For many families, the first day of school is a milestone filled with excitement, nerves, and proud photos at the school gates. But for parents of children with life-limiting or complex medical conditions, this milestone carries a whole other weight – one that combines joy with deep anxiety, and months (if not years) of preparation behind the scenes.
We spoke to two mums we support, Emma (mum to Izzy) and Vicks (mum to Margot), about their experiences of preparing their children for school and the emotions that come with it.
Izzy’s Journey:
Izzy spent her early years in and out of hospital, undergoing dialysis before receiving a kidney transplant just before her third birthday. Socialising, walking, and talking were all delayed milestones, and by the time she was due to start school, Emma knew she wasn’t ready.
“Izzy started a year after she was supposed to. We kept her back by one year as she just wasn’t ready. I knew she wasn’t always going to be behind developmentally though; after her kidney transplant she became so much better and started meeting those milestones that she needed,” Emma explained.
Even getting Izzy into nursery was far from simple. Emma described battling nurseries that put up “barriers” and a stressful process of securing an Education, Health and Care Plan (EHCP):
“We were looking at the local nursery school for her, but they kept putting up barriers and we then had to go for an education healthcare plan. That takes a year to two years – it’s a real beast of a document. Then there was the process in delaying her starting school; you have to see psychologists and all sorts of people to get through the loopholes, but once you’ve got it, you can then get the support and funding you need.”
The EHCP proved essential for Izzy. It meant she could have one-to-one support, staff trained in tube feeding and medication, and access to therapies like physio and speech and language. Emma recalls: “By the time she reached school in 2021, it was such a relief to see the staff step up, work with the hospital teams, and make sure Izzy could join in safely.”
Still, the emotional toll remains. “Leaving her in someone else’s care for the first time was terrifying. You’re used to being the one that’s in control and doing all the cares for them. You have to let go a little bit because it’s really important for the child as well as yourself.”
Nurse Charlotte reflects, “We’ve supported Izzy and her family through some very tough times, so to see her walk through the school gates was incredibly special. We know just how much effort went on behind the scenes to make that day possible, and being able to play even a small part in her journey was a real privilege. Moments like that are why we do what we do – it’s not just about care at home, it’s about helping children like Izzy enjoy those milestones that every child deserves.”
Margot’s Milestone:
For Margot’s family, the excitement of starting school came with disbelief that the day had even arrived. Vicks shared: “I’m super happy that she’s reached this point and has this opportunity. But I’m anxious about her going to another new environment away from me. It still feels very surreal – I can’t help but feel nervous.”
Margot’s preparation was also extensive. School staff had to undergo specialist tracheostomy care training, and she now has two trained teaching assistants with her at all times. It’s a level of preparation far beyond the average “school readiness checklist” – but essential to keep her safe.
Margot’s big sister Mimi is a little sad they won’t be at the same school, since Margot needs a specialist setting, but she’s excited for her to make new friends and enjoy everything that school life has to offer. Vicks is hopeful, but realistic: “I’m not sure how much time she’ll actually spend at school with illnesses, staff turnover, and resources. But just getting to this point is incredible. We never imagined she’d even have the option to go.”
All of us at Jessie May are so proud to see Margot start school, embracing this exciting new chapter with the same courage and joy she’s shows everyday.
Nurse Lois shares, “To see this day come is incredibly heartwarming. I know it takes a lot of preparation, but it is so worth it for these special moments – milestones you’re never sure are even possible. Seeing Margot go to school for the first time is something truly precious, and I couldn’t be prouder of her.”
More than just a School Day…
Both mums reflect that what most families take for granted – dropping their child at the school gates – is, for them, a victory won through years of medical care, battles with systems, and endless preparation.
As Emma summed up: “It’s true what they say about needing a village to raise a child, but when your child has complex needs, it feels like you need a whole city. From hospital teams and therapists, to SENCOs, teaching assistants, and charities like Jessie May – it takes hundreds of people working together just to get them to the school door.”
Despite the preparation, they both show gratitude and joy in seeing their children experience milestones once thought impossible.
Vicks concludes, “Although the preparation is immense, we’re grateful that it makes it possible for our children to do the most important thing of all – simply be children.”
Advice for parents:
Vicks offered this advice for families just beginning their journey: “To parents just receiving a diagnosis, I’d urge you to try and enjoy every day with your precious babies. Your days will be filled with worry and questions and you’ll be terrified of the future, but if you can, put that to one side and enjoy the day-to-day – because before you know it, that tiny baby will be starting school.”
For Izzy and Margot, school isn’t just about phonics and playgrounds. It’s about independence, hope, and the chance to live childhood as fully as possible. Their stories remind us that behind every “first day of school” photo, there are often unseen battles, quiet bravery, and communities of support that make the milestone possible.
