Life can be incredibly unpredictable - especially when our children’s health is on the line. My own journey started when my son suffered a stroke at just two years old. It was a whirlwind of “what ifs” and emotions I’d never expected to face. As a family, we even joined a research study at Great Ormond Street Hospital, hoping our experience might help ease the path for other families. Nearly 30 years on, medical care has improved dramatically, offering real hope that simply wasn’t available back then.

The Emotional Rollercoaster

There were plenty of nights spent questioning:

• Who is to blame?
• Could I have done more?
• Why did this happen to my little one?

I remember my grandad, utterly heartbroken at the thought of his great-grandchild suffering at such a young age - so much so that he sometimes wished it had been him instead. His deep sense of injustice is a feeling I still carry with me, a reminder of just how raw and real these emotions can be.

A Glimpse of Hope

Great Ormond Street stands as a powerful symbol of how far medical care has come over the last three decades. I recall, just last year, a conversation with a senior figure at my local hospital who explained the remarkable advances in stroke treatment and the significantly improved outcomes for survivors. It's somewhat comforting to think that, in a small way, my son’s early struggles - through sleep studies, tonsil removals, medication testing, and more - may have contributed to the improvements we see today.

When Frustration Gets the Better of You

There were times when anger would creep in - anger at the situation and, at times, even at those who haven’t faced similar challenges. I know it’s hard to admit, but these feelings are a natural part of processing deep hurt. They aren’t about blaming anyone; they’re simply part of the journey. Sometimes, just talking it out with a friend or joining a support group makes all the difference.

Making the Best of What We’ve Been Given

Over time, I’ve learned that while we can’t change the hand we’re dealt, we can choose how to play it. Accepting our past - with all its scars and imperfections - is not about giving up; it’s about finding the strength to move forward. Every milestone he achieves and all the things he does that defy the expectations once set for him, reminds me that even in our darkest moments, there's been undeniable progress and hope.

Looking After Yourself Matters

If you're on a similar path, please remember that taking care of yourself isn’t a luxury - it’s essential. In fact, it's perfectly okay to be a little selfish sometimes. Not in a way that harms others, but in recognising that if we don’t put ourselves first from time to time, we risk losing ourselves entirely. Here are a few things that have helped me, and might help you too:

• Talk It Out: Whether it's with a professional or a trusted friend, sharing your feelings can make a big difference. Sometimes, simply voicing your worries and frustrations is a step towards feeling better.
• Carve Out “Me Time”: Even if your day is packed, try to find small moments just for you - a short walk, a quiet cup of tea, or a few minutes of reading. These little breaks can help you recharge and maintain your emotional well-being.
• Embrace a Bit of Selfishness: It's okay to prioritise your own needs occasionally. By taking care of yourself, you ensure that you're in the best position to care for your child and your loved ones. Remember, self-care isn’t about neglecting others; it’s about replenishing your own energy so you can be there for them.
• Stay Connected: Chat with other parents who understand what you’re going through. Sharing experiences and advice with someone who truly gets it can be incredibly reassuring.
• Keep Up with the Latest: Medical science has come a long way, and staying informed about new treatments and interventions can give you a sense of control over your situation.
• Reach Out: There are plenty of local charities and support groups ready to help. I've even put together a page on my website with links to some very useful resources for families facing similar challenges.

Taking time to look after yourself isn’t selfish - it's a necessary part of the journey. When you invest in your own well-being, you’re better equipped to meet the challenges ahead and care for those you love.

We’re in This Together

Parents and carers of children with illnesses or disabilities deserve every bit of support available - whether that’s through counselling, therapy, or community initiatives. When we look after ourselves, we’re in a much better position to care for our children and loved ones. Remember, asking for help isn’t a weakness; it’s a sign of strength.

I’m sharing my story in the hope that it resonates with you. It’s not an easy journey, but by taking small steps to care for ourselves and supporting each other along the way, we can create a community where hope and understanding flourish. You’re not alone - and every bit of self-care makes you that much stronger for your child and your family.