m happy. We always knew someone was on the other end of the phone, if we needed advice or support. I’ve got great friends and am part of a lovely church community.
“However, there are times when you need to speak with people at the hospice, be it staff or parents going through similar things. People who walked those tough days by your side. It means you can be real, asking questions that no-one else would understand or know the answers to.
“I remember one particular day not long after Becca died. I busied myself and got through it, putting some washing out and generally busying myself. Then at the end the emotion hit me like a tidal wave. I was horrified with myself for not grieving and being upset throughout the day.
“I felt like an awful person but one of the counsellors was able to reassure me it was OK. They said grief is a very individual process and there’s no rulebook. You have to learn to go with the flow.
“That support has made such a difference, allowing us to slowly work through this process in terms of the whys, wherefores and what happens next. I can’t imagine going through it without EACH.”
The theme for this week is #ForTheChildren – showing how important each individual child is to the expert care children’s hospices provide.
* Tenacious teenager Marcus Amps-Woodward has signed up for a gruelling walking challenge in memory of best friend Becca. The 15-year-old is taking part in EACH’s Cromer to Great Yarmouth Pier to Pier trek, in June.
The fundraiser takes participants on a 32-mile walk along the beautiful Norfolk Coastal Path.
To sponsor Marcus click here.
