We’re heading into a hell of a week—yet what makes this week different from all the others is something I truly want to share.
For years, we were falsely accused. People claimed that our children, and even I myself, were not actually sick. Those years left deep scars that don’t simply fade. Although that chapter ended more than three years ago, the mistrust it created within us, especially toward healthcare professionals, still lingers. Healing that takes time. But experiences like the ones we had this week… they help more than I can express.
Last Sunday, I went into an anaphylactic reaction. Thankfully, the EpiPen worked, but I had no idea how to manage my cortisol afterwards, so I called my specialist. Once again, the academic hospital refused to help me. Instead, they sent an ambulance and I was taken to the regional hospital.
And there, like always, I was met with the kindest nurses,truly, that hospital has some of the warmest, most genuine people I’ve ever met. When the doctor entered, I immediately apologized. I knew they preferred not to have me as a patient because I’m “too complex” for their system, but I couldn’t change what was happening.
Her response stunned me with its gentleness:
“Please don’t think like that. None of this is your fault. You are always welcome here. We’ll simply have to work together as a team—and maybe even consult the internet when needed—to figure out the best approach.”
That evening, I went home feeling relieved and touched by their humanity.
But the next day, I got a call from school:
Our son had gone into an anaphylactic shock and was being rushed to the hospital by ambulance.
My mind went into overdrive. The EpiPen usually works quickly for mast-cell issues, at least for us, so that gave me a little comfort. But I dreaded having to once again explain mast cell activation disorder in the context of Ehlers-Danlos syndrome. Especially knowing that our regional academic hospital dismisses it as something “in people’s heads.”
I drove calmly to the regional hospital, the one near the school. Our kids go to school farther away, in another region, so the drive felt endless.
When I arrived, I found my son pale and weak, connected to monitors, something no one had mentioned to me. My heart dropped. His mentor was still with him, offering support, and even stayed for the discussion with the doctors.
And for the first time in our lives… we did not have to fight.
Everyone knew what was happening. Everyone understood. The doctors explained everything clearly. They were gentle, compassionate, and incredibly supportive.
I didn’t even know how to react. I felt almost weightless, as if my body didn’t quite know how to handle kindness.
The next day, our son was safely back home.
People began calling us, asking if they could help, offering to listen, bring groceries, cook meals. Even caregivers and teachers reached out to encourage us.
We didn’t know what to do with it.
We’ve done this alone for more than fourteen years. And suddenly… kindness. Support. Community.
Even now, we are shocked by how everything unfolded. Still cautious, still unsure, because this kind of compassion feels foreign to us. But people keep telling us, “This is normal. This is how care is supposed to be.”
It feels strange. Beautiful, but strange.
We know we have healing to do,to learn how to trust again, how to accept help, how to breathe in moments of safety instead of bracing for impact. And we will.
This week showed us that healing is not only possible, it has already begun.