Celebrating Craig We hope that you will join us this month in celebrating Craig. Craig is Jackie’s son, and he’s just turned 35. Getting to 35 is a real milestone for Craig and the family. Younger years Craig was born in 1986, he was a restless baby and wouldn’t eat, and Jackie worried a lot, her maternal instincts were telling her something wasn’t right, but the local doctors weren’t able to diagnose anything. When Craig was 9 months old he was placed under the care of an orthopaedic surgeon to look at correcting the position of his right foot which turned in. The first meeting with the orthopaedic surgeon turned into Jackie’s worst nightmare. When discussing the options the surgeon just casually dropped into the conversation that Craig had cerebral palsy and that because of his condition and his lack of progress they could correct the foot but it was unlikely that he would be able to walk and the foot was likely to turn back in again. This was the first time that Jackie had heard anyone mention Craig having cerebral palsy. Jackie was just left to walk out of that meeting without any support having no idea how she was going to go home and tell her husband, Craig’s dad, Bob, who had been working that day and not able to attend the appointment. Craig is Jackie and Bob’s first child and they were devastated, had no idea what to expect, and no support in place. Craig has had many health issues over the years culminating with contracting MRSA when he had an operation on his spine to correct a curvature. At this point the deterioration in his health was quite rapid leading to a second surgery to remove the rods they had put in as the infection would not clear. During this operation Craig’s spinal cord was damaged with devastating consequences. He left hospital on his 13th birthday, days after this second surgery. On leaving the hospital Jackie and Bob were told that it was unlikely that Craig would ever reach 20 due to his underlying health conditions. "We’ll see about that", was Jackie’s response. Education, independence and passions Craig went to Newfield School until he was 18, and then Beaumont College, in Lancaster until he was 21. He started receiving a package of support from Children’s Services at 15, the care was paid as a Direct Payment, which allowed them to employ two amazing Personal Assistants, Liza and Warren, who’ve been with the family now for years. This has allowed Craig and the family to do more things and it’s given Jackie the space to work. Last year at the beginning of lockdown the personal budgets were transferred to a health budget under NHS Continuing Health Care. Craig's favourite thing to do is to go on holiday to Disneyland Paris and the family go at least once a year. At the start of lockdown in 2020 Jackie, Bob and Craig were due to go for a two week holiday to Disneyland but lockdown meant that this couldn't happen. Lockdown has been a really difficult time for Craig, no holiday and not seeing any of his friends at Stansfeld Day Centre. Craig is a very sociable person, so the last 12 months have been difficult for him but he has coped remarkably well as he has been shielding the whole time so not able to see anyone outside his care bubble. Craig has lots of interests that his family and PAs help him to access. Craig loves shopping and crafting. He particularly loves people watching, which plays to his sociable spirit. Craig has no verbal communication, but don’t let this make you think he doesn’t want to talk! He loves meeting people, and when he’s out he loves nothing more than when people stop to speak to him. Jackie explains that she understands that some people find it difficult to interact with him, but she says There’s nothing to be nervous about, Craig’s always been really sociable, she laughs, he’s also pretty popular with the ladies at the day centre. Lockdown and family time Jackie and the family were shielding for most of the year, and initially, it was a really nerve-wracking and anxious time, but they quickly got used to the new lifestyle and have managed to see a lot of positives that have come from the experience. "We’ve spent a lot more time than usual together, we’ve eaten together more, and I’m able to pop up to see him while I work, and we’ve done loads of art and crafting and we’re currently having a sunflower growing competition." Getting to the right side of lockdown now, and with his second vaccine planned for this month, as well as getting to 35 is cause for a real celebration. As well as being a mum to Craig, Jackie is working full time for Care Network on a big piece of work on behalf of the Local Government Association to map services and improve access for all. On asking Jackie how she’s coped with juggling work and caring, she says "you just accept it and carry on, and you do what you’ve gotta do", however, we recognise that juggling so much takes will, tenacity, determination and strength - all powered by a lot of love. We hope you’ll join us in celebrating Craig, Jackie and the family. We wish him and the family an absolutely wonderful 35th year together. Craig has an overriding will to live. We will celebrate his life and be very happy Photos from top: Craig in Southport on a day-trip; Craig with his younger brothers Lee and Mark; Craig with Anne, his key worker at Beaumont College, taken on the day Craig finished college; Craig, Jackie and Bob dressed up on Halloween 2020 during lockdown, a favourite pastime; and Craig at Disneyland Paris.