06/12/2026
Lately, Emma has been having some really tough days.
She repeats the same phrases. She repeats "book" over and over and over again.
Then come the meltdowns.
They remind me of her toddler years, except they come from the body of an eight-year-old girl.
The hardest part is that there is often no way of knowing what Emma wants.
I follow her request. I bring the book. I find the tape. I try again. And still, the meltdown comes.
"So it wasn't this book? It didn't need tape? What do you want?" I ask.
This happens everyday, throughout the day. And if I'm honest, there are moments when I've snapped.
I know she can’t help it. It’s not her fault. I feel guilty. I have felt shame. I have had to remind myself of grace, because what I am doing is impossible to most people. So if you’re a parent, full time carer, and you snap at your children…. take it from me, don’t beat yourself up for it and don’t let anyone judge you about it.
This is hard.
These are the pieces of life with Batten disease that hide behind my smile.
The moments people don't see.
The countless variables happening behind the scenes.
The grief woven into ordinary days.
The constant guessing.
The relentless problem-solving.
The watching and waiting.
The feeling of helplessness when the person you love most is suffering and you can't make it stop.
I want to know how to calm my daughter.
I want to comfort her.
But sometimes it isn't Emma I am trying to reach.
Sometimes it's Batten disease standing in the way. It feels like Goliath and most days, I don’t feel like a David.
I watch my daughter struggle and my heart breaks again and again.
I never knew a heart could break repeatedly and still keep going.
Batten disease has become something every instinct in me wants to run from.
But I can't.
There is nowhere to run when the thing you're fighting lives inside the child you love.
So I cling to God.
I put my trust in God on the days when I have no answers.
On the days when the future feels too heavy to hold.
There is so much pain in this journey.
I believe there is purpose somewhere in it, but I haven't found it yet.
For now, I am simply trusting that peace will come, and that a new day will come.
I am thankful Emma is still here, earthside.
I am grateful for every day I get with her because I know her days are numbered.
In one hand, I carry advocacy, awareness, compassion, and a love so deep it has changed me forever.
In the other, I carry grief, mourning, exhaustion, and the quiet realization that somewhere along the way, I lost pieces of myself.
I don't always know who I am anymore outside of being Emma's mom and carer.
And maybe that's why carers are so tired.
Not just physically tired.
Soul tired.
They're parenting, nursing, advocating, educating, coordinating appointments, managing medications, fighting battles no one sees, and trying to hold everything together on broken sleep.
Their nervous systems are constantly on alert.
Their bodies are begging for rest.
Their hearts are carrying grief while their hands continue caring.
And still, they get up tomorrow and do it all again.
Not because they're strong all the time.
But because love leaves them no other choice.
I might be an exhausted and heartbroken carer, but I’m rooting for every parent out there that is facing uncertainty. 🫂
