Beyond the diagnosis
A SEN mum sharing our journey through rare chromosome abnormalities, milestones, challenges and joy.
Welcome to our little corner of the internet.
I’m Chloe, mum to an incredible six-year-old girl who has taught me more about courage, resilience and unconditional love than I ever thought possible.
This blog is where I share our story, celebrate every achievement, raise awareness of rare chromosome conditions, and connect with other families walking a similar path.
There will be good days, difficult days, milestones, memories, and honest reflections on life as a SEN family.
Thank you for joining us on our journey.
Chloe x
My Latest Posts
- Three years fighting for an education💜One of the biggest battles we’ve faced hasn’t been Isla’s diagnosis. It’s been getting her the education she deserves. For three years, we’ve fought to find a school that could meet Isla’s needs. Three years of meetings, assessments, paperwork, phone calls, emails and waiting. As a parent, it’s heartbreaking knowing your child deserves to learn,Continue reading “Three years fighting for an education💜”
- The mum behind the blog 💜When people read our story, they usually read about Isla. They read about diagnoses, appointments, milestones and challenges. But behind every story like hers is a parent trying to navigate a world they never expected to be part of. Before Isla was born, I imagined motherhood much like everyone else does. I pictured school runs,Continue reading “The mum behind the blog 💜”
- The questions I wish people would ask 💜When people meet Isla, they often have questions. Some ask about her diagnosis. Some ask about appointments. Some ask what she can and can’t do. And that’s okay. But if I’m honest, there are other questions I wish people would ask too. I wish people would ask what makes her laugh. I wish they wouldContinue reading “The questions I wish people would ask 💜”
- The milestones nobody sees💜When people think of childhood milestones, they often think of first steps, riding a bike, learning to swim or starting dance classes. For children like Isla, milestones can look very different. Sometimes our celebrations are for things other families might never think twice about. Holding a spoon independently. Taking a few extra steps. Trying aContinue reading “The milestones nobody sees💜”
- The childhood we never expected 💜When I imagined becoming a mum, I pictured dance classes, birthday parties, after-school clubs and all the things many parents take for granted. Life with Isla has looked very different. Recently we spent some time away at a caravan, making memories as a family. Watching the other children running around, joining in activities and makingContinue reading “The childhood we never expected 💜”
- Adapting our adventures 💜This week we spent some time away at a caravan, making memories as a family and enjoying a change of scenery.Family holidays are something many people look forward to, but when you have a child with additional needs, they can look very different.I’ve learnt over the years that we don’t just pack clothes and snacks.Continue reading “Adapting our adventures 💜”
- What People Don’t See After the Appointments 💜People often see the appointments. The hospital visits. The specialists. The diagnoses. The tests. What they don’t see is everything that comes afterwards. They don’t see the exhaustion that follows a day spent answering questions and hearing medical terms you’ve never heard before. They don’t see the endless phone calls, paperwork and referrals. They don’tContinue reading “What People Don’t See After the Appointments 💜”
- Growing up beside Isla 💜When people talk about Isla’s journey, they often talk about me, her dad, her grandparents or her therapists. But there is someone else who has been part of every step. Her sister, Violet. From a young age, Violet has grown up around hospital appointments, therapy sessions and a life that sometimes looks a little differentContinue reading “Growing up beside Isla 💜”
- If I could go back and speak to that mum 💜Sometimes I think about the mum I was when Isla was first diagnosed. The mum sitting in appointments trying to understand words she had never heard before. The mum desperately searching the internet for answers. The mum who was scared of what the future might look like. The mum who felt completely overwhelmed. If IContinue reading “If I could go back and speak to that mum 💜”
- Some days I still grieve 💜People often see me sharing Isla’s achievements, her smiles and all the things she can do. And trust me, I am proud of her every single day. But something I don’t talk about enough is the grief that comes alongside raising a child with complex needs. Not grief for Isla. Never Isla. I grieve forContinue reading “Some days I still grieve 💜”
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