So... I haven't written much about this because we're still putting the pieces together, but much of my family's food restrictions are driven by #EhlersDanlos
- the connective tissue disorder I share with my boys - even the one I adopted! It's a difficult condition that I promise I'll write about more, and one that's characterized by chronic pain.
Tonight, we're piled in the minivan on the way to meet a top specialist & pain management doc in Rhode Island, and all the sudden there were both boys, 6 & 11, shading in the body diagrams to show everywhere they have pain.
Getting a child to articulate chronic pain is hard - and it's half the battle: of trust, of connection, of validation and of getting the medical help they need to heal. Most kids with EDS grow up being dismissed for their ""phantom" pains, and had he gone to most any other family our little boy would have too - just as I did. But seeing his face in focused attention to get the picture just right, I couldn't help but feel like our minivan is suddenly a sacred space.