TOTALLY OUT OF MY COMFORT ZONE!
Welcome to My Weekly Blog
Hello and welcome. 🌿
This space is where I share my journey as a mum to my beautiful daughter, A, who has profound and multiple learning disabilities. Our story is one of challenges and heartbreak, but also of resilience, love, and moments of joy that shine through even the darkest days.
I write here because I know how lonely this path can sometimes feel. I write to connect with other parents, families, and anyone who wants to understand more about what life is really like when your child’s world doesn’t follow the usual path.
There are parts of our story I will share openly — the struggles, the milestones, the fears, and the triumphs. But there are also parts I cannot put into words, even after all these years. Like grief, some experiences never truly leave you; they simply become something you learn to carry. I want to be honest about that too.
This blog is not about perfection or having all the answers. It’s about real life — the messy, exhausting, beautiful, overwhelming, love-filled life of raising a child with complex needs.
If you are a parent walking a similar journey, I hope you’ll find comfort here. If you are a friend, family member, or simply someone wanting to learn, I hope you’ll leave with more understanding.
Most of all, I hope this space reminds you that you are not alone. 💛
Thank you for being here.
The Beginning of Our Journey with A
My pregnancy with A was far from easy. There were many complications, and I spent much of that time worrying, hoping, and wondering what the future would look like.
Despite everything, A came into this world through a normal delivery. She was a big baby — 9lb 12oz — and from the very start I noticed what looked to me like deformities. As her mum, my instincts told me something was different, even before the doctors said anything.
During pregnancy, she had been estimated to weigh under 5lbs. An intensive care cot had even been prepared for her arrival, because the expectation was that she would need immediate support. The doctors could hardly believe their eyes when she was born so much bigger than expected.
It turned out that A was a diabetic baby. My diabetes had gone undetected during my pregnancy — this was 24 years ago, when things were very different from today.
When we got to the ward, A appeared limp to me. I called a nurse, who told me that A wouldn’t take a bottle, but put it down to the half dose of pethidine I’d been given, saying it was just making her sleepy.
But a mother’s instinct is a wonderful thing — and when you know something is wrong, you have to shout to be heard. That’s exactly what I did.
Within minutes, teams from the intensive baby unit rushed in and whisked A away for further treatment. It turned out her blood sugar was just 1.2 mmol — dangerously low — and she was, in fact, in a coma.
The frightening part was realising that if I hadn’t spoken up again and again, things could have been very different. That still shakes me to this day.
The next morning, I walked down to the special unit, still shaken but determined to see my baby. I told them who I was and asked how A was doing.
The nurse looked at me and explained that they had done a brain scan. And then, without warning, she told me they had found multiple brain cysts.
At that moment, my world stopped. It crumbled. No one had even told me that a brain scan was going to take place — and suddenly I was being hit with news that changed everything. My head was spinning. What was happening to my baby?
Following on from being told about the brain cysts, my world became darker and darker. I found it so hard to comprehend what was happening — not just to my baby, but to our whole family.
Feeding became a major struggle. I’ll never forget one nurse telling me that A was one of the worst babies to try and feed. Those words stuck in my head, echoing over and over, making me feel even more lost and knowing in my heart that this was just the beginning.
My thoughts spiralled constantly. I would sit on the ward, empty-handed, while other mothers cradled and fed their babies. The reality of being there with no baby by my side was crushing. And the thought of going home without her was even more harrowing — something I could hardly bear to imagine.
Looking back now, 24 years on, I realise that this was the start of my postpartum depression. At the time, I didn’t have the words for it. All I knew was that the worry consumed me, day and night. The fear of what lay ahead — the unknown future for A, for me, for us — took over every part of my life.
I felt broken, overwhelmed, and so desperately afraid. Yet even in those dark moments, a small part of me held on — the mother’s instinct, the fierce love, the part that whispered: keep going for A.
Adjusting to a New Reality
A’s consultants started to describe A as “dysmorphic.” I had never even heard the word before. It meant that there were many small details about her body that suggested she might have other underlying difficulties.
Hearing that word made my world change again. It wasn’t just about getting through the days in hospital anymore — it was real, it was permanent, and it meant our lives were going to be very different to the future I had once imagined.
From that moment, the priorities I once held onto simply disappeared. Work, which had always been such a big part of my life, no longer had any meaning. This was not like me at all. After my other two children, I had returned to work quickly — after just 5 weeks with ‘L’ and 11 weeks with ‘C’.
But with A, everything changed. Nothing else mattered anymore. My life became centred on her — her health, her care, her future. The version of myself I had been before — the one who balanced babies, work, and life so quickly — was gone. In her place stood a mother who had to fight, to adapt, and to find her way through unknown territory.
It was the beginning of a new reality — one I hadn’t chosen, one I hadn’t expected, but one that I had no choice but to embrace.