Who Am I Now? Rediscovering Yourself After Your Child’s Diagnosis
When you first become a mother, people tell you about sleepless nights, nappies, feeding, and milestones. They tell you it’s hard, but worth it. What they rarely tell you is that sometimes, motherhood completely rearranges who you are - especially when your child is diagnosed with a disability or neurodivergence.
For many of us, that diagnosis doesn’t just change our routines - it changes our sense of self. It can feel like the life you imagined, the version of motherhood you prepared for, has quietly slipped away. And in its place is a new, unfamiliar landscape.
You might find yourself asking, often in the quiet of night:
Who am I now?
Who am I, after the appointments, the advocacy, the constant vigilance?
It’s a question that echoes through the hearts of so many mothers. And it deserves space, compassion, and truth.
The Loss of the Motherhood You Imagined
When you’re expecting a baby, you imagine the future — the cuddles, the giggles, the first words, the shared Christmas mornings. You build a picture in your mind of what motherhood will look like.
And then, one day, that picture changes.
For me, it happened suddenly. Our little boy had been meeting all his milestones, laughing, babbling, following his big sister everywhere. His favourite word was trees — he loved watching them sway through the car window.
Then, one March morning in 2020 just after Covid lockdown started, everything shifted. His words disappeared. The laughter faded. The bright, connected little boy I’d known seemed lost behind a fog I couldn’t reach through.
A year later, the diagnosis came. Relief, yes - but also heartbreak. The label brought understanding, but it also brought grief for the story I thought I was writing.
You might know that feeling. The guilt that whispers, “I shouldn’t feel sad - my child is still here.” But grief and love are not opposites. You can love your child fiercely and still mourn the life you thought you’d have together.
Psychologist Dr Pauline Boss calls this ambiguous loss - a loss without closure, without finality. It’s the ache of what might have been. And Dr Brené Brown reminds us that grief over unmet expectations is valid too - it’s not pessimism, it’s truth-telling.
We recognise this in other parts of life - when a birth doesn’t go to plan, or when breastfeeding doesn’t work out. Yet when it’s about our children’s futures, society falls silent.
So let’s name it. Let’s allow the grief of what never happened: the easy playdates, the unguarded milestones, the simple childhood we once envisioned. Honouring that grief is not ingratitude - it’s healing.
Journaling prompt:
“What version of motherhood did I expect? And what would it feel like to begin letting go of that story?”
The Many Hats We Wear
Once the diagnosis arrives, your role multiplies overnight. You’re no longer just “Mum.” You’re the case manager, the advocate, the researcher, the emotional anchor - often all before breakfast.
My own week recently looked like this:
Back-to-school chaos after Easter break, a random power cut day, client sessions, charity board meetings, a drive to Cork for a talk, and a conference the very next day. I love my work deeply - but I’m also human. The exhaustion runs deep.
And I know I’m not alone in that. I hear it from so many mothers I work with: “I don’t know who I am anymore. I’m just trying to keep everything going.”
Dr Aditi Nerurkar, stress expert and author of The 5 Resets, explains that chronic stress narrows our focus - we forget what brings us joy, and even who we are. For many carers, that’s painfully true. We become masters of logistics and survival, but somewhere in the mix, we misplace our own name.
Underneath all that competence - the folders, the spreadsheets, the to-do lists - there’s often a woman who once painted, danced, laughed with friends, or sang in the car just because it felt good.
So let me say this with love:
You are not just a carer.
You are not just your child’s everything.
You are still you.
It’s okay to resent the load sometimes. It’s okay to crave a break. That doesn’t make you ungrateful - it makes you human.
Reflection:
“What parts of myself have I put down? Which ones do I want to pick back up, even for a few minutes?”
Rebuilding and Rediscovering Your Identity
The good news is this: identity isn’t something you lose forever. It evolves. You are not broken… you are becoming.
Start small. What lights you up, even for a moment? Maybe it’s a walk in the woods. Maybe it’s painting again, or journaling, or just sitting with a cup of tea while the world goes quiet.
For me, it was joining my local theatre group. Just one evening a week, doing something that wasn’t about motherhood or work, reminded me that there’s still a me beyond the roles I play.
Zoe Blaskey, founder of Motherkind, says,
“Matrescence is not about going back to who you were — it’s about becoming more of who you truly are.”
You can carry your new roles and your old joys. You can be the fierce advocate and the woman who writes poetry or dances barefoot in the kitchen.
And community helps. Surround yourself with others who get it — even one friend who understands can shift everything. Shared stories are medicine.
One of my most powerful “aha” moments came during my coaching training. When asked “Who are you?”, I answered with titles — mum, carer, consultant. But when asked who I was before children, I said, adventurous, curious, creative.
My training buddy paused and said, “Notice that before, you used adjectives. Now, you use roles.”
That hit hard. Somewhere along the way, I’d stopped describing myself as a person, and started describing myself as a function.
So next time someone asks who you are, try this instead:
“I’m a mother, yes… but I’m also someone who loves poetry, who makes a great curry, who’s learning to set boundaries, who’s tired but hopeful.”
That’s identity, redefined.
Three small ways to begin rebuilding:
Set aside 10 minutes a day just for you — no multitasking.
Write down three things you love about yourself that have nothing to do with being a mum.
Say no to one thing this week that drains you.
You are allowed to take up space in your own life.
A Closing Reflection
This shift — this deep, ongoing reconstruction of who you are — is not easy. It’s layered, emotional, and lifelong. But you are still here. Still learning. Still becoming.
Take a breath and ask yourself:
Where am I in this shift? What parts of me are resurfacing? What do I want to nurture next?
If you need support as you navigate this process, I offer one-to-one matrescence coaching designed specifically for mothers of neurodivergent and disabled children. You can learn more or book a free discovery call through Finding Motherhood.
Until then, remember this:
You are worthy of care, joy, and being known — not just as a mother, but as a whole person.
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Next step
If this story resonates, you might find my free guide The First 30 Days especially grounding — a gentle companion for those early weeks after diagnosis. Download it here →
