I haven’t talked much about the actual experience of volunteering in refugee camps while we were in Greece. I think it’s partially because the words haven’t fully come yet and partially because it felt like a sacred experience and I’m afraid if I let it out into the world it will somehow leave me. However, I’m starting to realize that it doesn’t disappear if I share it, it just spreads out and the love and inclusion grows.
This is just ONE story. This mother is the definition of strength and perseverance. Her twin sons are living with a genetic condition that took the life of their eldest son at the age of 15. All three of the boys developed the same neurological symptoms at the age of 6, they functioned normally up until that point. This condition has caused them to have frequent seizures, loss of muscle strength and control, they are now non-verbal and are constantly twitching or having muscle spasms.
They also have a son who is 5. Imagine the fear that they live with, not knowing if this son will also develop this same condition which claimed the life of their oldest son and completely morphed the lives of their other two. I simply can’t imagine what they go through daily caring for these boys in a single room in the refugee camp. Let alone what they went through just to get them to safety.
I think about them often and wonder…what would their lives be like in the U.S.? I’m sure that they would have teams of professionals involved in their care, physical therapy, occupational therapy, the best of the best specialists, genetic testing, etc etc.
It does no good to wonder.