On my way
As I sit at Heathrow Airport, waiting to board my flight to Heidelberg, Germany, I’m filled with a mix of excitement, gratitude, and a little ache in my heart.
I’m heading to attend the European Academy of Childhood-onset Disability (EACD) conference an incredible opportunity to learn, connect, and grow in one of the most beautiful cities in Germany.
It’s a milestone I’ve looked forward to, but getting here wasn’t easy. This is the first time I’ve left Khadijah, and the emotions are real. Anyone who’s a parent or carer will understand that letting go even briefly is hard enough. But when your child has complex needs, it’s more than just emotional. It’s physical, and deeply personal.
Making sure her care is in trusted hands while I’m away has been stressful. My mind keeps looping: Will they understand her routines? Will she feel safe without me? Will they remember the little things her cues, her preferences, the invisible details only a parent or carer truly knows?
But I also know that this step matters. For me, for her, for the work I do and in many ways, for families like ours. Representing our lived experience and professional expertise in international spaces like EACD helps ensure that voices like ours are part of the bigger conversation on childhood disability.
So here I am deep breath taken, passport ready. I’m choosing to carry both the pride and the worry. Growth rarely happens without a little discomfort. And Khadijah, in her own amazing way, gives me the strength to do hard things.
Heidelberg, here I come!
But as exciting as this is, my heart feels heavy too. It’s the first time I’ve ever left Khadijah. That sentence alone is enough to bring tears to my eyes.
A big step forward with courage in one hand and love in the other. My heart is always with her, no matter where I go.
I’m going not just for myself, but for families like ours. For professionals and carers who walk the tightrope between personal experience and advocacy. For the chance to learn, grow, and speak up for children with disabilities in spaces where decisions are made and futures are shaped.
EACD in Heidelberg isn’t just a conference it’s a place where meaningful change can start. And I’m proud (and nervous, and hopeful) to be a part of it.
Leaving London behind… on the way to new horizons.
I don’t know what this week will bring, but I’m walking into it with open eyes, a full heart, and a suitcase packed with both purpose and love.
Heathrow Airport, London En route to Heidelberg, Germany
Here’s to growth, even when it’s hard. Here’s to showing up. Here’s to Heidelberg.
Alea Jannath and Keely Thomas, Encompass Parent Partners arriving in Heidelberg, Germany
Keely Thomas, Alea Jannath and Kirsten Prest at the conference
Meeting Elizabeth Chambers, a parent partner in research from CanChild in Canada
Alea and Keely presenting at the conference
Back to Reality — And Back to Khadijah
After a few energizing days in Germany attending the EACD Conference, I landed back at Heathrow yesterday, tired, inspired, and quietly excited. But not for what you might expect, but not for what you might expect. Yes, the conference was brilliant but what I was truly looking forward to… was coming home to Khadijah.
Being away from her, even for a short time always pulls at something deep inside me. As soon as I stepped through the front door, the “carer” part of me naturally came back online. The routines, the care, the attentiveness, not that I’m complaining. It’s part of who I am. It’s part of our rhythm.
When I got in, Khadijah was asleep. I watched her for a moment, peacefully resting, unaware I was back. This morning, when she finally woke up, I greeted her gently with a “Good morning, Khadijah.” No response, just quiet stillness. I think she was trying to process it. My voice. My presence. After all, in her world, consistency is comfort and I had been gone.
Later, while she was in the living room playing with her toy, I said softly, “Amma is home. I missed you.” And then it happened. She smiled.
That smile, wide, beautiful, and filled with knowing was everything. We hugged. And in that moment, the exhaustion, the travel, the transition between conference halls and train stations and airports… it all melted away.
I’m back to being Amma. Back to being a carer. Back to reality, our reality, and honestly, there’s no place I’d rather be.
If you would like to hear more about Alea’s lived experience - check out her podcast.