When The Doctors Can't Help and Managing the Unknown Becomes the Only Option.

What do you do when the professionals run out of answers? When the treatments stop working, and the systems you’ve relied on can’t help anymore? You learn that you, and your child, have to trust your instincts. You also learn that you can do hard things and sometimes they're exactly what you both need.

I remember standing at my bedroom window, phone in hand, speaking to my daughter’s clinical nurse specialist.

“What do you mean you don’t know what else to do?” I asked, my voice shaking.

It had never occurred to me that there might not be another medicine, another treatment, another “next step.” She wasn’t at death’s door. Her life wasn’t in danger. And yet, in that moment, it felt like the end of normal forever.

What was I meant to do now?

What was I meant to tell her?

She was an early teen then — missing school as much as she attended, living with chronic pain, quietly edged out of her peer group.

I can still feel the panic rising in my chest that day. Not only did I not know what to do, but her medical team didn’t either. After more than a decade of appointments, operations, medications, hospital stays, and missed childhood moments… here we were. And it didn’t feel like much progress at all.

And yet, strangely, that conversation was also the beginning of something new.

It was the moment I stopped living in wishful thinking and shifted into reality. I made the painful decision to remove her from school. We reshaped our lives completely. I finally acknowledged that the problem was as real as the view outside my window — and that the life I had been clinging to no longer existed.

Why am I sharing this with you?

Because if you’ve felt that same fear, grief, or despair — I want you to know you are not alone.

It’s okay to struggle. To cry. To rage. To grieve the life you thought you would have. It’s okay to make a choice that others don’t understand because neither the medical world nor the education system always has the answers.

Sometimes all you have is your instinct — and the courage to do the scary thing.

And here’s the truth: both you, and your child, can do hard things (thank you Glennon Doyle, IYKYK). Life may not be easy, fair, or joyful in the way you hoped. But it can still be full of love, strength, and unexpected beauty — if you allow yourself to give and receive them.

So today, give yourself (and your child, if needed) the gift of grace. Trust the process.

It may not be the journey you wanted, but it may turn out to be one you look back on with awe and gratitude.

If this resonates, please share it — someone else might need to hear they’re not alone today.

I’ve created a simple takeaway called “Five Anchors for When You Don’t Know What to Do Next.” It’s a short guide with reminders and grounding practices for the days when the weight feels too heavy. You can download it in the resource section of the website or drop me your email and I’ll send it straight to you. Give yourself something to hold onto when everything feels uncertain.

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