Parenting requires a lot from us: love, patience, sacrifice, and resilience, to name a few. Add to that the moments when we must sit with our children and talk through friendship drama, family conflict, frightening things happening in the world, or even their changing bodies. Just thinking about those conversations can leave a pit in our stomachs, if we’re brave enough to approach them at all.
Now take those conversations and layer on a rare disease.
If everyday tough talks are like an exam in a 200-level course in Parenting, the conversations we have with our JM kids can feel like defending a dissertation we never signed up to write.
I remember one moment with my daughter many years ago. She was eleven, and her disease was largely uncontrolled. She missed more days of school than she attended. On her best days, she could manage only a few hours before exhaustion and pain forced her home. Fifth grade should have been about friends and laughter, but instead, her world shrank to doctor visits, medication trials, and bed.
That was also the year of The Big Trip; an overnight stay at a wilderness camp that the fifth graders had anticipated for years. It was a rite of passage. A celebration of independence and the end of elementary school. And there was simply no way she could go.
I waited as long as I could to tell her; hoping for improvement, praying for a miracle, even daring to wish (though I’m not proud of it) that the trip would be cancelled so she wouldn’t have to carry yet another disappointment. But the turning point never came.
So, I sat on her bed, wrapped my arms around her, and gently explained that her body just wasn’t strong enough, yet. That right now our focus was on getting her well. That there would be other adventures, when her body was ready, and she could fully enjoy them.
She cried. I held her. I wiped her tears while choking back my own. I validated her pain even as I silently struggled with my own grief and anger at this disease that had stolen one more moment from her childhood.
If you’re reading this and nodding because you’ve been there, here are a few strategies for those unavoidable conversations:
- Lead with presence. Forget perfect words, your child needs you, calm and compassionate.
- Tell the truth, simply. Clarity builds safety and trust.
- Honor every feeling. Tears, frustration, silence, none need fixing. Just hold space for them.
- Offer hope without dismissing reality. Acknowledge what is hard and what is still possible.
- Reaffirm what never changes. Your love is constant, no matter what.
Fast forward eighteen months: new school, new medication, better disease control, and a new chance for an overnight trip. Three days out of state. It took a ton of planning and coordination, but she went. Her beaming face stepping off that bus? Priceless.
Hard conversations are part of this rare disease life. But when we show up for them, and for our children, we are modeling courage in its truest form.
-Ronda Thorington, February 2026
