‘Tragedy hit – but my decisions have never been sharper’

By

Emma Ross

Video calls became office workers’ world during the pandemic. Colleagues’ homes opened up, a suddenly much bigger window into the person behind the job title. The two lives we all juggle came together. On 8th December 2021, Emma Jones, managing director and founder of Alder Rose Mortgage Services and Whenthebanksaysno.co.uk, and her then four-month-old son Marcus, had no clue these worlds were about to smash together so violently.

“I was on a Zoom call with my team running a morning meeting and I had Marcus on his bouncer next to me,” she recalls. “I looked over to him and he was all red in the face and making a grunting noise.” “I just knew he was having a seizure although I had only seen it once in my life before,” she said, “it was awful”.

Emma calls that “the worst day of my life”, a tough pick from a crowded field in the start of a brutal journey in her young son’s health that coincided with moving house and the stresses of being an MD in the first 5 years of business. “I cannot describe to you how much I just wanted the world to swallow me up,” she says. “Selfishly I just wanted a normal baby and a normal life. I didn’t understand how the world could punish a baby this way.”

Marcus has what doctors rather too innocuously call a ‘birthmark on the brain’. Focal cortical dysplasia in technical terms, a form of structural damage on the brain which in turn adds the condition, epilepsy. In Marcus’s case this meant seizures. A lot of them. Almost continuously on some of the bad days. That was all anyone could tell Emma in those first few days.

The situation would have left any parent in bits. For a woman used to running things and being in control, the lack of any more useful information was paralysing. “I thought to myself surely as a businesswoman I had some intelligence so why did nothing that anyone told me make any sense,” she says. Emma is not someone that takes no for an answer so to be hitting walls with a lot of different professionals was hard.

“I remember the day of diagnosis being hell because I just didn’t understand what was going on,” she says of those first excruciating 48 hours. It took months for her to get her head around Marcus’s condition, while still being a business leader, a partner, a parent to her 16-year-old daughter.

Emma is no softy. Fights to be heard by hospital staff who try to brush her concerns aside have become a regular thing. She has written to MPs and “made more complaints than I can count” about times she knew Marcus was in pain or fitting and was dismissed. “I feel sorry for parents that don’t have the capacity to challenge the professionals around them because the information is not always correct,” she says.

One of the difficulties with epilepsy is the lack of control the doctors have and for many with epilepsy it is hard to plan because you never know when a seizure will strike. The aim would always be to get back to the business and keep moving forward however some days Emma would need to drop everything although she was knee deep in the business. She says: “Having to explain why I couldn’t commit to anything for a few months to get through the hospital stays was impossible without being open about Marcus’s condition. I found it easier to tell my journey than to try and make excuses.”

In low moments, though, self-recriminations creep in. “You have this feeling of blame, was it your body that did this. Is there something you could have done differently,” says Emma. She has since learned it is simply a 1 in a million chance of this happening to anyone. It just happened to be Marcus.

Small business owners know there is no real time off. In the period her life was stretched and torn by a difficult pregnancy from December 2020 to Marcus’s emergency C-section birth in July 2021, and every hospital visit in the two and a half years since, Emma has also been managing staff and clients and commitments and overheads and paperwork. There has also been a global pandemic. If this is a story about Emma’s resilience, it is also a story of how your firm can survive you having a personal life – but that’s hardest when you’re the boss.

Emma recalls: “During all of these visits to the hospital with Marcus on the return I would be back in the office to ensure the business kept going. We had started a growth journey within the business and this had become even more important since Marcus’s diagnosis.” Emma says Marcus’s illness “taught me to adapt to tough situations”. She adds: “If anything it has given me more focus than any work experience would. My decisions are sharper than ever, this is my ‘why’.”

The brand When The Bank Says No was built by Emma by the hospital bed, writing content for the site in between sleeps. Catastrophic life events in her own life informed her business. “We help those in situations where they have had a period of income changes or credit issues because they were sent off track, because it can happen to anyone,” she says, from experience.

She would sleep in the hospital next to her son on a sofa and be at her desk to work the following morning once she got home. “Some people were great and others not so great, using opportunities to take the day off or just take advantage of me not being there,” she says. It is important to put the personal to one side in business, but this is not always easy.

Some days Emma would feel like a bad mum. Others that she was neglecting her business. “The hardest thing was having a sick baby and having to be the breadwinner,” she says. “As a leader you have to leave your problems at the door.” Emma says she has hit the bottom twice over the last 12 months “but most people around me won’t know that”.

In October 2022 Marcus was ruled in as a candidate for brain surgery to relieve him of his seizures. His tiny body was on the operating table for nine hours. The stakes were extraordinarily high – he could spend the rest of his life fitting every five minutes, he could pull through post-op almost fit free, or he could die. “The only sentence I remembered hearing was that there was risk of death,” says Emma, “but as any mum does you just crack on with it”.

The hospital had been concerned about offering last minute surgery because of Emma’s work commitments. But she asked them to ignore that. She says: “My main job is as a mum, this will always come first.” What she didn’t know was that the call would have come just as Liz Truss’s budget was announced. She was given four days’ notice, and left the team in the midst of it. “Rates were being pulled and it was chaos, but the decision was not difficult,” she says.

Marcus is now 18 months old.  A recent check-up over Christmas at Alder Hey Children’s Hospital has given a diagnosis of focal cortical dysplasia 2A. This means he will struggle to keep the seizures away and the developmental issues may never go away. Emma says: “We have a choice – let these illnesses just take hold of our children and our lives, or make the illness something we just carry as life luggage without letting it make decisions for us. I have chosen the latter”.  Although it’s hard, Emma says the future is brighter than it was 12 months ago.

Emma has been through it all but is tough. “It was the hardest two years trying to build a business with all this going on but I can honestly say my focus as a business leader has never been more single minded. I also have a plan for my son’s future and what support for Marcus looks like.”

The family enjoy Marcus as much as they can. “He is such a character and a comedian in the making,” says Emma, “he has a better sense of humour than a lot of people I know, and his resilience being so small is nuts”. In the spaces in between hospital visits, the family live a simple life. Flying away on holiday is out because of the ever-present fear of seizures. He can go weeks without any fits, and then have two weeks where it is nonstop. Sometimes 20 seizures a day.

The hardest part? “Adapting to your new life when these things happen so suddenly,” says Emma. She has learned that “no matter what you plan or forecast your health can completely wipe those plans out”. Despite it all, Emma is philosophical: “People say to stay positive though that’s hard when all you are experiencing is bad. But as a mum you have to carry on, put on your big girl pants and deal with it”.

Google NewsFOLLOW ON GOOGLE NEWS