My Journey with Sholah: Finding Strength and Filling My Cup

Hello, my name is Joanne, and I care for my daughter, Sholah, who is now 26. I have cared for her since the moment she was born, just as any mother does. But very early on, it became clear that Sholah would need extra care.

She was born at 37 weeks, weighing a healthy 6lb 11. However, within 24 hours, she turned blue, stopped breathing, and went stiff. She was rushed to Special Care, where these frightening episodes continued. Doctors later diagnosed her with epilepsy. We also discovered that her left kidney wasn’t functioning, and her left eye wasn’t receiving light into the retina.

As a new mum, my world turned upside down. I felt like I’d been hit by a bus. My head was full of questions—what went wrong? Was it something I had done? Something I’d eaten? I blamed myself over and over.

After two weeks, we were finally allowed home—but not before learning baby resuscitation. Sholah needed to be on an apnea monitor 24 hours a day. Every time it went off, it felt like my heart stopped too. I couldn’t return to work. Hospital appointments were relentless, and our lives became focused entirely on survival.

Coming to Terms with a Different Path

As months turned into years, it became clear that Sholah wasn’t going to meet her milestones. She never walked, talked, or played with her sisters in the way I had once imagined.

I found myself grieving—not for a child I had lost, but for the life I had expected. I grieved the hugs, the “I love yous”, the school days, even the chance to hear her voice. I wondered endlessly: what would her favourite food have been? Would she have gone to university? Got married? Had children? All of these dreams were taken away.

At 26, Sholah relies completely on me and her dad. We support her with feeding, washing, changing, medication, and getting out into the community. But she is also a happy, smiley, giggly young woman who loves going to the day centre and socialising. Over time, I have learnt to focus on these positives. Life is different from what I once imagined, but it is still full of joy.

Finding Release Through Yoga

For a long time, I struggled to look after myself. But eventually, I discovered yoga at Barefoot Birmingham. This became my release. Yoga moved my body, calmed my mind, and gave me space to just be Jo—not only Sholah’s mum and Carer.

The Carer sessions with Kam at Barefoot are amazing. They help you reflect on your caring role, build flexibility, and strengthen mental wellbeing. During Covid, we connected online, and it was the only thing that made me feel whole again.

We also meet other Carers during these sessions, sharing honest conversations about the pressures we face. These moments allow us to refill our cups—because when your cup is full, you have the energy and clarity to care for your loved one. I honestly don’t know what I would do without this service.

In January 2024, I took the big step of starting the Barefoot Yoga teacher training course. By July, I had passed! I am so proud and hope to give something back to the people I teach.

Hopes and Fears for the Future

Of course, I still worry about the future. As my husband and I get older, questions weigh on my mind: who will care for Sholah? Will she be loved as much as we love her? Will she be happy? These are big uncertainties, but I try not to dwell on them too much. Instead, I take each day as it comes.

A Message to Fellow Carers

If you’re a Carer reading this and feeling overwhelmed, please remember—you are not alone. We are not super-humans, even if we think we are. We must prioritise ourselves first, because if we are burnt out how can we care?

Reach out. Find support. Fill your cup.

Share Your Story

If you’d like to share your Carer journey and inspire others, please contact info@forwardcarers.org.uk.