‘We will never forget the eight years of Christmases we had with Ted’
Christmas will be very different for everyone this year, but for the Simmons family, they will be spending their first Christmas without their “bundle of joy”.
Amber and Arthur Simmons lost their first-born son Ted in March after he developed a flu, a fever and slipped into unconsciousness at home.
“He went into theatre [on the morning of March 2] and we said goodbye to him; we said ‘we will see you when you wake up’ and told him we loved him,” Amber said.
“We went out of the room and we just heard a bit of commotion while he was in theatre, and they came out and said that his heart had stopped.
“They did their best and, for 40 minutes, they tried to revive him, but he was just very poorly by that point and they could not bring him back.”
Amber and Arthur were denied the opportunity to say goodbye to Ted in the way that they’d planned – his life was tragically taken away within a matter of hours.
“It all happened so quickly and within 18 hours he was gone. It was an awful, awful experience,” the 29-year-old mum added.
‘If you take away the wheelchair, the tube and everything else, he was just a happy child’
When Ted was born, the couple did not notice any health problems. However, after four months they starting seeing “developmental delays”.
The youngster was diagnosed with Aicardi–Goutières syndrome (AGS), a rare brain disorder, when he was five years old, after what seemed like never-ending tests.
Arthur explained: “He was not hitting his milestones; we were expecting more interaction. He was not crawling at a certain age and did not move onto walking – he never got to do that.
“We were pushing the medical staff and said something was not right. We took him back and forth to the GP in the first few weeks of his life.”
The diagnosis meant Ted effectively had brain damage and required 24-hour care. He could not sit up, walk, or talk, and could only eat food using a jejunostomy tube that went into his intestine.
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However, despite his limitations, Ted had his own unique way of communicating with his parents, using gestures, sounds and facial expressions. The couple said he was always “happy and smiling”.
Amber, who is currently training to be a nurse, said: “He had a wheelchair, but he was really switched on and you could have a conversation with him and he would follow along.
“We were really in tune with him and we understood him so well. He was really good at telling us what he wanted with sounds or by smiling.”
Arthur added: “He had a great sense of humour and he was a joy to be around. He would love us playing jokes on people; he loved music and Disney films.
“If you took away the wheelchair, the tube and everything else, he was just a happy child.”
The couple, from Bordon in Hampshire, said they managed Ted’s condition “really well for a long time”. However, as he got older and his needs became greater, they required extra support.
They made contact with Shooting Star Children’s Hospices when Ted was two years old and employed a personal assistant approximately four years later.
Shooting Star Children’s Hospices is a leading children’s hospice charity caring for babies, children and young people with life-limiting conditions, and their families.
Although Arthur said he “felt like a bit of a failure” asking for help, the additional support alleviated any stress they had and gave them more time “to do things as a family”.
Over the last six years, Shooting Star Children’s Hospices has played a huge part in the Simmons family’s life, offering invaluable services, healthcare and support.
The family attended a weekly playgroup for children with life-limiting conditions at Christopher’s, the hospice in Guildford, as well as using the hydrotherapy pool.
Staff at the hospice, in Old Portsmouth Road, offered counselling services and respite days, allowing the family to stay in designated accommodation when needed.
Arthur, a builder, added: “We could really relax and just be parents and not have all the unofficial nursing roles that we took on. We could just be his mum and dad.”
“When you have so much responsibility and your child needs care all the time, it’s such a weight off your shoulders to know that there are people there who can help,” the 30-year-old added.
‘They went above and beyond so we could say goodbye to Ted in the way that we wanted’
The couple explained how the coronavirus pandemic has made the grieving process “extremely hard”, as they have not been able to see other family members.
“It has put us in a bubble, but we have not been able to experience real-life since Ted passed away. It’s an ongoing battle of emotions and you take one day at a time,” Amber said.
Christopher’s has a number of cold rooms – quiet spaces where children and young people may be placed after they die – allowing families to say their proper goodbyes.
Amber and Arthur had planned to be by Ted’s bedside when he died, so they wanted to recreate a homely environment and ensure he was comfortable after the post-mortem.
They brought his bedding and toys to the hospice and decorated the space to replicate his bedroom. Arthur even brought a projector to play Ted’s favourite films on the ceiling, such as Toy Story and Shrek.
The family has continued to visit the hospice, within the coronavirus guidelines, and has received bereavement support from two nurses in particular following Ted’s funeral on March 19.
Arthur said they have dealt with Ted’s death “in different ways”, but have both supported each other throughout the grieving process, with the help of the hospice.
Amber said: “The moment Ted died, they were doing everything for us and did some lovely memory things for us. They made a hand-cast and pictures.
“All the small bits that not every person who loses a child gets to have. They went above and beyond so we could say goodbye to Ted in the way that we wanted.”
In November, the hospice held a party for Ted’s birthday and, in December, the couple attended a bereavement day, placing a personalised, engraved leaf on a tree to commemorate his life.
Amber added: “We can’t express enough how much they have changed our lives. Being at the hospice, it’s not always about the sadness and about children dying, it’s about everything in between.
“They make you feel like a normal family. It’s always about happiness and memories and you almost forget why you’re there. It would have been a lot harder without them. We did not know we needed them until we had them.”
SurreyLive, Bishops Guildford and FG Barnes Nissan are proud to be working together once again to support Shooting Star Children’s Hospices this Christmas.
The campaign last year saw many generous people from across the county and surrounding areas donate hundreds of presents to the Guildford-based hospice.
The gifts were delivered to the Bishops showrooms in Guildford in December, and then they were dropped off at the local hospice closer to Christmas Day itself.
Although last year we encouraged people to buy one or two extra gifts for, this year circumstances have changed and we can’t offer this as an option.
As a result of the coronavirus pandemic, we’ve set up a JustGiving page to encourage donations to support the fantastic work carried out at the hospice.
Sam Jennings, marketing manager from FG Barnes, said: “As a group, we’ve been blown away by the success this campaign has already had.
“Having raised over £1,000 in the first couple of weeks is brilliant and above our wildest expectations. We’d like to say a huge thanks to those who have donated.”
Giovanni Barbato, account director from Reach PLC, added: “After such a difficult year I’m extremely proud and honoured that the generosity of the public has helped us exceed the figure which we originally set.
“We now have just over one week to go and we have already had to increase the target three times, which is truly amazing.
“So, on behalf of everyone at the Surrey Advertiser and SurreyLive, I would like to personally thank everyone and I urge you all to keep donating for this amazing charity.”
How can you get involved?
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